[adminKeymaster]

Hi everyone

I am 42 and was recently diagnosed with nephrotic syndrome, amyloidosis and myeloma in that order.

I originally visited my GP due to swelling in ankles and calves. A few visits to the nephrology clinic at my local hospital confirmed nephrotic syndrome and a subsequent kidney biopsy confirmed amyloid in my kidneys. Subsequent Bone marrow biopsy confirmed MM. I've been told by my heaematologist that the myleoma is in "early stages" and otherwise, and I am fit and well. It's all been a bit of a shock.

I am on day 15 of my first 4 weekly cycle of CTD and so far, fingers crossed, not too many problems.

I wanted to ask if anyone else is aware of a possible connection between myeloma and gluten intolerance/coeliac disease? There hasn't been anything scientifically proven, but on googling, people seem to be making a connection. Throughout my tests, I was found to be "profoundly" deficient in vitamin B12, which can be a symptom of coeliac, but I haven't been tested. I am having to have B12 injections. I have always had what I assumed to be IBS. I figure that I've got nothing to lose and went gluten free when I started chemo.

Best wishes to you all!

Tracey x

PS – I'll get around to posting a photo soon!

[eveParticipant]

Hi Tracy

My partner Slim is on 21 day of ctd.He was on B12 vitamins for awhile.I cannot help with gluten intolerance.Slim was very healthy before all this.I think when you are first told about myeloma apart from the shock you start looking for reasons.Everbody will tell you this no one seems to know why or where it comes from,we are all different and the treatment reacts different for ever one on it.This is why this site helps.

It might be worth going into related illnesses you might find answers.

Good luck with your seach and keep us informed how you get on with gluten free,at the moment I just want Slim to eat as he lost 3 stone in weight and need to build him up.his taste buds are not working he now hates red wine!!!lol

eve

[tomParticipant]

Hi Tracey

May I be the first to welcome you to this great group, I know its one that we didn't want to join 🙁

I also started on CTD then moved on to my Stem Cell Transplant, now 15 months post sct and doing bloomin good.

Good Luck on your treatment.

Tom "Onwards and Upwards" xxx

[MinParticipant]

Hi Tracy,
Welcome to the MM club, lots of people on here with lots of info or advise if you should need it.
I can well understand your shock, no one is able to receive that kind of diagnosis and not have a million questions. As they have no idea what causes mm you can stop beating yourself up that its something you may have been able to prevent. There is a lot of info out there and most if it is scary. plus its out of date. Myeloma UK is smack bang up to date with current information, with a smattering of help from some uk leukaemia sites and Macmillan.
My Husband was diagnosed with nephrotic syndrome 4 months before being diagnosed with MM, he has bone damage in his spine due to the high doses of steroids for nephrotic syndrome. Also undoubtably the MM damage too
In his case the kidneys often make a recovery whenever he gets his doses of zometa. As for the amloidosis I have a good friend who's husband had it and mm and he is in a good remission now.
I am really interested in your ibs /gluten intolerance as Peter has ibs of a sort but has had it for over 30years and MM was not associated with it. He always called it his dicky tummy. But we are fortunately all different.
B12 deficiency I imagine is a typical MM trait as many mm sufferers have anaemia due to the very nature of the condition. I had B12 deficiency causing pernicious anaemia in my youth and it was due to very poor diet( I lived on egg and chips 7 days a week) and mars bars in between!.
Has the gluten free made a difference? or is it the Thalidomide? Peter was bunged up on thalidomide and has never been that way in his life, now on Revlamid which is same manufacturer and it has the exact opposite effect. I am inclined to give the gluten free a go though if it helps him. Let us know how you respond to it.
and good luck with your treatment regime
Min

[brochoParticipant]

Hi Tracy welcome to our world ! I do agree with Min about the information found on some sites , I know on this site the info is relevant and accurate.Have you checked the under 50s as well , there is also another forum for people under 5o which if you are interested there is a link for either Phil or Scotty if you e-mail them they can invite you to joim. Sorry I cant add anything to the gluten discussion but I am interested to see what others think Good luck with your CTD and hopefully you will get your sct soon and a very long remission afterwards Take care Bridget

[tinkerbellParticipant]

Hi Tracy,
I'm now three years since my diagnosis and the six months before were spent having numerous blood tests which only showed up a B12 deficency for which I was prescribed injections. There is a family history of being B12 deficent so this did seem like a more likely cause of my tiredness as all the other blood results were normal. It's difficult to accept that there is no one cause for myeloma and just one of the many parts which make it hard to get your head around the whole thing. Good luck with the CTD. x

[DebsParticipant]

Hi Tracey,
Welcome to the site and hope that it helps you as much as it has helped me!
Can't say much about CTD as am on a different drugs regime, but just wanted to mention (in case you don't know) that you can't be tested for coeliac's if you have given it up….they need you to have been on it fairly constantly I think. This is said with my niece having it, and a good friend having recently been tested for it. Appreciate you might not want to be tested for it at the moment but just thought I'd mention it in case you want to talk it through with your doctor. If not, have some good gluten free tips/ recipes if you're into cooking!

Good luck with the treatment!
Debs x

[BADGERParticipant]

Hello Tracey

So sorry you had to join this site but this is the place where you will get help and support also you can phone the great people at Myeloma uk they are so kind and know so much about the condition you just have to give them a call.I had CDT which worked well for me I managed to tolerate a 100mgs of Thalidomide for a year after CDT I am not on any meds at the moment for Myeloma but I had kidney damage which has not resolved its self so take meds for that. Really good luck for your treatment I am sure it will be successful.

