[mhnevillParticipant]

Hi Lesley,

Just wanted to say welcome from me. I went down the traditional route of CDT which worked well for me, but I am full of admiration for those of you who go on Trials. I do send you my best wishes and hope your experience is one of the really good ones!

Love Mavis

[suewiParticipant]

Hi Wendy,
Just been lookin at the forum, May I ask you what side affects you had with the thalmomide, I am on this nd my legs are very weak and wobbly, taking me all my time to walk apart from that I fell just fine, no pain at all. are you going to have the SCT, I am thinking of opting out of the SCT, parlty because I feel so well. Hope treatment goes well for you.
Take care
suan

[suewiParticipant]

Hi Tim
just been reading you reply, so gld you are doing so well, I am on my 3rd cycle and my blood hs come right down, the next step for me is the SCT, but am terrified of this and thinking of not going ahead, as I feel so well I have no pain at all, just very weak and wobbly legs, which I think could be the thalomide, what was the SCT like was you ill for a long time.

Hope things continue to go well for you.

Susan

[GlynBucklerParticipant]

Tim, thank you and the others in this thread. I was diagnosed 6 days ago and needed information about the XI Trial over standard treatment. Your individual observations have already been useful.

I like your attitide Tim and aspire to a similar view; with what I guess will become familiar caveats.

Regards – Glyn

[Pilgrim01Participant]

Hi Susan,

The SCT is certainly the elephant in the room but when I look back I always felt that i was in the hands of experts and that I would follow what they were recommending. This was my guiding light.

With regards to the treatment itself, I was apprehensive more about entering the unknown but in hindsight all of the unknowns were predicted. Following SCT you will feel weak and tired, but this is manageable if you have support from family and friends. You will get a sore mouth, but this is managed through mouth washes. You will lose your appetite but this comes back. You will get diarrhoea but this will pass. You should take comfort from the fact that the worst of the side effects only lasted 3 / 4 days. I should however caution that I did not get an infection; this is very possible and can knock you back, but I was lucky.

As a barometer of condition, when I came home I could only walk up the stairs, one foot and one step at a time. I then found that I could walk one step at a time and then two steps. After about 16 weeks post transplant I can now run up the stairs. All in all the process has taken about 20 weeks.

I am glad that I had SCT because it has put my MM in remission and my medical team believed that it was the best treatment that I could have at this stage of my personal journey against MM.

I hope that this helps you in coming to a decision – one thing to remember is that you can have your stem cells collected now and because they are frozen you can decide when in the future to have your transplant, you do not need to have stem cells given back immediately.

Regards,

Tim

[Pilgrim01Participant]

Hi Glynn,

Thanks for your message but sorry to hear of your recent diagnosis.

Hope my note to Susan above helps but if you want to chat about Myeloma XI I am happy to do so at any time.

I have been to hospital today and I begin my maintenance programme tomorrow. I have been randomised to Revlimid and again enter the unknown, apprehensive of potential side effects. The good news is that if you cannot tolerate any of the treatments you can come off the trial at any time – so in reality you are always in control.

Regards,

Tim

[2grahamParticipant]

Lesley,
I can't speak for everyone but the Myeloma XI trial is certainly working for me. I was diagnosed just over a year ago, had 6 cycles of RCD by which time there was virtually no sign of myeloma any more, had my SCT in July 2012 and am now in complete remission but taking maintenance treatment, again as part of the trial, with the view to prolonging the remission period. No particularly nasty side effects and getting on with life once more.
All the best,
Graham

[charisma4Participant]

Hi Graham,

thank you so much for getting in touch. I have started RCD today, and your story has given me some much needed mental strength.Getting through all those tablets on day 1 takes up some time though! The consultant thinks I will need 4-6 cycles.

I had a peep at your profile, oh dear you were so young to have this horrible 'thing'. But I am so pleased that you are doing so well, long may it continue !

kind regards,
Lesley

[charisma4Participant]

Hello Vicki and Colin,

thank you so much for your input and advise, and for 'telling me as it is'.I started today, and felt quite 'befuddled' sorting my pills out. I've made my own list of when and best times to take each set of tablets, this afternoon, so hopefully, there will be no slip-ups !

Everyone on this site has been so helpful and kind, I appreciate it so much.

Kind regards,
Lesley

[charisma4Participant]

Hello Mavis,
thank you for your kind words and encouragement.I don't know your present health circumstances, but I hope things are going well for you.
Kind regards,
Lesley x

[charisma4Participant]

Hi Tim,

thanks for getting in touch. The candidates for myeloma XI are chosen randomly by computer, after you have agreed to take part. So if the 'computer says NO'…..now which comedy sketch is that phrase from !?

It's so good to know that you are well, so encouraging for us newcomers to this horrible illness.

Are you actually CLIMBING Ben Nevis, or just taking photo's from the bottom !! Either way, have a great time.

I will do my very best to follow your advise to stay optimistic and strong

Kind regards,
Lesley

[wendyduffieldParticipant]

Hi Suan

I had weak and wobbly legs too but think it might have been caused by the dex not the thal or maybe both? Are you taking dex too? I already had my SCT in September 2011, I'm now starting to relapse. You need to see what your doctor says about having it or not.

Good luck with your treatment

Wendy

[suewiParticipant]

Hi Tim

just been reading your post, were you on the dex and thalomide, if so did you have any side affects, I am on the cdt trial with dex and thal. most of the time I feel light headed and my legs are very weak and wobbly, feel like I have no control at all, would be interested to know if you had any of those symptoms.

Take care

susan

[Pilgrim01Participant]

Hi Susan,

I did 4 cycles of CDT before going onto my SCT. The main symptoms I had from CDT was feeling tired and listless. This did include light headedness but I discovered that this was because I was not sleeping enough; as a result I started to take naps when my body told me I needed to and I found that this helped. I also found that my ankles would swell, but this was temporary and that my appetite and digestion were affected. Also certain days were worse than others, most noticeably following the C part of the treatment – I would make sure that I was not committing to too much immediately following these days.

In the first cycle we discovered that I was allergic to Septrin, so this was stopped which I also believe had a beneficial effect on how I felt.

Hope that this helps and good luck.

Regards,

Tim

[jeb77Participant]

hi Vicki and Colin
i was on the same revlimid, dexamethasone and cyclophosmahide as Colin for 4 cycles,its finished now,i have been offered the stem cell transplant but i cant make up my mind to have it or not,if i do i will have to have a 10 day course of injections called "cyclo priming" to boost up my stem cells for the stem cell transplant,its the fear of the unknown,i have read that the side effects of the SCT is bad including hair loss,sickness,mouth ulcers etc etc,i am not sure about the benefits as well,what made your mind up to have the sct and what was your side effects of the treatment,would appreciate your views

JEB77

[Author]

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