[daisychainParticipant]

http://agelessbyglynisbarber.com/ageless-articles/20-things-you-should-consi
der-in-your-anti-cancer-programme/?doing_wp_cron=1369468929.4264290332794189
453125

Hi eve you may want to take a look at the article above – I'm trying to adopt my diet etc to the principles given in the article

Ps re curcumin I've been told by the marsden not to take it because I'm on aspirin also there is no data on the effect curcumin has on pomalyst – I wish I could take it as I would feel like I'm in control of something especially as ver the years there has been more and more communications re curcumin as an anti cancer "tool"

Regards

Dawn x

[daisychainParticipant]

http://www.budwigcenter.com/anti-cancer-diet.php

Cancer research UK has also written an article on the budwig's diet

http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/what-is-the-budwig-diet

Hope this help

Dawn xxx

[TinaParticipant]

Hi Dawn,

My husband Patrick had two courses of Pomalidomide back in 2011 after having a very good year on Bendamustine. As far as I can remember he suffered very little side effects. Unfortunately he was too far down the Myeloma road for it too have a positive effect.

Good luck with the treatment and best wishes

Tina

[eveParticipant]

Hi Dawn

Slim ,is the same has IgG bence jones kappa lightchains,and some were along the line now showing,IgM bands,all this I have had to find out myself from paper work,I ask questions,get told its complicated,and told not to worry:'-(

The SE work with Kings,I have toyed with the idea,of asking a second opinion,and going to Kings,the feeling is we are just going through the motions,Slim cannot get on trials as no way to monitor Myeloma,Bloods Kappa lightchains,do not show true reading,so BMB every 2 months.

Slim,s main problem is treatment,the CDT pneumonia,caused problems with his lungs,history of thrombosis in family,plus kidney damage,so not happy they put him on Revlimid,but was told in a polite way,no choice.
Even his bloods readings are not right,the problem is platelets have never risen to dizzy heights,at the moment 56 ,going down weekly,My GP rang last night and asked who was monitoring them,the answer is me!!!she trust me,not due at hospital until 5 for bloods,8 for Zometa and 2nd cycle of Rev.

Slim is 68 but use to be very fit,and I know the thinking,well he has got to 68,but does not matter what age you are,everyone wants to live.

I did some reading on curcumin,there was a young girl in the states refused to go down the chemo road,found a oncologist who agreed to monitor her,similar diet basic alkaline ,curcumin,plus different vitamins,slowed Myeloma down,but did not stop it.

No one has used the word refractory,but not holding much hope out with Rev,when Slim was on CDT 6 cycles it increased to 80 % bone marrow.SCT after 100 day BMB,he had complete remission,l asked for another BMB at 6 months,it was back at 10%last BMB 30% should have another BMB in 5 weeks,not holding my breath.In the mean time the Rev is knocking his immune system plus kidney,s are showing a rise.

Infections are the biggest worry,at this stage of the game,I am tempted to ask for anti biotics along side chemo,he has clexane as normal part of treatment.

Dawn you do not say how,well you are,or what side effects from treatment,I can only imagine,the effect of a tumour of skull,Slim had lesions on skull,the fact you got 4 years must be in your favour,at least for more remission,plus getting treatment that is new to this country.:-) I will be watching this space,I do hope you will let us know how it is going.Eve

[janwParticipant]

Hi Dawn

Following my SCT in August 2010, I've been taking daily supplements of curcumin mainly to help fight off any infections and to try to help boost my immune system as my neutrophils have consistently remained low since my diagnosis with light chain myeloma at around 1.3 – 1.5. I have also read on various cancer sites/myeloma blogs that curcumin can be effective against light chain myeloma, which is another reason I am trying the product.

My light chains have slowly increased over the past three years, but have remained quite stable for the past year at around 600. However, I've been very fortunate with hardly any infections since my SCT with only one cold virus and shingles. At the time I developed shingles, I had changed my supplier of curcumin for a cheaper source from America. Unfortunately,I realised after a couple of months of taking the supplements from America that they were fake with non of the usual smell or yellow discolouring of the skin when you handled the tablets. Whether it was a coincidence that I developed shingles at the same time as taking the fake curcumin, I don't really know. At the time of my shingles, my kappa light chains increased by 200 and never fell back again to their previous low levels. My consultant is quite happy for me to take curcumin, but he doesn't believe their is sufficient evidence to indicate this supplement can help with myeloma.

I am impressed with your Bupa cover to be able to fund Pomalyst as part of your current course of treatment, especially with it not being available in the UK apart from trial situations. I hope changing the combination of your drugs will begin to effectively reduce your light chains. What level are they at the moment? My first line of CDT treatment and SCT was financed via my husband's medical insurance via his workplace. We are also covered by Bupa, but they would not fund certain cancer drugs for longer than six months. At the time, this included thalidomide and zometa infustions. In order to continue on Zometa for longer than six months, I changed my treatment to the NHS which has provided an excellent team work approach to my myeloma.

I would like to find a supplement which would help raise my neutrophils levels. My GP has suggested a general vitamin B complex tablet, as well as a B12 supplement which I've started a couple of months ago. As yet, I haven't changed my usual food intake, but I'll certainly have a look at the Budwig diet.

Good luck with your treatment.

Jan x

[Author]

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