[HMasonParticipant]

Hi all,

Diagnosed 17/02/2011 Male 43 married with 2 teenagers.
Symptoms were tiredness, nosebleeds, chest rash, and back pain.
Bone marrow asperation, MRI scan and X-rays backed up diagnosis.
Luckily I had agreed to private health cover, and thus am under Dr Pocock at Chaucer Hospital Canterbury.
Initially lurched from denial, to head in the sand, to why me? to acceptance. I am in a good place 95% of the time, and feel much more positive since the treatment has begun.

I am having the following cocktail of drugs and would welcome any comment, as I am trying to find out as much as I can about something I knew nothing about two weeks ago:-

Bortezomib (Velcade)
Cyclophosphamide
Dexamethasone
Zometa

First chemo infusion was Tuesday 1st March, next is Friday 4th and I am on a two week on, one week off three week cycle of 8 treatments before Stem Cell treatment in London.

So far no nasty reactions, just a general well feeling I suppose from the steroids, and the knowledge that there is now something inside me fighting on my behalf. My marrow is 100% infected in all bones, but luckily no vertibral collapse or compression, and no other vital organs infected.

In some respects I feel lucky, I have fantastic family support, I'm young and otherwise fit, close to hospital and am under a consultant who seems to me to be very good. Id love to hear from anyone of a similar age who is going through what I, and my family are.

Thanks for reading this ramble 🙂

[eveParticipant]

hi hmason

Lot older than you but based in Deal Kent,Try 50 age group a lot out there,My partner is in 6 th day of treatment on myeloma X1 trials he got ctd side.He comes under the same consultant but not seen the big man'Worth trawling site as I found it very helpful and reassuring there are people out there who have been on this journey a long time.I wish you good luck on your journey

regards eve

[brochoParticipant]

Hi and welcome sorry you have had to join us but you have found the right place for info and support It sounds as if you have a good medical team looking after you which helps a lot if you have confidence in them It does get easier as begin treatment and get to know the ins and outs of various treatments but I remember how confused I was initially Have you sent for the info packs from mmuk they are very good .I willtry and answer some of your questions and I am sure others will too I was only on Velcade for a short time last year but you need to watch out for peripheral neuropathy in your feet and hands , velcade affects the nerves and can damage those in your feet and hands so tell your doctor straight away if you get any numbness or pain in your feet ,legs or hands , often they will lower the dose but the quicker you tell them the better so it doesnt become a long term problem Velcade also makes you feel very tired so try not to overdo things and rest when you need to . Dex is the bain of all our lives !!Well maybe not all but it is a nuisance for a lot of us because it diturbs your sleep patterns and can make you very ratty to those around you so warn your family its not you its the drugs It can be useful when you get a rush of energy from it though! I have been on monthly infusions of Parmodronate and now Zometa since being diagnosed , it helps reduce bone pain and removes any excess calcium from your bloodstream to protect your kidneysThere is also some evidence that when used with drugs like Vecade it can actually help beat the myeloma It will be a few months before you have your stem cell transplant if you have trawl through the posts on here there are lots from people who were writing whilt they were in hospital The procedure is very simple really but you can feel lousy for a few weeks afterwards and need to be careful about catching infections , lately more people seem to be getting a complete response or remissionafterwards so it is definitely worth it! I think you are right when you say you have a lot going for you so good luck and keep posting Bridget

[DMCParticipant]

Hi H Mason,welcome to the forum. I am 10 years older,diagnosed October 09, first with Single Bone Plasmacytoma tumour in lower spine following accute back and leg pain. MRI,CT scan and full skelletal x-ray. 10 fractions of Radiotherapy to lower spine eradicated the pain. Unfortunatly never received any chemo along with it,being newly diagnosed, not being any the wiser,this left me with some partial root nerve damage effecting my legs and feet resulting in some loss of power and stability in walking.

