Grave’s disease meds (Carbimozole) and Pembro?

Hi Helen of Suffolk and sorry you haven't had a response.  It could be no one else has been through similar.  By responding to you it will bump your post back to the top where someone who can help might be on here and see it this time.

Any questions about your husbands meds are best put to his doctors as everyone is different and so they will know best.

Hope your husband's treatment is successful.

Thanks you Support Line. Yes we have put these questions to his medical team AND to Merck it’s self, the manufacturer of his immunotherapy drug. Sadly we are still struggling. A message from the oncologist was that he is unconcerned about his weight loss and to keep doing what he is doing and he will talk to him before his next treatment in a couple of weeks. UNBELIEVABLE! They don’t seem to understand the severity of the situation at all. He is literally having to force himself to intake ANY solid and liquid and he is skeletal! He is marginally better to the point that he MAY be able to escape hospitalization for dehydration, however the chances that he can continue his treatment are not good at all.

So we finally have an answer. The weight loss and nausea, that the oncologist wasn’t concerned about, are from stomach cancer. 
Now waiting for the Endoscopy and results to see if the cancer is the melanoma spread or if it is a separate one that started at the same time. I feel certain that none of this would be happening to my wonderful 70 year old cyclist had he never been put on the immunosuppressants for Thyroid Eye Dx.

I am so sorry to hear that Helen of Suffolk.  It's good you persevered and it was eventually spotted.  Hope he starts his treatment for it soon and it's successful. Must be a very worrying time for you both.

Further update. After a week of sobbing and making death plans the oncologist called to say that he was wrong and that the biopsies did not show cancer but some horrible inflammatory process that they believe is a side effect caused by the immunotherapy. We were of course elated with the news. Unfortunately no one knows what exactly is going on nor how to stop it. They put him on high dose steroids and so far…after four days…it has only gotten worse. He was readmitted to hospital this afternoon.

Oh my goodness Helen of Suffolk,  What a time you two are having. I'm so sorry to hear your oncologist got wires crossed and I'm pleased it's not a recurrence of the melanoma, but I'm sad to hear he's not yet responded to the steroids.   I'm on Pembro myself. These immunotherapy drugs are so new they just can't know all the side affects and each person has a different reaction. Hospital is the best place to sort this out and I presume they've stopped the Pembro temporarily. Poor you, you must be exhausted from fighting his corner and trying to get docs to listen.  Hopefully the oncologist will read up/search online/ talk to other docs in the melanoma field  for some quick advice. Big hugs to you, wishing him a speedy recovery too xx

Thank you so much for your kind words and understanding. Yes the treatment has been stopped. One of the questions that I have been asking over and over is, has his doctor reached out to Merck for any available information. I still don’t know. I have called Merck multiple times. They are very happy to have all our data but won’t tell us any of theirs. 

Hi Helen of Suffolk I’m sorry to hear of your husband’s current situation and the distress you are both under. Steroids is the go to method for addressing any over reaction to your own body that immunotherapy and any drug combination has triggered. I’m speaking from attending melanoma patient conferences where consultants have discussed side effects rather than my own experience. I started Pembro in 2016 and with 57 doses had no significant side effects. (I stopped Pembro in September 2020) I’m sorry after 4 days on steroids it seems to have got worse it seems like one of those times when only time will give an answer which isn’t very comforting I know. 4 days can seem an eternity when you are going through a bad phase but not long for a change in reaction I’m thinking. Hospital seems the best place for him, so he can be closely monitored,  is it a centre of excellence for melanoma I’m wondering or linked to one so that you can have some understanding wether he’s in the best possible hands, even if things haven’t yet reached a good turning point. It is so important to know that everyone is trying their best isn’t it. 

It must be stressful for you and important to off load somewhere, and I’m glad you feel you can do that here or in the carers group. In the years. At my hospital my specialist nurse is a Macmillan nurse and she is really good at listening, and checking up on actions taken, a real advocate between all the different teams that might be involved in our care, they have a remit to help emotionally as well and to help the patient and carer. I’m thinking of you and hoping things get easier soon.