› Forums › General Melanoma Community › New to posting, and questions re: Keytruda and anemia
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BitemeMel.
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- April 14, 2017 at 5:24 am
Hello,
After reading here, praying for many here, gaining hope, and learning so much, I can't believe I'm finally posting something after 2 years or so.
A little bit about us: I'm the wife of a great guy who also happens to be a stage 4 melanoma patient.We also have a 12 year old daughter 🙂 He is 54 and we first discovered his primary on his scalp in 2012. Went through all the standard, SLNB and surgery, it had not spread at that time. (as far as anyone knew, right?) Decided against interfuron (no regrets there) and just went with regular checkups etc. Fast forward to the summer of 2015, my husband started not feeling well off and on and reported feeling weak. My active husband started spending more and more time lying down and became tired easily. Then started the stomach and gut pains. They discovered he was severely anemic, and after numerous tests, it was finally discovered that he had melanoma tumors in his intestine and some starting in his lungs.
He was started on keytruda right away. Thank God, Keytruda for us has been a miracle. Within 4 months, the intestinal tumors were undetectable…gone. The lung lesions took a bit longer but eventually also gone. He has been NED for over a year and on keytruda now for 22 months. He has done very well on it, the side effects have been minimal and manageable. Fatigue, rash, cough, body aches…come and go, but that's been the worst of it. We are blessed beyond measure.
Now, to my question. Lately, he has reported feeling more tired than usual and says he feels "anemic". Not as bad as before, but he recognizes the feeling. He also noticed on his most recent bloodwork labs that his red blood cell counts have gone down steadily for several months as well as his Feritin levels. Steadily declining. So, oncologist has ordered a PET scan (getting that tomororw) a bit earlier than planned–he wasn't due for his next one until June. If that comes back clear, as we pray it will, he said next step would be colonoscopy. I assume they are trying to rule out bleeding anywhere as causes of the anemia. When he was initially diagnosed as stage 4, the intestinal tumors were causing the anemia.
Ok finally the question. Obviously we are scared as to what's causing these anemia symptoms. It's hard to believe though, that after all these months of success on keytruda and a clean scan just 3 MONTHS ago, that he suddenly would have tumors again. Does anyone know what else could possibly be causing him to become anemic again? Can it be a side effect of the keytruda? I read on a site that it could signal some kind of organ problems caused by the treatment. My husband has already been thinkng about going off of the keytruda at the 2 year mark.
Also, does anyone know anything about maintenance dosing? Is this even done? I'm wondering if he could do well to go on an every 6-week infusion instead of every 3 weeks. It's something we will definitely talk to his doctor about. I am scared to death of him going completely off keytruda but also scared of what it's doing to him long term. Thank you for listening.
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- April 14, 2017 at 4:38 pm
My blood work has been coming back as anemic since January. Been tested for iron and fertitin levels, those were normal. Then tested for folate and vitamin B12 level, folate normal and B12 low. Now on a B12 supplement, will see if it changes my blood labs.. as of yesterday, still anemic. If it doesn't do anything, the plan is to see a hematologist and have whatever tests done that they can do to figure it out. There are different types of anemia and different reasons it happens, mine seems direcly related to Opdivo, which is a PD1 drug like Keytruda. So it's possible his anemia is being caused by the drug as a side effect and not anything to do with tumors.
All the best,
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- April 14, 2017 at 9:48 pm
I think you are looking at two issues here. 1. Can anti-PD-1 cause anemia? Yes. A dear one of mine developed anemia while on it long before it was in the "reports". But there is a report within this post that might be worth talking to your docs about: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/side-effects-of-immunotherapy-part-7.html
Then, #2. How long does a responder need to continue to take anti-PD-1? That is the million dollar question. I was in a study of anti-PD-1 in 2010 for 2 1/2 years. We had no options…that was the duration of treatment. Since then, Weber, the lead researcher in our study told me personally that it was likely that we took the drug longer than we needed to. Since then many researchers have noted that the drug will attain a response in a certain amount of time. More than that, will not make things better…it will only put folks at greater risk for untoward side effects. Another dear one, managed by Sznol, went off anti-PD1 after only a 1 1/2 year or so…. He and I are both Stage IV melanoma patients. We are both doing well. I have not had any treatment since June of 2013…and have not recurred.
Melanoma is not easy. The decisions we have to make about melanoma is not easy. Hope this helps. I wish you and your husband well. Celeste
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