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  • #21473
    Catherine Poole
    Keymaster

    How is everyone doing? We are here to support you!

    #61947
    Fguzman
    Participant

    Hi Catherine,

    Thank you so much for your message.

    We, were at the hospital since my husband has now brain mets, and had seizures. I wanted to tell someone how terrible, how horrible that was. He is now disqualified for the clinical trial MK-3475.

    now, in the process of Gamma knife, has no energy, has pain that 25 mcg of fentanyl, and vicodin controls it to level 4. Latest scans shows new lesions in the liver, lung, kidney, and some lymph nodes. Neuro Dr. suggested hospice, Oncologyst for melanoma suggested gamma knife, tomador, and Bio- chemo. He looks so fatigued, walks a short distance and gets short of bread and needs to lay down. I understand about quality of life, but what if… I respect what my husband will decide.

    His appetite is poor even though he is on megace. I wish he could receive nutrition through the vein, it seems to me that since melanoma is progressing TPN might be for people with a more optimistic prognosis.

    I am sad. Why melanoma had to be so devastating?

    thank you!!

    franny :

    #61948
    Anonymous
    Guest

    I’m so sorry Franny. This IS a hard, cruel disease. And having to watch your husband’s suffering is doubly hard. Many sleepless nights.

    We try, try real hard. Saying it’s frustrating is a massive understatement.

    Respecting your husband’s wishes is truly giving and brave. He’s blessed to have you and your children.

    Rest if you can.

    Jeff

    #61949
    abdorma
    Participant

    Hello All,

    Thanks for checking in on all of us Catherine. Franny, I am so sorry to read about your husband’s progression with this god-awful disease. I think I know how you feel.

    We are on Hospice as my husband decided in mid-June to not choose chemo which was his only viable treatment possibility as he has failed Zelboraf, IPI and also landed brain mets in mid May that disqualified him from PD1 trials.

    We thought we were enjoying the best quality of life he could have but frankly, the last 30 days have been no picnic. Despite being on heavy doses of both short and long release of oxycodone/oxycontin, he has not been able to get his pain level below 5 (on the 1-10) scale. Three weeks ago, his back pain was at a 7 or 8 and two weeks ago we opted out of Hospice for three days and he had an MRI of his spine (we knew he had at least one good sized tumor on his L1 vertebra) and decided to go forward with one heavy duty dose of palliative radiation.

    So things have gotten better in the last week. The radiation has greatly helped his back pain but he still struggles with post herpetic neuralgia or post shingles nerve pain. He is on prednisone as part of the Shingles pain treatment and that has greatly increased his appetite. His hospice nurse took him off a medication he was on for nausea which he is no longer experiencing, and his dry mouth condition and overall itching greatly improved.

    At various points he has had diarrhea, constipation and urine retention which are all likely the result of the pain meds and attempts to not have constipation which may have resulted in the diarrhea. For several days just prior to and after the radiation treatment, he was incontinent of stool as they say. The first morning that happened would definitely be earmarked as one of the lowest moments of this melanoma journey. My husband has extremely limited vision and does not see well enough to be able to clean himself up. So he felt horribly and I felt horribly for him. I have determined that people who do not have strong marriages going into this adventure might not do well but fortunately we learned long ago that living with a disability requires humor, flexibility and the ability to tolerate things not going the way you’d hoped.

    Like Franny, we are lucky enough to have lots of family and friends to support us. In fact we have had so many supporters that our hospice nurse “grounded” us for several days with no visitors to get Tom’s pain management under control.

    Last week Tom’s doctor told him he was in a “window” where his pain would be manageable and his ability to be mobile still in place. So tomorrow, we are driving to northern Minnesota to our lake cabin and are staying until we get bored or something happens that means we need to come home. We can have the local hospice there visit us if something bad happens. I doubt we will be hiking in the woods but am hopeful that Tom will be on the pontoon boat and maybe even swimming in the lake. We are taking what we can get right now and it is not necessarily a bad way to live!

    xxoo to all of you guys out there

    #61950
    Fguzman
    Participant

    I am not sure how to reply.

