› Forums › General Melanoma Community › Stage 4 & Pausing Treatment – Need Advice
- This topic has 15 replies, 7 voices, and was last updated 5 years, 3 months ago by
Dympsd.
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- December 27, 2018 at 11:57 pm
My wife was diagnosed with Stage 3 in 2016. Surgery was used as the primary treatment to remove her infected lymphnodes and then she entered a clinical trial to get access to Keytruda which she went on adjuvent and the trial was 1 year. She ended the clinical trial in January 2018 and all her scans were clean. Everything seemed ok except that she ended up getting post treatment colitis which she never fully got rid of. Later this year (October?) we learned that her cancer was back and was on her Liver and Hip. Within one month we learned it moved to her spleen, lung and spine. The doctors said it was very aggressive.
Althought her colitis never fully cleared up, she was on low-enough steriods that we could start Opdivo. She had three treatments and toleraed it well so they added Ippy. She had her first combo treatment (Nivo / Ippy) in December which brought on a ton of side effects. Full on colitis, vommiting, fever/chills, horrible heartburn, nausea… most of these we were expecting. However, due to her weight loss and side effects and I think some poor liver labs, we learned today that the doctor does not want her to get a second combo treatment unless we can get the colitis under control.
Here is where I need your help /advice. She is going on steroids but the Doctor said that she may only have a few weeks and I write this post completely in shock because there has to be something else we can try. They said surgery was not an option and trying Keytrude is not an option and I guess doing Nivo alone is not an option. She is 35 years old. We were married in May of this year… is there anything I am missing?
We are in Pennsylvania and our doctor knows everyone at Sloan Ketteting so he was not against a second opinion, but he said they would not have any other treatment options. Are there other doctors or facilities that can give us some other treatment options? Is there anything we can do to extend her odds?
Where are my stage 4 community members who have the same diagnosis and what are you doing?
We are waiting on results of Brain MRI to see if it spread there. As of October 23rd it was not in her brain, but in October, we did not know how aggressive it was. They say very aggressive…Please help.
Thanks, Erica
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- December 28, 2018 at 12:22 am
Erica, I am so sorry you and your wife are dealing with all this. I presume she is not positive for BRAF??? If she is positive the BRAF/MEK combo's may help in decreasing her tumor burden rapidly. Adding radiation is something I would ask about. It is not always feasible due to anatomy and tumor location, but if it is possible it may help with any pain or other symptoms the tumors are causing but additionally, we have learned that when radiation and immunotherapy are combined (for mets in brain AND body), you get a better response than when either treatment is used alone. Here are tons of reports:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
It is true that one cannot continue treatment that is causing organ damage that may, in itself cause morbid damage, but….if one chooses….if you have no other option….you can push for treatment. Meaning, if steroids can bring the colitis into some modicum of control, then many do continue either Keytruda or Opdivo as a single agent WHILE taking steroids. Pushing hard for that would be a personal choice, as is so much of melanoma treatment.
Beyond that, looking for trials could be a possiblity. You can use this site: https://clinicaltrials.gov/ You can enter Stage IV melanoma and see what comes up. Inclusion and exclusion criteria are noted and at the bottom of each trial description, there is a list of trial locations.
I would certainly make sure I did check in, or have my doc check in, with a melanoma specialist. Jeff Weber will always answer questions sent his way. https://nyulangone.org/doctors/1053348706/jeffrey-s-weber The folks at Sloan Kettering are awesome as well. It would be worth asking ask what trials either of those places have going that may be options.
Don't know if this helps much. Hang in there. She is very lucky to have you in her corner. I wish you both my best. Celeste
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- December 28, 2018 at 1:34 am
Hi Celeste,
Thank you so much for the very quick response and all of that info. I am her friend and we are all working together right now to try to find the best treatment possible. We will look through that information and see what would be the next best step, as radiation could be a good question to ask her doctor, especially after reading about those positive results.
( She is not BRAF positive)Thanks again,
April -
- December 28, 2018 at 1:36 am
Dear Erica,
I too am sorry to hear this. I think Celeste gives the best advice.
