Written by Jessica's husband, Ed.....
Wednesday, August 8, 2007
Greetings,
Jessica has had ups and downs since my last e-mail. She usually has about two good days for every bad day so we can’t complain.
She had her second Taxol chemo treatment yesterday at Fox Chase. The day went fairly smoothly and she feels great this morning. So good that she has become Super Jess. Before 10 a.m. this morning, she has downloaded pictures from our camera, gotten the garbage together, folded towels, and focused on straightening up the house. She has talked about going to the pool today and visiting a bookstore. (Don’t worry. I’m trying to keep Super Jess in control.) One of the impacts of the chemo is that Jessica needs to deal with the associated hair loss. She will probably shave her head today or tomorrow since the hair loss has increased over the last couple of days.
The treatment plan depends on her tolerance for the Nexavar. Tonight, she will start the Nexavar at 400 mg and this will be taken once per day. This doubles the dose that she took through last week. She is currently taking 2 mg of Decadron (the steroid) twice per day. Provided that she does not get a general rash by Friday, the Decadron will be lowered to 2 mg once per day starting on Saturday. If she still has no rash or a controllable rash, she will stop taking the Decadron on Monday. If the Nexavar works for her, she will continue to take the 400 mg.
Jessica has had some tough times during the last week. Her back pain returned toward the end of last week. It was not as extreme as before and was confined to her lower back. Twice it was bad enough that she had to take Percocet. These were her first Percocet in over two weeks. I am happy to report that her back pain disappeared after the chemo yesterday.
Recently, nights have been the most challenging. She had trouble sleeping Wednesday, Thursday, Friday, and Saturday night. Saturday night was really bad and we got minimal sleep. Sleepless nights normally result from the back pain and general restlessness, but she has also had bad heartburn a couple of nights and some minor constipation issues. Thankfully, she slept fairly well last night after the chemo.
Her next CT scan will be in the beginning of September. So for the time being, our crude assessment of the cancerous nodules is the only information available. (It should be noted that one of us is a little obsessive about measuring the lumps and bumps.) The report on the nodules is a mixed bag. The spots on her upper left leg have clearly grown. Certain spots, such as those on her scalp, clavicle, and right bicep, have gotten smaller. Unfortunately, there are also new pea-sized spots including one on her neck and three on her back. We just hope that the Taxol and Nexavar are first focusing on the major spots – the one pressing on the superior vena cava, the liver nodule, and the small lung spot.
Yesterday, we spoke to a fellow patient who had tried numerous treatments after he was unable to tolerate the AG drug last summer. His situation sounded somewhat similar to Jessica albeit that Jessica’s cancer is more widespread. He received a bad CT scan and was given approximately two months to turn things around. That was in February when he started the combination of Taxol and Nexavar. His next two CT scans showed noticeable reduction and he continues on this treatment six months later. Our conversation helped to raise our hope and did wonders for Jessica’s psyche.
I cannot stress enough that we are clearly not “out of the woods” and she still has a long way to go. To our knowledge, the prognosis has not changed. The statistics would say that it is not likely to get beyond two to three months. However, Jessica is very determined and currently has a great mental state. We are very appreciative of the good days that she has experienced and we are striving for the miracle cure. She did so well at the beach last time that we are going to book another week very soon. No one will complain if the treatment involves Taxol, Nexavar, and Ocean City, New Jersey.
Jessica would love to visit and talk with each of you. She has done a good job of pacing herself to build her strength. Thank you again for your patience. Jessica feels lifted up by your prayers, thoughts, and support. She enjoys all of your cards and e-mails and we are all happy to see her smile more often.
All of our best,
Ed
Monday, July 30, 2007
Hello Everyone,
We want to thank you for the power of your prayers, thoughts, and support. Amazingly, Jessica experienced a dramatic improvement after Friday, July 20th.
At the same time, we still do not want to be overly optimistic. Jessica has long odds to overcome and, to the best of our knowledge, there has not been a substantial reduction in the cancerous nodules.
Jessica started the Nexavar on Friday, July 20th and a rash appeared on her upper chest and arms the next day. In addition, she had redness on her cheeks from the Decadron (the steroid). The rash increased on Sunday, but started to subside during the afternoon of Monday, July 23rd when we had an appointment at Fox Chase. That night, she had very bad stomach cramps. These persisted through Tuesday morning.
By Tuesday afternoon, she felt great. She did not have any pain and her energy level was better than it had been in many months. So she was determined to get our family to the annual beach trip with her parents.
We left for the beach early on Wednesday, July 25th and just returned home this afternoon. Jessica was AMAZING! She went to the beach every day for short stays. She got in the water up to her knees a few times and took a number of short walks. There were at least two days where she was on the beach for more than three hours. Each of her two trips to the boardwalk lasted more than three hours. She ate pizza twice and ice cream most days. She did have nausea on Saturday night but we are attributing that episode to stale movie theatre popcorn. She also had some nausea this afternoon but we are hopeful that we can control that by tomorrow morning. Jessica did not get good sleep at the beach but was riding such a high that it did not hold her back. She is very proud that Justine and Eddie accomplished every one of their goals for the beach. (For the record, I went miniature golfing seven times in five days including three times the first day.) In summary, Jessica was always smiling and enjoyed a spectacular time.
The next step is to reduce the 4 mg Decadron from twice per day to once per day since she has been doing so well and the rash is negligible. If she continues to do well, we will probably up the Nexavar from 200 mg to 400 mg after her next Taxol chemotherapy, which is scheduled for Tuesday, August 7th.
We are very thankful that she enjoyed a great beach vacation and has gained energy. At the same time, we understand that there is a long way to go and the published odds are not in our favor. I cannot stress enough that both Jessica and I are still very determined to beat the cancer and to get to a miracle cure. The beach experience was a miracle and we attribute it to each of you.
We need to continue to limit calls and visitors in order to keep building Jessica’s strength. We appreciate your understanding and patience.
Thank you very much for your heartfelt e-mails, cards, and support for the Race Against the Sun. With your help, the Race Against the Sun continues to flourish. If you get a chance, please check out the additions to the website at www.RaceAgainstTheSun.org including a number of media items on the press room page.
Most importantly, please continue to keep Jessica and our family in your thoughts and prayers.
All the Best,
Ed
Friday, July 20, 2007
Hello Everyone,
We have not had a lot of good news lately but despite the challenges Jessica and I are still fighting. We are still determined to get to a miracle cure.
Thankfully, the scheduled timing for the CVX-045 clinical trial was accelerated to Tuesday, July 17th. As part of the eligibility tests, Jessica had a CT scan on Monday, July 9th. We received the results that day and they were not good. As we expected, all of the tumors had grown and new nodules were present. Unfortunately, the scan also showed a nodule measuring 3.4 cm x 2.4 cm on the liver, a 4 mm spot and fluid on the right lung, and a tumor that is resulting in significant compression of her superior vena cava. (For those outside of the medical field, the superior vena cava is the main vein that brings the blood back from the upper portion of the body.) None of this was welcomed news. We inquired about the timeframe and learned that we had a few weeks to turn the tide because of the potential rapid expansion of the cancer.
