[yvonneseParticipant]

I was recently told that my MGUS had progressed to Smouldering Myeloma following further bone marrow biopsies. I was dealing with this pretty well I thought but have now had days where I feel totally overwhelmed with the diagnosis. Although I am relatively well regarding my kidneys, bones  and no anaemia I feel real panic at what is happening to me. I don’t know if anyone else has felt like this or is it just me being a bit of a wuss? I feel like the sword of Damocles is swinging above my head. I understand why there’s no point in starting treatment unless the myeloma becomes active due to risks and side affects of treatment but I feel like like saying to the doctor ” please do something NOW instead of waiting until it’s harming me”. It’s the uncertainty of everything.

 

[marionsternParticipant]

Hello Yvonne. Sorry to hear that. I was diagnosed with smouldering myeloma about 6 years ago now, and it is quite overwhelming. However, I have remained fairly stable throughout that time. Like you, I was unhappy with the just “wait & we’ll monitor you approach”
Firstly, I read a great deal of the research, and am up to date.
Secondly, I use a US site, patientpower run by Andrew Schorr, which I have found quite helpful
Thirdly, I am quite careful about diet – not as much as I should be – and did more than the 5 a day, and drink plenty of water, which was the limit of the hospital advice
Fourthly I went down the dendritic cell therapy route in Germany, but this is expensive and altho this is supported by scientific theory, there are no blind trials or conclusive evidence. as such it will not be supported by an insurance company, and can not be recommended. I think it may have been helpful – but that is the limit; it is only anecdotal .
Fifthly, you need to discuss with your consultant whether you are at high risk or not of progressing to full MM. there are tests that will be carried out, or probably have been carried out
sixthly, I check my blood results myself and am aware of their meaning
and I also do some complementary therapy – but mainly because I enjoy it

hope this is helpful
good luck
marion

[bazcParticipant]

Hello `Yvonne, sorry for the late reply, I’ve only just seen your November post, I understand exactly how you feel, I too was diagnosed with Smouldering Myeloma, about 18months ago went through all the emotions you have described.

I don’t think you can  forget it totally, but for me has become easier to accept, I tend to have a little bit of a wobble just before I go for my  regular blood checks thinking what if it is worse, but for me and hopefully for you it will stay fairly stable.

The  advice I would give is try and live your life as normal as you can, as it can be quiet easy to get swallowed up with the whole thing and it to rule your life, take each blood test as it comes, you do have days when you think about it a lot, but as time goes on those day are less frequent.

Hope all goes well

Barry

[yvonneseParticipant]

Hi Barry,

Many thanks for your positive comments. It’s now 3 months since I was diagnosed and I am definitely having days where it’s not at the forefront of my mind. I think I am dealing with it a little better now. As it happens I had my latest blood tests last week and am due back at the hospital this afternoon for the results so I am a little nervous but hopefully everything is still stable.

0nce again thanks

Regards

Yvonne

[bazcParticipant]

Hi Yvonne

How did your appointment go? hopefully it is still stable

 

take care

Barry

 

 

take care

 

Barry

[yvonneseParticipant]

Hi Barry,

My first consultation with Myeloma nurse since my diagnosis went well. My bloods have remained stable and my paraproteins unchanged so that was a relief. Have to go back in 3 months. I am grateful that I am being monitored so vigilantly.

Take care

Regards

Yvonne

[laceyParticipant]

Yvonne, i’m new here (as of, oh, say, 30 seconds ago) but still wanted to respond to your post.

My husband is in the diagnosis process. We are currently waiting for results of mri, skeletal scan, and a host of blood tests (his initial bloodwork showed 14 of the thing that when it hits 100 is bad… sorry i don’t remember the test or units… so much to take in at the first haematology appointment!). The haematologist was very equivocal — kinda dodging — when i asked him about smoldering.

So we are readying ourselves for any one of the three stages and reading as much as we can. One thing that i’ve read over and over is how even a MGUS diagnosis can cause extreme worry and anxiety. Seems like this is completely normal. I venture to guess that you are NOT being a “wuss”. In fact, you sound collected and willing to take things as they come.

Just wanted to say that. And to wish you luck with your future screenings.

