@canadian-melanoma-wife
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- October 2, 2022 at 9:47 am
Congratulations Bill!! My husband hits his 5 year NED from stage 4 and thought I would check in to the forum and leave a post as encouragement to others and I am delighted to see your thread at the top. I hope the shadow of melanoma grows ever weaker for you. -
- August 23, 2021 at 5:49 pm
<p style=”text-align: left;”>Ironic that this is the exact question I came to ask as well. My husband had 4 ipi/Nivo combo treatments and then 4 just Nivo alongside WBR for brain mets in March 2018, had to stop because of multi system overload but he got to NED by Jan 2019. Aug 2021 he has a spot that is reactive in his neck but because of a prior neck dissection at the site of primary they couldn’t get a big enough needle around the remaining arteries for a good biopsy sample. We are now scanning and watching and waiting but have been told that he will go for round 2 if there is any development. Bracing for impact, it’s hard to go back at it after you know what it was like the first time.</p> -
- May 10, 2021 at 11:09 pm
Hey Will,Happy to hear your surgery was successful and sorry to hear you were in pain afterwards.
I agree with JudiAU, head and neck are more prone to spread to the brain which is the really scary stuff. My husband had a wide excision like you have just had then 2 years later had to have a full neck dissection (removal of all the lymph nodes in an area) and then another 2 years later had the Mets spread to his brain and other areas. The good news is they have some pretty amazing immunotherapies now and that they have had success using them as adjuvant therapy even when they think you are all clear after surgery. I hope you consider taking these if they are offered to you.
One mistake I feel my husband and I made over the years is not being vigilant enough and advocating more strongly.
I wish you a speedy recovery.
~Crystal
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- February 2, 2021 at 2:12 pm
Hey Rosiepup I know sometimes when it comes back you want to hit it with everything you got but that radiation is just bad stuff on the brain. My husband is NED for the last 2 two years but was fighting stage IV this last occurrence with Brain Mets. He wasn’t eligible for SRS and ended up having to have a couple whole brain radiation treatments. He had the ipi nivo combination afterwards and the immunotherapy did more for the brain met than the radiation did in the end. These immunotherapy drugs are amazing and I wish you so much luck with them. They work miracles. -
- January 16, 2021 at 5:45 pm
No new medications. In fact Chris takes no medication at all, essentially refuses any long term prescription now that the cancer has subsided. He is in rough shape and I almost wish he would consider a few meds but I guess I respect his courage to endure. The oncologist is sending him to see a general surgeon next week as well and a scope from both ends as he has some worsening swallowing issues from his neck dissection when he hit stage 3 back in 2015.Thanks for the Link Ed. You are always so helpful. I will be sure to check it out.
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- December 15, 2020 at 4:50 pm
Congratulations on your NED status! My husband reached his 2 year this November as well. I don’t have an answer to your question directly I can tell you that my husband had stage 2 in 2013 treated with surgery. Stage 3 in 2015 treated with more surgery and radiation and stage 4 in 2018 treated with radiation and combination immunotherapy. I think there are a lot of variables like stage and treatment and age and overall health. I do hope you go and live your life though. It’s hard to go about things when the boogeyman is always hiding around the corner. I wish you happy holidays and I hope you find some comfort in other people’s stories on this forum. There are a lot of long term survivors and there have been so many wonderful medical advances in the last 5 years. -
- December 14, 2020 at 6:11 pm
We live in Canada as well, but the other side in BC. We were able to get the ipi novo combo through Bristol Myers Squibb. My husband was stage 4 with Mets everywhere including his brain in Jan 2018 and today he is progression free, though not without complications. Any good oncologist should be willing to push for this treatment for you. Access to hope was the name of the program we were put on. I hope this helps and I wish you so much luck. -
- December 12, 2019 at 5:08 am
Lots of the side effects from immunotherapy are because the immune system is amped up and attacking more than just the cancer. My husband stopped treatment in July 2018 after only 8 infusions of the ipi/nivo combination and still struggles with fatigue, joint pain, headaches, rashes, intestinal issues ect. Its not a whole lot of fun but I think he prefers it to the alternative. I wish you and you husband luck and good health on your journey. -
- December 4, 2019 at 4:11 am
My husband received the ipi/nivo combo and after 8 doses we had to stop. We had the same trouble, though maybe a more sympathetic ER. He would vomit/diarrhea/not eat. Lost 60 lbs in 8 weeks. We would stay in the ER for a week so they could get him rehydrated and then we would go home and it would start again. Steroids. More steroids were the only thing that helped. I would like to impart that Jan 2018 was his stage 4 diagnosis and he is currently NED. Our oncologist theorizes that these types of events mean that the body is responsive to the treatment. I know I haven’t provided much in the way of suggestions but I hope I have imparted a little hope. -
- February 25, 2019 at 3:10 am
Hi Vince. My husband had whole brain radiation in February of last year(2018) then received 8 doses of The Ipi/novo combo, the last one being in July of 2018. At his 1 year stage 4 diagnosis he was declared NED and now attempting his return to work. He is 34 years old and works construction as a gradesman. He is really struggling. The fatigue is incredibly debilitating and he has a lot of joint pain. His lungs seem to have had some kind of an immune flair up as well as his skin and eyes. To be honest I’m not sure he can continue to do this type of job anymore. I think there is always hope to return to work but it may depend on what it is you do for a living and I would also suggest taking it slow and not rushing back.I wish you luck on your journey.
