Effing cancer is an effing effer, frankly
Discussion
Starfighter said:
Very early 2020 he had a cough and a negative Covid test. After a couple of weeks he had a chest x-ray and found a fist size tumour in a lung. Further scans found liver, bone and lymph nodes to be cancerous as well. If finally went to his brain. None of the drugs worked.
Poor guy . I’ve been getting my wife to read this thread so she comes round to the idea of retiring even though we’d need to adjust our lives a bit.
She seems to think we’ll go on forever !
May I ask how old he was ?
Odd question but kinda helps my wife put things into perspective
oldaudi said:
At this stage I believe we are at the start of the treatment, reacted well to the first tablets and we have a long journey to go with chemotherapy and bone marrow donation. Please can someone post positive news about leukaemia.
Edited by oldaudi on Sunday 1st August 20:32
Specifically I was diagnosed with Mantle Cell Lymphoma (MCL). It's rare and only around 100 cases a year diagnosed in the UK. It presents in different ways. Most people have enlarged lymph nodes and enlarged spleen; I didn't. The major symptom was breathlessness. I went to the doctor thinking I had a cardiac issue. A blood test quickly revealed my WBC was through the roof and my Haemoglobin was on the floor (plus platelets).
Essentially my bone marrow was producing vast quantities of mutant white cells to the detriment of other blood cells, hence the low haemo and platelet count.
Treatment was 5 months of chemo followed by an autologous stem cell transplant. My guess is once your wife's white count is under control she will follow a similar course but don't quote me on that.
Reaction to chemo and SCT vary hugely amongst patients. I had a reasonably easy time of it (in other words I wasn't nauseous and unable to get out of bed - lots of other side effects though).
Long and short is 12 months after diagnosis I was in full remission but I'm not cured. I will relapse at some point but hopefully that will be in years or possibly decades. Either way I have a pretty good idea what is going to extinguish my mortal coil although new treatments are coming on leaps and bounds; something which applies to nearly all areas of leukaemia/lymphoma and cancers in general.
I'd recommend looking to see if there is a FB support group for example. There are a couple for MCL - one UK-based and the other US. Both provide good personal experience information and keeps you current with new treatments coming down the line. No surprises that the US does tend to lead the way but that gives us all hope.
GT3Manthey said:
Poor guy .
I’ve been getting my wife to read this thread so she comes round to the idea of retiring even though we’d need to adjust our lives a bit.
She seems to think we’ll go on forever !
May I ask how old he was ?
Odd question but kinda helps my wife put things into perspective
51 (just). The funeral is on Thursday and a mate is coming over from America for it using the new travel rules. I’ve been getting my wife to read this thread so she comes round to the idea of retiring even though we’d need to adjust our lives a bit.
She seems to think we’ll go on forever !
May I ask how old he was ?
Odd question but kinda helps my wife put things into perspective
Starfighter said:
51 (just). The funeral is on Thursday and a mate is coming over from America for it using the new travel rules.
Crikey 2 years younger than me now ! Poor guy . Had a chat with wealth manager tonight and on track to bugger off at 55.
Makes me now wonder why I’m spending two more years doing something i detest but then I guess most of us do it .
Hope the funeral goes as good as possible .
Cancer deffo needs to fuk right off
k you cancer! Does anyone have success stories for me regarding stem cell/bone marrow transplants. I mentioned a few weeks ago that the wife has AML, turns out she has 3 chromosome issues and they want to go for a transplant as soon as this chemotherapy is finished and her body is ready.
First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
Consultant also advised that they vaccine our under 16 year old children against covid.... so when the Mrs comes home we do not undo all the medicine and progress with bloody covid!
First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
Consultant also advised that they vaccine our under 16 year old children against covid.... so when the Mrs comes home we do not undo all the medicine and progress with bloody covid!
Edited by oldaudi on Thursday 12th August 17:18
oldaudi said:
Does anyone have success stories for me regarding stem cell/bone marrow transplants. I mentioned a few weeks ago that the wife has AML, turns out she has 3 chromosome issues and they want to go for a transplant as soon as this chemotherapy is finished and her body is ready.
First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
Consultant also advised that they vaccine our under 16 year old children against covid.... so when the Mrs comes home we do not undo all the medicine and progress with bloody covid!
I have a friend in his sixties who had a full transplant about seven years ago . As I recall it was a slowish recovery but he has been fine since.First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
Consultant also advised that they vaccine our under 16 year old children against covid.... so when the Mrs comes home we do not undo all the medicine and progress with bloody covid!
Edited by oldaudi on Thursday 12th August 17:18
My wife had a transplant in January. Last few months she has come on pretty well. Started working part time recently. She still visits the hospital twice a month and takes medication daily, but she doesnt get nearly as tired as she did.
She is a bit miffed that her hair is growing back really curly
She is a bit miffed that her hair is growing back really curly
oldaudi said:
Does anyone have success stories for me regarding stem cell/bone marrow transplants. I mentioned a few weeks ago that the wife has AML, turns out she has 3 chromosome issues and they want to go for a transplant as soon as this chemotherapy is finished and her body is ready.
First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
A close friend of mine had treatment and a bone marrow transplant when he was mid-40s. He is white, was fit and strong. The donor was a Dane I think - so there's obviously a European register - and the treatment was a complete success. He recovered reasonably quickly and now has a completely normal and healthy life. First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
The only odd thing was that he came down with shingles afterwards. Apparently the donor had never had or been vaccinated for German Measles or whatever the similar childhood illness is. He maintains to this day that shingles was worse than cancer!
Good luck to you both, and fingers crossed. I rather imagine that the prognosis will be very positive based on medical advances and my pal's experience.
Elroy Blue said:
Hi. She has Multiple myeloma. It’s cancer of the bone marrow and extremely rare in people under 50.
Am I right in thinking that DKMS campaign for donors and funds for that sort of transplant? A friend asked me to sign up to their register after losing someone close to him so I have, if I’ve understood correctly they maintain a global database of stem cell donors.oldaudi said:
Does anyone have success stories for me regarding stem cell/bone marrow transplants. I mentioned a few weeks ago that the wife has AML, turns out she has 3 chromosome issues and they want to go for a transplant as soon as this chemotherapy is finished and her body is ready.
First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
Consultant also advised that they vaccine our under 16 year old children against covid.... so when the Mrs comes home we do not undo all the medicine and progress with bloody covid!
I had an autologous SCT (using my own stem cells). Sounds like your wife can only have an allogenic SCT (donor stem cells). When I relapse then at that moment that will be the next treatment for me - hopefully not for many years. The risks increase for allogenic because they are 'foreign' cells and there are rejection issues that have to be dealt with as well.First concern is actually finding a donor, as. “White” person we’ve been informed that they are very hopeful of finding a 10/10 marker donor...
Anyone here had such a transplant and living fairly normal afterwards please?
Consultant also advised that they vaccine our under 16 year old children against covid.... so when the Mrs comes home we do not undo all the medicine and progress with bloody covid!
Edited by oldaudi on Thursday 12th August 17:18
I know from the MCL forums that many folk who have allogenic transplants come through the treatment and survive for many years and/or are cured but, it's also likely that forum members don't necessarily report the failures. What I do believe is that the younger and fitter the recipient is the better the chances of success. Once again, I recommend strongly searching out on line support groups specific to AML.
You are correct regarding the transplant. They explained they will basically destroy her immune system prior to the transplant so the body has no energy to fight it. So although it’s seen as an invader the body will not fight it.... we hope. Then it takes over and then provide transfusions to help it bring the immune system back up.... if the body rejects it then it’s back to chemotherapy but every step is very high risk.
What a mess
What a mess
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