By May 2010 Paraprotiens up to 42 now developed into Multiple Myeloma. 6 Months chemo from June to Mid December, CTD. Cyclophosamide, Thalidomide and Dex.
Paraprotiens now down to 1.6 Good news. Have now started Stem Cell Transplant, attended Liverpool Royal University Hospital 1st & 2nd Feb for harvesting procedure successful count on day two. Start Transplant April.
Well thats my story so far. Have found it beneficial for me to be positivly pro-actively involved in all aspects of treatment, lets me know what I'm up against and what to maybe expect in the future. So stay positive H and good luck may God be with you.
Regards
Dave (DMC)

[JonnyPParticipant]

Hi HMason,

Or can I call you H 🙂 .

Your path seems quite different to mine and in any case I know very little about Myeloma at this early stage. So whilst I can't help with the technical stuff, I can at least wish you well with your journey.

Jon.

[PerkymiteParticipant]

Hi Henry,
Welcome (?) to our little band!

No doubt you will but my advice is NOT to bother searching the internet for a magic bullet. I have read all the blogs about Cucumber, Cumin, Red Wine standing on your head whilst singing the Red Flag 😀 etc.. etc.. IF there was a magic bullet we would all have found it years ago ? sorry to be frank but there is not one. You will find all the information you could ever want right here and it is up-to-date. Ask for the free information packs and take a real good look around this site.

There are plenty of youngsters here(I am 68) and you will be able to compare notes and get lots of support. In fact I have been shocked recently by the number of younger people getting the disease. This used to be an OAP decease average age 70 I think. A lot of the statistics are still based on their prognosis. Mine for instance was 2 to 3 years (diagnosed Jul 2009) which is not the case for younger people whom I believe can be up to 15 years and I know of people who have already passed the 16 year point.

Bupa or NHS I do not think it makes a lot of difference, you get tea and biscuits with your consultation and I have to buy my own 🙂 but I think you will find we all go down basically the same path, which depends on your age, type of MM, your clinical condition (ability to take "the medicine") and general level of health. Which is shown here in this old Map of medicine, read auto and allo as the same thing.

http://eng.mapofmedicine.com/evidence/map/myeloma2.html

I look forward to hearing more from you
Kindest regards
David

[onlymeParticipant]

Hi H…

Sorry to to hear you joining us but a welcome from all of us…. I am the daughter of a Myeloma sufferer…..

I cant offer you any advice as I am still learning about different things but pleased to say how positive you sound after hearing such news…

Stay positive and stay smiling

Regards

Only Me
x

[tomParticipant]

Hi Henry
Well a warm welcome to you 🙂

Sorry you had to join though, but seen as you/I or we need something when we have MM cant get a better support group 🙂

I was Diagnosed in January 2009, and since then I have had stem cell harvest and transplant, and now back at work (light dutie's)

All went well but as we all know we have our Off days 🙁 and with the help of this and the under 50's Group it isnt as bad as we thought 🙂

Good Luck with your treatment Henry, and will catch you lata

Tom "Onwards and Upwards"

[zasrsParticipant]

Hi H
So sorry you have joined this site, but there are some anazing people here.My husband has mm and was diagnosed 49 years old in 2002, i think he had had it for several years. He has had two stem cell transplants the last one in november last year, and seems to be coping well. cannot comment on the treatment you are having everyone seems to be different and reponds in different ways. I have found in the past going on google sites so confusing the american ones are a nightmare! The only advice i can offer is to repeat what david said, is stick to myeloma uk they are brilliant.

Good luck

Sarah

[HMasonParticipant]

Thanks for the advice, wishing your husband a good second remission.

Henry

[HMasonParticipant]

Thanks for the drug explanations and your positive comments, wishing you well with your battle too.

Henry

[HMasonParticipant]

And good luck to you too, we seem to have joined the club at a similar time.

Henry

[HMasonParticipant]

Thanks, I hope your dad recovers well, Im ever the optamist so hope to keep positive and beat this.

Henry

[BADGERParticipant]

Hello Henry

welcome to the site sorry you have had to join the club I was diagnosed Jan 09 age 61 had the CDT which worked well for me although I did end up
with numb feet due to the thalidomide this is a common side effect my toes are still fairly numb but small price to pay as the treatment got on top of my Myeloma I have a monthly infusion of a bone strengthner (pamidrinate)

Good luck with your journey
Best Wishes Jo x 😎

[KWilsonParticipant]

Welcome glad you got diagnosed early and have started treatment. Good luck.

xxxxxxx

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