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- August 25, 2021 at 2:54 pm
Thanks for your well wishes John and I am really hoping that there is enough of that magic sauce still in his veins to handle whatever it is that seems to be happening.I’m very sorry to hear you lost your son, especially at such a hard time in your life. I can’t nor do I ever want to imagine how painful that much have been. Death often puts things in to a different perspective. In 2018 Chris has hit stage 4 and just as things seemed to get better in Jan of 2019 I lost my little brother in a pretty tragic way as well. And then 2020 needs no introduction. Sometimes the punches come in so fast it gets pretty hard to roll with them.
I live in BC Canada and in 2018 our government didn’t even fund combination therapy yet. We were lucky enough to get on to a trial of sorts funded by Bristol Meyers Squibb, so as you can imagine we don’t have a large pool of people to ask questions to. Doctors can tell you so much but it’s not like having the people here on this forum to get the human stories from and man oh man are there some really heart breaking stories on here. But it’s also wonderful to hear about people like you who are carrying a torch of hope.
Death is certainly a much worse sentence than side effects. It’s hard to convince a young man who has already lost so much physically that the above sentence is true sometimes though. He says to me he is cursed to be a 34 year old man living in a 90 year olds damaged body… and I always tell him when he makes it to 90 years old he will probably still be thinking that same notion.
Fingers cross for your continued ride on the NED train. You carry our well wishes with you.
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- December 17, 2020 at 9:34 pm
Sorry, to clarify Chris has scans every 3 months and alternates between a PET scan and a CT with additional MRI. His last routine scan was just 3 weeks ago. He did not receive a scan while in the ER as he just had one done. When the pain comes on it is very sudden he gets nauseated and throws up, and gets sweaty and it is not on one side or the other it’s an all over his abdomen pain. It lasts for a few hours then passes. So far there is no correlation between what he has or has not eaten or his bowel movements. No diarrhea or constipation. When the episodes happen he has tried a few antacids and gas medication and neither do anything to help. The intussusception was caused by a large tumor last time and there was no tumor 3 weeks ago so I am doubtful one had appeared and grown so large to cause a second occurence in such a short time. It could be damage left behind from it but why the pain now and not in the many month since. The hospital that he went to is in the epicenter for Covid cases in our province and the Dr he saw came directly from an ICU and because Chris had been there all day and the pain had subsided they just shrugged, told him to go home and went back to trying to deal with the people in more immediate danger. When Chris was really ill I was always keeping myself informed but he has managed to keep out of hospital for so many months that we have just been trying to push the melanoma boogeyman back under the bed. I just am not sure if anyone who had had the combination therapy or even Ipilumamab or Nivolumab individually have ever experienced a delay in intestinal issues. Google hasn’t given me any leads. Seems far fetched but I thought I might try to see if anyone had any information. We don’t see the oncologist again until the first week of January. -
- November 18, 2020 at 4:12 pm
Just an update for anyone looking. It turns out the mass in his heart is a calcified tumor. So basically a lump of dead tumor that his body has created a protective shell around. Cardiologist won’t remove it because he says it seems stable and not likely large enough to kill him if it came loose and would go to his lungs not his brain *eye roll*. -
- December 16, 2019 at 2:35 am
Sounds like you are having a rough go of it Steve. I hope your side effects settle down for you. Curious about your Vitiligo, ironically the least of your worries, and quite possibly a sign of good measure. They say those who get it tend to have a high rate of pfs. My husband has it as well. Started with his hair and eyelashes and then he has a small patch on his neck/cheek. It seemed to spread rapidly at first but hasn’t progressed at all in 6-8 months. Have you found yours has progressed steadily or was quick to spread and then petered out like my husbands has? -
- December 12, 2019 at 5:17 am
We are in BC and his primary treatment takes place at the Abbotsford Cancer center. The lower mainland has a network of cancer centers that have different specialists and resources. Sometimes we have to travel to Surrey and Vancouver or Surrey for tests or appointments. We do have a shortage of doctors here though. We are fortunate to have a really great Oncologist. I can’t imagine being in a place without free healthcare. The added stress of medical costs must be terrible. I wish you so much luck and good health on your journey. Chin up, it is beatable.
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