[ironbear62Participant]

Hi folks, good to be part of a like minded community, and I would to share my experience in the hope that someone can tell me I’m doing ok, give me some advice, tell me that you’ve been there, or that there is light at the end of the tunnel.
On May 10th, after weeks of suffering acute back muscle pain, an abdominal growth which looked like a hernia, and waiting three weeks for a scan, I was informed by a consultant, with a small audience surrounding my hospital bed, that I needed an emergency operation on my back to prevent paralysis. Two of my vertebrae had been destroyed by a tumour, and my spinal cord was in danger of compression.
After the shock, came calmness,then uncontrollable sobbing. Tumour? That’s cancer then, on top of a major operation. Wow.
The op was a success. My spine is scaffolded with four pairs of screws and two titanium rods. I am still, 14 weeks later, in pain and trying to regain mobility, and have gone from sitting up in bed in agony, standing for thirty seconds before fainting, Zimmer frame shuffles, crutches, stairs and now no crutches at all in the house.
I underwent five sessions of radiotherapy to zap the remaining critters in my spine. This was horrible, but it worked.
Now comes the long haul after the diagnosis – multiple myeloma. Incurable. I’m 57, Doc says time is on my side. It’s manageable. 6 months of chemotherapy, VDT. Then a bone marrow transplant, whatever that involves, and more recovery time. Then remission, hopefully, a few more precious years.
My support network is great,my wife is my rock. But I’m terrified. I cry for no reason. I try to stay positive. The hospital staff are wonderful. My life is on hold, I cannot risk infection. I have a bucketload of tablets, I inject myself, I visit hospital once a week for a big needle of cancer killer. I’m still trying to walk properly again. I’m into my second cycle. Am I right to feel cautiously optimistic? Or is this the calm before the storm of the bone marrow transplant?
Thank you for listening, and all the very best to every one of you.
Dave.

• This topic was modified 5 years, 3 months ago by  ironbear62.

[rosaryParticipant]

Dave, that is one tough journey so far so well done getting back on your feet, yes you should be optimistic mainly because of your age at 57 and that they have successfully operated on your spine plus the huge advances in Treatments available to treat myeloma. You ask about bone marrow transplant but maybe it’s stem cell transplant you mean and there’s a very good briefing document on the web site that sets all this out ….you haven’t talked about your blood test results which is the key to understand your starting point and progress to get ready for the SCT , mainly paraprotein, free light chains and plasma cells in your bone marrow… I’m 58 and had a big lesion (tumour) on my arm that required 10 courses of radiotherapy and 4-6 cycles of chemo. Just started 4th cycle and now prepping for the SCT hopefully in Oct and yes plenty of tears over a shock diagnosis ! Do everything you can to keep your mobility improving and start focusing on your diet all of which helps get ready for the transplant and if that all goes well my views is life expectancy is way more than you imply and I believe will offer a cure for those of us in our 50`S ! Many have said to me dealing with Myeloma is a marathon not a sprint, Hope the chemo is manageable ….Best of luck

[ironbear62Participant]

Hi Rosary
Thank you for the encouraging words,they mean a lot.
I guess I need to research more into the specifics of what my surgeon called a “bone marrow transfusion”, but the only way I’ve been able to cope and deal with this avalanche of devastating emotion and physical challenges is to take it a step at a time, breaking it into manageable targets so far; operation√ walk with zimmer/crutches√ radiotherapy X5√ now chemotherapy, a cycle at a time. All I know is that I’ve had a biopsy (bloody painful) and constant blood samples taken weekly, so I guess I just trust the professionals. Nearer the time I guess I’ll know what lies in store but I struggle to cope with looking too far into next year at the moment. I’m busy coping with the present, and living for the moment.

[rosaryParticipant]

Dave, good on you and yes that Biopsy made me yelp ! When you’re ready i suspect I can help a bit more with answers to your questions but all Myeloma is different and need to be careful not to make any incorrect comparisons .. I’ve personally found the more research / Knowledge I gained the better i felt about everything.

I looked into the Bone Marrow Transfusion v’s stem cell transplant as I have been confused about this myself … one answer I saw was

“Whether you hear someone talking about a “stem cell transplant” or a “bone marrow transplant,” they are still referring to stem cell transplantation. The only difference is where in the body the transplanted stem cells came from. The transplants themselves are the same.”

[kevinParticipant]

Hello Dave
Optimism is certainly ok. I am both optimistic and positive. Diagnosed in 2006 at 49. I asked and was told my prognosis was 50/50 to make 5 years. I always remember this and smile as the consultant said ‘I wont be wrong’. Here I am coming up to 13 years post diagnosis having had 3 courses of treatment, 2 SCTs and 2 remissions each lasting about 4 years. I am currently in full remission and on maintenance treatment until November and looking forward to an even longer remission. I had not even heard of the drug that I had for my latest treatment and am having as maintenance when I was diagnosed. I am sure there are even better treatments around the corner. It is as I am sure you have heard a very individual disease and am sure when / if it returns there will be something else to sort it out. I have great faith in my consultant and am sure he will keep me going for many years to come.
Best wishes
Kevin

[shaun3Participant]

Hi Dave, sounds like you’ve been in the wars recently but really well done for getting through. I suspect tht your ability to get to your current position should give you optimism if nothing else. And I’m convinced there’s lots of reasons to be optimistic about the future buddy.

I was diagnosed about 18 months ago having suffered, like a lot of us, with a bad back and bone pains. Long story short, I had two collapsed vertebra in my spine and I was diagnosed with myeloma stage 1. I was 52 and pretty fit with a large happy family and a really rewarding job. Since then I’ve been on a number of courses of induction treatment and had autologous stem cell treatment. In a month I’m going in for an Allogeneic transplant. I’m still pretty fit and still have tht same job tht I really enjoy. I intend to take a couple of months off for the stem cell and then return to work. My wife, family and friends have been utterly brilliant.

There are stacks of new drugs available and new ones being developed all the time. Myeloma is part of my life but it runs alongside me now and I do not intend to let it beat me. So stay strong buddy. I cried like a bay for the first few days but tht soon passed and life remains a brilliant and exciting journey. And yours will too.

[ironbear62Participant]

Thanks Shaun and Kevin for those words of encouragement. Sometimes it’s hard to see the light at the end of the tunnel. Cycle one complete, and the only side effects so far are an increased appetite and feeling knackered! Surgeon is happy with my bionic back,bone already starting to regenerate, should be as good as new after 12 months. One step at a time. Cheers guys.

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