[MothasParticipant]

I'm probably being a bit premature but would appreciate some input 🙂

I'm due an SCT in April but from what I can make out there are no treatments available for maintenance In the UK after this treatment, in contrast for example to the US.

There are a couple of things I'm considering, one is to try to get on a maintenance trial and I'm also seriously considering investigating If it's possible to go for private zometa therapy (if they stop mine post SCT).

Any insights gratefully received.

Tom

[MicheleParticipant]

Hi Tom
I had my SCT in February and even if given the choice would personally have not gone on any maintenance therapy.
I feel that my body has recovered well and my quality of life has been very good. I also feel that being (daily) drug-free now means that when a relapse does occur, my body will respond as positively as it did last time to treatment.

I've been on Zometa since June 2011 and have been told that they'll keep using it until it stops working.

However, as I said. This was my personal choice and everyone is different.
🙂

[MothasParticipant]

Thanks Michele, how often do you receive the Zometa? Also where are you based, I wonder if ongoing Zometa therapy is a post-code lottery?

[MicheleParticipant]

I go every 4-5 weeks in Poole Hospital. The care there is first class.

[MothasParticipant]

Thanks Michele there does appear to be a discrepancy as some people have it limited to a year or two post treatment.

[pollyParticipant]

Hi Tom

Just to add my input on Zometa

I get daily emails from the Myloma Beacon with the latest news from America and Europe I am also hooked up to Andrew Schorr Patient Power and on occasions he talks to Dr James Berenson a leading myeloma expert
some time ago I recall a conversation regarding Zometa and how long you should be on it if I remember right Dr Berenson believed two years max with a one year break due to the fact that while it is an excellent form of treatment it also has its own drawbacks as in strenthening the bones it can eventually make them brittal and so a break was needed as I have been on Zometa for over twelve months I will be discussing this with my own consultant nearer the time.

Food for thought hope this helps

Take care and stay well

Polly

[MothasParticipant]

Thanks Polly, I'll also check out Andrew Schorr Patient Power

[Pilgrim01Participant]

Hi Tom,

I have just finished SCT and am currently 12 weeks post treatment. There is definitely maintenance treatment available in the UK. I am on the Myeloma X1 trial and will be randomised to a maintenance programme of either no medication, Lenalidomide or Lanalidomide and Vorinostat. My understanding is that irrespective of the trial, all patients are considered for a maintenance programme that is best suited to them. My advice would be to double check with your consultant. If you want the inside track on the SCT I'd be happy to help.

Regards,

Tim

[tomParticipant]

Hi Tom

Well I had my transplant in December 09 I hhad Zometa infusion every four weeks in Scunthorpe General and that lasted 2 years.

I am now Drug free and in remission would i want to go on a trial?? if I am in remission I see no reason to take more drugs that would possibly give me side effects.

I was well and truly pleased when I came off the zometa to be "Drug Free"

Tom "Onwards and Upwards"

[KeithH17Participant]

I've had 2 SCT's and 3 relapses inside 5 yrs and presently onto my 4th treatment. After my 1st transplant I asked about the possibility of maintenance therapy and was told that it depended on the remission that was achieved. If it was a complete response i.e. zero PP's in the blood as I was then MT was deemed to be superfluous. I was drug free for 2yrs 4 mths before I relapsed,although I did continue to take Bonefos and later Zometa which I still take now. I would agree with Tom that if your remission is complete then why take drugs but your Consultant will guide you on that. The SCT is great if it works and even then you just don't know how long you will get from it. My 2nd only lasted 7 months and this is an average for a 2nd SCT which hardly ever lasts as long as the first one and my 3rd treatment lasted even less only 5 months. I am looking out to go on a clinical trial but it's not easy getting on one.
When your options are limited then you'll try anything.

Best of luck Tom.

Keith.

[MothasParticipant]

Thanks Tim I would definately be interested in hearing more about your SCT

Tom

[MothasParticipant]

Keith and Tom thanks for sharing your thoughts and experiences.

Keith just to clarify you have continued to have zometa continuously since your first SCT?
It does appear in the states as though this is a standard maintenance treatment there.

Thanks again

Tom

[HelenParticipant]

Hello Tom
If you look in the patient services section of the site , in the bottom left corner is a section called clinical trial tracker which will tell you what is available now in the UK in the way of current trials in your geographical area, and Amelie has recently reopened a long discussion in the general section about trials, under the heading Johns second SCT, worth a read I think.
I am now 16 months post SCT and have been on Revlimid 25 mg both as induction treatment and maintenance as part of the Myeloma xi trial. I had a very slow recovery from the graft but am in complete remission, back to work full time and hope to be regaling you all to the point of boredom of my travel plans. It is very important that you find as much information as possible at this stage and that you make the right choices for yourself.
I would enquire about all NHS options before going down any 'private' route as this could be shockingly expensive, and sometimes once you start on the private path getting back into NHS can be a bit fragmentary. One thing I do think about this condition is that you need to be able to fully trust your medical advisors, so ask as many questions, write them down and ask again if necessary so that you fully understand what is going to happen.
Love Helen

[MothasParticipant]

Helen thanks that's really useful.

I'll assess where I am post SCT in conjunction with my specialist.

Tom

[KeithH17Participant]

Hi Tom
I would take notice of what Helen says with regards to private treatment,it's mega expensive and getting back onto NHS treatment can be difficult. As for Zometa I was originally on Bonefos after being diagnosed in Dec 2007 and then went onto Zometa March 2009 and have been on it ever since. It depends on your Consultant and mine said he prefers his patients to continue indefinitely as long as there are no problems with side effects. It is also believed that Zometa has anti cancer properties that help keep the disease at bay. As for future treatments I only hope they don't take too long to be licensed for use on the NHS. We were promised by the last Government as well as the present one that patients would be allowed treatments before they had been licensed by NICE if there was no other alternative but this is not happening so we just have to keep fighting.

Stay well.

Keith.

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