[kh0305Moderator]

Hi Cloudspotter,
Sorry to hear of the problems you are experiencing. Hearing that the MGUS was progressing was probably the last thing you wanted to hear 🙁 but despite this you’re keeping very positive 🙂
As mulberry has mentioned in her reply, there can be some neuropathy side effects from some of the chemo drugs used. Dad didn’t really suffer much at all first time round and the mild symptoms he had disappeared after treatment but with his third line combo currently he is experiencing more significant neuropathy though still not the effect for it to be enough of a problem in day to day life to warrant reducing his meds yet. Again, we expect the issues he does have to disappear once treatment finishes (3 more cycles…). I can understand your reluctance over chemo with the side effects but following his treatments, dad has lived a virtually normal life in his remission period so the hope would be that longer term you would get the MM under control and not suffer any long term side effects. Good luck with everything xx

[cloudspotterParticipant]

Thank you so much for your replies, Mulberry and kh0305
This is the sort of thing that I was hoping to achieve through the forum
I’ve gathered plenty of “official” information through various channels, but I also wanted to hear about peoples’ personal experiences
I’m having to build up the sort of support in a matter of months that took decades after my lymphoma and peripheral neuropathy diagnoses. Myeloma UK has been a great help, I’m glad to say.
I’m pleased to say that my doctor, nurse, and the rest of the Haematology team at the RD&E hospital, Exeter, seem very capable, efficient, kind, and caring, so I am hoping for the best….
Thanks again, very much

[mariposaParticipant]

Thank you everyone.

[tony642Moderator]

Hi there,

I dont know if you saw it or not, but there was a very good webinar about MGUS on the Myeloma site a couple of weeks ago. It explains exactly what it is, and explains the likelihood and pathway of it possibly developing into full MM. I can recommend it to you, I certainly learned a lot as I did not go through t MGUS stage because I went straight to full MM. You can find it and all the other videos) on the homepage listed undervideos`.

I hope these help.

Regards, Tony

[cloudspotterParticipant]

Thanks Tony- that’s very useful to know

All the Best, Liz

[mariposaParticipant]

Thank you. It’s a good to know more about it. I have just been told that I have borderline Parkinson’s. I have been given a prescription for Co – careledopa.
I’m reluctant to take anything, but I have to see if it makes my symptoms improve.I hardly have any symptoms, but I suppose I have to follow the advice .
Seems that I’m likely to have at least one incurable condition to deal with. Hopefully not for several years. I will be 70 soon, so I have had my 3score years and ten.
Lots of people aren’t that lucky, so I am counting my blessings that both conditions have been found very early.
Time will tell, I am going on holiday and I am determined to have a brilliant Christmas. All this certainly focuses your mind to the things that really matter.
Take care everyone.

[cloudspotterParticipant]

Hope you have a wonderful holiday and Christmas, Mariposa- well deserved.
Also that these ominous discoveries don’t develop into anything!
All the best, Liz xx

[kh0305Moderator]

Hi Liz,
Really good that you have a supportive and informative team at the hospital. That really does make such a difference as you go through everything. Dad’s team have been very helpful when I’ve bombarded them with questions over the years and as you say, the information from others on here helps to then put it into ‘real life’ situations.
Hope everything goes well for you xx

[kh0305Moderator]

Hi Mariposa,
Sorry to hear about the Parkinson’s but hopefully the drugs will help with the symptoms. I’m glad to hear that you are still remanning upbeat and positive and I’m sure you will have a fabulous holiday and Christmas with your positive outlook on life. Here’s to a better year ahead. Take care of yourself xx

[cloudspotterParticipant]

Hi again, everybody. I’m very relieved to say that, after all the usual tests, the Haematologists etc. could not find any evidence of Myeloma- just MGUS and Lymphoma in the bone marrow.
Thanks for all your help and support.
The specialist posts a copy of her letter to my GP on RD&E Exeter’s “My Care” system, and I can easily access my rather complex blood test results.
She says I am anaemic, because of the Lymphoma (sorry, this is a bit “off topic”), and also short of vitamin B12 and Folate. She would like to use chemotherapy on the Lymphoma *if* we can find something that wouldn’t make my neuropathy worse.
I would like to start treating the anaemia and B12/Folate deficiency *before* considering Chemo. Does anyone have any experience of this general situation, please?
Thanks very much

[mulberryParticipant]

Good morning Cloudspotter, it’s good that you now have some answers and a plan for treatment is being devised.
I was anaemic and had low vitamin B12 levels when I was being tested for myeloma.
I benefitted from cyanobalamin for the B12, I had this as a series of injections initially, then 3 monthly injections, then no treatment, but now have it prescribed in tablet form. For me, without any supplementation it gradually goes down under the minimum ideal level, although this took about 9 months to happen. I find B12 gives me ” the feel good factor” so it’s definitely worth having if your levels are depleted.
In terms of the anaemia, I was treated with iron initially, until my cancer diagnosis. It seems that iron supplementation isn’t a good idea if you have an active cancer (malignant cells will readily use the iron). For me the anaemia was an intrinsic part of the disease, ie anaemia of chronic disease, rather than low iron levels. The anaemia lessened as a result of treatment of the blood cancer.
I hope this is helpful, & best wishes with your treatment.

[cloudspotterParticipant]

Hello Mulberry, thank you so much for your very prompt and helpful reply.
It helped me to understand the various factors involved.
I certainly didn’t know about cancer cells and iron!
Many thanks for your good wishes

[tony642Moderator]

Hi there,

It is good news about the MGUS diagnosis, it is unlikely that you will go on to develop full-blown MM, so try to put it at the back of your mind (although I know that’s easier said than done) and live a normal and full life. You will probably have regular checks to see what level of paraprotein you have in your blood and the ratio between the Kappa and Lambda light-chains, but fortunately these are done in a blood test, not a bone marrow biopsy. If there are any indications that the disease is progressing, then they can take early action to deal with whatever is happening, so that is a good place for you to be.

Please let us know how you get on and if we can help in any other way.

Regards, Tony

[cloudspotterParticipant]

Hi Tony, Many thanks for your helpful and reassuring reply.
Thanks, too for the information about Kappa and Lambda light chains. I have to confess that, during the decades of monitoring, I never really understood them- maybe because I didn’t want to think about it too much.
Your advice sounds excellent, and I will do my best to follow it!

All the Best, Liz

[mariposaParticipant]

I’ve had my autumn booster…now I am on holiday and tested positive for covid 🙁

• This reply was modified 2 years ago by  mariposa.

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