[Judd1Participant]

I am a newly diagnosed myeloma suffer, and I will be starting a Padimac trial as my treatment plan followed by a stem cell transplant.
I am under University College Hospital, MacMillians Cancer Center, London.I would like to know about what I can expect during this treatment, side effects etc from anyone who has done the trial. The treatment involves (Bortezomib, Adriamycin, Dexamethasone and Velcade)

This would really help put my mind at ease.

[HelenParticipant]

Hi again Judd, in the patient services link on this page, in the bottom left corner is the section on current Myeloma trials, which talks about what is available to patients. There are a few people who have done this trial, I am on myeloma xi trial so haven't experienced this one myself
Take care
Helen

[Judd1Participant]

Hi Helen,

Thank you for getting back to me. I hope your treatment goes well for you.

Best Wishes
Judy

[eveParticipant]

Hi Judd
How are things going,I see you did not get many reply,s I know Andy G went on them,plus another person.
I have bumped this up to the top.so if more people see it you might get some reply,s let us know how you get on .Eve

[BADGERParticipant]

Hi Judd
I dont know about the trails but I wish all the luck in the world with it and hope it gets you right soon
Love Jo x

[anndrysdParticipant]

I think I had this in 2009 before my 2nd SCT as part of the Myeloma X trial. The main problems were caused getting lines in to me for the adriamycin part. I had a pump for 4 days at the start of each cycle, but that was because my body really doesn't like lines. My Hickman line had to come out early on and then they used a PICC line and there was a certain controversy in the department as it was new to them. This resulted in me being kept in over 2 long weekends – 65 miles from home in winter- I won't go into my husband's dislocated finger after falling on ice in the hospital grounds… I got good results with the treatment though and had about 18 months remission out of the transplant, not too bad for a second one (2 1/2 years for the 1st one) – and I'm a bit older than you from your photo.

[HelenRParticipant]

Hi Judy,

I'm in the same boat! I am also on the PADIMAC trial, and I start my 3rd cycle tomorrow. I learnt today from blood and urine tests that even after 1 cycle it had great results for me… I know it's an individual disease but I hope that gives you some encouragement. I haven't had too many side effects – the dexamethasone (steroids) have been worst, particularly having 4 weeks in a row of 4 days at the start…. But now it's only 4 days every 21 so at least it's not so frequent.

I'm being treated at St George's in Tooting which has been excellent. I had a fairly traumatic start with 4 weeks in hospital during which I had pneumonia including a night in intensive care, a leg operation (40cm pin down my thigh bone to prevent fracture), plus of course the total shock of the diagnosis and starting chemo. I thought i just had a bad knee… And I'm only 33 so it's very unusual to have this at my age. I was stage 3b or whatever the most advanced stage is and have a lot of bone lesuons. I've now been home for nearly 5 weeks and getting steadily better and better.

It's late so I won't write more but do let me know any questions and I'll help if I can! I may well also introduce myself more to the forum and come back with questions myself. I've found it very useful so far, hi everyone!

Helen

[AlexBParticipant]

Hi Judy & Helen

I'm sitting staring at the forms trying to understand if PADIMAC is right for me (rather than just have CTD and then SCT). I think – am I right in understanding – that if the PADIMAC response is good then they won't want to proceed to SCT. Though whether one could opt out of the trial, and into SCT, some months on, I'm not sure.

What was your decision process? Are you glad you are in PADIMAC? I'm inclined to try it because I hear good things about Velcade, and I guess I think I'll get more supervision and so effectively better care. But then other people swear by the results of SCT.

Beginning to realise that every single aspect of this disease is shit – even to the level that you have to choose your own treatment, based on not enough information.

I'm 39 and in London too – so we have a few things in common

[HelenRParticipant]

Hi Alex,

In brief (writing late again!) yes I'm happy, for the two reasons you mention: velcade is supposedly more active treatment and this was a way to get it as front-line not just after relapse, and you get more monitoring. After my first cycle, tests showed I had zero in both blood and urine (I have bence-jones version so just have light chains in urine, they came down from 1270 to zero, can't remember what bloods were before). So it's working very very well for me, so far.

