› Forums › General Melanoma Community › checking in and experiences with Remicade
- This topic has 15 replies, 4 voices, and was last updated 10 years, 7 months ago by
BrianP.
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- February 24, 2014 at 5:53 pm
I haven't posted in a while. Last month was 2 years since I progressed to stage IV. I am happy to report that I have much less cancer than I did 2 years ago. And I feel great! I have celebrated many victories and made it through a few defeats. My history is getting harder to tell the longer I live, but hey, hard to complain about that!
Here is a quick rundown and then I want to ask a question.
Jan 2012 cancer in liver, bones, numerous other places
Feb 2012 radiation to femur and ischium
Feb-May high dose IL-2. Did all 6 weeks of the stuff, after each admission I could feel my subqs shrinking and disappearing. Unfortunately I could also feel new ones popping up
May scans show numerous tumors everywhere (50-100) and 25 small brain mets
June Temodar started. Yervoy started. One dose of Yervoy, colitis developed in 5 days, prednisone started working within days. I could feel my tumors shrinking like crazy. We almost started my 2nd dose, but decided because of my reaction to do a colonoscopy first, which looked good to the doctor, but the biopsy came back showing some inflammation/erosion. So we did not do the second dose.
Sept scans show all brain tumors gone and only 4 tumors remaining
Nov scans show one tumor near adrenal gland growing. I search for PD-1 trials (don't get in because of the colitis) and stop taking Temodar.
Jan 2013 radiation to tumors in adrenal/kidney area
Spring 2013 (not sure now when the dates were). Two tumors left over from IPI still showing growth, adrenal area and axilla. I start pain pills for my adrenal tumors, can't walk up the stairs or take deep breaths without pain. CREEPY. My amazing Dr. in Utah knew of one of Dr. Weber's trials studying PD-1 in patients who had had dose limiting toxicites to IPI. By some miracle I qualified and started to fly to Florida every two weeks.
Within days of the first PD-1 dose the pain is gone. Almost not side effects.
12 week scans showed progression of some tumors and shrinkage or disappearing of others. We decide to continue on with trial.
Sept. axillary tumor growing like crazy and I can't stand it anymore. I go to Fred Hutch in Seattle to see about their TIL program that was just starting up. I qualify for that too! The plan was to to resect that tumor (and grow the TIL cells from it) and continue with the Pd-1. However, we later learned that if I signed the consent for one trial, I was kicked off the other, so I could not go back to Florida. I didn't feel too bad because that tumor was growing like crazy on the pd-1 (it was the size of my fist).
Nov scans show growth of the adrenal tumors, they are now invading the kidney pole which made them necessary to treat. So the big question was do we do the TIL now (they were able to grow enough cells). Or do we try IPI again first (reinduction). I gotta say, my response to IPI was so incredible, I really really wanted to give that a try again.
Dec first dose of IPI a breeze. I waited for the diarrhea and it never came. 2nd dose was a different story. I got very sick to my stomach and an endoscopy showed trouble. The diarrhea started before we got those results, and the prednisone was started. After a few days it didn't seem to be making any difference and I had been in the ER from dehydration and I was sicker than I think I'd ever been (also running a fever which had everyone worried). We had to move to Remicade (while waiting for that to kick in TPN and a week in the hospital). This has me really worried. Do we know people on the board who have continued to respond to IPI even after being given Remicade?
We did scan just my abdomen mid January and it showed my tumors shrinking (not by much, but not progressing which was huge). We do a full scan in a couple of weeks. I would be way more confident if I hadn't have had to take the Remicade. What is your understanding of how this affects Yervoy's abilities?
Thank you for all your support. I am so grateful for this site. This fight is something awful, we need each other.
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- February 24, 2014 at 11:32 pm
Sorry, I can't offer much help with your questions Ali, but I was happy to see a post from you! I've been following your journey and always thinking/sending positive thoughts for you and your family.
I did receive 2 doses of remicade after 1 unsuccessful dose (3mg) of ippi, and a nasty bout with ulcerated colitis, then 4 months of steroid treatment with slow taper. No way to know if the 1 dose of ippi had any affect or not.
