I had my 36th week clinic visit on the 13th of October. The scan results were good. Today they were confident to confirm that the tumors on my adrenal gland and small bowel were “resolved” GONE for us common folk. All the other tumors were “stable” or slightly reduced. I’ll have the printed copies in a couple of days so I can compare it all.
The blood work was all within limits so I received the maintenance treatment. I’m now on a six week scan / twelve week treatment schedule. As long as the scans and blood work are good I advance to the next six week interval.
About a month ago a blood test revealed that my testosterone level was very low. So in addition to the thyroid treatment I’m now on testosterone therapy. It seems like my energy is increasing daily. I’m riding my bike on a regular basis building up my endurance and strength. As long as the weather doesn’t get too cold or wet I’ll be riding. During the bad weather I’ll be using the equipment at Planet Fitness. My goal is to qualify to ride at least one day of the Pan Mass Challenge next summer.
Today I passed my bike helmet around to my medical team. I’ve asked them all to sign the helmet so I can remember them all as I ride. The main message on the helmet is “It’s about Kickin’ Melanomas Butt”.” The helmet is starting to look neat with all the messages. Sometime soon I’ll post a picture
~jerry
This one’s gonna be long.
It’s my birthday. Not just any birthday, I’m the big 60 today. A lot of thoughts of the last 9 months have wandered through my head for the last few days. I realize how fortunate I am to have a wonderful family, fantastic friends and a great medical team…. The phone has been ringing all morning with calls from family and friends.
Fun Stuff First!
In early August we visited my sister and BIL in Pittsfield NH. We were there for the annual Pittsfield Rotary Balloon Festival. We had a blast getting up at 4am or so to get down to see the liftoff. Then we enjoyed the pancake breakfast. After we returned to my sisters house high on the hill I started preparing for the “Turkey Hangin’.” We did have some equipment malfunctions so a trip to the hardware store and a bit of jury riggin’ and we had the bird cooking.
The water touchdown contest
Getting the Hangin' gear ready
Almost Done
Watching the coals
We enjoyed a wonderful dinner and finished up just as the afternoon liftoff started. The winds were favorable and most of the balloons drifted right overhead as Scout (my BIL) watched the skys to let us know where all the balloons were heading. That evening we went back to the center of town to watch the illumination of the participating balloons at the launch field. It was an awesome display. They had 15-16 balloons packed into a small field along with about 10,000 spectators. The largest was the “Eveready Bunny” at about 160 feet tall.
Later that evening after all the balloons were packed away and the helicopters ended the tours for the day we watched a fantastic fireworks display. We slept like babies that night. My sister & BIL’s house is the best hotel we’ve ever stayed at *G*. They spoiled us rotten and we loved it!
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I’ve reach week 24 of the medical trial. The past Saturday was spent in Boston getting my CT and Brain MRI so that the official reading would be ready for my physicians visit today.
It was a big day. I haven’t had a treatment for 14 weeks. All the past scans as well as the side effects indicated that the treatment was working.
Today the medical team were confident enough to confirm the indications of the week 20 scans. I HAVE TWO LESS OCCUPANTS IN MY BRAIN. Two of the tumors (mets) have disappeared. GONE, ZAPPED, KICKED OUT, KAPUT, GONZO. By the way I do have document proof that I do have a brain. No documentation on how good it is though *G*
The rest of the news is also pretty darn good too!
The remaining brain mets appear to continue reducing slowly. The mets in my lung, intestine and adrenal gland are also responding well.
I had the week 24 treatment and got hugs and big smiles from the nursing team. I also found out that a fellow that is in a parallel program who was in week 48 when I started just completed his 72nd week.
The next step is week 30 with scans and doctors visit. If the scans show stability or reduction and the blood tests are okay I proceed to week 36 which will include scans, visit and treatment, again if I’m still responded.
That’s all for today.
Thank you all for your prayers, kind thoughts and friendship.
Jerry
To date, the PMC has raised more than $239 million that has been used to improve the lives of those suffering with cancer. It is the largest single contributor to the Jimmy Fund, bringing in nearly 50 percent of its annual revenue.
Alone…. As the time between infusions and checks has increased I sometimes feel that we should be doing more. It’s like my security blanket has been taken away. It is comforting knowing that I can contact my team easily by email and get a response and support quickly, but it’s a bit like a withdrawal from my lifeline. I know better, I’ve read and re-read, researched earlier results and I know this is the course of treatment. I’m sure this will get better as time goes on.
Lucky… The ipi appears to be working for now, I’m recovering my strength. I have not shown any symptoms of any of the mets. I’ve got a fantastic family and a great group of friends who are praying and pulling for me.
Hopeful… That the results of all the trials convince the FDA, Medarex, and BMS to get ipi available as a regular treatment option… Quickly. It appears to be an option for many.