Kind Regards Jo 😎

[adminKeymaster]

Thank you all so much for your kind and positive comments. And thanks for the useful advice – particularly about not going on scary websites! Will let you know how the gluten free diet goes and will speak to you more in the coming weeks and months, no doubt. Thanks again everyone!

Traceyx

[sandraParticipant]

Hi Tracey just to add a welcome to the gang , I am 3 years post diagnosis , was 43 when diagnosed and had a very successful CTD and stem cell transplant process 2008 . Loads of good advice and guidance on here
Hope you are feeling ok on CTD Best wishes
Sandra xx

[clarabellParticipant]

Hi Tracey,

My Dad is on his 2nd lot of CTD for MM, he doesn't have any intolerences so I can't help with your connection there however my Dad was diagnosed with amyloidosis in January and MM in February so I can understand somewhat the minefield you have to go through and I send my best wishes to you on your journey.

Can I ask if you have been refered to the Royal Free in London for your amyloidosis? We went there in January and they are fantastic, we are going again mid May. I haven't found anyone on this site yet that has both these conditions and what impact they have on each other and how they are treated in relation to one another. I do know that my Dad will have to attend the Royal Free every 6 months ongoing but as he is part of a trial we are going back after 3 months. This forum is excellent for support along the way, best wishes Clara xx

[GillParticipant]

Hi Tracey So sorry you had to join us but a huge welcome Hope all goes well for you Gill

[adminKeymaster]

Hi Clara, Yes, Amyloidosis and Myleoma is pretty rare! I certainly haven't found anyone else with my condition, particularly of my age – it's very rare for someone of 42. Do you mind me asking how old your dad is? I'm guessing not that old if he is still working. I was at the Royal Free in the middle of February and started CTD on 3 March. I'm a few days into my second cycle. My biggest problem is the comedown from the dex during the days I come off it – my whole body aches and I feel pretty down for a few days. On top of that, I've suffered from some pretty heavy duty fluid retention, which has reached my abdomen and hips so that's pretty uncomfortable. However, on a good day, I feel pretty good and not at all unwell. Where in the body is your Dad's amyloid? Mine is in my kidneys, liver and spleen. My kidney and liver functions are currently normal, but I do have nephrotic syndrome and as a result I am on salt and fluid restrictions, which are pretty tough. I have no idea what my prognosis is – I was told by the Royal Free that the 3 month stage is crucial in making any kind of predictions. In terms of the myeloma, my haematologist believes I've had it for just a 'few months'. On the basis that I started having symptoms about a year ago with intermittent ankle swelling as a result of the kidney issue, I can only assume that the original underlying condition was MGUS or SMM and it recently progressed. My bone marrow biopsy shows a range of 20-30% plasma cells. I apparently have IGA type myeloma with pre treatment paraprotein levels of 6 and lambda free light chains of 152. Not massively high numbers, but obviously enough to kick start the Amyloidosis. A stem cell transplant was only briefly mentioned at the Royal Free and I was told I was 'a long way off a SCT'. I didn't question this at the time as there was so much to take in, but I don't know if this a good thing or bad thing. I too am on the Alchemy study and will go back in a couple of months. The plan for me is that they are looking for a 90% reduction in free light chains after 3 cycles. If this isn't achieved, then I will be moving onto velcade. At my end of cycle check up last week, my IGA levels have already fallen from 6.8 to 3.5, which was seen as very positive, but I am waiting to see if this has had an effect on the free light chain reading – I sent my blood sample off to the Royal Free last Monday, but haven't yet had any results back – has your dad had any results back yet?

Wishing you and you dad well and sending lots of positive thoughts your way! 🙂

Tracey x

[adminKeymaster]

Welcome Tracey. Good luck – you'll find lots of good information and support on the site. We're all in a similar boat, but everyone's situation is different. Good Luck. Preserve your health as much as you can. Be careful of the dexamethasone – I put on 6 kilos in 2 months …

Nigel

[MinParticipant]

Hi Tracey.
Im the one who's husband had/has the nephrotic syndrome before diagnosis with MM. I was concerned to read of fluid restrictions in your post, as Peter has had to drink more than the average in order to get the light chains out of the kidneys. Its the light chains that alters the glomular filtration rate and stops them working making them leak in to the legs waist etc. The only way to rid the kidneys of them is to drink as much as you can in order to get rid of them.
We found the kidney people were not too well versed in MM and their advise was at odds with the advise of the haematology unit. The Renal unit did not seem to know that light chains were the cause of the problems.
I should say he was on massive doses of frusomide which he took three times a day about 60mg each time. And a similarly large dose of daily prednisalone Like you he had fluid retention up to his waist and in the lining of his lungs. The skin was so taut it was painful and needed lots of lotion to keep it supple.
I can tell you that it was about three months into his CDT treatment before he saw any real benefit to his kidneys and I took time off work to ensure he drank the required 3 litres a day after which the swelling went almost immediately.
He did not want to drink too much because he though it was going to cause more fluid retention and swelling not to mention the many visits to the loo with a broken back and the renal unit agreed, but the Haematologist insisted he was going to be very ill if he did not drink as much as possible. They even threatened to take him in as an inpatient to ensure he did drink sufficient.
Today he has sparrows ankles for the 1st time since his relapse in Oct. I left work a few weeks ago and have been beating him up with water to bring this about! Making him drink it. or tea or coffee or anything but alcohol.
Our friends husband who had amloidosis and mm was on velcade alone as he could not tolerate the dex but has made a good recovery from both.
Regards
Min

[Author]

Posts