    Anyways, thanks Jeff for your suggestion.

    and for Tom and wife going to the lake sounds amazing! Enjoy!.

    tomorrow nick will go for Gamma knife. We saw Dr. Michael Wong from USC today, and he is recommending IPI. Good night and Thank you all!.

    franny

    #61951
    Catherine Poole
    Keymaster

    I am saddened by your stories but happy we can provide a place for you to express your feelings. All of this truly sucks and life is truly unfair to the nicest of people. Ann, I am hoping you have a really nice trip to your cabin. There may be a clinical trial out there for your husband if his condition makes him able to mobilize. Email me if you want to explore. For hope I am finding a few new therapies that go beyond IPI, PD1, and the braf drugs. But you’d have to travel most likely. In the meantime, hang in there, your loved ones are so fortunate to have you by their sides.

    #61952
    Gilly
    Participant

    Hi Catherine – thanks for checking up on us all ! I am still reeling from Pati’s death as she was a rock for us Europeans. My hubby’s 7 month scan is tomorrow on Zelboraf – the last scan showed no reduction but no growth (having had a few months of reduction)- I am concerned that this time we will see growth as we are at 7 month average point – in your experience will a small amount of regrowth result in stopping Zel ? I know its pre-empting results but its best to be prepared – of course scanxiety means that i worry about his persistant cough and slight anaemia ! Thanks for your watchfulness !

    #61953
    Catherine Poole
    Keymaster

    I like to remain optimistic about your husband and hope he continues the response, I think Dick is 3 threes strong on Zelboraf. So let us know how the scans go. Yes, my heart goes out to Pati’s small boys and family as they must feel a terrible loss as we do.

    #61954
    tasjacques
    Participant

    Hi Catherine,

    Yes, thank you for checking on all of us. It is a special job we care givers has to endure … To see our love ones suffer and not be able to do anything, to see them change day by day … Takes a great tall that is not easy understood by outsiders.

    Last time I posted, I was so scare to loose my husband, the tumors appear to grow exponentially, edema started, swelling in arms, weak, fatigue, I couldn’t do nothing except keep trying to feed him, hydrate him, and be attentative to all his needs … This past week we have noticed the tumor in his arm is shrinking, I’m so happy to see this. MK 3475 is working for him, the best very little side effects.

    Couple days ago, he told me ‘I finally feel not dying’ to hear him said that was a jolt in my heart. I do pray for us to get better and live a very long long time together. I do want to age with him!

    Lets keep fighting with our love ones, and thank you to all for listening (reading).

    E

    #61955
    Fguzman
    Participant

    Hi to all!

    My husband had the gamma knife, MRI showed two more lesions in the brain that need whole brain radiation. We missed our appt because he could barely walk to the bathroom. Talked to two md insurance did not approve ipi outside network. Local dr willing to admit him to the hospital for Ipi.

    But last night he had a minor seizure and lost strength on right leg, he now can’t walk even to the bathroom. His skin is jaundice( liver mets) and today the sclera of his eyes is jaundice. I do not know what to do. Please advise me!

    Franny

    #61956
    dkmc
    Participant

    Oh Franny It is hard to read your post as you both have such a big decision to make. Ipi takes time to work- can he get somewhere in network to get it? Could you do what onc suggests to buy time? or is hospice the best option…talk, make a decision & I pray you both will be at peace with whatever you both decide. Much love to you both. Karen

    #61957
    Fguzman
    Participant

    Took an ambulance to the hospital. Dr suggests to think about a feeding tube! And for the brain mets steroids, not sure he can take steroids if there is a chance of IPI. Oncologist will see if he is stable, and ask for auth. My husband is non slow with his thinking, and this morning he told me ” I am confused” he does not answer my questions that often. hospice might be next option. I am getting more and more tire at night since he gets anxious, restless. And he sleeps more on the daytime.

    Good day to all!

    Franny

    #61958
    Anonymous
    Guest

    I’m praying for you both Franny and I hope the IPI is authorized.

    Jeff

    #61959
    Catherine Poole
    Keymaster

    Franny can you get more help at home? So you can sleep? That is vital. I would looking into a friend, family member or visiting nurse to help you. Let us know how things are going.

    #61960
    tasjacques
    Participant

    Hi Franny

    So sorry to read what you are going thru. Catherine has a good suggestion, though its hard to leave his side it’s important you have some rest. I do hope you have someone to lean on and ask for help.

    May God bring some peace to you and your husband. We have you in our prayers!

    Elenise

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