[daveoParticipant]

Hi everybody.
My name is Dave I am 65 and I have had Myeloma for 5 years. Back in Sept 2006 I was diagnosed after having MGUS for 12 years. I was treated with VAD and had a STC on April 19th 2007. This went well and I was out of hospital in 3 weeks. By July (my youngest sons Wedding) I was quite fit (without hair) and started to ride a bike to get fitter. I returned to work part time and went back to the Golf Course.
My pp level was 71 when diagnosed but it had been reduced to zero after 5 lots of VAD. I remained in complete remission until this week when my specialist told me my pp level was 6. I have now retired but continue to play golf twice a week.

He has arranged for another blood test in 6 weeks so that he can tell what the pp level is doing. I asked about another SCT but he seemed to imply that it would be better to try some of the new treaments.

Has anyone out there had 2 SCT's at my age or are the new treatments the way forward. I have had no bone pain or anything else over the 5 years so still feel quite fit.

Hope somebody can help and let me know their thoughts
Thanks
Dave

[PerkymiteParticipant]

Hi Dave, Welcome to the site (?).

Several on here have had two SCTs, but generally they have been a lot younger than us, I am 69, if my memory serves me right – and I cannot be too sure of that nowadays :-/ .

I was told right from the start that I could only have one SCT because I was 68 and 70 was the cut of limit not matter how fit you are, and I was very fit at the time. At least one Consultant at the hospital did not want to do my SCT, I had to request it. As it turned out, I struggled to get the necessary Stem Cells out, just made the 2 mill, so two SCTs has never been an option for me.

I had my SCT in Nov/Dec 2009 got to 2.3pp, never got to ZERO 🙁 but my bloods are good, I am told. So I am on a wait and watch listing with a test every 3 months. Once it starts to rise again I assume I will be on "new treatments" whatever they are then of course:-D

Kindest regards – Vasbyte

David

[tomParticipant]

Hi Dave a warm welcome to the site, pleased you found us, only had one SCT and just a mere Baby at 56 😀

Good Luck with whatever you get 🙂

Tom "Onwards and Upwards"

[daveoParticipant]

Thankyou Tom and David for your replies.
Nice to speak to people in the same situation.
Will bring you up to date when I have more info on my blood results.

Tom I notice you try to speak to most newcomers. Very nice of you to do so.
I will try to read more emails and comment if I can help
Dave

[tomParticipant]

Hi Dave

Yes I try to go on and answer a newcomer as soon as poss as i know when I first found out I had MM and posted here and other places it was the waiting for a reply that I found frought :-S so even if I dont know the answer i feel beeter just to say Hi.

Good Luck on your road to Remission Dave.

Tom "Onwards and Upwards"

[mhnevillParticipant]

Hi Dave

Welcome! It will be encouraging to folk reading your post that you have managed to dance with this dreaded MM successfully for so long.

As your PP levels are so low and you have no other symptoms, why would you be thinking of any treatment at the moment?

I haven't had a SCT. My current PP is 13 and I have no inclination to go down the STC route even if offered me at a later date. I am 67!

All best wishes to you.

Mavis

[brochoParticipant]

Hi Dave welcome sorry but I havent got any useful information for you about second scts at your age It seems each hospital has its own protocol and cut off point. If your pps are rising slowly and there are no other symptoms then maybe the drugs available now would be a safer option Good luck in making your decision Bridget

[GillParticipant]

So sorry that you have had to join us but welcome. My husband has had 2 SCTs but relapsed quite quickly . He is now on revlimid and (fingers crossed) it seems to be keeping the mm under control.

We were told some time ago that mm is regarded as quite sexy in medical circles ie. It is an illness that doctors are very interested in and are working hard to understand and control it

It seems that the further forward the drugs go the more the medics are trying to use drugs rather than SCT

All the best Gill

[CarolBradley1Participant]

Hi Dave
Sorry can´t help with your specific question but did just want to welcome you to the site as we haven´t met here before.
Sorry that your pp is on the rise but over the years prior to treatment (I have had one SCT) my pp fluctuated quite dramatically usually when I was under stress and as soon as things settled down at work etc. so did the pp.
Anyway, I do hope someone has the answers for you and in the meantime best wishes.
Carol

[AlanGoldstoneParticipant]

Hi
My name is Alan I am 64 and start today the process of harvesting my stem cells
I had the hdc last Monday 20th and thank God have had no side effects,However I am quite apprehensive about the next three or four days of treatment any advice please?
Alan

[eveParticipant]

Hello Alan and Dave
Welcome to the site.

Dave pp levels at 6,it just might be a blip,Jo on here had food poisoning and her levels went up,only to go down again when she was better,its going to be a hard 6 weeks waiting for next blood test.As to new treatments as Gill said lots in the pipe line,

Alan there are lots of people who had SCT on here its worth reading old post,but everyone will tell you,everyone has a different experience my husband is waiting on test to see if he can have SCT and is undecided about the whole process.Let us know how you get on.Eve

[AlanGoldstoneParticipant]

Hi Eve
Thanks for the reply and advice ,just back from the Hospital not enough stem cells today have to take 2 more injections and back on Wed

[brochoParticipant]

Hi Alan sorry you didnt get enough cells today try not to worry though the little blighters will be fighting to get out by Wednesday!! I had a similiar situation , the first two days I hardly produced any but on the last day they got more than enough Good luck Bridget

[AlanGoldstoneParticipant]

Thank you for the vote of confidence it really cheers me up to hear success stories
alan

[PerkymiteParticipant]

Hi Allen, welcome to the site (?).

You are better off starting a new posting rather than join half way down on an existing one.

It took me 4 attempts to get my Stem Cells, first three I only got One mill and then I had to wait nearly 3 months for another go. The second attempt they flew out.:-D

Kindest regards – vasbyte

David

[Author]

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