I am being treated at SCCA and had intended to enter the TIL trial there. My doctors Margolin/Lee, felt that would be the best treatment for me at this time. It's been 4 yrs. since I was diagnosed with Stage IV and so far have had a slower progression than most. The required scans for the TIL were done this past Fall and showed no new lesions and little growth in the current tumors in my armpit. It was a difficult decision for me, but I decided not to enter the TIL and opted for surgery only instead, removing the 2 tumors and a CLND of the right axilla, which now makes me NED! I will continue with more wait and watch!
I was wondering if you plan to proceed with TIL at SCCA, seeing they were able to grow the cells needed for the TIL? Wishing you good success with whatever you choose! Glad your tumor burden has been reduced and you are feeling great (or did you mean good! :))
Best wishes for continued improved health!
Swanee
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- February 25, 2014 at 1:28 am
Swanee, NED is amazing!! I am so happy for you. Thank you for responding. I think getting surgically to NED is a great option. We would have done that perhaps if the surgery woulnd't leave me with one kidney.
I hope I don't need the TIL, but I definetly want to try it out if this cancer won't be stopped. It might be a bit trickier for me to quialify now-I would need a colonoscopy that shows no colitis. I just weaned off steroids last week with great results, so there is some hope for that. I really liked the doctors at SCCA, I mostly saw Dr. Lee.
Keep me updated on all your successes! I am really doing great! Started running again and everything.
Thanks!
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- February 25, 2014 at 1:28 am
Swanee, NED is amazing!! I am so happy for you. Thank you for responding. I think getting surgically to NED is a great option. We would have done that perhaps if the surgery woulnd't leave me with one kidney.
I hope I don't need the TIL, but I definetly want to try it out if this cancer won't be stopped. It might be a bit trickier for me to quialify now-I would need a colonoscopy that shows no colitis. I just weaned off steroids last week with great results, so there is some hope for that. I really liked the doctors at SCCA, I mostly saw Dr. Lee.
Keep me updated on all your successes! I am really doing great! Started running again and everything.
Thanks!
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- February 25, 2014 at 1:28 am
Swanee, NED is amazing!! I am so happy for you. Thank you for responding. I think getting surgically to NED is a great option. We would have done that perhaps if the surgery woulnd't leave me with one kidney.
I hope I don't need the TIL, but I definetly want to try it out if this cancer won't be stopped. It might be a bit trickier for me to quialify now-I would need a colonoscopy that shows no colitis. I just weaned off steroids last week with great results, so there is some hope for that. I really liked the doctors at SCCA, I mostly saw Dr. Lee.
Keep me updated on all your successes! I am really doing great! Started running again and everything.
Thanks!
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- February 24, 2014 at 11:32 pm
Sorry, I can't offer much help with your questions Ali, but I was happy to see a post from you! I've been following your journey and always thinking/sending positive thoughts for you and your family.
I did receive 2 doses of remicade after 1 unsuccessful dose (3mg) of ippi, and a nasty bout with ulcerated colitis, then 4 months of steroid treatment with slow taper. No way to know if the 1 dose of ippi had any affect or not.
I am being treated at SCCA and had intended to enter the TIL trial there. My doctors Margolin/Lee, felt that would be the best treatment for me at this time. It's been 4 yrs. since I was diagnosed with Stage IV and so far have had a slower progression than most. The required scans for the TIL were done this past Fall and showed no new lesions and little growth in the current tumors in my armpit. It was a difficult decision for me, but I decided not to enter the TIL and opted for surgery only instead, removing the 2 tumors and a CLND of the right axilla, which now makes me NED! I will continue with more wait and watch!
I was wondering if you plan to proceed with TIL at SCCA, seeing they were able to grow the cells needed for the TIL? Wishing you good success with whatever you choose! Glad your tumor burden has been reduced and you are feeling great (or did you mean good! :))
Best wishes for continued improved health!
Swanee
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- February 24, 2014 at 11:32 pm
Sorry, I can't offer much help with your questions Ali, but I was happy to see a post from you! I've been following your journey and always thinking/sending positive thoughts for you and your family.