In the meantime, Jessica was becoming weaker and experiencing more pain. She did make it to the pool for a couple of hours for Justine’s 10th birthday party on Friday, July 6th but has not been able to do much else outside of the house other than attending medical appointments. She also became very nauseous and had trouble eating starting the weekend of July 7th and July 8th.
On Thursday, July 12th, we met with Fox Chase to continue with the eligibility testing. Jessica was quite weak and curled up on the floor once we arrived in the room from pain. The team at Fox Chase was great. They got her in a chair and made her comfortable. They upped her Fentanyl to 75 mg and prescribed a number of medications to combat the pain and the nausea. Since we got back that day, my sister, Teri, has been living with us and has been huge in helping out. Our priority was to get Jessica in top shape for the start of the trial on Tuesday, July 17th. We needed to combat the pain, to rid her of the nausea, to get her to eat better, and to gather as much energy as possible.
Amazingly, Jessica’s strength enabled us to accomplish all of our goals. She conquered the nausea late Thursday night, managed the pain reasonably, ate better each day, and felt better each day from Thursday, July 12th through Tuesday, July 17th.
On Tuesday, July 17th, she did get sick in the car on the way to Fox Chase but we attributed that to taking two Percocet pills on an empty stomach. Just when she was about to get the DCE/MRI on the liver (the last step before the infusion), we got sideswiped. She was not able to get in the trial because she had too much protein in her urine that morning. Because of the fear of too much strain on her kidneys, the next step was to do a 24 hour urine collection. We had gotten up at 5am so it was a fairly long and disappointing day when we arrived back home at 2pm with another day of waiting ahead of us.
Jessica continued to be a trooper. Her best chance of passing the test was to remain hydrated. With a “little” coaxing, she drank considerably more fluids than she had for quite some time. The 24 hour test ended at 11am on Wednesday, July 18th when the jug was sent to the lab. The test came back around 12:15pm and there was 504 mg of protein in the urine. The limit was 500 mg. The company running the trial and the administrator overseeing the trial at Fox Chase considered a waiver. They revisited all of the evidence since there were other borderline items in her blood work. I stared at the clock until 2pm when a team of people arrived to inform us that she was not going to get in the trial.
At that point, Dr. Haas suggested that we could try Taxol, a chemotherapy infusion, or a combination of Taxol and Nexavar, the drug that gave Jessica the rash. Both of these have worked for Jessica in the past. She received Taxol last summer while she was taking the AG pill and during that time the tumors decreased. Recently, she took Nexavar and the tumors appeared to decrease before the rash became unbearable. To combat the rash, it was suggested that she start with 200 mg per day instead of 800 mg per day and that she also take Decadron, a steroid, while she was taking the Nexavar. We discussed the fact that some people would try to cease treatments and just manage the pain at this point but that is not Jessica. Jessica agreed to try the combination and the pre-meds for the Taxol chemotherapy were started.
We asked Dr. Haas about the timeframe. She reiterated that the typical timeframe would be a few weeks if no treatments took hold. If the Taxol or a combination of Taxol and Nexavar were successful, the statistics suggest that we could add two to three months to her lifespan. Dr. Haas has seldom seen patients recover from the advanced stage of disease that Jessica has. We have been in the fight for a miracle and that is where we are. We need a miracle. You must remember that Jessica has always beat the odds and is a fighter. We are both still very determined to get to the miracle cure.
Jessica received multiple drugs as part of the chemotherapy on Wednesday. She was totally out of it and spent the better part of three hours with her mouth wide open and her eyes wide open staring at the ceiling. There were times that her eyes were rolling around. It was very difficult to watch. I kept trying to get her to relax but she refused. During the three hours, she only uttered three words to me. When my face almost touched her face as I was trying to get her calm, she said “You’re too close”.
After the drugs started to wear off, she faded in and out of the vegetable-like state. When we got home, she got dinner, sat on the back patio with the neighbors, and had a 15 minute conversation like it was just another day. It was an amazing turnaround. She did slip back into the drugged state a few times overnight but woke the next morning (Thursday) in great spirits and pain-free. She would sleep for a few hours at a time yesterday. Then she would wake up and be all smiles and coherent and feeling better than she had in a month. She even wrote checks, got the laundry together, and straightened up the house.
Before we could consider taking the Nexavar, the next step was to get a brain MRI to make sure that there was no evidence of disease on the brain. First thing on Thursday, Jessica scheduled her own brain MRI for 10pm at St. Luke’s in Bethlehem last night. A few hours ago, we got the good news that the brain had no evidence of disease. Therefore, she is clear to take the Nexavar and has decided to start taking the 200 mg dose this evening. Again, this is ¼ of the daily amount that she took previously. Hopefully, the lower dose will not result in a bad rash. She has slept quite a bit today and the pain has not been bad.
Jessica wants to visit and talk to everyone but she realizes that she needs all of her energy to fight the battle. I appreciate your understanding that I have another difficult role as a gate keeper for Jessica. If I could ask, please share news among your circles if I do not have a chance to e-mail. If you need to communicate with us, I’d prefer that you e-mail me instead of calling the house while we get her back on track. Honestly, I might not be able to get back to you but I will try to share your thoughts with her. Jessica still loves cards over gifts so keep sending the cards with the warm wishes.
It was not easy but we have discussed everything with Justine and Eddie.
It goes without saying that we need your prayers and support. We have been able to get this far with your love and support. As I have emphasized, we are determined to get to the miracle cure.
All of the best from our family to yours!
Ed
Wednesday, July 4, 2007
Happy Fourth of July.
Jessica was accepted into the CVX-045 clinical trial pending the results of physical tests, such as blood work and scans, over the next couple of weeks. If all goes well with the tests, she will start on Monday, July 23rd since this is the earliest open slot. Waiting for almost another three weeks is difficult but Jessica is exhibiting more patience than me. Unfortunately, we have noticed about 5-10 new spots over the last couple of weeks including a tiny one on her scalp. Thankfully, most of the new spots are small. In addition, some of the existing spots on the skin surface have grown – the right bicep spot is back to its size pre-Nexavar, one spot on her upper left leg has grown a good amount, and a new spot on the back of her right leg is of decent size.
From now until July 23rd, the priorities are to control the pain and to hope that the growth is as little as possible. We cannot control the growth but are trying to combat the pain. The back pain has returned. She has approached “caged animal” pain levels during the mornings of Sunday, Monday, and Tuesday this week, but we were able to keep it below that threshold. Jessica is continuing with Ambien CR to sleep and Percocet and Motrin to combat pain. In addition, the dosage of the Fentanyl patch was just increased yesterday from 25 mg to 50 mg.
Jessica lacks energy but continues to do quite a bit. Since my e-mail of June 21st, she attended two of Justine’s swim meets, went out to dinner, saw a movie, and made it to a Fourth of July pool party and picnic on Sunday (for 6 hours).
