[DAVE1Participant]

HI ALL
My name is Dave and im 47 years old
In july 2011 had plasmacytoma removed from my spine which caused being temporary paralsyed from waist down,i had a 9 hour op and 2 metal rods and 12 screws put in my back,i was told i will be lucky to walk again,but the op was a success and i would be on 2 crutches for 12 months then 1 crutch for life,but with my determination i was out of hospital in 6 days and now can walk round the house unaided and on 1 crutch when out for a short walk depending on confidence and legs,the problem was it compressed my spinal cord
im on my 4 month of cdt,my paraprotien was 8.7 at the start and is now 3.7 and my myeloma 4%,everybody has told me that this is very low,and now i have been recommended sct which scares the life out of me
anybody had problems with there eyes on cdt which i have,side effects not to bad at the moment just mentaly torture,a bit worried about nerve damage taking thalidomide due to already having some nerve damage in my legs
not much support from my doctor or nurses,all they care about is getting my counts down not my symptoms
any support welcome
cheers Dave

[tomParticipant]

Hi Dave

Well a warm welcome to this site am sure you will get a warmer welcome on here than you seem to be getting from the professionals 🙁

My you have been through the wars and done Bloomin well with it 😀 I can see this MM thing has got its hands full with you giving it a great fight8-)

As for the SCT after reading your past problems this Transplant will be a walk in the Park on a good hot sunny day for you 😎

Good Luck with the Road to Remission and it will be bumpy but am sure you will beat it

Tom "Onwards and Upwards" x

[eveParticipant]

Hi Dave
Tom said it you have been through the wars,and with the determination to walk again,I would say you are doing great,its a big thing,my hubby was lucky he had no compression of the spine,but a fair amount of bone damage.
if you have a look at under fifties there is someone on there who has eye problems ,I think that,s how Myeloma was discovered with him,cannot remember his name.!!
The fact is Dave the people who deal with Myeloma are blood people anything else is passed on to the appropriate department.
I take it when you say mental torture you are worrying about side effects,i can only say start learning about Myeloma then you will see some of these symptoms are side effects,you can always ask Ellen,e mail or phone,or come on here and ask away.

Regards Eve

[brochoParticipant]

Hi Dave you have had a rough time till now but I hope things will get a bit easier now you are on treatment Like you I had surgical reconstruction of my spine after myeloma destroyed 3 and a half vertebrae, luckily I did suffer any paralysis ,much to the doctors amazement! I am so grateful they could do the surgery otherwise I dread to think what life would be like You seem very determined so I am sure you wont be needing that crutch for too much longer Try and take it easy when you are feeling tired though , major surgery takes time to get over and coupled with chemo its a lot for your body to cope with The sct is tough but its worth it to get a decent remission , possibly complete remission , so you can be free of heavy treatment for a long time .A lot of us have had sct so if you have questions about it ask away ! As for tyhe nerve damage my advice is to tell them as soon as you notice any signs such as numbness or pins and needles in you feet and hands , they can lower the Thalidomide dose Good luck and dont forget there is support on here for you Bridget

[BADGERParticipant]

Hello Dave and welcome
you have really been though the mill but you sound a very determined character so I think you will cope very well with SCT we are very aprehensive about all trearments will they work can I cope I think you need to have faith in your medical team they are only trying their best for you
So good luck and keep in touch

Love Jo

[OutdoorsPaulParticipant]

Hi Dave
You have got the determination needed!and sounds like you have really dug deep with getting mobile again well done.I was diagnosed with MM in August and spinal compression and again lucky to be walking. Dr and Nursing team got me in Hospital and treatment began.Just starting 4th cycle on RCD pathway Myeloma 11 trial and just been told I am in partial remission and hopefully complete remission in December my consultant says.My levels are at 3.5 and have been recommended for SCT Jan/Feb 2011.I agree its a daunting thing which is approaching…..but I always think its best to tackle your fears otherwise they grow and i reckon being positive as you clearly are will help.I am just about to turn 40 in December and am generally positive and try to be active outdoors Hill walking and cycling when I can.Keep it up Dave and you are always welcome to e-mail me.
cheers Paul

