Connect
Stopping Immunotherapy for Metastatic Melanoma due to Toxicity
It wasn't long ago that I introduced myself here at Mayo Clinic Connect by saying I was actively and successfully undergoing Keytruda infusions for metastatic melanoma that had been detected in my lung approximately five years after a lesion had been treated on my face. If a person could consider themselves lucky with such a diagnosis, I suppose I'd have to say I was, as the lung nodule was a lone incidental finding on imaging that had been done for an entirely separate reason; I was able to undergo a biopsy and begin immunotherapy within two months of detection. Even luckier, the lesion was fully resolved within the first three months of treatment.
But I've often compared metastatic melanoma to Whack-A-Mole as you may successfully whack down one metastasis, only to have another pop up somewhere else. That is why it was proposed I stay on the full two year course of treatment, a plan I was totally on board with. Although I initially had what's referred to as an adverse event triggered by the therapy in the form of it causing an inflammation of my thyroid, I was treated appropriately and continued on with my routine infusions.
Things changed rather suddenly in September following a hospitalization for fever of unknown origin. This began a downhill course of gastrointestinal symptoms that quickly spiriled with a series of subsequent hospitalizations: C-diff, then CMV (cytomegalovirus) colitis, followed by a confirmation of ICI (immune checkpoint inhibitor) colitis. It was two months of some of the most intense pain I've ever experienced; I described it as childbirth combined with colonoscopy prep 24/7! There had been a very real chance of colon perforation or sepsis, but thankfully I was well monitored throughout this time. Needless to say, during this period my Keytruda infusions were place on hold.
When I met with my oncologist in December, after I had achieved some stability, he informed me that due to the toxicity demonstrated by my reaction the risk vs benefit of continuing immunotherapy was too great; the chance of recurrence of the symptoms I experienced too high. However, this really hit me: I felt as if my safety net of Keytruda keeping the recurrence of melanoma away was being pulled from beneath me. My oncologist went on to reassure me that I demonstrated a rapid response, I obtained a positive result within the first six months and that strong reactions such as mine are often linked to more favorable long term outcomes.
I've come to accept all of this as reassuring. Even in the midst of my current ICI flare, I was further encouraged after having met with a GI doctor who specializes in this condition and feels confident with treatment it can be managed, even to the point of eventually restarting immunotherapy sometime in the future.
Most encouraging of all, my PET scan yesterday was clear. I now remain as I had been previously: a large degree of optimism for the future combined with confidence that I can handle whatever awaits down this melanoma journey.
Like
Helpful
HugInterested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.
Connect
@grammato3 great news to hear about your PET scan yesterday! And thank you for your detailed history for all of us to read. It's important that we understand the journeys we take in our unique situations. Here's to continued clear PET scans! Ginger
-
Like -
Helpful -
Hug
1 Reaction@gingerw: thanks, Ginger. I admit it took me a while to post this as I was grappling with the ramifications, then dealing with the disappointment of a setback with the flare, but I knew the path I was on was going to be filled with curves. BTW, my little night stand “treasure box” now has a new use - a safe place to store my moisturizing mouth spray and tablets I need at night so my mischievous puppy doesn’t get to chew them!
-
Like -
Helpful -
Hug
2 ReactionsI have been on Keytruda treatment alone for 21 months with 19 infusions for Kidney cancer. Up until recently the only side effect that I had was skin rash; I am 83 year old male. However, about one month ago a routine blood test done by primary doctor showed fasting blood glucose had spiked to 113, and A1C had gone from 5.6 to 5.7. A subsequent blood test done at oncologist office showed glucose was still at 103. I am scheduled for another infusion middle of February, but I have decided that the chance of a serious reaction from Keytruda is too great and will not continue. I have a CT scan in two weeks; the last four months ago was good.
-
Like -
Helpful -
Hug
1 Reaction@ronsale: It’s admirable you track your lab results so closely. While I understand concerns about increasing glucose levels to what is generally considered pre-diabetes range, I’m wondering if it’s significant enough to warrant discontinuing treatment at what I imagine is nearly the end of your treatment. Perhaps more frequent monitoring of blood sugars would be considered in the interim?
It’s certainly your choice, however such a decision would probably be worthy of a more in-depth conversation with your medical provider first. Have you had such a conversation to hear their perspective?
-
Like -
Helpful -
Hug
1 Reaction@grammato3 Actually at my last appointment about two weeks ago when I was scheduled to have twentieth infusion in a little over 21 months I had a frank discussion with PA with whom I had the appointment; I also had labs done that day. I made her understand that because it was the first time my fasting glucose was so high and that my A1C went from its prior 5.6 to pre-diabetes level of 5.7. Also, guidelines for Ketruda taken alone as I have been taking it should be taken for one year with a maximum of two years. We agreed that I would not have the twentieth infusion at the time, but that I would get a CT scan done and then decide the next course of action to take after results were in. She agreed to make a later appointment after date of scan. I should also mention that I have never been diagnosed as having pre-diabetes and that there is no history of diabetes that I am aware of on either side of the family. Since Keytruda has the potential of causing diabetes in about 2% of those being treated I am being cautious as to continuing; also, I am concerned of the possibility of getting some other serious condition. It should also be noted that I have severe osteoporosis which precludes me from getting any type of lengthy steroid treatment for any condition that Keytruda may cause. One positive was that the labs done at the time of that appointment showed that glucose level went down to 103 from the 113 done at primary doctor two weeks earlier. It's a difficult decision; the key as of today is what the CT scan shows.
-
Like -
Helpful -
Hug
2 ReactionsI have been on keytruda since 2022 and will have to stay on it every 3 weeks forever. I was diagnosed with state 4 metastasized melanoma in my lung inoperable. I responded quickly to keytruda and went into remission very quickly but because melanoma hides and could come back anytime I have to stay on it.
This is my 4th cancer since 2014.
Breast, melanoma on shoulder, thyroid and now melanoma in lung.
It has damaged my heart but medication is taken care of my heart. I am asthmatic and keytruda is effecting me to the point of breathlessness whenever I get out of my chair. As long as I am sitting I am fine. I use nebulizer 6-7 times a day and it only acts like a rescue inhaler. My main 3 doctors don't listen to me about how bad it is. I can't go anywhere. It is difficult to explain. It's not like an asthma attack. There is a definite difference.
When I move around ( even slowly) my oxygen levels drop to 84, 85 but as soon as I sit it jumps to 95, 96.
My heart doctor did change one medication but there has been no change in my breathlessness.
I have not heard of anyone else with this problem.
God bless everyone.
-
Like -
Helpful -
Hug
1 Reaction@songinmyheart54: it's so difficult to have to deal with multiple diagnoses of cancer and then have to manage side effects of treatment as well.
Shortness of breath has been reported with Keytruda for some individuals. I presume you have been undergoing routine surveillance with imaging after having the metastatic melanoma diagnosis; by this I mean, regular imaging such as CT scans at various intervals to check to see if there has been a recurrence. Most treatment regimens for Keytruda are capped at two years. I'm curious as to the rationale for remaining on Keytruda indefinetily. Have you discussed this with your medical provider?
@grammato3 yes I have CT scans every 3 months.
My doctor says that melanoma hides so if treatment is stopped because of remission it could flare up fast and furious and possibly keytruda would not work a second time.