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Thanks for starting this thread Catherine. I haven’t logged on as much recently so it was nice to catch up with so many. So happy to hear the great stories yet feel for those still struggling with this awful disease. As for me I am doing well. My brief mel history was a WLE in 2006 for a .91mm melanoma, a left axillary dissection in 2011 (Stage IIIB), and a small bowel resection in 2013 (stage IV). I participated in an ipi-nivo sequential trial from Aug 13 to Aug 15. Other than some hypophysitis during the ipi phase which resulted in pituitary damage, the side effects from the trial were minimal. The big decision at the end of the trial was whether to continue treatment and whether to resect the remaining two tumors that had been stable for about 18 months. I grinded over those decisions for a while but eventually decided to stop treatment and to not surgically remove the tumors. Had the tumors been in a less risky location I probably would have opted for the surgery but due to their location the surgery would have been very risky. Next month will be the one year anniversary of coming off treatment. The two tumors have been stable for about 2 1/2 years. Next scan in about 3 weeks.
I’m sorry Catherine. I really hope you all can find a good treatment option. If anyone deserves some good Karma coming there way it would be you for all the help and compassion you show on this board.
Glad to hear you are doing well. Great update I know others will benefit from. I’ve admired your approach to your treatment.
Glad you are feeling well Mathew.
That’s awesome Cheris! Very happy for you.
That is very well written Catherine. Thank you for sharing. As a retired Marine the “fighting spirit” was something I fell into naturally. From the beginning I’ve viewed melanoma as my enemy and if I didn’t kill it, it was going to kill me. Probably doesn’t work for everyone but has worked for me. Having said that the words and thoughts of this blogger are wonderful and I probably use a lot more of them for my inspiration than I realize.
I had a pet scan about a year ago and neither of my two remaining tumors lit up. Of course I was hoping that means they are necrotic but my oncologist won’t go so far as to say that. The closet thing I’ve gotten to that is on one of my numerous CT scans since then one radiologist reported them as “appears necrotic”. In my recent discussions with Dr. Weber at Moffitt and Dr. Slingluff at UVA they both said they probably are not necrotic. I’ve guess they’ve seen enough cases now where they see these tumors become stable and “walled off” but not necrotic. Dr. Weber thinks they can stay that way for a long long time. Dr. Slingluff isn’t so sure and recommends surgery. Of course he is a surgical oncologist so he is probably biased that way. I’ve thought about doing a CT guided biopsy to see if one of the tumors is necrotic but even if the biopsy does come back necrotic there’s really no one of knowing if that whole tumor is necrotic and of course it wouldn’t guarantee the other tumor is necrotic. For that reason I’m leaning toward the surgical removal of both. I’m in the process of “interviewing” surgeons now.
Have you had any consults with a endocrinologist? I know these immunotherapies can wreak havoc on the endocrine system and can really make you not feel like yourself. I know it screwed with mine pretty good. Sometimes even with an endocrinologist it can take a while to sort things out but if that is the problem they usually can get things balanced out again. Best of luck to you.
Glad you are doing well Cheris. Like Erin I also recently finished up a two year trial and have come off treatment. I didn’t reach NED status but have been stable for over 18 months. It was a tough decision to stop treatment but what eventually persuaded me to come off treatment was a consult I had with Dr. Weber at Moffitt. He informed me in his first nivo trial the 15 patients who responded and made it the length of the trial, or a significant time before stopping due to side effects, none of them have recurred since stopping treatment. Many of these are 3 years post trial now I believe. I haven’t heard the 90% stat before but it does sound good. Dr. Weber, and I believe there are others in his camp, actually believe two years is overkill.
My decision now is whether to resect the two remaining tumors I have. Dr. Weber thinks it’s unnecessary but others I have spoken with have recommended removing them. Due to the location of the tumors it’s not going to be a easy surgery to say the least.
Best of luck to you.
What an inspirational journey he’s had. Thanks for sharing. Thanks for sharing Frank. Congrats. Hope you are back in the water real soon. Lak2,
Are you currently on any immunotherapy right now? It does effect patients in many different ways with the GI tract. Over the nearly two years I’ve been on Nivo my bowels movements haven’t been effected that much but I have a very active digestive system. What I mean by that is my stomach is very gurgly. Sometimes it’s amazing the noises that come from it.
