[pb42Participant]

Hi Jane,

My paraprotein drop was short lived! Blood test in September showed 43 then in October (at request of consultant) was 63!!!! The coc protocol Is not enough and this is clearly mentioned by Jane mcLelland that wrote the book I mentioned earlier but thought I would stick with this/supps/diet and see how it goes. I have since added dipyradamarole (prescription from Clinic 158 in Glasgow) and a few other things. Statin/dipy combo is supposed to be good for myeloma. My consultant has since wrote to me to possible discuss treatment when I have my next appointment, next month. I don’t want too as only finished chemo for breast cancer in May and had a month of radiotherapy all of June. I am going to get my blood done again before I decide on proceeding with treatment.

[pb42Participant]

Apologies, ‘off label’ just means meds taken not for their intended purpose. I use a private clinic, ‘Care Oncology Clinic’ (COC) and take atorvastatin, mebendazole, doxycycline and metformin which are know to target cancer stem cells. I believe you need to try and bock the metabolic pathways of myeloma, or any cancer, and I was diagnosed with myeloma two months after breast cancer so did lots of reading. Jane mcLellands, How to Starve Cancer’ is very informative especially about ‘off label’ (which are cheap drugs), supplements and the importance of diet.

[pb42Participant]

I haven’t had an answer to above but have more info re other blood results. Diagnosed Dec ’18 pp 37 (but since found out 39xmas eve pp 41, Jan 28th 34, may pp 24. My question is, does pp normally drop without treatment?

[pb42Participant]

Hi Paula, Thank you for reply. Sorry to hear about two diagnosis in space of a month. I’m sure we both know one is enough! I hope all goes well with stem cell treatment. I jut wished all tests were out of the way and things would settle down but think as I’m due to start chemo very shortly think ‘normality’ a while off yet.

[pb42Participant]

Susan,

Thank you for reply. I have to say a part of it made me laugh! Yeh, when first diagnosed and you start reading up and initially not knowing much else the internet can make it sound depressing. It’s good to know breakthroughs are happening. Your reply much appreciated and good to hear you back at work after treatment.

[pb42Participant]

Solly,

Thank you for reply. I find it’s easier said than done to stay positive. When I was diagnosed with breast cancer last October I said ‘ok’ when they told me. For some strange reason I didn’t have a meltdown and didn’t keep me awake at night, well awaiting mri results to see if spread was a bit worrying, but this myeloma did knock me sideways. I feel better about knowing xray quite normal so thanks again for replying and hope all goes well with your medical regime

[pb42Participant]

Shaun, Thank you for reply. Hope your treatment is going ok and your up and coming stem cell transplant too.

I know what you mean about reading and agree on both websites you mention being the best to stick with.

Your reply much appreciated

[pb42Participant]

Thank you Deirdre, be good to keep in touch as does make a huge difference sharing and taking with others. Free light chains, have read about this but another thing that doesn’t mean much at the moment to me. Never had chance to speak to nurse yet and will bombard at first chance. I don’t find googling about blood results helpful as still complicated! So lots of factors other than protein in blood? May I ask what your protein level was at diagnosis? I’ve started taking curcumin as read great things about it so worth a try but currently only having 0.5g per day and have read 8g could/should be taken. Thank you for replies.

[pb42Participant]

I think that last reply confusing at beginning! I stopped hrt because of bc diagnosis. Symptoms gradually returning.

[pb42Participant]

Thank you for quick reply. I’d never heard of when received letter and when googled felt sick! Like you I feel finding out more does make you feel better but does seem very complex. Because I feel fine I’m hoping that things are internally as assume I would have symptoms? I was taking hrt for two years as had horrendous symptoms, sweats and achey joints which disappeared but have gradually returned (not so much aches just sweats, not as bad as before) but obviously stopped because of bc diagnosis. Now I fret any sensation or tingles is myeloma and not menopausal which I’m convinced it is. Feel as if too much going on at the moment. I have lots of appointments going on this month so hopefully by end may know more. Do you take any supplements? Sorry for long reply!

[pb42Participant]

Thank you for reply Deirdre. I was diagnosed with breast cancer in October and had lumpectomy in Nov and have appointment today to find out treatment plan but this has thrown a spanner in the works! One needs treatment and one doesn’t (yet)! How did you feel after diagnosis and how are you now if you don’t mind me asking?

[pb42Participant]

I definitely think you have right attitude and your healthy eating can only be helping. I know I will more so stick to real foods. I’m still getting my head around blood results and what they mean but my protein shows 37. I did have about five separate lots of blood taken on Christmas Eve so assuming that will be looking at things more closely? I was spying at doctors screen with results on and there was three things highlighted in red. One protein, one cholesterol and not sure of other one.

[pb42Participant]

Thanks Mick,

Can I ask when first diagnosed did you need treatment straight away? I do not expect to have any as no symptoms but I was expected to have chemo (possibly) and definitely radiotherapy after having lumpectomy. Not sure how much my myeloma diagnosis will impact on this.

[pb42Participant]

Mickack,

Thank you for reply. You are eating healthy and at times like this I think we become more aware of what we put into our mouths. Good you feeling good too. For over a year I have tried to keep to low carb/high fat diet so keep away from bread/spuds/rice and processed food. I have to say I think I ate too much meat, although ate lots of mackerel and kippers, and not enough veg. My veg tended to be spinach and more spinach and mushrooms. Now I will up veg. I have just been recently diagnosed so awaiting result of mri and still need to do my bone marrow biopsy. In first post I wondered about difference between smouldering and asymptomatic myeloma. The is there a difference do you know?

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