All best,

lacey

[yvonneseParticipant]

Hi Lacey,

Many thanks for your kind comments.

I remember well how scary it was to be having all the different tests and then waiting for the results. It’s very difficult to think about anything else and carry on doing normal everyday things so I really do sympathize with you and your husband. In a way you will feel better once you know and then you know what you are dealing with. I thought I would have MGUS forever and was not at all prepared for being told it had progressed to Smouldering Myeloma. Then my Haematologist said that it will progress and become active at some point but they don’t know when…..could be months or years!! I just have to go with it now and I am being monitored more often and I have 2 Myeloma nurses who are available to speak to if I have any concerns between appointments. They have told me there are new treatments coming through with some good results – although it is not as yet curable.

It is a worrying time for both of you. Please let me know how he goes on.

Take care

Yvonne xx

[laceyParticipant]

Thanks, Yvonne.

Yes, the uncertainty is scary. Then again, MGUS would be by far the best outcome, so, naturally, hoping to be uncertain for the duration. Flipping over into the smm category must have been (must be) quite frightening.  Hope you have good support as you go through this new form of uncertainty, Yvonne.

Strength!

lacey

[yvonneseParticipant]

Hi Lacey,

 

Yes indeed MGUS is the better outcome.Thats exactly what the Haematologist said when my diagnosis came back in 2014. However now I know that although I have asymptomatic myeloma I need to stay at this stage as long as possible. It just messes with my head sometimes but it is not at the forefront of my mind now as it was a few months ago.  I don’t read stuff about it anymore as I feel I know all I need to at this moment in time. Everyone deals with things differently.

I have good support from my husband Steve and also my 2 sons & daughters-in-law.

Onward and upwards

Yvonne x

[miraParticipant]

Hi All

Just been reading all the posts in this sections as I too have been diagnosed with asymptomatic Myeloma and do not require treatment as yet. I’ve been told at least for another year. However, I am being monitored every two months.

It appears that some of you have been in this position for some time. Therefore will be grateful for any advice on what you are doing in terms of lifestyle, eating, talking supplements and alternative therapies.

Someone also recommended that I go to see Dr Etienne Callebout, a cancer specialist practicing in Harley street who also promotes alternative therapies such as curcumin supplements, etc. Has anyone heard of him?

[docmikeParticipant]

Dear Mira
I am a retired consultant physician and had smouldering myeloma for 6 years but am now in remission SCR after second stem cell transplant . as it happens i am on curcumin because NICE does not fund maintenance therapy . In retrospect had I known ten years ago ,what I know now, I would probably have taken curcumin then .Again as there was no alternative and no side effects of note . But a trip to Harley street will be very expensive and curcumin is available online and in some shops . This forum contains the information if you can search past discussions and reflects the very same questions that you ask ,as everyone joining asks the same questions. There is more experience here ,although hidden, than any doctor in Harley street .
michael
en

[miraParticipant]

Hi Michael

Thank you so much for responding to me. So pleased to hear you are in remission. I will look at past discussions regarding this. I did see my consultant today and asked about Curcumin and he said that whilst the NHS don’t advocate it he has heard that it is helpful for myeloma patients and there is no harm in taking it. However, he could not say how much is an effective dose. Could you let me know how much curcumin you take each day and the product description. I have started taking a liquid supplement as well as adding to my food. But I believe this is not sufficient. If you have further information here, please let me know.

Thanks again.

Mira

[debgParticipant]

Hi all,

We are in the same boat, my husband just got diagnosed with SMM. Our world was turned upside down as first we were told MM then got the ‘better’ news of SMM. My husband is good at compartmentalising things his head, I’m not! We are doing our very best to be positive though.

Michael, congratulations on your remission! You mentioned you’re on curcumin, we’ve started my husband on this. I read about the following plan, do you think this is a good way to take it?

1mg for 7 days, 2mg for next 7 days, 4mg for next 7 days and 8mg onwards. This sounds like a lot but it’s hard to find what coudld/should work.

Thanks for any tips from anyone.

[miraParticipant]

Hi

My consultant has not asked me to take curcurmin although I am. Who was it recommended by? it will be good to know.

Thanks

Mira

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