As far as mets in the bowels. I progressed from stage III to IV when mets were discovered in my small intestines. I did have some occasional stomach pains which were very mild but long lasting (like 24 to 48 hours). The main symptom for me though was I got very anemic. Another symptom with intestinal mets which is really caused by bleeding in the intestines is dark stools which are kinda tar like.
Sorry for all the “poopy” talk but I think it is really important to monitor that stuff. What you describe doesn’t sound like bowel mets but like Catherine said I would talk to your oncologist about it.
JA, I agree with Mathew’s post on CTs vs Pets. I think another reason Docs may like CTs is they are cheaper than Pets. One thing to note on your post is that even Pets can’t find melanoma at the cellular level. They can perhaps find smaller mets than CTs because of the “glowing” effect that the mets have on Pet images. In my own personal experience it seemed like Pets were more effective than CTs at finding my mets that were in my small intestine.
Mathew, would be curious to see what your Onc says about your next Pets. My melanoma has been stable for about 18 months now and about a year ago I had a pet that had “no FDG uptake” on my remaining tumors. My onc has been very hesitate to call these tumors dead. The only thing he says is that they are not active metabolically. I’m planning on having a CT guided biopsy next month to hopefully confirm that they are dead.
BrianJune 17, 2015 at 6:57 pm in reply to: Ipilimimub / Nivolumab complete responder … what’s next ? #67261
I have not seen the phase I results for my trial. Your question has me curious though and I will do some digging to see what I can find out.
The sequence for my trial was 12 weeks of nivolumab then 12 weeks of ipilimumab and then 18 months of nivolumab. I did well on the nivolumab but during the ipi phase I had disease progression and developed hypophysistis.
It will be interesting to see if the order of the drugs make a difference.
I just found out today that BMS is allowing patients on my trial to continue indefinitely. I have a 6 hour drive to my trial so I won’t be extending but I still plan to stay on pembro or nivolumab.
BrianJune 7, 2015 at 12:53 am in reply to: Ipilimimub / Nivolumab complete responder … what’s next ? #67257
Thanks for starting this conversation. It is definitely a topic near and dear to my heart. I’ve been in a sequential trial of Nivo and Ipi since Aug 13. The trial is scheduled to end in Aug 15. I’ve done pretty well but still haven’t achieved the elusive title of NED. Since the trial has not given me any indication they intend to extend the trial I am planning to continue taking either nivo or pembro off trial. My way of thinking was that even though it looks like those who do recur after stopping treatment quickly respond once treatment is restarted, I just am not comfortable with that at this point. There are two patients with me at my trial location, one is on a nivo trial and one is on the same trial as me. They have both achieved NED. The nivo patient has elected to continue on treatment and the combo patient has decided to stop the drug once the trial ends. I think if I was NED I might be more prone to stopping treatment but with still some evidence of disease I’m a little leary. There’s another patient on MPIP who is also NED in a pembro trial and is being seen by Dr. Hodi (pretty well respected Dr. in the field). He has recommended she stay on the drug for the near term due to the few recurrences that have happend with patients. I think she is around 2 1/2 years on the drug now. I’ve heard second hand that Dr. Weber, another pretty smart guy in the field, doesn’t think it’s necessary to continue the drug. Also, one of the NED patients I mentioned above met with Dr. Evan Lipson at John Hopkins and he also said he didn’t think it would be necessary for the NED patient to stay on the drug. At this point it might be one of those questions that if you asked 10 doctors 5 would say yes and 5 would say no. I was really hoping so see more data from ASCO on the durability of the PD-1 drugs for those who have finished treatment but I think it’s really true that we won’t know for a couple more years. You truly are a trailblazer for us. Good luck to you. If I hear anything else I’ll be sure to post. I hope to have a appointment with Dr. Weber to discuss this topic in the near future.
So great to hear from you. So sorry to hear about all your difficulties. Congratulations on the well deserved courage award. If you are able I would encourage you to copy and paste your update over on mpip. I know there are many there that would love to hear from you.