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Feeling desperate

Forums General Melanoma Community Feeling desperate

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      Hi, My husband is stage IV Brain. liver, pancreas lung mets and after two months on Keytuda we had MRI to discover an additional 7 mets to the 14 or so he had already in his brain. Starting Binimetinib and encorafenib this week. I just feel like we are not getting on top of this fast enough and things are running away from us from his diagnosis of mets in November. Im trying to stay working but I feel like I may be undersestimating the facts here and dont want to have regrets about acting "normal". Ive decided to take some time off now anyway as I cant bear the thought of wasting any time I may have. I dont think Ill regret that at least. How did you and your families deal with the stress and uncertainty?

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          I am so sorry to hear about you and your husband. The first few months after a stage 4 diagnosis are just bewildering and horrible. My husband is also stage 4 (the one-year anniversary of his diagnosis is in a couple days, actually). I felt completely distraught, in despair, lost for the first 4 months or so. I cried constantly and felt like I was in a fog.

          Don't lose hope yet. My husband also failed his first infusion of the immunotherapy combo. He was placed on palliative care and required continuous home oxygen because he couldn't breathe. We really didn't think he had a lot of time left. But then he was placed on BRAF inhibitors and made an amazing turnaround in just a couple weeks. We had a great summer together! 

          When the BRAF inhibitors stopped working, we floundered again, but he is now on Keytruda and Yervoy. Even though the first immunotherapy combination didn't work for him at the beginning, it looks like it is working for him now. Maybe it's because the BRAF inhibitors reduced his tumour burden so significantly. Who knows? We haven't confirmed this with scans yet, but he is feeling better since he started on those drugs.

          All this to say — until the doctors tell you otherwise, there's still a chance your husband will make it through. I think it's a good idea to take some time off now while you're in so much pain. I ended up taking about a month and a half off work over the course of three months, after my husband's diagnosis (there were so many appointments and visits to the ER and he was unable to remember anything or get himself to them by himself!).

          Eventually, things will settle into some kind of routine and you will know what to expect. You'll get better at handling this horrible situation. In the meantime, take it easy on yourself and we are here for you. I hope your husband feels better soon!!


              Dear Dympsd,

              You raise difficult questions (and have read your earlier posts and how unlucky you have been) and I dont know too much what to say but I agree with cjm22.

              I think all of us here have felt unlucky that we got here, and that something must have gone wrong or the doctors did not act properly. But I think in most cases we have just been unlucky. That sometimes it is hard to find in advance, you just have to be vigilant and lucky in catching (see bubbles / celeste finding her new different cancer but from an MRI for melanoma – without the melanoma MRI she would never have detected this).

              In terms of treatment, my understanding is that you have been using radiation to remove the brain mets so that is good. If your husband is BRAF positive then the BRAF-MEK combo he is taking could work wonders and reduce the tumour burden markedly, as in cjm22's case, and then this makes it easier for the immunotherapy. So I think you have a decent plan and you are being treated at Stanford which should be good (although there are other good places in SF). So I think you are on top of this.

              In terms of coping, in my case it was realy hard at first, thinking i was going to die in a year or two's time (this may have been exaggerated but its how I felt). So I tried to deal with this. Going to church helped and reading celeste's blogs and her philosophy helped too. Not taking life for granted and seeing beauty in many things, being grateful for being alive. (Now that I think I might be getting better I fear i may be losing this but I hope never to forget this. I lost the use of my toes for a month or so, now the sensation is back and its amazing!). If things stabilize then it may become much easier to deal with. You will still be worried but will find it easier to cope.

              on the deep questions you raise, i guess you could read the experiences of other patients here. I am in relatively OK shape so I handle my illness alone, just telling my family the basics. my wife supports me in the background but i dont take her to doctor appointments except for second opinions. other people handle it in different ways. celeste's husband seems incredibly helpful and knowledgeable. so you have to work out the best approach given how your family operates, supporting your husband but trying not to let your worry show as this may stress him out or make him more anxious. i never took counselling but that could be an option, and i would have seriously considered it, particularly if church or other approaches had not helped.

              i dont think there are any easy answers but people on this bulletin board are here for you and rooting for you and your husband. and will try their best to answer your and his questions.

              best wishes and I hope your husband will be feeling better soon




                Thank you thank you! I needed that talk. I’m usually a very practical level headed and hopeful person but today was a bad day for me. I don’t vent to my husband and I try to always spin a positive on husbands Facebook update page because of course he is on the page and also our families who don’t live in this country. Everyone saying how amazing things are going but I see him deteriorate before my eyes and I’m impatient. I’m spending the most amazing time with him now though and I am so thankful for this. I’ll keep on helping him as I can, I’m ready to get back on track just neede a boot in the ass. 


                  You're allowed to have bad days! Being a caregiver is ROUGH. Rollercoaster ride from hell. I remember also feeling very confused and distraught at what I was seeing with my own eyes (husband disappearing before my eyes) and what doctors were saying (or rather, not saying — for a few weeks, no doctors had mentioned palliative care or prognosis, even as my husband was adimtted to the hospital 3 times in 2 weeks and unable to breathe or walk). It must be hard for you to stay positive all the time. I found relief in finding some people I could talk to (NOT my husband) where I could really express my true fears about his possible death, paralysis, impact on my career and our finances, etc. Obviously I couldn't talk to my husband about some of that stuff (although he has surprised me in what he's able and willing to talk about — it was a big relief when we finally talked about advance care planning and what a good death means to him). I really needed to talk to people where they could accept my honesty. I hope you can find some similar people.

                  It takes time to adapt to the new normal. Ann gives great advice below, too. Hope your husband's symptoms come under control soon.


                    Thank you. He had an amazing week followed by a nightmare week. The contrasting switch from looking and feeling normal to being in wheelchair and assisting him to bathroom was just a lot to take in. He is feeling a bit better again today, mobilizing a little with help. I don’t mind one bit taking care of him as he has always been our caretaker. I just want a little bit of good luck for him. Thank u for the kind words. We will be fine once over this bump in the road.


                      Hi – Keep the faith….the journey may take some time with ups and downs.  My husband has been battling almost 7 years and just recently had his first clean scan.  He, too, had brain mets and other tumors throughout his body that stubbornly hung around.  He's gone through multiple brain surgeries and gamma knife treatments, is currently on keytruda and dabrafenib.  He's endured multiple medical calamities/hospitilizations/recoveries and is still here.  I've taken time off when he's been in the hospital or needed more attention at home but have worked full time for the most part.  II will say that it's taken years to accept what is our "new normal".  I've always said that he just needs to hang on until researchers come up with the next new treatment!  I hope your husband responds well to the new mix.  Take care!


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