The best part of the last two weeks was clearly the lemonade stand that the neighborhood kids ran on Saturday, June 30th. The lemonade stand was a huge success and we had quite an exciting time this past weekend. On Friday, Ed Hanna, the chief meteorologist at the local TV station (WFMZ Channel 69), gave the weekend weather report from the lemonade stand at 5pm. He interviewed Jessica and Grace Bova, who had the idea for the lemonade stand. Ed made a personal plea to drive the crowd to us at the end of that segment and then followed that up with another pitch on the 10pm newscast. WFMZ even included a link on the upper right portion of their website that linked to our website on Friday and Saturday. On Saturday, the local radio station, B104, made an extended announcement about the stand in the morning. As lemonade was being served, Jessica, Grace, and the neighbors coordinating the 5K race were interviewed by the East Penn Press, a local paper. That article appeared in the weekly edition that was published on Wednesday. The kids caught the entrepreneurial spirit and kept the stand open until 4:30pm. Most importantly and most amazingly, the kids raised over $4,200!
We are happy with how the Race Against the Sun is progressing. Please visit our website at www.RaceAgainstTheSun.org and check out the media coverage on the lemonade stand that we have started to post on the Press Room page.
Please keep Jessica and our family in your thoughts and prayers. Jessica continues to thrive on your love and support.
We send our best!
Take care,
Ed
Thursday, June 21, 2007
Hello All,
Soon after my last e-mail on June 4th , the Nexavar rash went out of control and became so bad that Jessica stopped taking the Nexavar after the morning dose on June 5th . The rash was very severe and spread throughout her body. The most troublesome aspects were that her face was swollen and very red and that the rash spread to her tongue . We returned to St. Luke’s on Thursday, June 7th . St. Luke’s was very supportive and had the right focus – priority number one was to get rid of the “ over the top ” rash. Jessica started taking Decadron , a steroid, and the discomfort and itching associated with the rash disappeared over the next few days. The rash gradually paled and subsided but she still has signs of the rash today.
The rash experience affected Jessica both emotionally and mentally as well as physically. For about a week, she would consistently sob whenever she spoke on the phone or had visitors. She had a number of tough days where she was drained.
Interestingly, the Nexavar appeared to have good results. The nodule on her bicep shrunk to less than half of its size, the leg pain went away, and amazingly she did not have back pain from Wednesday, June 6th through Friday, June 8th . This was the first time that she had zero back pain since January.
Therefore, I tried to build her up mentally to take Nexavar at a reduced dose despite the rash. We met with St. Luke ’ s on Thursday, June 14th to discuss next steps. She was elated and I was crushed when the recommendation was to not go back on Nexavar. Dr. Agarwala had said that Jessica ’ s rash was the worst that he had ever seen and that he had given Nexavar to a substantial number of patients. He was reluctant to put her back on Nexavar for fear of a worse reaction. He recommended that we speak to Dr. Haas at Fox Chase regarding clinical trials as well as considering Temodar on a different cycle or an infusion of a similar drug, DC TI.
We met with Dr. Haas today. She offered three phase one trials and the frontrunner is a trial involving CVX-045 which is an antiangiogenisis drug (a Thrombospondin-1 Mimetic, Antiangiogenic Agent). For all of us outside of the medical professional, it is a drug in the same family of drugs as AG and Nexavar – two drugs that have had positive results for Jessica. Dr. Haas’s experience to date suggests that this trial tends to not have detrimental side effects. We are crossing our fingers . It is likely that Jessica would begin this trial in mid-July and it involves an infusion at Fox Chase once every week. There is still a possibility that she will not be accepted in the trial because of the location of certain nodules near blood vessels. We should know definitively on Wednesday, June 27th.
Unfortunately, her back pain and leg pain have returned but so far it has been tolerable for the most part. She has continued with Percocet at night along with Motrin during the day. This has been supplemented with a pain patch , Fentanyl, that lasts three days at a time.
As many of you know, Jessica was determined to attend the dance recital of our daughter, Justine, on Saturday, June 16th. Things were not working in her favor when she expended all of her energy to fight the rash and the mental and emotional battles. Still, Jessica somehow finds strength and pushes forward. I am happy to report that she made it to both three hour recitals and went out to lunch and dinner that day . She was gone from home for 11 hours straight . This is remarkable considering that she had only left the house for doctor appointments during the two previous weeks.
Thankfully, Jessica has improved mentally and emotionally over the last week. She has been able to do a little more and has had more pockets of time where her energy level is okay and her back pain is manageable.
The Race Against the Sun continues to move forward thanks to everyone’s support. Jessica appreciates all of the love and support that she has been receiving. Our family has been blessed in many ways.
We wish all the best to you and your families.
Take care,
Ed
Monday, June 4, 2007
Hello Everyone,
Jessica has had a couple of rough weeks.
After some prodding by me and some others, we accelerated the Nexavar start date to Friday, May 25th . This was combined with Temodar on Monday, May 28th . She took her seventh dose of Temodar last night and will now have one week off from Temodar.
Her back pain during the week of May 21 st was real bad and we experimented to find the right combination of drugs to combat the pain. Her worst hours of the day are from 1am to 9am and the right combination of drugs has been difficult for us to determine in a groggy state in the middle of the night.
After she started taking the Temodar on the 28th, the back pain flared up substantially. She experienced extreme pain from 9:30pm to 11:15pm on Monday, May 28th and from 5:30am to 7:00am on Tuesday, May 29th and then again from 6:00am to 7:30am on Wednesday, May 30th. Jessica has appropriately classified that pain as “caged animal pain”. The pain is so bad that she cannot find a comfortable spot and it is very difficult to calm her down. Fortunately, this “caged animal pain” has not returned since Wednesday morning. Although the back pain persists, it has become manageable.
Fatigue and lack of energy have really drained her spirits during the past two weeks since she is not able to accomplish as much as she would like during the day. We are trying to convince her to focus on getting better but she continues to try to do whatever she can .
It was only a matter of time before the rash from the Nexavar started and it arrived on Saturday, June 2 nd . Interestingly, the beginning stage of the rash was focused on the melanoma spots – her neck, her bicep, and other spots under the skin – and wa s spread out on her back. We take this is as a good sign. In addition, she has had increased sensitivity on each melanoma spot consistent with the other Temodar weeks. This sensitivity is most pronounced on the neck nodule and the right bicep nodule.
It is very challenging to endure and to manage all of the drugs especially during the week of Temodar. In the evenings, she has been taking Zofran for nausea, Ambien CR to sleep, Temodar as the chemo drug, Nexavar as the melanoma drug, Percocet for pain, and Senekot for constipation. To lessen the impact from the multiple drugs, she takes one drug every 15-20 minutes so the process can take 1 ½ hours or more.
Today, Jessica felt some shortness of breath and some swelling in her abdomen along with pronounce d fatigue and weakness . Also, t he rash had spread substantially from the day before. It is now all over her back and on her face and neck and arms. Based on her symptoms, we called St. Luke ’ s and they had us come into the hospital. With the swelling and discomfort in the abdomen, there was concern that she might have pancreatitis. Fortunately, her blood pressure was good (102 over 78), her blood work came back good, and additional blood tests confirmed that her pancreas fluids were okay.
She continues to thrive on the love and support from everyone. She really enjoys the cards and notes of encouragement the most. She was especially touched by the prayer session that the immediate neighbors held after the most recent CT scan.
She is also proud of how well the Race Against the Sun 5K Walk and Run is progressing. She wants to maintain the positive momentum so keep up the good work with the sponsors, donors, participants, and volunteers.
We thoroughly appreciate the thoughts, prayers, and support and send our best to you and your families.
Take care,
Ed
Monday, May 21, 2007
I have good news and not so good news. I like to end with good news so I’ll start with the not so good news.
