@evan2027
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- December 12, 2020 at 11:31 pm
sks2019,I am so sorry for your loss. It sounds like she lived a full life and accomplished all that she wanted to in life. My father also recently died and you are so correct that knowing your loved one is not in pain anymore is consoling. For what it’s worth we received a card from a family friend that had a quote that perfectly described grief from Jamie Anderson (no idea who that is). “Grief, I’ve learned is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat and in the hollow part of your chest. Grief is just love with no place to go.” Though I think over time you learn to spread that love in different ways.
-Evan
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- December 12, 2020 at 10:24 pm
My gosh, all of these posts are amazing and just what I need for support during this time. It’s been an emotional roller coaster the last few weeks. I try my best to focus on the positive memories of Dad, which there are many of. I am even writing down memories of events as they come to mind which is therapeutic in a way. I am able to be with my Mother and Brother at this time because I can work from home during the pandemic, one positive of the pandemic situation.Thank you all from the bottom of my heart, this forum helps lift my spirit 🙂
Love and hugs
-Evan -
- December 12, 2020 at 10:16 pm
Hi MelWave,This is similar to what occurred with my father, a liver met progression to stage IV. He was put on Nivo montherapy first which shrank the met slowly but then the melanoma started showing up as red spots on his left arm (origin was on his left thumb nail). He was immediately put on the combo therapy and had a very strong positive response, was able to have all four doses, but then developed colitis and had to stop immunotherapy while put on heavy steroids. Even though he had to stop after the four doses he was NED months after the last infusion. He was not put back on monotherapy nivo and 10 months after the last combo treatment eventually it came back to his lung. He was older, 74 years old, so I would hope your husband being younger would reduce the chance of bad side effects. The one thing i wish my father had done was push to go back on nivo after getting off of the steroids due to the colitis.
Best wishes and hugs from Virginia,
-Evan -
- November 7, 2020 at 10:40 pm
Hi BRR,My father had a recurrence of melanoma in his left lung in May-June. He had been on immunotherapy before but stopped due to side effects, was NED and they were just monitoring. He was put back on Opdivo at the end of June but the tumor has grown slowly. He didn’t have cough or pain. It is tough to tell if your father’s pain is a sign that the immunotherapy is working. Since it has been a while since your father has started the opdivo i would advocate for another scan soon to determine the status of the tumor. Hopefully another full body scan to make sure it hasnt gone anywhere else. If Opdivo is the only immunotherapy your father has tried there are others available if the tumor is not shrinking/stable (yervoy and opdivo combo or keytruda). Radiation may aslo be an option, there are concentrated high dose radiation treatments that accurately target the tumor and do much less damage to healthy cells.
Hope you and your father get some answers soon and wishing the best!
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- November 7, 2020 at 12:43 am
Hi Daisy, thankyou for your message 🙂His pain is getting better, still needs some pain medication but he doesn’t have 8-10 level pain when he moves the wrong way. The biggest problem with him now is that he is so out of it mentally, which we thought might be the pain meds/night time anxiety and sleep med. He can’t focus or make many decisions on his own, and we keep going over what his options are but hasn’t pushed to go any one way yet. His appetite is also pretty low, but he is still eating a medium breakfast and smaller meals. He uses the bathroom by himself still so that is a plus. I am driving back up to help my mom take care of him while we get a 2nd opinion hopefully middle of this week, and maybe his mental focus will start to get better as he takes less pain medication.
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- October 30, 2020 at 7:28 pm
Judy, that is a great idea. Today I ended up calling and spoke with a nurse to get the overall summary. I got a better explanation of the risks/reward for going on the combo again vs starting hospice. Unfortunately because of my father’s various health conditions, age, previous colitis episode, and the advancement of the disease the chance of successfully preventing progression was pretty low. Also they said that it had no chance of being a permanent solution. I still might try to convince dad to get a 2nd opinion, already got the paperwork, but I mentioned it to mom and she said he would not want to. Have to talk to them about it in person. I’m starting to accept that hospice is probably the best option at the moment. Been a rough few days since the news and it is so emotionally taxing, from crying, anxiety, fear, regrets of the past, uncertainty of the future. Gotta try to stay in the moment though. My heart goes out to anyone or any family member/friend of someone with this disease. Hugs for all. -
- October 29, 2020 at 8:46 pm
Melanie,
Thankyou for your diet recommendation. He is pretty stubborn about having meats. He does like fruits and salads so he would enjoy that part of the diet. I think he could get used to it. At the moment I am the third wheel in the decision triangle. My Mom was with him when they saw the doctor on Monday to get the recommendations, would have liked to be a fly on the wall. We are still in the decision making process but my dad is in a lot of pain still, they are adding another morphine pill for his regimen. Since he has some compressive fractures in his back he lies down most of the day so his mental health is suffering. He cant do much of what he likes to do.Thankyou for your positive message, and best wishes for you.
Evan -
- October 29, 2020 at 9:44 am
Thanks for sharing your experience with your father. I am glad he is still enjoying his life with you and your mother. So sorry that you are fighting melanoma, I hope the immunotherapy shows positive results soon.I think one of the main reasons my father got colitis was that he didn’t pay attention to his gut health. I don’t think he ate cultured yogurt or cottage cheese, definitely no probiotic supplements. He also enjoys meat, was on a somewhat modified Atkins diet before cancer. I am going to look into the Jevity 1.5. I dont think he will cut out all meat but would atleast work on his gut health.
Thankyou – hugs and hope
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- October 29, 2020 at 9:58 am
Mark,He goes to UVa and sees a melanoma specialist. I think the dr was saying that retrying the combo immunotherapy would most likely repeat what happened the first time where it was very successful for 9 months but then the cancer returned, so would not expect a second try to cure. I was hoping having radiation ahead of time and no colitis interruption might make it so he can stay on immunotherapy longer after the 4 combo doses.
I sent a request to Lipson so am hoping to hear something via phone or email soon.
Thank you for your advice
-Evan -
- October 29, 2020 at 1:22 am
Mark,He has a couple compression fractures due to the spine bone melanoma. His left kidney was also inflamed but the drs didnt determine what was wrong with it (he was a horseshoer at one point and was kicked in the back, twisted the kidney). Pain probably caused by the mets and/or radiation kicking in. I think it was the yervoy that instigated the colitis, he had been on opdivo only for atleast half a year before the combo.
I am going to look these dr’s up. I was looking at John Hopkins earlier. I wonder if i can go meet with the doctor or if my dad has to be present as well. He is pretty much bed ridden due to pain.
They did biopsy and was not BRAF positive.
Thankyou for your second opinion suggestions, I wish i had found this community earlier!
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- October 29, 2020 at 12:32 am
He is on Medicare in Virginia so I don’t believe they offer it, would be nice if that option was the norm rather than the exception. My father’s colitis occurred a month or two after the last treatment and he was tapering off the powerful steroids from October through December. I’m glad they were able to finish your infusions and the doctor was able to use less Yervoy at his discretion.Does anyone have any experience or knowledge about trying Opdivo/Yervoy for a second time? A schedule they gave my father and mother indicated the combo treatment wouldn’t start until early January which seems far away. Have read about radiation working with immunotherapy but should be done shortly after radiation <4 weeks.
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- October 28, 2020 at 7:41 pm
ThinkingPositive, thank you for sharing you’re experience with your father. My father is 75 but has had many health issues over the last 10 years. My mother seems to think the best option might be to not get treatment and maybe he will have more time to enjoy in comfort. I am still 50/50 but will respect his decision.I wish you strength and future health. My heart goes out to you.
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