Forum Replies Created
Hi Jeff’ Where do I find this trial info? Well I had a contrast MRI done yesterday on my brain, 3 months after the Stereotactic Radiation Surgery (Gamma Knife) was performed. The results far exceeded our expectations. 5 of the 6 tumors are gone and the 6th has been changed significantly. My oncologist believes that it has been killed because of how it’s appearance has changed. We believe that my brain tumors are solved!!!!! I’m scheduled for another follow up MRI in 3 months.
I have a follow up on the Yervoy treatments for my lungs scheduled for next week. Hopefully we will continue to see successful change there also.
I am really impressed with the quality of cancer care I’ve recieved here in Peoria Illinois.
Had my 3rd Yurvoy treatment Feb 8th. Each time i have a treatment i have to have blood work so that they can determine to compond plan. In addition i am given an x-ray to compare what has happened to the 4 tumors in my lungs. My Oncologist has said not to expect much in results because Yurvoy works vary slowly and we should not see anything significant until well after the 3rd treatment and generally after the 4th.
Long story short, when we reviewed the x-rays there was at least a 25% reduction in size of all 4 tumors. You could not hardly see the 2 smaller ones and the 2 larger ones were significantly reduced.
Needless to say my Dr was like a kid in a candy shop. He couldn’t have given us more encouragement.
Does anybody have a remedy for this lousy taste I’ve had in my mouth since the Radiation treatment of my brain? I keep hoping it will go away. I’m using some “Dry Mouth” mouthwash but it doesn’t seem to be working.
I’m going to Texas this week to celebrate my grandson’s 2nd birtday and my 69. I plan on playing some golf down there.
The whole process lasted 1 hour and 15 minutes. 55 minutes actual radiation treatment. The techs where very upbeat on the execution of the plan. They felt that they did a very good coverage of the tumors and margins. I haven’t had any side effects to speak of last night or today. Just a little more tired today than normal.
I was reviewing my charges to my insurance today and saw what the bill was for my Yurvoy treatment. WOW, The bill for the 1st treatment was $78,000. My insurance company is really challenging this cost. My copay is $890.00. This stuff better work.
Bristol Meyers must have a huge amount of cost in developing this drug.
Stereotactic Radiation Surgery today. Had my 1st. Yervoy treatment Friday. So far no side effects.
Going in today for a Higher concentration MRI with contrast. Next step is Stereotactic radiation surgery on the 3 remaining tumors.
Sure getting tired of the metal taste in my mouth.
Happy New Year everyone.
The MRI shows that 2 of the 5 cancers have disappeared and one has shrunk significantly. That’s the good news. The bad news is that 2 have increased in size.
The next step is to attack those two and the small one with stereotactic radial surgery. That’s being planned right now.
I had to postpone the Yervoy ipi was postponed until this Friday. I did take the blood tests and all of my blood work has come back with excellent results. Even my PSA test for my prostate cancer was 2.57 which was lower than the previous test.
Still hanging in there.
Got the whole family here for Christmas. The house is packed with lots of love and support.
My BRAF was negative. Went through training today for my chemotherapy. I’m starting Yervoy on the 21st. 4 treatments every 21 days. After that I will be on maintenance every 90 days for whatever period the results provide. I have a follow up MRI next Monday to determine the effects of the 14 whole brain radiation treatments. I will go over those results with my Oncologist on the 21st before I start the first treatment. Got the results back from the BRAF 600 test and i’m negative. I have a chemo training session on next Monday and will start Yervoy IPI (ipilimumab) on the 21st. One treatment every 21 days for 4 times and the one treatment evey 90 days for 4 times. My oncologist has told me that i have a more than normal chance with this chemo because my Melanoma is at stage 4a. It has matastitized in the lungs and the brain and not in the liver or bones. 25% chance of being effective versus 10% or less.
Today is my last whole brain radiation treatment. This will be number 14. Only real side effect is that i’ve lost most of my hair so i shaved the rest of it off. Kind of cold here in central Illinois. Since i have some side effects such as a Sunburn like condition on my temples and forehead i have to constantly use creams and ointments to treat it. Does anyone know where i can get a head cover the wear at night so that i don’t stain the pillows. I’m scheduled for a follow-up MRI on the 17th to determine the effectiveness of the radiation treatments.
Looks like i’m going to get a round of golf in today, tomorrow and Friday. Weather is getting better here.
M.D. Anderson has refused to do a 2nd opinion because i have already started and completed the radiation treatment. My oncologist is going to call them and see if he can get the rethink.
I’ve been asked to have a follow up PSA test for my prostate cancer and am trying make up my mind if it’s really necessary.
Have a great Day All.
Been having some issues with sunburn like redness and extreme dry skin around my temples and my forhead. Found out that bag balm works great. Dairy farmers use it for their milk cows.
Broke the radiation machine on Wednesday so no number 12 treatment. The machines only 2 mos old but the problem seemed to be between the machine and the interface to the massive door to the room. Anyway i’ll have to catch up next week.
Hope all enjoyed thanksgiving. I’m stuffed. These steroids don’t decrease my appetite at all.
Had all of my family together this last weekend. We all came together on the future and next steps.
One thing I made each of my children do for themselves and their children while we were sitting at the kitchen table was to take out their PDA devices and place a calendar event on their calendars for my birthday for each of them to have a full body scan done by a dermatologist. And then I made them repeat it 6 months later. If we can get one positive out of this situation it is that they need to be preventative regarding Nodular Melanoma.
Got our funeral arrangements done Friday. Should have done that a couple of years ago. The family agreed on what those arrangements would include and setting the plans was easy.
Going for a review and update on our Will etc next week.
Starting to feel a little something in the skull now after the 4th treatment. Feels like a little dullness.
Had first radiation treatment yesterday. Will have a total of 14. 1st one took a little longer as they made sure the mask alignment was targeted at the image model. The treatment was unusually quite. No side effects yet but i’m sure i’ll start some of those in further treatments.
Any advise regarding seizures? My oncologist has forbidden me from driving while i’m taking these treatments because of the possibility of seizures.
How do you know if they are coming on?
What happens when they occur?
What do you do at the time they occur?
I start my whole brain radiation treatments today. Right now the schedule is every week day for the next 14 days. Then another MRI and decision on next step.
Trying to get an earlier in the day appointment (Before 11:40am) so I can play golf each day. It’s a very easy way for me to keep up the physical activity. I walk 18 holes each day. My group goes off the 1st tee at 12:00 noon.
Walked into my Medical Oncologist office today for a meeting to go over all of the tests that have been completed and the current radiation plan. He’s the lead on my combined team. When I mentioned that my insurance company refused to cover the BRAF V600 test he said: “I have already taken care of that. I called them and explained to them what the test was (they had never heard of it before) and what the results were going to be used for and they approved the test”. I don’t know about you but I was impressed. He hadn’t waited for me to present the problem he took his own initiative to solve the problem. I have to say that I have been overwhelmed with the quality of care from administrative staff, clerical staff, technicians, nurses and doctors in this whole Methodist Medical System here in Peoria. They all work as if they were all in the same organization. All of the tests are shared electronically between facilities (Both Methodist Hospital and Illinois Cancer care and Illinois Surgical Group) and they communicate daily on just my case as well as all others.
My medical oncologist just returned from a one year sabatical to Duke University to study cancer research etc. He’s on the oncology board at MAYO Clinic.