Jessica had a CT scan today. The lymph nodes in the groin and abdomen area increased in size and number since the last CT scan on March 12th. The largest lymph node is now 4.4 x 4.7 cm. Others in the area measure 4.0 x 2.8 cm, 4.0 x 2.6 cm , 3.8 x 2.6 cm, 3.4 x 2.6 cm, and 2.2 x 1.3 cm. Unfortunately, the melanoma has spread to new areas as well. There are new cluster s of lymph nodes in the chest area. The areas noted on the CT scan measure 3.1 x 1.8 cm and 1.6 x 1.4 cm. These new clusters are probably contributing to her back pain. In addition, there is a 2.6 x 1.7 cm lesion in the muscles of the upper left thigh. This growth has been giving her excruciating pain in her upper left leg. There are a number of subcutaneous soft tissue nodules that have also grown in size.
So the CT scan was not the best , but thankfully the melanoma has not spread to any of her organs and has remained in the lymph nodes and under the skin.
On Monday , May 28th , Jessica will start a new treatment. She will take the Temodar at a lower dose (75 mg instead of 300 mg) for seven days on and then seven days off. This will be combined with Sorefinib (also called Nexivar). The Sorefinib is taken twice daily without a break. Common side effects for the Sorefinib include fatigue, rashes, and diarrhea. She will continue with this treatment for one month. If she is handling the Temodar, the Temodar will be increased to 100 mg. The plan is to have the next CT scan after two months.
Finally, the good news : We had a great Disney vacation last week. Jessica exceeded all of our expectations and did an incredible amount of walking. She did need to rest and it became more difficult as the week went on, but she was a trooper and appreciated the Disney magic. She kept to her planned schedule and had a great time.
As always, thank you for your thoughts, prayers, and support. We need your prayers more than ever.
All the best,
Ed
Tuesday, April 17, 2007
Hello All,
A lot has happened in the last few weeks. Honestly, it has been very trying and tiring.
Jessica’s back pain continued to escalate. She took Oxycontin during the evening of Wednesday, March 28th and the morning of Thursday, March 29th and it knocked her for a loop. On Thursday, March 29th, she drove to get the script for the Temodar at St. Luke’s in the morning, arrived home wiped out, and needed me to come home to take care of the kids. So she stopped taking the Oxycontin and felt better the next morning.
On Monday, April 2nd , Jessica started Temodar, the chemotherapy pill. She took the drug for five days (through Friday, April 6th ).
The back pain kept getting worse, wrapped around to underneath her ribs, and became constricting. Since she was reluctant to take the Oxycontin, she tried Vicodin during Tuesday, April 3rd and Wednesday, April 4th. It was not working. By Thursday, April 5th , the pain was debilitating and she called me at work sobbing. We called St. Luke’s and quickly ran over to meet with Dr. Riley. Jessica had blood work done that day and it came back fine. She next tried Aleve with the Vicodin and had some relief from the pain that afternoon. That evening, she had an MRI at St. Luke’s North. The MRI reconfirmed that the melanoma had not spread to her bones and showed that there were no new lesions. Unfortunately, the back pain returned that night and was more intense. So the decision was made to try the Oxycontin starting the afternoon of Friday, April 6th and work through a period of acclimation.
The Oxycontin took care of most of the pain but made her very uncomfortable and unsettled. Easter weekend was definitely a struggle. Dr. Agarwala suggested that she meet with a radiation oncologist and a pain specialist since the pain persisted. We met with the radiation oncologist on Thursday, April 12th and tentatively set an appointment for the following week to begin radiation treatment. On Friday, April 13th , we met with the pain specialist who suggested three steroid epidural shots (one every two weeks) starting on Thursday, April 19th. We decided to move forward with the epidural shots and cancelled the radiation appointments. She had also started to wean off of the Oxycontin and took it for the last time during the evening of Friday, April 13th .
Saturday morning, she still did not feel well. Miraculously by Saturday afternoon, the pain subsided and she started to come out of the fog of the Oxycontin drug. She had a great day on Sunday, April 15th and has had good days on Monday and Tuesday. Jessica started taking Decadron on Monday afternoon which hopefully will help ease the back pain. At this point, we are not sure whether we are going to go through with the epidural shots on Thursday. The decision will be made tomorrow based on the level of her back pain.
Since my last e-mail, Jessica has had two new lumps in the groin / upper leg area and one new lump on her right bicep. One of the spots on the groin area and the one on the bicep got bigger initially and then got smaller so hopefully the Temodar is starting to work. Until last Saturday, she also has felt pain in the upper right leg and the left shoulder where she has the other growths. Again, hopefully, the increased activity and sensitivity is from the Temodar starting to work.
Jessica wants to thank everyone for their Easter cards and gifts.
April 15, 2007
Dear Neighbors, Friends, and St. Anne’s Family,
Thank you once again for lifting up my spirits with the Easter surprises and well wishes! I had no idea that little bunnies were at work until right before Easter one little bunny tried to lie to my face but could not complete the task. I was amazed by all the wonderful candy, cards, Easter decorations, baskets and other goodies that you all thoughtfully gave to our family. Justine and Eddie especially loved being included in the surprises. I have had a rough past two weeks and the baskets you made for us really made us feel special and loved. We are so blessed to have such a great support system. It helps us to get though the rough patches that are so unpredictable. So thank you thank you thank you for being so good to me! Thanks also for those of you who have signed up for Race Against the Sun. Every time someone signs up Rhonda and I get very excited. With all of your help we can make a difference and help spread the awareness of skin cancer!
Love,
Jess
The Race Against the Sun 5K Walk and Run continues to move forward. Jessica is thrilled with the generous contributions and the show of support. Please continue to spread the word.
Thank you for your much needed thoughts, prayers, and support.
Take care,
Ed
Tuesday, March 6, 2007
Hello Everyone,
Today was another Fox Chase day. Everything is still status quo. Once again, Jessica’s blood work was good. She is starting the 14th three week cycle of the AG trial.
She is tiring out from the treatments and there are many days that are a “struggle” but we are trudging forward. She has taken the AG drug for about 2 and ½ weeks since her last break. The same challenges persist – back pains in the middle of the night, stomach problems, and a lack of energy. It has been a rough week – both kids had fevers over the weekend and Justine had four nosebleeds yesterday. We took Justine to the doctor last night and both kids are getting better.
Jessica is excited about the planning for the 5K Walk and Run. Things are moving along real well. Please visit the website for the race which is www.RaceAgainstTheSun.org. We are very pleased with the website, the brochure (which is available on the website), and the support from the neighbors, St. Luke’s, and everyone involved. If you need brochures and are unable to get them from the website, please let me know and I can e-mail or mail copies to you.
Jessica’s next CT scan is on Tuesday, March 20th. The oncologist decided to add a bone scan as a precautionary measure because of Jessica’s persistent back pains.
We appreciate everyone’s thoughts, prayers, and support.
Take care,
Ed
Wednesday, February 14, 2007
Hello Everyone,
We were at Fox Chase yesterday to start the 13th three week cycle of the AG trial. Jessica was feeling run down at the end of last week and stopped taking the AG pill after the dose on Saturday morning. Dr. Haas agreed that she needs a break and she will start up on the AG pill again this Saturday morning. It is definitely taking her longer to bounce back during the break because of fatigue. During the cycle, she was still dealing with the same side effects – back pains, diarrhea, and fatigue.