I did receive 2 doses of remicade after 1 unsuccessful dose (3mg) of ippi, and a nasty bout with ulcerated colitis, then 4 months of steroid treatment with slow taper. No way to know if the 1 dose of ippi had any affect or not.
I am being treated at SCCA and had intended to enter the TIL trial there. My doctors Margolin/Lee, felt that would be the best treatment for me at this time. It's been 4 yrs. since I was diagnosed with Stage IV and so far have had a slower progression than most. The required scans for the TIL were done this past Fall and showed no new lesions and little growth in the current tumors in my armpit. It was a difficult decision for me, but I decided not to enter the TIL and opted for surgery only instead, removing the 2 tumors and a CLND of the right axilla, which now makes me NED! I will continue with more wait and watch!
I was wondering if you plan to proceed with TIL at SCCA, seeing they were able to grow the cells needed for the TIL? Wishing you good success with whatever you choose! Glad your tumor burden has been reduced and you are feeling great (or did you mean good! :))
Best wishes for continued improved health!
Swanee
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- February 25, 2014 at 12:08 am
Ali – I don't have any specific knowledge of how remicade may impact the effectiveness of yervoy but I do have direct experience with both. I was treated with Ipi 10 mg (only treatment to date) and developed severe colitis after my 6th infusion (clinical trial with maintenance infusions). I was put on prednisone and eventually had one infusion of remicade (2/2012). Despite that I eventually achieved NED status in 10/ 2012 with no other treatment since the remicade and remain NED currently. At least in my case the remicade didn't seem to interfer with the ipi response. If interested you can find my story on the MIF forum (WITom pg. 23)
I pray that your upcoming scans show additional improvement!
Tom
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- February 25, 2014 at 12:08 am
Ali – I don't have any specific knowledge of how remicade may impact the effectiveness of yervoy but I do have direct experience with both. I was treated with Ipi 10 mg (only treatment to date) and developed severe colitis after my 6th infusion (clinical trial with maintenance infusions). I was put on prednisone and eventually had one infusion of remicade (2/2012). Despite that I eventually achieved NED status in 10/ 2012 with no other treatment since the remicade and remain NED currently. At least in my case the remicade didn't seem to interfer with the ipi response. If interested you can find my story on the MIF forum (WITom pg. 23)
I pray that your upcoming scans show additional improvement!
Tom
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- February 25, 2014 at 12:08 am
Ali – I don't have any specific knowledge of how remicade may impact the effectiveness of yervoy but I do have direct experience with both. I was treated with Ipi 10 mg (only treatment to date) and developed severe colitis after my 6th infusion (clinical trial with maintenance infusions). I was put on prednisone and eventually had one infusion of remicade (2/2012). Despite that I eventually achieved NED status in 10/ 2012 with no other treatment since the remicade and remain NED currently. At least in my case the remicade didn't seem to interfer with the ipi response. If interested you can find my story on the MIF forum (WITom pg. 23)
I pray that your upcoming scans show additional improvement!
Tom
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- February 25, 2014 at 2:08 am
Ali,
What a roller coaster ride you have been on! I've been on a heck of a ride myself but every now and then I hear a story like yours and I'm humbled. Your positive attitude and fighting spirit are inspirational. If you end up needing it I hope the TIL trial works out for you. I've been looking very closely at those myself incase my current PD-1 trial doesn't work out for me. I'll be praying for you.
Brian
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- February 25, 2014 at 2:08 am
Ali,
What a roller coaster ride you have been on! I've been on a heck of a ride myself but every now and then I hear a story like yours and I'm humbled. Your positive attitude and fighting spirit are inspirational. If you end up needing it I hope the TIL trial works out for you. I've been looking very closely at those myself incase my current PD-1 trial doesn't work out for me. I'll be praying for you.
Brian
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- February 25, 2014 at 2:08 am
Ali,
What a roller coaster ride you have been on! I've been on a heck of a ride myself but every now and then I hear a story like yours and I'm humbled. Your positive attitude and fighting spirit are inspirational. If you end up needing it I hope the TIL trial works out for you. I've been looking very closely at those myself incase my current PD-1 trial doesn't work out for me. I'll be praying for you.
Brian
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