After the 4 cycles of chemo I'll have to find out more about my options – as I read it, you can leave the trial at any time. Perhaps ask your doctor about what if you want SCT? As things stand, assuming my bone marrow biopsy confirms a complete response or very good partial,, it's looking like I wouldn't go on to SCT but save that for a later date. I _think_ I'd be happy with that, getting back to normal life sooner, avoiding side effects and long recovery and possible unpleasantness of SCt, but will want to find out a lot more at the time. One step at a time! Will happily update you with what I find out and choose to do.

For what it's worth, then miment of making the decision about the trial was my absolute low moment – straight out of general anaesthetic from leg op on a Monday night, little sleep as high on drugst, then was told all about myeloma and awful statistics and treatment Tuesday afternoon – and the straw that broke the xamel's back was being told i had to decide about PADIMAC by friday to start treatment on monday, spent all night googling not sleeping….. From finding some Good websites i realised I wanted velcade but after so little sleep and such bad news I was just a wreck physically and psychologically on the Wednesday. Had a massive cry for the first time, think till then I thought it was all a dream which would end … Cathartic actually. But I feel your pain and stress and confusion. Hang on in there!

So for me I felt the decison was a no-brainer but who knows for you? Don't take my word for it. Others on here may know more about CDT, I didn't research that at all. But I think 'novel' therapies like velcade v exciting. As a friend who works in Health said, it's not like getting a better bike, it's like a motorbike, works a whole different way. Also family member's friend is expert in myeloma (ex pharma industry) and my parents were in contact with her in those three days and she confirmed it was a good idea. I was unable to handle hearing the detail at the time but can ask my mum now if you like.

I found this clear description online: http://cancerhelp.cancerresearchuk.org/trials/a-trial-looking-at-bortezomib-adriamycin-dexamethasone-as-first-treatment-for-myeloma-padimac

Good luck, keep in touch! And why are all us young'uns getting this damn thing eh??

Helen

[eveParticipant]

Hi Alex

First may I say welcome ,its the old saying no one wants to be here,but this site is very informative,:-S
Second know very little about padimac trials except its not in SE Kent and if my husband wanted to go on a trial like this it would be constant visits to London.saying that if needed we would.:-(

My husband is over 18 months down the line with Myeloma ia on Myeloma X1 trials and had CTD for 6 cycles it did not work,his Myeloma went up to 80% in bones,had 6 Cycles of VELCADE and it knocked it down to 6%,he went on to have SCT and is now 2 months post SCT,not in the best of health but we are waiting for BMB to see if it,s worked and hoping he will improve over time.

Yes this disease is S–t.but at the end of the day it is treatable some people get many years and it is increasing, I honestly believe your attitude of mind will help you,we have watched people on here give in from the start,other people still going on many years later it,s your choice.

I do not often tell people to go to American Sites as some are frightening but Myeloma Beacon have a survives site read some of there stories 20 years 25 years,it gives you hope for the future:-D .

As for my husbands he was diagnosed late,but he is alive and enjoying life,not the quality we had before,just different. Eve

[eveParticipant]

Hi Helen
Who has not introduced her self,my name is Eve and I am a carer,have to say MY GOD,33 and pneumonia in itu leg op,and you thought you had a bad knee,you could laugh if it was not so serious.

One good thing being based in London gives you lots of scope for trials plus the best treatment that is available,
I have just come on to say welcome and I wish you well,found you when i answered Keith,s post,Good luck on your journey.Eve

[HelenRParticipant]

Thanks Eve. In fact I went in for my knee check-up on my 33rd birthday… But well, c'est la vie!
I'll stick a photo up soon, just doesn't work from my iPad and need to get laptop out … Maybe tomorrow!
Helen

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