[GavinParticipant]

Hi there
First ever post. I am newly diagnosed MM. After a successful response to radiation & steroids to relieve pressure on the spinal cord I am now being advised by my haematologist to undergo chemo leading to SCT. I am early Stage 1 and apart from the vertebra problem all my vital organs are in good standing and I feel really well (!). I admit to being very concerned about undertaking chemo, given the potential side effects and the immediate effects on quality of life. Is there anyone out there who has decided not to go the chemo route? I would like comments if possible, from both those who have and those who haven't.

Best wishes to all.

Gavin

[FleeParticipant]

Hi Gavin,
I was in your position in April of this year, feeling well with my only symptom being rising paraprotien levels, I chose to have chemotherapy and had four cycles which wasn't too bad at all, I didn't have any significant side effects except for reduced energy, I've had my stem cell harvest four weeks ago and am having my transplant next week.I can't wait for it to be over to get on with my life. I just have it in my head that this year has been given over to myeloma (I was diagnosed in January 2010) but in the new year I'll be in recovery and hopefully remission.It also helps that I have very positive support around me, I'm 45 with two kids and lots of plans for next year. My advice would be to go for it, the sooner you start the sooner you'll get to remission.

Regards
Frances

[GavinParticipant]

Hi Frances
Many thanks for your response. I am so pleased that the chemo has worked for you without too many side effects. Did you have the standard chemo package? I am considerably older than you at almost 70 but the haematologist thinks I am robust enough to cope.Luckily I also have a very supportive family and friends around to help me through.
Best wishes for the transplant next week. Hope you don't get too bored during your stay in hospital and that all goes very smoothly.Would love to hear how everything goes for you in due course so stay in touch when you can.
All good wishes
Gavin

[FleeParticipant]

Hi Gavin,
Thanks for your kind words, I started out on the VAD treatment but was allergic to one of the drugs so was changed to VMP.This worked very well for me although I started to get some periphal neuropathy towards the end, nothing too bad though.Will keep in touch re progress
Regards
Frances

[GavinParticipant]

Hi Frances
How are you. I hope the SCT went OK and that you and the family had a good Christmas. Would love to hear from you and know how things are going.I have come round to the view that I should proceed with Chemo, etc and will be beginning treatment under Myeloma XI trials in the next week or so.
In the meanwhile every good wish for 2011.
Kind regards
Gavin

[brochoParticipant]

Hi Gavin I missed your post originally but I see you have made your decision now Good luck with the chemo and trial In my experience the care you recieve when taking part in trials is excellentAs for your age being a factor David( Perkymite) has just had his sct at 68 and is doing very well so theres no reason to think age alone would mean things wont go well Heres to the new year and I hope you get a good result and have a long period where you are treatment free love Bridget

[PerkymiteParticipant]

Hi Gavin, sorry to welcome you to our little band, however you have come to the best site for support and help.

As Bridget has said I am 68 and have just completed my Stem Cell Transplant. If you want me to give you my medical history from diagnosis (MM journey) so you can compare I am will be happy to bore you with the details 😀 . Any other help and advice I will be only to happy to help, just ask away.

I did a blog "musings from ward 9" which you might find interesting it details my SCT.

And, yes, as another baby boomer, I think you are taking the right path.

Kindest regards
David

[GavinParticipant]

Hello Bridget
Thank you so much for your words of encouragement & support. I'll post from time to time when my treatment starts. David has also sent me a message & I will follow up on his record of treatment which will be of great interest.
Very best wishes to you and your family for 2011.
regards
Gavin

[GavinParticipant]

Hello David
Many thanks for your encouraging comments.I have read your blogs posted during your recent SCT and found them very informative and helpful, thank you. I really appreciate you getting in touch and wish you every successful response to your treatment in 2011. Please stay in touch.
Kind regards
Gavin

[DebsParticipant]

Hi Gavin,

Sorry you're going to have to start treatment, but hopefully now it will help keep the myeloma at bay. Where are you being treated by the way? I started on the Myeloma XI trial 7 weeks ago and have been lucky enough to get revlimid…will hopefully find out next week how it is affecting my paraprotein.

