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March 8, 2013 at 2:49 am #21088JilllyParticipant
My husband had his PET scan on Monday and we found out that the melanoma is spreading. He has new tumors in his leg and abdomen. It seems to be sticking to the lymphatic system, which is good, but of course could get into his bloodstream anytime. So radiation is out and he will be starting on Yervoy. His first treatment will be tomorrow. Am scared but hopeful at the same time.
JillyMarch 8, 2013 at 3:36 am #59518AnonymousGuestJillly wrote:
Am scared but hopeful at the same time.
Yes, it is scary and hope sustains us as we continue with the struggle. Your love for Vern is obvious and what a treasure and companion you are to him Jilly.
The Yervoy is a good plan. I also recommend you start working on plan B which would be trying to get Vern into a post-IPI PD1 trial and/or a TIL trial. Also get testing for NRAS.
JeffMarch 8, 2013 at 5:09 am #59519abdormaParticipant
I am very sorry to hear your news.Vern and Tom seem to be having a similar course. And it is scarey and seems like things are happening fast. We have had some sad times in the lasst few weeks. Tom’s PET scan at end of January showed progression so he immediately was taken off Zelboraf and three days later started on Yervoy. He had PET scan today and we meet with oncologist in the morning and go for round three in the pm. His tumor load was low at the start of this but he has been in significant pain for the last two weeks we think due to a compression fracture on one of his vertebra caused by tumor on the vertebra. This is the first time he has pain with this disease that wasn’t related to surgery or treatment and it is scarey when you know it will be weeks before the Yervoy kicks in. As Jeff has taught us, alwys have a Plan B and we are hoping for a PD1 trial if Yervoy doesn’t do the trick.
If you are at Mayo tomorrow, look for a blind guy in a wheelchair being pushed by a chubby whitehaired (prematurely!) woman and that will be us.March 19, 2013 at 12:08 am #59520dkmcParticipant
Scary is so true! I wish Vern & Tom much success with ipi working its magic. So hard to wait I know. Remember it took from first dose in Nov 2012 to March 2012 before Don became NED so hang in there! Take Care, KarenMarch 20, 2013 at 4:30 am #59521abdormaParticipant Karen,
Thanks for the post and the words of encouragement. I think you must have ESP because the last time you sent a post saying “hang in there”, I really needed to hear it and that is true this time. My husband (Tom) has finished three rounds of IPI but his melanoma has continued to progress with tumors getting bigger every time we go in for the next round of treatment. He is also in significant pain which is so,so hard to see. He is undergoing palliative radiation for tumors on his spine one of which caused a compression fracture. Today was his 4th of 10 radiation treatments but so far there is no change in his pain level. Until today, he was also taking low dosage of steroid which I think may have been suppressing the IPI as his rash subsided and it seems like his subcutaneous tumors feel bigger. Tonight his pain level has increased to a new high so it is really scary. We are starting to think maybe the steroid was helping the inflamation of the tumors. Who knows! We know tumors grow on IPI before they shrink but it is really hard to not feel right now like the goldarn (would like to use stronger word) melanoma is winning the race.
So thank you for the words of hope. We need them. You are a blessing.
Jilly, I hope things are going okay with you and Vern. I know you got socked with more snow and winds and it is hard to think that spring will ever come to beautiful Minnesota this year. Just makes everything in our everyday lives just a little tougher.
annMarch 20, 2013 at 8:23 pm #59522dkmcParticipant
Ann- wow you are going through so much. Don was going to do all 4 doses no matter what so he (with oncologist blessing)decided no scans until I think it was about 4 weeks after last dose of ipi. This showed lung mets gone but there had been a new tumor on his back which when biopsied showed almost no viable melanoma cells & by the time the next scan was gone completely sooo his did progress while he was on ipi- we just didn’t do scans so we did not know! I know he is so very lucky & I want everyone to respond-I feel alittle crazy when it does not but it is true you have to wait it out. I pray the radiation will give him relief from the pain & I hope he has some very good pain medication! Praying for you both, and like you all we have plan B-C-D waiting for when we need them. Anyway it makes me “feel” alittle bit more in control- even if I am not! KarenMarch 21, 2013 at 1:33 am #59523JilllyParticipant Vern had is first treatment of Yervoy almost two weeks ago. He is doing pretty well, has had a rash and fatigue but nothing worse so far. He has considerable swelling in his leg due to the lymphedema and has mentioned a few times in the last few days that his leg hurts. This is the first time he has complained about pain, so it kind of worries me. He has blood work and sees the oncologist every Friday, but nothing has shown up there yet. He is supposed to go to the lymphedema clinic on Friday also so I hope they can get him a stocking that works better than the one he has.
Ann, are you in Minnesota too? We have gotten so much snow lately…now I am worried about flooding. Hopefully the new dike will help and we can still get out of town via airboat or National Guard truck.
Hope things improve for Tom – it’s so hard to watch them go through this damn disease.
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