› Forums › Cutaneous Melanoma Community › New to group-have a question
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tkoss.
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- March 12, 2020 at 3:11 pm
Hi All,I am new to this forum, and so thankful I found it! In 2018 I had a mole removed off of my calve. After biopsy, and further testing, I was told by my oncologist I was stage IIIb. It was in my calve and had traveled to my sentinel lymph node in my groin. I had surgery that removed over 1/2 of my calve, and my lymph node. I had started infusions of Keytruda prior to surgery, and continued treatments every 3 weeks for 12 months. I had some complications such as an infection where the lymph node was removed, which landed me in the hospital with sepsis, and another surgery to “clean” out area and put drains in for awhile. However, I weathered that and was fine, eventually. Also, contracted shingles due to my immune system being lowered by Keytruda.
I was so excited to complete my last treatment after 12 months of infusions, and was scheduled for another scan. Unfortunately, scan showed another swollen lymph node in my groin area again. Tissue testing confirmed it was malignant melanoma. My oncologist then started me on Opdivo & Yervoy together. Two weeks after my infusion of the combo, I was admitted to the hospital. I had GI issues, (Colitis) and test confirmed my immune system was attacking itself. I was mentally and physically exhausted. My pain level and weakness was something I had never experienced to that degree before. After going thru several tests / procedures to confirm this, I was then given a treatment of Remicade. I was in the hospital for a total of 22 days. Part of the time I was in critical care. Afterward, I had one additional infusion of the Remicade at the cancer center and I must say that drug is a Godsend!!4 weeks later, I went back into surgery, had 15 lymph nodes removed from my groin area, and 4 more were malignant. My oncologist told me I can no longer have any types of immuotherapy drugs due to my immune system. The fear being next time they could not stop it again if things went wrong. So, my last brain & CT scan were clear for the first time in two years, Thank God! I go every 3 months, and my next brain and CT scan are at the end of this month. I’m trying most of the time not to live my life in fear, and trust God, no matter what happens. But, I will admit I’m a littler anxious about the scan and if something comes back I’m not sure what my treatment options are out there…… that’s my question. Being that I’m now 3C, what are my treatments options out there? I know they are saying that Interferon is really not as good as the immunotherapy drugs. I know my oncologist said we will cut it out surgically wherever we can, but I would feel better knowing there could also be a treatment to increase my chances of remission. I’m not sure about chemotherapy. I think I read their might be one out there? Has anyone had it, and did it work?
I’m feeling great, done wiith my physical therapy, and exercising on my own now. And finally feeling like my old self again…….
Thank you for your time, and any feedback would be greatly appreciated.
Best Regards,
Lynn
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- March 12, 2020 at 4:01 pm
it sounds like quite a saga. I am where you started out, 3c. some axillary lympth nodes removed. Nivo 2x a month. 4 treatement so far, so no scan yet to see if it works.luckily I don’t have to think about it much because I am running around wiping off everything I touch and washing my hands 6x a minute.
if we survive melanoma and covid we should get nominated to the medical hall of fame. I have yet to figure out how to navigate the infusion clinic.
keep up your spirits and post often.
tim
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- March 12, 2020 at 6:04 pm
Hi Tim! I’m happy to hear you are tolerating the Nivo. If I’m correct, I believe that is the same as Opdivo?? It was tough for me, that part anyway. But I persevered, and I know you will too! My doc said that Opdivo and Yervoy were great if you can tolerate it, so keep up the great work! I’m hoping like Jackie said in her reply that I had enough in my system to keep clear for awhile!! I’m a prayer warrior, so I hope you don’t mind me praying for you! I had to chuckle when I read your wiping everything off you come into contact with, me too!! Hopefully, everyone is! I know I’m washing my hands so much they are looking twice my age due to dryness! For me, laughter in the little things helped me, and continues to do so. I always took someone with me to my infusions that I knew would be able to laugh with me, share funny stories, and let me sleep when I needed! I’m trying to live my life one day at time. Someday’s easier than others like trying not to worry about this upcoming scan. I’m putting my faith in God that research will just continue to keep getting better and better, and break through’s will continue to happen, just like immunotherapy drugs that have come about today. One last thing Tim, WE will fight the good fight until the end, when ever that day may be, but I think we ALL deserve to be in the Medical Hall of Fame right now!! We are fighters!!!!!:-) Please keep me updated on your progress. Take care, Lynn -
- March 12, 2020 at 10:46 pm
ignorance is bliss. so around here, in north texas, we don’t feel like we are in the strike zone of covid…..outa sight outa mind…………then my Priest showed up on the 6 O’clock news last nite showing ‘presumptive’ . this morning I was there at the split second opening minute of the tom thumb buying every manner of disinfectant they had. Oh and “Oh Lord I pray the keep my priest……..”