Jessica had another CT scan on Tuesday, February 6th and we are happy to report that everything is still stable. The largest nodule measured 3.0 cm. The same nodule was 3.6 cm on the last CT scan on December 27th and was 3.0 cm on the previous CT scans in mid November and early October. The fluctuation in size is probably attributable more to the angle of the measurement than the size.
The plan is to continue to aim for 5 to 6 weeks on AG followed by a minor break for at least two more times. Dr. Haas is generally pleased that the melanoma remains stable. She is hoping that more treatments will become available to Jessica as she is able to persist on AG longer.
We also met with Dr. Riley at St. Luke’s on Monday, February 12th. He was encouraged with Jessica’s progress. Melanoma tends to expand exponentially and even a periodic doubling effect (i.e., 1 cm to 2 cm to 4 cm) is considered a response. Jessica’s largest infected lymph node has only increased from about 2 cm in November 2005 to about 3 cm in June 2006 and has remained around 3 cm through the last CT scan.
Jessica is very happy with the progress with regard to the 5K Walk and Run. I hope to have a final brochure and website link to forward to everyone soon. In the meantime, please mark your calendars for Saturday, September 29th at 9am. The event will take place at the Lehigh Parkway in Allentown and will benefit the Dr. Lee Riley Melanoma Research Fund of St. Luke’s – Bethlehem, PA.
Have a great Valentine’s Day!
Thank you and take care,
Ed
Tuesday, January 23, 2007
Hello All,
Today was another Fox Chase day. Jessica is starting the 12th three week cycle and everything is status quo. Her blood work was good and there were no issues with her continuing on the AG drug.
During the past three weeks, she has had a number of good days but has also experienced a few difficult days. It is tough to predict the ups and downs. Thankfully, she bounces back from the low spots. She has had a cough that has contributed to the normal drain on her energy from the drugs. Also, at the beginning of the last three weeks, she woke up each morning with bad back pains, but she started taking Aleve and the pain subsided.
So we are pleased to report that there is not much to report. Jessica’s next CT scan is on Tuesday, February 6th .
We wish everyone the best. As always, thank you and take care.
Ed
Tuesday, January 02, 2007
Happy New Year!
We are at Fox Chase today to start the 11th cycle of the AG drug. Jessica made it through six weeks straight on the AG drug. She started to tire out during the afternoon on Christmas day and did not feel good on Tuesday the 26th or Wednesday the 27th. She called Fox Chase on Wednesday and they approved a break until today. She felt better while not taking the drug. She had a busy holiday schedule and enjoyed seeing family and friends.
She had a CT scan on 12-27-06. There were no new spots noted. The melanoma is still considered stable even though there was some change in the four nodes that were being monitored. The largest node grew from 3.0 cm in early October to 3.6 cm x 3.4 cm. The second largest node grew from 2.5 cm x 1.8 cm in early October to 2.9 cm x 2.4 cm. On the good side, the third largest node continued to shrink and went from 2.1 cm x 1.4 cm in early October to 1.6 cm x 1.3 cm. Also, there is no mention of the fourth node in the report which was at 12 mm in early October.
The report does not mention the spot on her neck that was measured at 9 mm in early October but we think that the reason is that the scan does not cover that area. That spot continues to fluctuate in size and has been a little bit larger consistently for the last week.
The oncologist at Fox Chase is pleased that the AG drug has kept the melanoma stable for an extended period of time. We spoke about alternative treatments that are available including MDX010, SAHA, Millennium, SNS, and Nexivar. It is definitely encouraging to hear about other treatments. In the meantime, we will stay the course with the AG drug which continues to work well.
Hope you had a great holiday season! As always, thank you!
Take care,
Ed
Sunday, December 17, 2006
We went to Fox Chase on Tuesday, December 12th and Jessica started her tenth three-week cycle on the AG drug. Jessica’s blood work was good and everything was status quo. She did have some excess protein in the urine which was monitored over a 24 hour period on Thursday. We are waiting on the results but believe that everything is okay. Interestingly, she has been on the AG drug longer than any other patient of her oncologist, but there are a few individuals that are not far behind her.
She had a great Thanksgiving and did pretty well during our time in Disney World from December 1 st through December 5th. Her energy level was adequate and a little Disney always helps. Jessica was tired after the Disney trip. She continues to need her naps in the middle of the day and her stomach bothers her in the evenings; however, she continues to have a busy schedule and makes it to every event with a smile.
The subcutaneous nodule on her neck has been growing slightly on certain days and then tends to contract on the following day. It appears as if this is evidence of the AG pill waging war with the cancer and keeping it in check.
She has been taking a blood pressure medicine which seems to have kept her blood pressure in check. Previously, there had been a growing concern that her diastolic reading was consistently high (i.e., in the 90s or slightly over 100).
Her next CT scan will probably be on Wednesday, December 27th .
We wish you and your families a very happy holiday season!
Thank you as always.
Take care,
Ed
Wednesday, November 15, 2006
Hello All,
A lot has happened in the last couple of weeks but fortunately everything is still stable.
Jessica had a great Halloween handing out candy to about 250 kids and also had the opportunity to help at Eddie ’ s kindergarten on both Tuesday, October 31 st and Thursday, November 2 nd. After that, she had a rough weekend and had endured a number of days of extreme diarrhea and mouth sores that prevented her from eating. She became very weak and ended up going to Fox Chase on Monday, November 6th to receive two bags of IV fluids, Zofran (for nausea), and Decadron (a steroid) to combat her dehydration. She had not taken a break from the AG pill since August 29th and the cumulative effect of 10 weeks had drained her energy. Also, we believe that she had some unrelated virus affecting her. As a result of her weakened state, she had a forced break from the AG pill from last Monday through today.
She felt better by last Wednesday and her symptoms subsided. Last Wednesday, the nodule in her neck became swollen and started hurting. Jessica was concerned and so was the nurse at St. Luke’s based on Jessica's description. So we moved the CT scan up from Tuesday, November 14th to last Thursday night (November 9th ). Fortunately, the swelling of the nodule in the neck and the pain subsided last Thursday. We got the results of the scan verbally on Friday afternoon which confirmed that the nodules were very similar in size to the last CT scan in the beginning of October and there were no new spots.
On Monday, we went to St. Luke ’ s and met with Dr. Riley. He seemed pleased with the fact that she has stable disease and was interested in getting a combination PT/CT scan about 3 months from now to see about the possibility of surgery to remove the remaining spots. He agreed that she should stay on the AG drug in the meantime.
Today, we were at Fox Chase to see Dr. Haas. Jessica ’ s blood work was good and her blood pressure was normal (114 over 73). Jessica was tempted to put on an act to delay restarting the AG drug since she has had such a good week , but she resisted. She will start taking the AG drug tonight and will continue the dose at 4 mg. W e are scheduled to go back to Fox Chase next Tuesday ( November 21 st ) to begin the ninth three-week cycle.