Let me know if you have any questions on it and if I can help I will do!!

Debs x
gascoyne2@virginmedia.com

[GavinParticipant]

Hi Debs
Lovely to hear from you. It would be very helpful to stay in touch and exchange experience and info. Hope the outcome of your chemo is positive and allows you to move on to SCT directly.I am meeting with my haematologist at Dorchester(Dorset) hospital on Tuesday to decide the next moves.
Thank you for getting in touch.
Happy New Year
Gavin

[DebsParticipant]

Hi Gavin,

Things have gone pretty well with the trial so far, and I have to say, in comparison to what I had expected (The devil dex days you hear about, and the sickness etc) it has been much better. It sounds like CRD is slightly easier to tolerate than CTD although I don't know if that has been proven. I haven't had the response to dex that most people talk about (I wonder if it is due to a different reaction with Revlimid to what you get with Thalidomide) and the main issues have been tiredness at times (I just have to go bed at 6pm for a couple of hours!!) and breathlessness.

As you say, I'm hoping to see my figures drop well enough that I can go straight to SCT in april/may.

Good luck on Tuesday and keep in touch with how it all goes (email above if you'd prefer)

Debs x

[FleeParticipant]

Hi Gavin,
Thanks for your new year wishes, I hope it will be a good year for you too. Im almost 6 weeks post transplant now and doing really well, just attending the hospital for weekly blood checks at the moment, everything went according to plan and I was able to come home on day 14 after transplant. Of course I've been spoiled rotten since I came home but my energy levels are starting to recover so Im looking forward to being more active and getting back to some kind of normality in the coming weeks and months. Im delighted to hear your starting your treatment, I think its a very positive move and I'll be watching out for your posts to track your progress, again very best wishes for the coming year and I really hope things go well for you
Sincerely
Frances

[GavinParticipant]

Hi Frances
Great to hear things are going so well for you. Only two weeks in hospital is just brilliant. I hope all the progress made continues throughout 2011 and beyond.
I saw my haematologist yesterday. All my blood tests were excellent and back to normal. Paraprotein level still very low. Had xray on a new/persistent area of pain in my side and face a bone marrow biopsy next Tueday.Chemo delayed until all the results are in as the Dr now wondering if starting the Myeloma XI trial should be delayed as all the signs are so good.
Good to hear from you. Keep me up-to-date with your splendid progress.
Best wishes
Gavin

[mhnevillParticipant]

Dear Gavin
I'm surprised that i didn't pick up on your posting before as I have been asking very simnilar questions to you.

I was diagnosed in Oct 10 at age 65yrs. I had an op to remove a plasmatoma to my spine. There are traces of MM i(now at 10 I believe) in my bone marrow, but like you everything else was fine. MY first meetings with the Consultants were very unsatisactory and it was a case of are they or aren't they going to recommend chemo. There were some suspected lesions in my bones.

After my op I felt better than I had for years, because all the pain in my back, which both I and my GP had put down to worsening arthritis, had made life unbearable. Because of this I was in no hurry to have chemo, although I knew I had to have radiotherepy, which I am in the middle of now.

Fortunately, when I finally met up with the Oncologist, at the local hospital, who will be looking after me long-term, she could quite understand my quality of life over quantity of life questions. She said I was at the beginning of my MM journey and, following a blood test she did (the paraprotein 10 reading) she says she isn't advising any more treatment at present. She is seeing me again at the end of the month.

Sorry for the long posting! I can't remember if you said how you came to be diagnosed.

I have joint the American MM site and with everything I have read there I would certainly not bbe in a hurry to have a tramsplant, although i wouldn't want to say "never". It seems many Oncologists are questioniing whether transplants are still neccessarily the gold standard for treatment.

My very best wishes to you as you tread this road. I shall read of your progress with interest.

Mavis

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