[daisychainParticipant]

Hi I'm interested in finding out if anyone Has started on pomalidomide (pomalyst)? I'm interested to find out how your are coping with the treatment?

I'm under professor gareth Morgan at the marsden and my treatment regime is 40mg pomalyst daily for 21 days, steroids methyl prednisolone 10 x 100mg days 1 8 15 22 and cyclophosphomide days 1 8 22 with top up gcsf if I become neutropenic (nutrofils than 1.00)

I'm also interested in finding out if you are / have taken curcumin vitamins in the past and if you have / are following the budwig diet.

Just in case your wondering I've had myeloma for nearly 7 years now had a couple of sct various treatments and also under the royal free research centre for amyloid Because i had a plasmacytoma in my skull which had amyloid deposits.

Many thanks dawn

[VickiParticipant]

Hi dawn

Sorry cant help you with your questions but just wanted to wish you all the best with this next phase of treatment.

Vicki and Colin xx

[daisychainParticipant]

That's really nice of you thanks Vikki and Colin

Best wishes dawn xx

[PerkymiteParticipant]

Once again Dawn just a Hi and to wish you the best of luck with your treatment.

There are a few medicine techys on the site so with luck someone might be able to help you.

kindest regards – vasbyte

David

[eveParticipant]

Hi Dawn

Well it looks if you are a front runner here,I can only think of one person on the forum who might be up there with you is Andy,I think they have thrown everything at him.

I was interested in the fact that you took curcumin for the years in between remission,,never heard of the budwig diet,but the curcumin. Seemed doable. I find it very hard to get my husband interested in most foods that might help his situation,but I do feel there should be more research in to foods.

My own view on is the younger you are the longer it takes to break your immune system,so by using supplements,you are helping to maintain your immune system,in my husbands case,although use to be very healthy at the age of 68 and treatments not halting the Myeloma for any length of time,his immune system is slowly breaking down.

Dawn you are doing very well,amazing so,I hope the next regime helps,would like to hear more about the budwig diet,although at the present time,I just want my husband to eat.!! love Eve

[MothasParticipant]

Dawn that's very interesting, are you on a trial, as far as I was aware NICE hasn't given the go-ahead for this treatment yet.

[DaiCroParticipant]

Hi Dawn,

I was/am a great advocate of Pomalidomide/Pomalyst and I am greatly surprised to see someone in the UK already reaping its benefits. I can only surmise that you are part of a very small trial as Pomalyst's other breakthrough drug Kyprolis, was licensed by the American Food & Drugs Agency (FDA) last July and is only now going through the trials set by its European equivalent.

Pomalyst was only licensed by the FDA in January this year… so I don't expect full trials of Pomalyst in the UK until much later this year. (As part of the European arm of testing (you would expect that the full force of American testing and the strict and very thorough approval of its FDA to be enough for us… but it isn't). 🙁

The last new Myeloma drug before Pomalyst and Kyprolis was Revlimid in 1996… so these new drugs are extremely important to our generation and those that follow. 😎

Count yourself treble blessed and please keep us informed of you progress. 🙂

I wish you every success. 🙂

Dai.

[eveParticipant]

Hi Dai

Is that part of the MUK5 trials???

If it is I would be interested,to know about it,Slims not be eligible as they have no way to monitor Myeloma,plus Ellen posted that there will be no compassionate way along side trials.
Company stated that it would have to be paid for!! plus it has not gone regional yet.
Dawn, Marsden is London,but I noticed you said you moved for treatment,understandable as the Royal free is the only one that deals with Amyloid. If this is the case,do you find,you have more choice of treatment because of it.The reason I am asking,is lack of choice being regional,my husband has had CDT CDV SCT now CDR all within the space of 2 1/2 years and will be having a BMB every 2 months,as only way to track Myeloma.Eve

[daisychainParticipant]

Thank you xxx

[daisychainParticipant]

Thank you David I'm off to see prof Gareth Morgan marsden tomorrow

Just found out results after 1 cycle pomalidomide with dex – not positive free light chains still increasing!! This cycle has changed to pomalidomide cyclophosmide and mythl pred – I'm hoping this combi will start to work…..

Best wishes

Dawn x

[daisychainParticipant]

Hiya no not on a trial paying for bupa got it privately arranged by Gareth Morgan marsden

[daisychainParticipant]

Hi Dai

Thank you for your very positive message however

I'm off to see prof Gareth Morgan marsden tomorrow

Just found out results after 1 cycle pomalidomide with dex – not positive free light chains still increasing!! 2nd cycle has changed to pomalidomide cyclophosmide and mythl pred – I'm hoping this combi will start to work…..

Best wishes

Dawn x
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[daisychainParticipant]

Hi eve

I moved from a district hospital in Basingstoke I am being treated t the marsden however because I had a tumour with amyloid I am also monitored by the typically on an annual basis.

No ive nit got it through a trial I'm paying for the drug trough bupa organised by prof Gareth Morgan.

I moved from a district to marsden because I believe I was outgrowing their expertise alo they said they had run out of treatment options.

I have become refractory to all the current drugs available (and believe me I've had a lt including 2 scts) and am a little worried to say the least that pomalidomide hasn't started to work its magic yet!!!!

My mm is monitored through the free light chain test – I'm non-secretorynI have kappa light chain mm

Best wishes to u and Slim

Dawn x

[daisychainParticipant]

Thanks David regards dawn x

[daisychainParticipant]

Hi eve thanks for your positive message it relly does help to keep me focused and recognise how far I have one especially emotionally!!!

To be honest until recently I really didn't explore take much interest in my diet/exercise research around anti cancer foods etc
And just relied on the experts to do their stuff and pump me with all that lovely!! Anti mm treatments

However, now having become refractory to all current treatments
I'm now feeling a bit like a sitting duck and want to explore ways in which I can help myself ie my diet exercise etc i haven't tried the budwig's diet yet but have adapted my diet

based on anti-inflammatory foods, decreasing foods containing high omega 6 increasing omega 3, moved to goats milk, reduced dairy foods, no processed foods, no red meats. Increase green tea, dark chocolate!!!,

I recently read a book by David Servan-Schreiber where it supports a lot of the things I've heard read over the years in relation to our diet, stress and exercise to fight cancer!!!

I just wasn't in the right frame of mind then to seriously consider the information. Maybe your husband is in the same mind set as I was its hard enough trying to deal with the treatment and knowing their is no cure!
– maybe you could try introducing / removing foods etc gradually into your lifestyle

Good luck

Dawn x

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