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July 7, 2013 at 3:10 am #21429
My husband has Stage 4 melanoma – brain mets (five we can see). Diagnosed Nov after three weeks of headaches and finally dizziness and vomiting. Had brain surgery to debulk the ‘problem’ tumour followed by 10 days of whole head radiation in Dec to try to slow their growth. Early January he had a massive headache – scans showed one tumour quite a bit bigger so another round of surgery to debulk that one too. He’s BRAF neg.
Early on we changed diet to macrobiotic, took supplements to support him with the radiotherapy and tried to get his immune system in order. In March we moved to a Ketogenic diet to starve the cancer cells of fuel. Also been seeing an integrative doctor and getting intravenous Vit C (some controversy about whether this is a good idea or not) and supplements to support adrenal glands, fix leaky gut, support immune system etc.
In March we met two different oncologists – neither very exciting. In April we met a lovely American oncologist who’s settled here (NZ). Had an MRI in April to find out how things are going and found that the tumours have all grown quite a lot. She feels that unless we start killing some cells, things won’t look too bright in another three months time. Until then, we’d not been keen on having chemo and had been trying to support his immune system so it can do it’s job.
Anyway, started Temozolomide in May – just finished the third round. He’s done we’ll on it – no side effects aside from tiredness and headaches which he had anyway, but slightly more so now. We’ll have another MRI in the next week or so to suss out how we’re doing. Still have PCV as a back up and we’ve been talking about the anti-angiogenesis drug, Avastin.
We’re doing ok. Recognise there’s no cure as such but keen to keep him as well as can be for as long as can be. The most important thing has become making the most of each moment, making good memories, laughing and spending time together. I read lots of exciting things about the new antibody therapies but nothing happening on that front here in NZ – waiting to find out if there’s anything in Aussie. We had some of his tumour sent to have a lysate vaccine made but since found out it’s not likely to work on brain mets. Feel like my hands are tied – I so want to do all I can to keep him well but there’s just nothing doing. Everyone comments on how well he looks – maybe the supplements are making a difference? We’re trying things like Enzogenol, Aloe Arborescens and Salvestrol. Getting him out for walks when I can to keep his cells oxygenated and his blood moving but otherwise feel useless – surely there’s more I can do?
This stuff I can just about cope with. If I stick with my attitude of gratitude for all I have, I’m ok. Feel so very lucky to have this time and that keeps me sane. I am conscious that there are others suffering much more than us right now and that things won’t always be this good. I struggle sometimes with family – the relationships, expectations, values etc. It’s hard for them too but we have different perspectives. I’m here 24/7. Every waking moment is wrapped up in gauging his wellbeing, his tiredness, the severity of his headaches, his mood, making tempting food, assessing whether he’s eaten enough, dishing out pills and potions, researching and reading up on stuff, emailing for info etc. It’s a full time job. I know by looking at him how much energy he has left in his tanks, I know when he’s needing to sleep. No complaints – I wouldn’t want to be anywhere else but this is sometimes a really hard, really lonely road to walk. We’ve been together for 18 years but only got married last July. I love this man with all my heart and so dearly want to grow old with him. I don’t know what else to do to keep him well. Am I missing anything?July 7, 2013 at 3:17 am #61702carvin1Participant
I believe him to be a very lucky man to have you by his side.July 7, 2013 at 3:17 am #61703 I should have taken time earlier to read more of the posts in this section. I’m so sorry for the loss that so many of you have faced recently. So very sorry.July 7, 2013 at 3:14 pm #61704Catherine PooleKeymaster I can’t think of anything you aren’t already doing, he is quite lucky to have you. But I worry about you. Are you having a life at all aside from this? Can you get a team together to help you, a visiting nurse, family, friends? You can’t do this alone and soon your energy will be gone and you will not have anything to give. So please take a breather and go get a massage or something that is just for you. Palliative measures are really what are needed for him at this juncture because brain mets are really only treatable by radiation and surgery.
Please visit us often and let us know how
you are doing.July 8, 2013 at 2:40 am #61705 Thank you for your kind words, carvin1 and Catherine.
I’m doing ok. Probably a bit in denial and still thinking I can make a difference and that he might be around for a while yet. I know its not a rosy situation but figure I can either sit and think about how the future might pan out, how bad things might get and how life will be without him, or I can wallow in the fact that he’s here and we’re still doing it. I’m staying present because it’s what I have right now…the future is uncertain. Got the rest if my life to cry and be upset – seems a waste of time to do that now – be upset for something that hasn’t happened yet. We have some good friends and neighbours – friends I can call anytime and one who drops over meals from time to time to add variety to his diet and give me a break from cooking for a night or two. Another friend is happy to pick things up in town if need be. My work colleagues stay in touch even though I haven’t worked this year so far so very lucky in that respect. I don’t have much time away from him – do some shopping and pay bills etc while he’s getting Vit C infusion and sometimes pop into town when his folks visit. I figure as things progress I’ll need more help. He’s a bit forgetful these days and slower to process info but otherwise, apart from the headaches and tiredness (which dictate what we do with our days) he’s pretty good.July 9, 2013 at 7:25 pm #61706Catherine PooleKeymaster
Vitamin C infusions have not been scientifically proven to help with melanoma. Are the side effects pretty strong? I would go with more palliative measures that provide relief and do take good care of you!
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