Unfortunately, s he is not going to have a break during the Thanksgiving holiday or during the Disney trip but hopefully she will still be able to benefit from the break over this past week. After a further discussion with Fox Chase, it seemed doubtful that she would have gotten the timing of the break that she originally wanted since the protocol only provides breaks for cause.
It is fair to say that Jessica is tired of the AG drug and its side effects. She continues to be a trooper and is encouraged by the beneficial results of the AG drug and everyone’s support.
I appreciate all of your e-mails and calls and apologize if I have not gotten back to you.
Hope you and your families are doing well and have a great Thanksgiving holiday. As always, thank you for your thoughts, prayers, and support.
Take care,
Ed
Monday, October 30, 2006
Hi All,
We were at Fox Chase today for the start of Jessica’s eighth three-week cycle of the AG drug treatment. We met with the oncologist and everything was generally positive: her blood work was good; she has not found any new spots and the spot on her neck feels about the same; and her hands and feet are no longer sensitive. She still is experiencing side effects - fatigue, diarrhea, and a sensitive tongue and mouth that make eating uncomfortable.
Jessica has been on the AG drug since the middle of August without a break and had a rough time at the beginning of last week. We inquired about a break from the drug and the doctor indicated that everyone on the protocol for a prolonged period has needed a break. Pfizer, the sponsor, usually grants requests for a break. Also, most importantly, it is not unwise to take a break to help maintain the current dose level (i.e., 4 mg of AG) for a longer period of time. This is a better answer than reducing the dose to 3 mg. Jessica hopes to have the break from November 21st through December 5th to feel better for Thanksgiving and a trip to Disney World without the kids from December 1 st through December 5th. Hopefully, the break is approved.
She is scheduled for her next CT scan on Tuesday, November 14th and we should have the results and feedback from the doctors soon there after.
Jessica and the neighbors have started planning a 5K run and a walk for next October to raise money for melanoma research. We will keep you posted as more details are available.
Thank you for your continued thoughts, prayers, and support.
Happy Halloween!
Take care,
Ed
Sunday, October 8, 2006
Hello All,
Jessica had her CT scan on Tuesday, October 3rd. Everything was stable and there were no new nodules identified. Specifically, the lymph nodes in the area from the left groin to the abdomen, the nodule on the left front portion of the neck under the skin, and the small nodule on her lower left side under the skin were all stable. The size of the nodules has not changed substantially over the last three scans - June 27th , August 8th , and October 3rd.
I thought the following information from those last three scans would be helpful. Note that the measurements for each nodule are not given in each scan and the August 8th scan only measured the left neck nodule under the skin. I included some of the technical terms for those that understand them.
| |
June 27th |
October 3rd |
| Groin/abdomen #1 (largest node ) |
3.6cm x 2.5cm |
3.0cm |
| Groin/abdomen #2 (left external iliac lymph node) |
2.6cm x 1.9cm |
2.5cm x 1.8cm |
Groin/abdomen #3 ( node at bifurcation of left internal & external iliac arteries ) |
12mm |
12mm |
| Groin/abdomen #4 (left femoral node [ node with central necrosis ] ) |
2.2cm x 1.5cm |
2.1cm x 1.4cm |
| Left neck nodule under skin |
9mm (measurement at 8/8/06)
|
9mm |
| Left anterior abdomen nodule under skin (lower left side) |
3mm |
4mm |
We are going to Fox Chase on Tuesday to have blood work done and to receive a refill of the AG drug. At that time, we are going to inquire about possibly getting a PT scan. A PT scan measures activity while a CT scan measures mass. The hope is that the PT scan show s limited or no activity in the areas of concern.
Hope everyone is having a great weekend! Thanks for your thoughts, prayers, and support.
Take care,
Ed
Saturday, September 23, 2006
Hello All,
Jessica went to Fox Chase on Tuesday. She did not receive chemotherapy that day and is done with the chemo portion of the treatment. Tuesday would have been her sixth and final chemo treatment but it was held due to the potential for permanent nerve damage in her hands and feet. She has been experiencing tingling in her hands and feet and has had difficulty opening bottles and jars. The doctors closely monitor and grade the amount of sensation loss during chemotherapy and decided that the sixth treatment was best to forgo. She is very happy to be done with chemo and looks forward to her hair coming in.
Jess continues to take the AG pill twice a day at 4 milligrams per dose and to have a blood work every week. We will go back to Fox Chase every third week to meet with doctors, to have that week ’ s blood work, and to refill the AG pills. She could conceivably be on the same three week cycle for the AG drug for a year or more. She will continue to take the AG drug as long as it works. If a better treatment becomes available, she could shift to it. However, at this point, the AG drug is the best treatment, and, most importantly, it has been working for Jessica.
Her energy level has been good. She does get tired and has stomach discomfort frequently. Thankfully, she has felt significantly better than she did over the summer and feels that she can continue on the treatment without it being debilitating.
Jessica’s next CT scan is scheduled for Tuesday, October 3rd and we hope to have the results later that week.
Thank You. Hope you are having a great weekend!
Take care,
Ed
Tuesday, August 29, 2006
Hi All,
We are back at Fox Chase. Jessica’s blood work came back good this morning and enabled her to get the 5th dose of chemotherapy today. The doctor reduced the Carboplatin chemotherapy for this cycle and maintained the same level for the Paclitaxel chemotherapy. Jessica will also take 4 mg of the AG pill instead of 5 mg during this cycle.
Last week, we met with the doctor at St. Luke’s who administered the Interleukin-2 treatment. He was encouraged by her progress and is pleased with the AG pill/chemotherapy trial .
The kids met with the dermatologist yesterday and there were no problems.
Jessica is very appreciative of the support and especially loves the cards. Thank you for your thoughts, prayers, and support.
Take care,
Ed
Tuesday, August 22, 2006
Hi All,
Jessica had a great week with the break from the chemotherapy and the AG pills. Her energy level was good and her appetite was back to normal. On Friday, they had tested for further protein spillage in her urine and there was not an issue.
We were back at Fox Chase this morning for chemo #5. Both her hemoglobin level and the granular white blood cell counts were low so they delayed the chemotherapy until next Tuesday, August 29th. The doctor gave Jessica the option of whether to take the AG pill this week. She opted to delay the AG pill. This decision was solidified when we learned that the break from the AG pill could help with the recovery of both her hemoglobin level and granular white blood cell counts. She is very happy to have another week off.
Jessica wrote the following thank you e-mail on Saturday that she wanted me to forward to you:
August 19, 2006
Dear Friends, Family & Neighbors,
I am writing to thank everyone for their overwhelming generosity and support over the past few weeks. All I did was tell Rhonda that I was feeling down and she got worried about me. I was feeling extremely lethargic, even walking up the steps took great effort. Ed has had to pick up the slack around here and I do not think he has ever done so many chores in his whole life. He did not even complain or else I was too out-of-it to notice. Anyway, all of your cards and gifts cheered me up and gave me mental strength to move forward and endure the treatments over the next few weeks. I feel great today because I have been off of the drug since Monday, August 14th. I really appreciated all the brownies, cards, hard candy, coffee cake, flowers, crafts for the kids, books, popcorn, movies, entire dinners, chocolate, thoughts and prayers. I feel so ridiculously spoiled and I am looking forward to the time when I can do something nice for all of you. Thanks again!
Love,
Jess
Thanks again for your thoughts, prayers, and support.
