[willjames2Participant]

Hi Everyone,

Just a quick update on my back. It seems to be healing and feels much better a the moment. I'm well into my second cycle of CTD and I'm responding well to the Chemo. I'm due to start my 3rd cycle on 14th October. I think the combination of the rest, the pain medication and obviously the Chemo has done its trick for now and I continue to get stronger. My next visit to clinic is Friday 11th October where I'll get a second confirmation on my Lambda levels to see if they have dropped significantly since my last blood test as they believe they have already since the bloods taken on 20th September.

I went to see the Radiologist at Christies however because there were no specific larger areas to treat (although I have got several lesions on my spine) and I was actually walking at the time (first time I'd walked, very slowly I might add, since being outside of the house) and not visiting a Hospital in a wheelchair he said it's best to leave alone and preserve any good Bone Marrow that may get destroyed through treating each small area within my spine if I'm responding to the Chemo.

All in all things are quite positive at the moment and the fact that I get actually get around, go for a short walk (even if it's only from my Dads car to the field and back )and watch my Son play Rugby has been quite uplifting. My fear of back spasms have almost gone however I'm still conscious that I can't do too much too soon for the fear of going backwards again.

I know it's early days for me still and there will probably many rough days ahead however like my Wife said "take good news when you get it, be happy for that moment and celebrate any positives". This is good advice and keeps me going. I'm a little more reserved in my thinking knowing that the news won't always be good somewhere down the line but remaining positive wherever possible is essential I believe in dealing with our illness.

Hope you are all well and my thoughts are with everyone.

Kind Regards

Scott;-)

[LindylouParticipant]

I'm so glad you are able to write so positively when you've clearly been through so much. Stay strong and enjoy the small things :0)

[willjames2Participant]

Lindylou,

Thanks. Yes, I'm trying to remain upbeat and count my blessings when things are going well. I have had a rough time of it however I'm sure that there are many others also who have had similar experiences. I know I'm not alone in the way it's been for me and it affects everyone differently but I know pain is one common feature that we all deal with.

I won't lie down and be 'beat up' by the illness because that's not me. I'll stand up, take it on and see where we go. That's the only way I know how to deal with it.

Hopefully it will be enough for now and I'll worry about the rest again.

All the best.

Scott;-)

[meganjaneParticipant]

Hi Scott,

I am glad to read your back is improving. My husband Phil had terrible back when he was a diagnosed and had the back spasms you describe a couple of times. Once was on the way up to stairs to bed, we were stuck halfway up the stairs for what felt like an eternity at the time. Phil found that his back steadily improved during the six cycles of treatment and now nine and a half months post SCT the pain is still there but not all the time and no where near as bad. He has seen various consultants about having kyphoplasty to help with the collapsed vertebrae but often when the appointment has actually come round it is during a good period for his back so nothing has been done yet. Phil is going for another MRI at the end of this month to see if the kyphoplasty might help to repair the damage.

Continue with your positive attitude, radiotherapy may not be the answer but there are other options you may be able to use in the future.

Megan

[willjames2Participant]

Megan,

Thanks for the reply. It sounds like your Hubby had it bad and is still struggling now. It's awful when you can't move for fear of a spasm. The first time I had one I felt like I had been shot with an electric bolt!

I know early on (a couple of days after the 1st spasm) it took me about an hour to try and get out of bed. It was horrendous and I couldn't move for the fear of it going again. I eventually dragged myself out inch by inch on my stomach backwards trying to keep my back straight.

I feel tons better now and it actually been about 52 days since I collapsed on holiday and taken into the Menorcan Clinic so within that time and with the treatment I'm having it's easing. However I still fear of bending forward too far and especially twisting. I'm not sure if I'll ever be 100% again.

I'll keep pushing on and see how I get on.

I hope you and Phil are well.

Thanks

Scott:-)

[LindylouParticipant]

I suddenly lost my mum to this dreadful disease, it was very aggressive and she was 85, one minute she was pottering around the house the next she had hypercalcemia and blocked kidneys, her heart couldn't cope. Now my friend has been diagnosed 41 years earlier than my mum. Given I'd never heard of it before late Spring I find that almost unbelievable.

Coming back onto the board after recommending it to her after seeing the under 50's group I came across your post and was touched to hear you enjoying doing simple things and taking simple pleasure out of it. I know it's the kind of message my friend will be glad to see.

[SIMSParticipant]

My husband has had the cement in the vertabra procedure, on 6 vertabraes, because he waited too long they just calapsed….we wish it could be done earlier, we were being told that the stem cell transplant would make it better but it didnt it just got worse, the procedures have made such a differance and my husband s back looks straighter, he has to use a back brace called a boston brace now, to help the spine not get wose and help keep him upright, it helps with the pain, but his legs are swelling,when he goes out he doesnt wear it, but does wear it about 18 hours a day while hes redundant at the moment, the point im getting to is,if this procedure is offerd then take it, sooner rather than later, helps so much with the pain also! The procedure is quick, first op was 4 hours the second 1 and a half hours, he ws out after the operation about 3 hours later! walking fine and at home.

[emmafoxParticipant]

Hi Scott,

I’ve just joined up here and been having a look around. Thought I’d just say hi as we were both diagnosed at the same time and at the same age! And I thought I was unique…

I didn’t however have bone pain, and luckily  still don’t. I do have some bone lesions but they’re teeny. Thank goodness. Your bone pain story seems to be a common one. I hope you’re managing ok. I have light chain myeloma. I too have troublesome lamda’s . 17000 of the little buggers at diagnosis.  I’ve now had 5 cycles of CTD and just about to start my third on velcade. I was having swollen ankles at work ( kind of expected as I’m an A&E nurse and work 12 hour shifts). And I was getting tired during my daily training/exercise. This was most certainly not the diagnosis I expected. It’s tougher than anyone could ever imagine eh?

I’ve just been briefed on having stem cell transplants. Firstly an auto but Dr’s are also keen for me to consider an Allogenic transplant from an unknown donor. It’s set me back to be honest. The statistics are petrifying but there is a carrot of ‘cure’ being dangled which can’t be ignored. Have you been spoken to about a transplant?

I feel like I’ve rambled on a bit About myself…..it’s kind of habit after 5 months of this as you may well appreciate.

anyway……I thought it might be nice to know someone in a similar situation for support as most of my chemo clinic friends have got a few years on me. I hope you don’t mind me contacting you….

[coastiParticipant]

Hi Emma,

I’m new on the forum too, and I’m also considering the allogeneic as part of the LenaRIC trial. Just wondering if that is what you were given the option of?  As you say it’s a huge decision. I was presented with it half way through my CTD therapy for autoSCT (which I had just before Xmas), so have been thinking about it for a while and trying to read as much as I can find to make the best possible decision.  I’m pretty sure at this point I’m going to go for it, but reserve the right to change my mind! Possible cure is a big carrot, but when I’m currently so well and I’ve no other big issues due to MM it’s risking a lot. Doctors think I’ll be having end of April or May.  Send me an email or reply here if you want to share your thoughts on this – it’s never far from my mind and I would be glad to share with someone faced with same decision.

Sorry to jump on your thread Scott – hope all is going well for you.

Laura

 

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