Thankful… That there are so many dedicated Doctors, Researchers working together to fight the beast. Most of all to all of you warriors out there and the angels who have gone before us. Your contribution to beating the beast is immeasurable.
Lest I forget, I’m most thankful for the medical team a BIDMC. WOW!, I feel like I have my own “A TEAM.” It’s a great, caring staff. Bless you all.
Jerry
I received a call on the results of the blood tests I had last Friday. Two key markers are going the correct way.
The low thyroid count is improving with the new increase in the synthetic thyroid med. My primary care doctor recommended staying on the same dose for one more month and then we can fine tune it if needed. I’m just starting to notice a slight bit more energy every day, but I still tire easily and find myself short of breath.
My A1C is lowering again after an unusual spike last month that I attribute to my lack of attentiveness.
This is good news and a bit of relief. I generally send an email update to VS my nurse practicioner at the clinic. Here’s the news I just received.
“Thanks for the update. The graying of your beard and mustache is likely a good sign (no joke!) – it is likely triggered by an immune reaction.We will take it! Everything else sounds good, too. See you next week when we will NOT call you an old goat.”
I’ve been really fortunate and by no means am I complaining about side effects I’ve experienced. I’m just going to give you as balanced a perspective of my experiences.
MDX010 or ipi can cause very serious auto-immune reactions when the immune system shuts down the molecule CTLA-4 allowing your immune system to work more effectively.
Fatigue – overall especially for the week after infusions. Mine continued to get worse and blood tests revealed that my thyroid levels were VERY LOW. I’ve been taking Synthyroid for 2 months and testing every 4 weeks. Last month we reduced the level by 50% and did a very small adjustment to the dosage. I’ll have results from the latest blood test next week. There is debate about the cause of the damage to the thyroid. The three areas that could cause/contribute are
- The Radiation treatment to my neck in January.
- An auto-immune reaction to the ipi (rare)
- A side effect of the Gabapentin used for the control of the rash/itch
The December blood test had a thyroid indicator level of 7 with 3-5 being normal. The higher the indicator the lower the thyroid level. The test two months ago was a 95. Last months was 56. Still a ways to go.
Skin Rash – Started about week 4 moderate itching with some “phantom” itching. We tried benedryl and Sarna lotion at first without much success. I went on to Gabapentin twice a day which did a great job on the itching. I did notice an increase in the fatigue and around the time I finished the week 10 treatment the rash/itch subsided somewhat and is controlled by benedryl and anti itch creams and/or sprays.
As I mentioned I have been very fortunate. These are the only noticeable side effects that I have experienced.
I’ve finished the infusion stage weeks 1-12 with treatments on week 1, 3, 7 & 10. I’m currently in maintenance phase in week 18. The week 16 MRI and CAT scan showed continued reduction in both lung tumors and the finally the brain tumors started to show some minor reduction. The best news is that all the tumors were classified at least stable. During the induction phase the brain tumors were classified as “delayed response” which caused me some concern, but I was reassured by the medical team that “Stable is Good,” which is true.
M & I travelled to BIDMC to meet with the “team” Did I every tell you that “I’m the Luckiest Man Alive,” well if you met the team you’d know how I feel. I’m a Stage IV melanoma patient with odds that nobody in Vegas would play and I’m so fortunate to have these wonderful people beside me.
We reviewed the entire trial protocol and we had additional questions and answers with the Doctors. We met most of the key BIDMC key players.
I have to admit to you right now that I am an emotional person and everytime I think about how lucky I am for my family, friends, and the team at BIDMC I tear up. I’ve got a chance, others have a chance.
We can Beat the Monster!!!!!
I start with my first treatment on February 11th
M and I had an appointment on to meet with Dr. C. at the radiologic oncology department at Cape Cod Hospital. Set for Monday, January 19th. I had all my scans on disk and he had been fully briefed by the team at BIDMC. After he reviewed the scans and I got to “see” the culprit for the first time he arranged for his technicians to make the “mask” which would hold me in place during treatment. He also verified that I would only need 5 consecutive treatments to take care of the tumor.
He gave me his personal contact info and told me to page him if I had any problems. We set the first treatment for the the following Monday, January 26th.
On Wednesday, January 21st, I awoke with a tingling in my hands that wouldn’t go away. I wasn’t sure but I think that this may be the first symptom of the neck met. I called Dr. C. and to be on the safe side with some quick shuffling he rearranged the first treatment date to the following morning.
I only had to go 5 days unlike most of the other patients who had much longer treatment schedules with wider areas involved. I did develop an irritation of some of my glands in the neck which caused a mumps like reaction which was treated easily with ibuphrophen as we could not use steriods because of the upcoming trial.
The only other side affect that I was starting to feel was fatique.
We finished the radiation on January 28th and after the team at BIDMC got the go ahead I was given my first treatment date of February 11, which was only one day out of sync with the clinic and they would adjust the schedule in later weeks.
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