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October 31, 2013 at 12:40 am #21648DonnaKParticipant
I read this site daily, but have never posted before. My 38yr old husband was diagnosed with Stage IV in Apr of this year, and quickly became ineligible for any clinical trials with the appearance of innumerable brain mets in May. After a series of failed treatments, John is now on dabrafenib+tremetinib, but we already know the dabrafenib isn’t working any longer on it’s own. He has lost the ability to walk, and is in moderate pain, but is largely coherent and happy. I want him to fight as long as he can, in the hopes of making it till PD-1 approval, but also understand this is unrealistic. I’m wondering at what point it becomes clear that enough is enough. How long can someone survive with growing brain mets (>20)? When the tremetinib stops working, are we talking about weeks, months, or is it entirely unknown?
Related to that, can anyone offer advice on what to share with kids? We have two toddlers–4yrs and 20mos; the youngest is obviously clueless but the 4yr old understands that daddy is sick. Is there a point where I should tell her that daddy isn’t going to make it?
Thanks.October 31, 2013 at 12:50 pm #62883Catherine PooleKeymaster
My heart goes out to you as you struggle through this difficult time. So is radiation for the brain mets out of the question? Your doctor should be having a long conversation with you at this time about what is best and whether hospice is a good idea. No one can really predict how this might go but the doctor should be communicating better about options and strategies.
For your children, please take a look at our blog:
It will give you some ideas about this aspect. Do you have a support network of friends or family? This is the time for them to be stepping up to cushion you. You sound very strong and able to deal with this, but outside help is usually a blessing. Please come here and let us know how things are going for you. We are here to support you.October 31, 2013 at 6:24 pm #62884abdormaParticipant
I was so sorry to read this post but for what it is worth, there were about 1 million times in my husband’s fight with melanoma that I wanted to post the same question. He died at the end of September.
Catherine gives excellent advice. You didn’t name his previous treatments but I am quite certain if you were trying to get into a PD-1 trial, you have exhausted all other approved treatments (Zelboraf, IPI, the MEK combination whose names I can’t remember). When my husband was left with only chemo (Taxol and carboplatin) as an option, he chose not to proceed as the side effects were severe and would likely interfere in his quality of life. In the discussion of what to do next, the oncologist and melanoma nurse answered all our questions including “how will I die if I don’t continue treatment?” and “how long will I have before I die.” I think an honest discussion with your husband’s doctors would help you make this decision.
So my husband lived about four months after his last treatment which was to have three brain mets gamma knifed. His tumor load however was significant throughout his torso in muscle, soft tissue, lungs, adrenal gland and he had innumerable (and painful) bone mets on his spine. I think brain mets might be an entirely different story however, and again I would ask those questions about what happens when the disease progresses. The answer will help you two make decisions.
Once you have decided the answer to quality versus quantity of life, your decision will be simpler to make.
We didn’t have small children but I would definitely ask for help with those questions. Again, when my husband was receiving palliative radiation, we met with a social worker whose job it is to help with the other aspects of this disease like what do you tell small children (ours was what to tell his elderly parents with dementia).
And finally, in addition to having a good support system, I urge you (actually I urge all of our friends these days) to discuss NOW funeral arrangements, including what mortuary you will use, what cemetery (if any) do you wish to have your remains buried in, who do you want for pallbearers, etc because when faced with actually making those decisions, it is very comforting to know that you are doing what you have both agreed to do. Also, if you don’t have a will, GET one or at least know your husband’s view on who he would want to become legal guardians of your children in the event you both should die. And if you don’t have the time or money to get the will now, be sure that all of your beneficiary information is up to date in investment or savings accounts. If he still has his mother listed as his beneficiary for example on some long-held account from before you two were married, she will get the proceeds when he dies. When we did this little exercise last spring, I found to my surprise I had NO ONE listed on a savings account I held from long before we were married and had I died, it would have been one of those accounts you see listed in the newspaper. We had started those conversations many years ago when friends and my husband’s brother died at young ages but had never acted on any of them until we realized that Tom was not going to be with us much longer.
I wish you only the best in the next few months regardless of what you two decide regarding treatment options. It is such a journey. I will keep you and your “people” in my prayers.
annOctober 31, 2013 at 7:44 pm #62885Webbie73Participant
My heart goes out to you. Both Catherine and Ann gave you some great advice. All I can offer is a cyber hug.
KathyOctober 31, 2013 at 11:11 pm #62886Maureen038Participant
I am so terribly sorry for what you are going through with your husband. Please try to take care of yourself as best as you can. Give your children many hugs. There are some excellent books you could read to them such as What’s Heaven by Maria Shriver and The Next Place by Warren Hanson. Just take a deep breath and do the best you can. I will keep you and your family in my daily prayers.
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