[MarybParticipant]

I am currently under Professor Cavanagh at Barts London, he has suggested that I take part in the Padimac Trial, as I am about to start treatment shortly. Does anyone have any experience of this.

Mary B

[eveParticipant]

Hi Mary

Welcome ,I cannot help you but I know some men who can. Lol

You need young Tom or our Andy,there the ones to give you advice,if they miss your posting let me know and we can contact them .Eve

[meganjaneParticipant]

Hi Mary,

My husband Phil participated in the PADIMAC trial at Bart's under Professor Cavenagh. Phil was diagnosed in May 2012 and started on PADIMAC shortly after. Phil did not manage to delay his SCT as his PP only dropped by 87% instead of the 90% required but I am happy to say he now only has a trace of something – we haven't quite worked out what yet:-) – and is considered to be in Near Complete Remission or Complete Remission depending on who you ask!

We know of two people on PADIMAC who reached Complete Remisssion before SCT and so have harvested their cells for use later but have not yet had the transplant.

If you have any specific questions or would like more info just let me know. You can also click on my picture to read more details of Phil's treatment.

Megan

[MothasParticipant]

I'm not on PADIMAC but I've received the same treatment as those that are on it at UCLH.

You start with an induction chemo treatment of Velcade, Dex, Adriamycin and then go on to a stem cell transplant which I've just had.

It's supposed to be a state of the art treatment but like everything myeloma related it works better for some than others.

Let me know if you have any specific questions.

Tom

[BillyParticipant]

my first treatment was Padimac Trial under prof Cavanagh at St Barts .
I was booked to have 6 cycles of treatment over a period of a few months .
after the second cycle had a retuine blood test and found no trace of the cancer to be found .
yes it made me feel very tired and drowsy when i was given chemo but the results were great .the dextamatazone helps with pain and fights the fatigue for the first few days of cycle .my protien levels rose again after 6 mths so i went for stem cell transplant but as an initial treatment i would recommend having a go and prof Cavanagh in a good one .
Results of treatment differ for each person but good luck whatervr you do .

Regards Billy

[mhnevillParticipant]

Hi Mary

I don't know anything about PADIMAC, but wanted to welcome you to the Site. Does this mean the plan is not to have an early SCT if all goes well with treatment?

All best wishes.

Mavis

[MothasParticipant]

No you have your rounds of Velcade, Dex and Adriamycin, then you go on to a transplant.
The PADIMAC trial is about seeing how effect this particular combo is in conjunction with a transplant.

[ellenModerator]

Hello all

I’d just like to clear up a few misconceptions about the PADIMAC trial.

The trial is looking at delaying stem cell transplant in those who respond well to PAD (Velcade, adriamycin and dexamethasone). This means that for patients who have gone into remission after treatment with PAD, do not have a stem cell transplant. For those who do not achieve a complete response, they will go straight on to have a stem cell transplant.

We know from previous studies that patients who achieve a good response to their first treatment can be in remission for a long time, whether or not they have a stem cell transplant and in most cases, it may be better to have a transplant when they relapse. The aim of the PADIMAC trial is to see if patients who have had a good response to PAD can safely delay having a transplant, making it an option at relapse.

I hope this clarifies things but please do call the Myeloma Infoline on 0800 980 3332 if there are any questions.

With best wishes

Ellen

[Suerose123Participant]

Hi Megan

My husband has just started on the PADIMAC trial, it is all really daunting for us at the moment but reading your forum message really did help. My husband was also diagnosed by Whipps Cross.
I just feel slightly better knowing that there are other people we can ask advise from who have been through the same thing.

Sue

[meganjaneParticipant]

Hi Sue,

Sorry to have to welcome you and your husband to this forum but it is a great place to ask questions and get support.

Will your husband be treated at Bart's? It is very daunting at the start but please feel free to ask me any questions you like about PADIMAC, about Bart's or anything else. It is now 11 months since Phil had his SCT and he is still in remission and doing well, it is a roller coaster but the journey is doable. You can post on the forum or send me a message directly by clicking on my picture and you will see an option on the right to send a private message.

The PADIMAC trial is a good option at diagnosis as it gives you some options depending on the response. We didn't really know anything about anything when Phil agreed to do it but with all we know now Phil is happy it was the route he took.

Megan

[Suerose123Participant]

Hi Megan

Thank you for coming back so quickly, yes he is under Barts we are on our second day, 4 days this week, 2 next then a week free. We will probably have a million things to ask as we go along and it has been really comforting to know someone is out there, you sometimes feel a bit of a burdon if you don't understand something the first time although everyone at Barts has been absolutely brilliant it is hard trying to take everything in to start. The one thing though that really struck me was so many friendly and happy patients all sitting in the little waiting room waiting for their treatment it was very endearing.

I am so glad that your husband is doing so well.

Kind regards

Sue

[meganjaneParticipant]

Hi Sue,

That is one of the drawbacks of velcade, so many visits to the hospital! I took comfort knowing that it meant Phil was being monitored very regularly. The other thing about velcade is it may cause peripheral neuropathy which is nerve damage in the hands and feet. At the start of each cycle going forward your husband will be given a form to fill in to track any signs of peripheral neuropathy. Always tell the nurses immediately if your husband develops and tingling, numbness or burning sensations in his hands or feet. Neuropathy can disappear after treatment (and some people never get it) but for Phil his feet still have neuropathy now despite reducing the last two doses of velcade. Phil is able to cope with the neuropathy without taking any drugs but if your husband can avoid it he should. Just tell the nurses/consultant about it if it appears and there is then the possibility to reduce the velcade or take some medication that may help reduce the effects it produces. Hopefully you won't have any problems with this but it is better to be forewarned 🙂

Phil did not really suffer with any other side effects although he did get tired at times. I hope your journey is a smooth one.

Megan

[AlexBParticipant]

I’m on PADIMAC
I did 6 cycles of PAD. I had a bit of a wobble in the second one (liver function, not sure why) and had to stop for a bit. But I was able to carry on full doses of velcade and dex, but attenuated dox.
It got me into PR.
I had an SCT in March and am currently in VGPR.
For me it was a no brainer in the end – velcade has better (average) results than thalidomide. I have high risk cytogenetics, for which thalidomide is thought less effective, though I didn’t know that when I made the decision.
Yes it meant a lot of trips to the hospital, but I was in such a mess – mentally and physically, I’m not sure how much that made a difference. Even on days I wasn’t being treated I’d end up in hospital, like as not.
It does mean they pay more attention, do more tests, bring you in for more consultations. That can be annoying, but it’s probably good for your health

[AlexBParticipant]

I got no neuropathy. I got wicked abdominal pain from the velcade. But then, I was in plenty of pain anyway. I don’t know if the side effects were better or worse than CTD. They were absolutely nothing compared to what came next when I had the high dose melphalan for my SCT.

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