Take care,
Ed
Tuesday, August 15, 2006
Hi All,
Jessica is back at Fox Chase for chemotherapy treatment #5 today. Based on her fatigue and the fact that she has some spillage of protein in her urine, the doctor has decided to hold the 5th chemotherapy for one week. We will return next Tuesday, August 22nd for the fifth treatment. Most likely, there will be a dosage reduction for both the chemo and the AG drug. In the meantime, they are going to measure the protein spillage over a 24 hour period. Most importantly, the doctor wants to give Jessica a chance to recover some energy before the next cycle.
We did get the results of her CT scan of August 8th and the news is generally good. The main area from the left groin to just under the rib cage is stable. There was no noted increase or decrease with no additional necrosis (i.e., internal dying of the cancer cells) discovered. The subcutaneous (i.e., under the skin) nodules are negligible at this point with the exception of a 9 mm growth on her left neck. The bump on the neck has been there but the CT scan stated that there was an increase. This increase contradicts the decrease in this area that Jessica and I recently noticed. Also, t he doctor agreed that the nodule on the neck did not seem larger on exam. In addition, t he last CT scan had mentioned the decreased blood flow to her left leg but this concern is absent from the current CT scan. Thankfully, the melanoma has not spread to any new areas.
Jessica’s blood work has been consistently very good but last Tuesday a certain category of white blood cells dipped quite low. The expected range is 1500 to 2000 and her count was at 350. With such a low count, a person is susceptible to infection and the body can actually generate its own infection. We were advised to go to the emergency room if she had a fever of only 100.5 degrees. Fortunately, she did not have any issues and her follow up blood work on Friday showed that the count had tripled to 1050. Today, her count was back in the normal range. Apparently, the dip in this white blood count is common for carboplatnium chemotherapy.
She has been extremely exhausted and has barely left the house over the last three weeks. Mornings are rough and she has trouble sleeping. The lack of energy has definitely affected her spirits. The last few weeks have been especially difficult. The tentative goal is to undergo six chemo treatments. Everyone is familiar that chemotherapy can be grueling but we learned that the AG drug alone can be more debilitating than chemotherapy. So the treatment can be worse than receiving a double treatment of chemotherapy. With the cumulative effects of the drug and the chemotherapy, the next couple of months will be draining.
Jessica continues to thrive on your calls, cards, and moral support. She appreciates the recent wave of “overwhelming” support.
Eddie update: As mentioned before, we had sent the slides from Eddie’s surgery to an expert in Boston for a second opinion. The doctor believed that the mole was atypical but believes that it is benign and not malignant. He was pleased that they got enough margin around the mole and recommended that no further surgery be performed at this point.
Overall, the news is good. I look forward to giving you more good news in the next update.
As always, thank you for your thoughts, prayers, and support.
Take care,
Ed
Tuesday, July 25, 2006
Hello to everyone,
Jessica got her fourth chemo treatment today. She is going to continue taking the AG drug at the same dose (i.e., 5 mg twice a day). Jess has been much more tired since she got the third treatment. The AG drug by itself tends to drain a person’s energy. Therefore, the combination with chemo can be exhausting. The goal is to have six rounds of chemo. It is possible that the AG dose level will drop later depending on her level of fatigue.
We were at the beach starting on Saturday, July 15th and left early this morning to come directly for her chemo treatment. Jess has been very frustrated that she was limited in her activity at the beach but had a good time nonetheless.
I have been inaccurate with the description of the main lymph node area. I have been focusing on the groin area. There are actually four lymph nodes that are being closely watched. A lymph node in the left groin area is the one that experienced necrosis (which means that the cancer is dying out) according to the last CT scan. The other three are in the area from the left groin stretching to just under the rib cage. Two lymph nodes in that area were stable. The fourth one grew and this one is more internal and is located just under the rib cage.
The doctor was not in today but the discussion with the nurse practitioner was promising. She agrees that the swelling in the groin area has gone down. Also, Jessica and I believe that the subcutaneous (i.e., under the skin) bump in her neck appears to have reduced in half within the last few days. The other subcutaneous nodules continue to be hard to find and are very small.
Jessica’s next CT scan is slated for Tuesday, August 8th and we should hopefully have the results within a day or two of the scan.
There is not an update on Eddie. We have a follow-up appointment on Monday, August 28th. In the meantime, a doctor at Harvard has received the slides to help decide if a second procedure is necessary.
As always, thanks for your thoughts, prayers, and support.
Hope everyone is having a great summer!
Thanks,
Ed
Monday, July 3, 2006
Hi All,
Jessica had a CT scan on Tuesday, June 27th and we have received the report. We have not yet spoken to a doctor but will do so on Wednesday when Jess has her third chemo treatment.
My read of the report is that it is positive. Most importantly, the cancer has not spread to any new areas. The report mentions three cancerous lymph nodes in the groin. The largest grew to about 1½ inches by 1 inch from the time of her last CT scan (April 20th) when it was about an 1¼ by slightly less than an inch. The other two only increased by very slight amounts. T he report also mentions that the smallest of the three has experienced some central necrosis. Necrosis means that the blood supply has been cut off and that it is perishing from the inside out.
There is only mention of one subcutaneous (i.e., “ under the skin ” ) cancerous nodule which is in her lower left abdomen. Curiously, we would have expected a subcutaneous nodule on the neck to show up on the report but it did not. With the exception of the one on the neck, the subcutaneous nodules have all shrunk in size and we are only able to find them because we know where to look.
There are also a couple of items mentioned which are on the watch list such as monitoring the blood flow to her left leg. All things considered, it is a good report and Jessica and I are somewhat encouraged by it. We haven’t discussed the report with a doctor so I caveat my interpretation of the report since I never took a biology class. We did briefly speak to a nurse at St. Luke’s and she agreed that it was positive and was encouraged by the necrosis.
Eddie got through his surgery at St. Luke’s Quakertown smoothly on June 15th. The biopsy came back and confirmed that they had removed the entire mole. However, there were some worrisome cells in the mole so they want to monitor it very closely. We have a follow up appointment at the end of August and they will possibly schedule a second procedure to get more margin around the spot where the mole was as a precautionary measure.
Eddie bounced back very fast and had his stitches removed on June 28th. Jessica continues to not miss a beat. She has been keeping very busy and has made every event and get together. She has experienced a lack of energy but the rest of us have even been tired from the busy pace. Hope everyone is having a great Fourth of July weekend. As always, thanks for your support, thoughts, and prayers.
Take care,
Ed
Thursday, June 15, 2006
Hi All,
Jessica received her second chemotherapy treatment on Tuesday. We were at Fox Chase from 7am until 8:30pm that day. We we re back at Fox Chase for blood work Wednesday. She had blood drawn at 10:19am and at 4:19pm.
We have found 4-6 new bumps under the skin recently but the doctor was not overly concerned. There could be any number of reasons that are not negative : 1) t hey are small and may have existed but did not previously have the pigment to be found ; 2) t here may be some new bumps in the early stages of the treatment before it takes effect; or 3) they might be spots of dead cancer tissue. In addition, she has had a high pulse rate with minor exertion and has had some episode with a shortness of breath but again the doctor was not overly concerned.