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- March 12, 2020 at 5:05 pm
Hi Lynn, as we say on this board, we are so sorry you had to join us, but you will find support and knowledge here. I’m so sorry all that you went through, the hospitalization sounds horrible. First, let me say I’m so glad the last scans were all clear, that is great news. Second, others will tell you, the good news is that having had even part of the Yervoy/Opdivo treatment regimen, the evidence is showing that it can still work and possibly as effectively and there is evidence that side effects are associated with increased progression free survival so I’m hoping your two rounds is the key and you will not have to deal with any future scenarios. But information is key, we agree with that! I also noticed you are in Indianapolis, you may want to consider getting a second opinion at one of the major centers where the current research is happening, I would recommend that highly and ask these questions if you are not already at a melanoma . I can’t speak to the idea that they can’t rechallenge with single immunotherapy in the future but sounds like you indeed had some pretty severe side effects, colitis being major and had progression on monotherapy prior to IPI/NIVO, but I would probably get a second opinion and ask that question. There are other non-immunotherapy treatments in the pipeline and clinical trials looking at all sorts of combinations when people progress after immunotherapy. They are also testing drugs from other types of cancer like breast cancer, particularly HER2. You will see several of our groups in clinical trials where they have progressed on immunotherapy or had to stop due to extreme side effects . There are also intralesionals (where the inject into the tumor) and TIL or Adoptive Cell Transfer (you would need to harvest cells from a tumor). I understand the anxiety, but if I was the patient, I would be aware of the clinical trials, especially if standard of care isn’t stopping progression. But just glad right now you are clear, so hoping you don’t have to look into any of these.If you search in the search box for “Bubbles” and “Primer”, she shares the link for her Melanoma primer, a comprehensive resource for all the questions you have. Including all the evidence about Opdivo/Yervoy treatment, severe side effects (called irAEs).
Many hugs and hoping you stay clear.
Also, did they do genetic testing? There is targeted therapy based on if you have a certain mutation. But I’m assuming they would do that before, but just double-checking.
Hugs, and hoping you get all your energy back soon. Jackie-
- March 12, 2020 at 5:39 pm
Hi Jackie! Thank you so much for all the info!! Yes, they did do genetic testing in the very beginning, and they are currently testing the tissue from the most recent removal of my lymph nodes that were malignant. I believe Dr. Bahtia said that it would help us know what direction to go in if/ when I have another recurrence. I believe he told me that I was resistant to Keytruda? If I remember correctly, I believe he said that I do not have the BRAF mutation? I could be wrong on the terminology/name. I go to Community North Cancer Center who is affiliated MDAnderson and he has communicated with them on my case. What I did not mention previously, is prior to my diagnosis, I have had for many years a Mast Cell disease in my bone marrow, Systemic Mastocytosis. Unfortunately, this has further complicatesd things. I appreciate everything you shared, so much of this is still foreign to me, terms, treatments, etc. It all has happened so fast. It’s great to have this site to better educate myself, and to keep an eye on clinical trials. I will look up Bubbles & Primer as you recommended. Thanks again, Jackie. -
- March 12, 2020 at 6:11 pm
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- March 12, 2020 at 6:22 pm
I’m glad to hear your center is affiliated with MD Anderson. I live about 15 minutes away from MD Anderson so if you ever need to come to Houston, you have a friend here and place to stay! We are originally from midwest too, Ann Arbro . I’m a medical librarian that now works in clinical research and I have a HARD time keeping up.. The research in Melanoma alone is moving so fast. You will get all this knowledge, I’m just hoping you won’t need it. You will see two people on this board in particular that really have their finger on the pulse of the new research and the evidence-based results from current therapies, Celeste/Bubbles and Ed Williams. I’ve also really enjoyed watching the videos that Ed posts from ASCO, etc. Sometimes, a video is a little easier to digest than some of the language in the research publications!
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Tagged: cutaneous melanoma
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