[MariParticipant]

Hi Dave,

I am sorry to hear you have had such a difficult time, but you sound such a determined and positive person I am sure you will fight your way through this and get yourself back to as normal as possible before long. My husband Steve has had a similar experience to yours. He was a little older, 53, when his plasmacytoma caused compression and paralysis. He underwent emergency surgery and was told it would take him 12 to 18 months to walk again. He did get very low at times, and I think the CDT did not help, possibly the combination of the dex and thalidomide. His specialist nurse referred him to a specialist oncology counsellor and he found this hugely helpful and it brought back his usual positivity. To cut a long story short, he had his op in Jan 2010, followed by CDT and SCT in September 2010. He worked hard and he can now walk pretty well although he still has difficulty with hills, both up and down, and climbing stairs, and he can't run, but I have only ever seen him run between cricket stumps anyway!He found hydrotherapy very useful and spent a lot of time walking arund an round the pool to strenthen his legs. However he finds cycling and swimming much easier and he has regained his fitness this way. He was told he had complete remission following the CDT and went back to work in Jan 2011, full time in February. We have now had a year of normality, he has been very well and even cycled the London to Brighton in June. We had a great few days in Dorset this October, walking the coastal path. He had a great deal of neuropathy after his op, from his waist down, however this has improved steadily over the past two years and he now says he has about 95% of his feeling back with jut a little tingling in his feet, but this is still improving, even after all this time. I can understand your fears over the SCT, it would scare the living daylights out of me. However it is so worth it when it can give you your quality of life back, as I know it has for Steve and for so many others, many of whom post on here. Please ask if there is anything we can help you with. Stay strong and positive and I am sure you will see the light at the end of the tunnel.

With love and best wishes for the future, Mari and Steve

[mhnevillParticipant]

Hi Dave and welcome from me too!

Sorry you were diagnosed at such a young age. I also had plasmatoma, September 2010, but was just off my feet for a couple of weeks before having my op. I always refer it as having scaffolding in my spine! I then had 10 shots of radiotherepy early this year. My only treatment since has been, first bisphosate tablets, now been replaced by Zometa monthly injections, for my bones. I am still walking on two crutches, but this wasn't helped by already having four ops on my hips!

My paraprotein is now at 13, but I am resisting any treatment at the moment. Consultant is keeping me under review every two/three months. I think it is different if you are older (I'm 66yrs). Sorry you have not had a warm response from your Hospital team. What are are you in?

As to SCTs. All those on the site who have had them see to do well although it sounds a pretty gruelling experience. Have just read an article on the American "Myeloma Beacon" site about a recent Spanish Paper which suggests that those who respond well to their initial treatment do well after SCT so this bodes well for you.

All very best wishes.

Mavis

[PerkymiteParticipant]

Hi Dave, Welcome to the site. I would not worry about the SCT I had one 11 months ago, I am 68, and I coped all right. I am not saying it is a walk in the park, like Tom, because people all react differently to it, so be wary and ask lots of questions when you get near the date to arm yourself.

kindest regards – vasbyte

David

[MariParticipant]

Hi Dave,

hope things are going well for you and you are still getting on OK with th CDT. I was thinking about what you said abut having eye problems. I had forgotten about it but Steve did have problems with his eyes. He kept thinking the prescription on his glasses was wrong and kept going back to the optician. He was told that anaethestic can have quite an effect on eyes. Everything has setled down now and his eyes are fine. I dont remember there being anything about eye sight problems on the information sheets we got from the hospital with the CDT drugs.

All the best,

Mari

[tomParticipant]

Na then Dave

How are you doing?
And I hope the info that has been offered will help you on your travel? if you have (and am sure you will) any problems or side effects just ask and our merry band of MM'ers will try and help you through it 🙂

Stay strong Dave and if you feel you need more info or contact you can Email me at t.lappin1@ntlworld.com

Good Luck Dave and dont hesitate to contact me 😎

Tom "Onwards and Upwards"

[Author]

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