Jessica started losing her hair at the end of last week and shaved her head on Monday. She has maintained a real good attitude, has accepted the shaved - head look, and claims to look like Demi Moore in G.I. Jane.
She has been tired after the chemo treatments but thankfully has not had substantial side effects from either the chemo or the AG pill. Also, t he doctor has been very pleased with her blood counts.
Her next chemo session is on Wednesday, July 5th. She will have a CT scan on Tuesday, June 27th and we should know the results by July 5th at the latest.
Today, Eddie had surgery at St. Luke’s in Quakertown to remove a mole on the bottom of his left foot. They are going to test the mole to see if it is a “ pre-melanoma ” and removed it as a precaution. We arrived at 6:30am and we were back home by about 10:30am. He had general anesthesia and the surgery lasted less than 10 minutes. He was groggy when he was in recovery but bounced back by the time we got home. He handled the surgery very well.
Hope everyone is doing well. Thank you again for everything.
Take care,
Ed
Monday, May 29, 2006
Hi All,
Jess had a long week last week. We were at Fox Chase on Monday from 7:30am until 5:30pm and she was getting blood drawn at 1 hour intervals for most of the day. On Tuesday, we were there from 7am until 7:30pm and she got her first chemo treatment. For most of the morning, she was getting blood drawn at 15 minute intervals. On Wednesday, she needed blood drawn at 9:30am and 3:30pm. In the interim, she had an ultrasound to confirm that there was not a clot or other problem with the port since she was still sore from the port.
Then she didn’t exactly take it easy. We had a number of events for the kids. She was a trooper and made them all. Thursday was Eddie’s graduation from Pre-K in the morning and the open house for Justine’s school in the evening. Friday was Justine’s dress rehearsal for dance. Saturday was Justine’s dance recital (2 hours) and dinner with the family. Sunday was Justine’s dance recital part II (3 hours). She was extremely tired and “in a fog” especially on Friday and Saturday. Despite the lack of rest, she started feeling better on Sunday and today is supposed to be a day of “nothing”.
After her chemo, the dose for the AG drug was increased to 5 mg. So far, she has not had any side effects. She has felt some discomfort in her stomach but no diarrhea as others on the trial have experienced.
She believes that there has been reduction in the swelling in the groin area so that is encouraging. Also on a positive note, we have not come across any new spots under the skin in the last two weeks.
Hope everyone is having a great holiday weekend with family and friends! Thank you for your cards of support!
Take care,
Ed
Wednesday, May 17, 2006
Hi All,
Jessica is starting her treatments at Fox Chase Cancer Center. As I mentioned before, the treatments are a pill named AG-013736 (“AG”) which is combined with chemotherapy every third week. The pills are to be taken twice daily approximately 12 hours apart.
We are at Fox Chase today (Wednesday) and Jessica just went to get her port for the chemotherapy. Today, we should be here only for the morning. We are back at Fox Chase briefly tomorrow morning to start the pills. On Monday the 22 nd , we return for a 12 hour day of taking pills, tests, and observation. On Tuesday the 23 rd , we have another 12 hour day which is when she will get her first dose of chemotherapy. We come back for the morning of the 24th for pills, tests, and observation. After that we will be at Fox Chase every three weeks for a 12 hour chemotherapy day followed by a morning of pills, tests, and observation (for example, June 13th and June 14th ). The treatments could last for six months or more depending on the results.
We have recently found a few additional bumps under her skin but we are still very hopeful and encouraged by this additional treatment.
We had a great vacation on the Disney Cruise last week. We visited Key West, Grand Cayman, Cozumel, and Castaway Cay (Disney’s Island in the Bahamas). We had some excitement including a bomb scare as we boarded the boat, a tropical storm on Castaway Cay, and Eddie volunteering to assist a magician in the farewell show and hamming it up for the crowd.
I have attached Rhonda Heier’s message about sending cards to Jessica for those of you that were not copied on the original message.
Hi Everyone ~
I hope everyone is doing well. As you all know, Jessica is starting her new treatments this next week. While she is not going to have to check into the hospital, she will be receiving Chemo, which she is understandably not looking forward to. I think now would be a good time to remind her that she has all of our support. Please take a moment of your time in the next day or two and send Jessica a note or card letting her know that you are thinking of her as she continues this fight and/or have your children draw a picture for her.
Please “Shower Jessica” with your cards, sending them directly to her.
Please send your cards within the next couple of days so she will receive them by next Monday! Thank you for your continued support of Jessica, Ed & their family.
Ed ~ Please forward this to anyone I may have inadvertently missed or didn’t have on my distribution list. Thanks!
Rhonda
Hope everyone is doing well.
Thank you,
Ed
Wednesday, May 3, 2006
We met with the doctor at St. Luke ’ s this afternoon and have an appointment at Fox Chase tomorrow. I asked the doctor to grade her progress and I suggested a “ C ” but the doctor gave her a “ B- “. The next step is most likely going to be a trial with a drug named AG -013736 ( “ AG ” ) combined with chemotherapy every third week. The trial will be administered at Fox Chase. AG is a drug that is similar to Nexivar – a drug that I have mentioned before. The available evidence on AG indicates that it stops the spread of the cancer for approximately 40% of the patients and it shrinks the cancer for another 30-40% of the patients. Combining the two, there is a 70-80% chance of positive results. We might have more information after our appointment tomorrow.
As many of you know, we have decided that a little Disney magic would be good to mix into the treatments. We are heading to Disney World tomorrow after the Fox Chase appointment and are going on the Disney Cruise from Saturday, May 6th through Saturday, May 13th.
I hope everyone is doing well. Thank you for your thoughts, prayers, and support.
Take care,
Ed
Wednesday, April 5, 2006 (evening)
We got home about 5:30PM today. Jessica is very tired and sore (especially in her shoulders). She is happy to be home and should recover over the next few days.
Her CT scan is scheduled for Thursday, April 20th and we have a follow up appointment with the doctor on Thursday, April 27th to discuss the next steps.
Thank you for your thoughts, prayers, and support. Take care, Ed
Wednesday, April 5, 2006 (morning)
Jessica did not get the 12:30am dose and is done for the 6th round at 3 doses. The doctor stressed that three was the right amount this time. She is getting a potassium drip now and our plan is to go home sometime this afternoon. Based on the fact that Jess felt the IL-2 effects so quickly, the doctor thinks that her recovery at home over the next couple of days will be tough. She did gain 17 pounds over about 36 hours.
She slept OK last night and has received Lasix. S he has already lost some of her “ puffiness ”. It was definitely a good sign that she vehemently demanded Yocco’s hot dogs and pierogies last night which I raced to pick up at 11pm. Need to run to get her Yocco’s breakfast together.
Hope everyone is doing well. Thanks, Ed
Tuesday, April 4, 2006
Jessica was able to sleep last night and also slept most of the morning. She got her third dose at 8:30am this morning. Just before noon, her blood pressure got as low as 68 over 39 but then it gradually crept up to the mid 90s over the mid 60s. Her urine output has been the issue and she skipped the 4th dose at 4:30pm. Unless things change with her urine output this evening, she is done for the 6th round. Even though she only got three doses, the doctor is pleased because she is experiencing the effects of IL-2. T he impact of IL-2 tends to occur with fewer doses each tim