I have been in a similar situation twice before, having to stop treatment because of bad liver numbers, first on ipi, second on keytruda. But i was stage III so there was a little less urgency. My doctors would not allow me back on treatment until steroids had brought the numbers down and then i had to stay off steroids and have OK numbers. But Celeste seems to hint that some doctors may allow treatment while on steroids as long as the numbers are OK.
i would seek a second opinion, not necessarily because the first opinion is incorrect but also to reassure yourselves but also to get a different view and ideas. Its helped me in the past. And make sure to try a good melanoma specialist.
i would also search for clinical trials. The second opinion doctor if from a great hospital may also be plugged in to these. If i go to stage iv then my doctor has said we will go to trials.
good luck and lets hope that things are under control, that what you saw in october has not grown. Then once the liver numbers improve your wife should be able to go back to monotherapy nivo alone or keytruda alone. Ipi may have caused the liver problems
Mark
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- December 28, 2018 at 3:14 am
Hi Celeste,
As April stated, thank you for your reply and great information. When you are sitting with the doctor, you think you have all your questions answered but then you get home and wonder, “why did we not ask about radiation” or similar questions. We trust our doctor and based on your reply, it seems we are following protocol right now with the steroids so I am really hoping her bloodwork flattens out a bit so that we can advocate for the combo treatment again. We have all hands on deck to make sure we are not missing anything. This is all surreal. Appreciate the links to the clinical trial site and the research posted on your blog. Right now I am very curious if radiation could help in the interim as palliative care but also for the possible other benefits you mention.
Many many thanks,
Erica
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- December 28, 2018 at 3:15 am
Hi Celeste,
As April stated, thank you for your reply and great information. When you are sitting with the doctor, you think you have all your questions answered but then you get home and wonder, “why did we not ask about radiation” or similar questions. We trust our doctor and based on your reply, it seems we are following protocol right now with the steroids so I am really hoping her bloodwork flattens out a bit so that we can advocate for the combo treatment again. We have all hands on deck to make sure we are not missing anything. This is all surreal. Appreciate the links to the clinical trial site and the research posted on your blog. Right now I am very curious if radiation could help in the interim as palliative care but also for the possible other benefits you mention.
Many many thanks,
Erica
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- December 28, 2018 at 12:37 am
Hi Erica, I too am stage 4 with mets in my liver,spine and arm. I recently started ip I nivo and after 1 at dose my ld h went from 300 to 1000 and by week 3 up to 1400. My spine now has tumors through top to bottom. My cancer is very aggressive and my doc said yesterday she was very worried but have me dose 2 of the combo and referred me to spinal.radiation which I have appointments tom tomorrow. We were not surprised because I had been in pain and my visible tumor was growing like crazy. They did say i could try to get some response from braf me k but can't do that until.after radiation. We too are freaking out a bit but hoping my immunotherapy will kick in. I would definitely ask about radiation and bra f me k . Wishing you both the best and some answers soon.
Vince
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- December 28, 2018 at 1:40 am
Hi Vince,
I am Erica and Emily’s friend from the above post. We wish you the best of luck and hope that the immunotherapy kicks in, please keep us updated. Thanks for getting back and sharing your story.
April -
- December 28, 2018 at 5:20 am
Hi Erica
I have been NED since July and stopped Keytruda in October due to colitis. (similar to your friend) I went on predisone for 5 weeks, but as I was tapering off predisone the symptoms returned. They suggested a infusion of rimcaid. It helped but did not completely stop the issues. I will be doing my second infusion of rimcaid this week. Hopefully, this does the trick. My oncologist stated we could rechallenge the keytruda if the melanoma returned but would have to stop immediately if the symptoms returned. I am wondering if you have tried rimcaid. If you could get the colitis under control with this maybe you could rechallenge opdivo or keytruda. Did your friend have any symptoms to indicate the melanoma had returned. I posted a post regarding leg pain. Your friend situation is scary and makes me a little nervous. I am hoping and praying for the best for your friend.
Tammy
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- December 28, 2018 at 7:21 am
Hi Tammy,
We have not tried Rimcaid to date but that is surely something we can ask about to help the Colitis. Is that infusion based? How long had you been on Keytruda when your Colitis began? Also, was your treatment post surgical or was it given as the primary treatment?
As as for my wife’s cancer, she was diagnosed at stage 3 when we found a lump in her armpit which turned out to be melanoma. Her gynecologist found the lump during a breast exam and Emily had not experienced any pain with it. We also never found her source melanoma.
