[nickyrParticipant]

Hi

My name is Nick, I’m 50 and have just been diagnosed with myeloma.

I was diagnosed with MGUS 3 years ago and went to see my GP after I’d developed a nagging bad back about 3 months ago.  She ordered an x-ray which showed possible myeloma so I went into hospital for a diagnosis and some pain relief!

I start a course of radio therapy next week as I have a plasma cytoma on my spine (which caused a fracture and the pain) and then start chemo and Myeloma XI (I don’t know what regime yet) after that’s finished.

At the moment everything is a bit of a blur and have come home from hospital to spend the weekend with my family 🙂

Luckily I live near to where my treatment will take place so will hopefully be seen as an out patient up to the time I have my stem cell transplant.

Any helpful hints, tips, etc. gratefully accepted.

Many regards, Nick

[susieParticipant]

Hi Nick

I’m sorry to welcome you to this forum but never the less welcome. You will find many helpful folks on here who will give you lots of info and advice.

I was interested to read your story which sounds similar to my own. I too was monitored for MGUS for about 3 yrs until I developed severe lower back pain with intense sciatica. I had an MRI at one of these private places the NHS uses, where I was diagnosed with 4 compressed discs, a compression fracture of L1 and a herniated disc. Great I thought, until my haematologist told me there was a large plasmacytoma on my sacral spine which had been completely missed by the person who reported on my MRI. By this time my paraproteins had risen to 62 and I was diagnosed Myeloma with plasmacytoma. I was started on chemo treatment (Myeloma X1 trial) quickly. My consultant said he only wanted me to have radiotherapy to stop my pain,however the pain has gone with the drugs so I’m quite glad as personally I didn’t want radiotherapy unless necessary.

I was interested to read you’re having it before starting your treatment. Where about’s on your spine is the tumour ?. Also where are you being treated.?

Give yourself time to learn as much as you can about this pain of a disease. There are lots of treatments for it, not always pleasant but they get you there. You’ll find this site really useful for info and lots of helpful advice.

Very best wishes

susie

[jonoParticipant]

Hi Nick

I had one weeks worth of radiotherapy on my collapsed l3 pain has reduced greatly I am on the x1 trial at the end of the low dose chemo part just before SCT stage. One peace of advice is at the moment stick to this web site and forum. As info on the internet is outdated and sometimes completely wrong

Jono

[nickyrParticipant]

thank you both

Susie – my fracture and plasma cytoma is in L3, and I’m being treated at Singleton Hosptal in Swansea.

[mhnevillParticipant]

Hi Nick

Sorry to hear you have had to join this site. Welcome from me. I have found it invaluable over the past four years.

It is interesting how different all our MM journeys are. I was diagnosed, following completely debilitating back pain, with a plasmacytoma encircling one of my vertebra. I had to have it surgically removed and rods put in to support my spine. This was followed up by radiotherapy.

I eventually started CDT eighteen months later. I put it off as long as I could, but does mean I have lots of bone lesions. Since then I have been in remission for over two years, it still have very limited mobility.

I’m lot older than you, nearly 70, so decided not to push for SCT as I have other health problems.

Good luck with the Trial.

Best wishes.

Mavis

[julierennieParticipant]

Hi Nick

I was diagnosed with MM in July this year, complete shock as no real symptoms to speak of.  I’m on the Myeloma VI trial, just finishing my fourth and last cycle before SCT in January.  I’m finding the treatment very tough at the moment with side effects of the chemo.   Try to stay positive and take comfort from some of the stories on this site.

take care

Julie

[nickyrParticipant]

thank you everyone

[VickiParticipant]

Hi there,

My partner was diagnosed in 2011. He had one dose of radiotherapy for a fracture at t12 in his back, he went on myeloma X11 trial taking cyclophos, dex and revlimid. It worked very well,for him. He had 7 cycles. The big issue for him was getting the stem cells out for,the SCT. It took 3 goes and even then he only jst got enough!

He got about 2 year remission. He has now relapsed and started velcade with dex and cyclophos. Determined to beat it again. When not on treatment Colin has been really well

Take care

Vicki and Colin x

[nickyrParticipant]

thnk you everyone again

I’m in the middle of a week of radiotherapy which has gone well – this morning the pain in my back is much, much better

I meet my Dr and trial nurse next Thursday to discuss my chemo regime.  Can’t say I’m looking forward to chemo – especially over Christmas.

[botopeParticipant]

Hello Nick I’m also relatively new to the forum, having recently started chemo on the myeloma XI trial. Smouldering myeloma diagnosed for me in April 2012, lesion/plasmacytoma on my rib earlier this year. I had radiotherapy for that, but it didn’t seem to shrink the tumour, then another found in my hip with a high level of activity in the bone marrow biopsy.
I also felt as though I was swept along once I had accepted that chemotherapy should start; didn’t know what was going to happen next and felt quite scared by the whole thing, to be honest.
I have had two cycles so far, just started my third, and it is tough to be contemplating Christmas with chemo, I agree. But I will be with you, too! And others, I know. I’m going to hope it’s not so bad and look forward to Christmas 2015 – by that time we might be running around like Santa’s elves again!
I hope your consultation on Thurs goes well: my chemo (CDT) includes dexamethasone, a steroid, and I read somewhere that it helps with the pain, and I have to say that it does seem to have had some effect on my two “hot spots”
All the best

[nickyrParticipant]

H

I had my consultation last Thursday and was due to start chemo yesterday.

But on Sunday I had searing back pain and had to be re admitted to hospital.  They did another X-ray and i actually started chemo today.  It’s quite intensive over the next 12 weeks.  I have to have another scan to see what’s causing so much pain and have to stay here until it can be managed.

Gold  luck with your treatment – we’re in it together 🙂

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