She was not in pain when first diagnosed and even until recent, did not really experience pain from the cancer. When it returned it was caught on a CT since she had to get CT’s done everything 3-6 months because of the clinical trial she was on. From the time it appeared on her scan to today, it has moved very quickly and she is now in a lot of pain related to the tumors on her liver and spleen. However, all this pain is relatively new. I think I noticed a post on leg pain so I will go look at your post and see if anything stands out to me about Emily’s experience and yours.
I hope we can try the Opdivo and ippy again. Thank you for sharing your story too.
Erica
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- December 29, 2018 at 2:36 am
Hi Erica
I was on keytruda for 14 months when I developed colitis. Rimcaid is infusion based and it takes about 3-4 hours from start to finish to complete. Depending on your insurance it takes awhile for approval. If possible, I would have it ordered by a melanoma oncologist. My local oncologist and GI physician have little knowledge. My GI doctor stated I didn't look sick to have the treatment. I stated I don't look like i have stage 4 cancer, but I do. I was first diagnosed with stage 2 b in 2014, had surgery to remove with every 3 month check ups. In 2017, found two nodes next to primary. Stage 4 at this point. It spread to the lungs. Keep us updated on your wife's health. Keeping you in my prayers and thoughts. If possible, maybe you can get a second opinion with MD Anderson. I was really impressed with them. I went there for a second opinion.
Tammy
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- December 29, 2018 at 4:49 pm
Thank you Tammy. i will surely keep you updated and I want you to do the same. I want to stay in touch on because her outlook seemed so poor from our last doctor visit and yet it seems like there are several community members living with stage IV. Do you recommend any speciifc doctors at MD Anderson? We looked into NYU Langone to see Dr. Jeffrey Weber and should have an appointment in January. However, Dr. Weber and our current doctor (Dr. Agarwala) seem to be in touch and I feel their recommendations and treatment plans will be similar. We are paused on treatment right now and we have mentioned other options such as radiation and what it would take to start treatment again and they are sticking tight to wanting the colitis under control before trying again. That said, they said she may only have weeks and she could be on steriods for weeks so it seems like an impossible situation. Appreciate your support and any recommendations you have. Tammy, have you been stage IV since 2017?
THanks,
Erica
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- December 29, 2018 at 6:18 pm
Hi Erica
If you interested in MD Anderson I can find out the name of the doctor I saw. He was friends with my oncologist at University of San Francisco. They had similar treatment plans but also some differences in treatment. I dicussed those with my oncologist at UCSF and her thought process. One of those differences were brain mri. MD does them every 3 months and she believed you didn’t need unless you were having symptoms, especially when I was doing so well on keytruda. She agreed to have one every six months, unless otherwise warranted. I have heard Dr. Weber name on this forum. I believe in a very positive light. You can search threads by putting his name in the search button. My question to your doctor would be If nothing can be done until the colitis subsided and the diagnosis is not looking so well why the steroids? The steroids gave me terrible insomnia and wouldn’t want to go there again. Also, if they did cure the colitis at what point could you go back on the immune therapy? Right away or do you need to wait weeks for your colon and pancreas to calm down. I would ask what the plan is since it they are not giving you many options at this time. You might want to ask Celeste. She is very knowledgeable and has a medical background. As she said you have to advocate your needs in your treatment plans. I am so sorry you are dealing with this and pray for this to turn around. I can only imagine how scared you both must be. This is a great place to be for support. Everyone on this forum is pulling for you.
Tammy
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- December 29, 2018 at 11:04 pm
Hi Erica, I had appt with palliative care to get my pain under control and radiation oncology yesterday. Plan is 10 rounds of radiation on spine since it is everywhere. Then I will see if I will get round 3 of ipi nivo or go on braf again. No decision made on that yet. Radiation starts Jan 6 , hope you are getting a plan also. I'll let you know how radiation goes. Best wishes and I'm keeping positive vibes going for you both.
Vince
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- January 10, 2019 at 6:11 am
So sorry Erica this must be so difficult. My husband was recently ( Nov 2018) diagnosed with Multiple mets brain, liver and kidneys. Had largest tumor resection, cyber knife and now on second Keytrude infusion. After his cyber knife he had issues with brain swelling and was placed on steriods but weaned leading up to Keytrude. Could not tolerate the low steroid dose so back on 4mg then 3mg three times a day but given second dose immunotherapy reguardless. The oncologist told me that new Data seemed to show that steriods can be given during immunotherapy and don’t effect it as previous believed though I do not have the research on that myself but I’ll take their word for it for now. Hope you guys are keeping strong
Dympna
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