Newly diagnosed

Dear I’m sorry to hear you have been diagnosed with multiple myeloma but don’t despair. Treatments for myeloma are the best they have ever been with good results. The biggest challenge you will face is coming to terms with the fact that definitive answers are hard to come by. You have to learn to roll with the punches and not let the treatment dominate your life. It’s very early days for you so don’t try to take it all in at once, acceptance is a gradual process. Just concentrate on your treatment plan for now and get organised as this will help reduce your stress. I read you are much younger than the median age for a myeloma patient ?

Hi

Yes I turned 46 a week ago. I have a good support network and I know treatment is bettrr than ever.  I was only diagnosed on Thursday but am just devastated.  It's so life changing and I am also worried about strain it will cause to hubby and kids. I'm the one who looks after the whole family.  

Hi AMK,

I am really sorry to read that the MGUS has turned into myeloma. Did you start to have symptoms or was it picked up in a blood test? I’m really hoping the myeloma markers are low and when treatment starts you can get back to remission really quickly. It’s definitely a difficult time emotionally so my heart goes out to you.

Greg

Hi Greg 

Thank you.

I had jaw pain for over a year and was under maxillifacial for what they told me was tmj due to teeth grinding.  I never for one minute thought it was linked to MM.  Anyway to cut a long story short they gave me routine mri which was referred back to haematologist who contacted me to do pet scan. They said my bloods had remained high but stable since being diagnosed with MGUS so if it wasn't for this routine appointment and scan I'd be non the wiser. It took the haematologist 5 weeks after scan to arrange bmb and then another 2 weeks for results.  As you can imagine I thought results of pet scan were fine as they hadn't contacted me so this diagnosis is a real shock! 

Amanda 

Dear, you are right to say that a diagnosis of multiple myeloma is life changing and nothing can prepare you for it. However people like greg who are much further on in the journey will testify that you will adapt and learn to cope with a new normal. As a wife and mother it’s natural for you to worry about how this will effect your family but you will have to try to learn how to delegate more. We women are terrible at letting people do things for us but in this situation normal rules don’t apply. Once you get your treatment plan and get into a routine you will be able to start to process what has happened to you. I think it’s important to say that having myeloma is a much a mental challenge as a physical one and if you feel you need it don’t hesitate to speak to your cns about individual counselling. It’s ok to be vulnerable, at 46 it’s a lot to take on board. Remember your family will want to help you and you deserve to be cared for and shown compassion while you learn to live with myeloma.

Hi Amanda,

That’s really tough that you had to wait like that for diagnosis, and especially after they had given you the impression everything was ok.

The shock is going to take a long time for you to get your head around, so don’t be surprised if you are in a daze for a bit. I’m guessing your treatment won’t start until after Christmas? All you can do now is switch it all off - incredibly hard to do and will take time, but it’s really all you can do. And then hopefully treatment will kick in and get you back to a good long period of remission.

I’m really feeling for you at this time, I remember how tough the first few weeks were.

Greg

Hello Amanda,

It’s never easy to say “Welcome to the forum” but trust me you will find a lot of information, support and comfort here. All the previous comments are spot on and all I can add is that you take it one day at a time. 

Regards

Hi Amk9:

I am writing to perhaps reassure you in some small way regarding your recent change from MGUS TO MM.

Back in 2006 I was told that I might have MGUS, however, NOT to worry since, only 1% of the population that has this goes on to get Multiple Myeloma.

So I didn't worry.  :) 

UNTIL, In June of 2018 I had noticed I was extremely tired, night sweats, achy all over.

I went to the doctor and he drew blood, my TOTAL PROTEIN and GLOBULINS were higher then he had liked:

So the FUN BEGAN: I Had the SPEP/Immunofixation Electrophoresis/24-Hour Urine/ Full Body Scan/PET/CT Scan and Finally DRUM ROLL PLEASE-the Dreaded Bone Marrow Biopsy.

Turns out I have IgA Kappa Smoldering Myeloma.

My IgA at Diagnosis was 2089 when it should be around 400

My Kappa was 27.2 the upper limit of Normal was 19.4

My Lambda was 8.9 the upper limit of Normal was 26.3

Total K/L Ratio was 3.06

The above is NOT HORRIBLE TO SAY THE LEAST, however, I wanted to give you this information because of what I am about to type next.

My BMB and my FISH and GENETICS are SCAREY AS HELL.

I wont get too deeply into the results, but suffice it to say,   I have Deletions and Amplifications that put me at HIGH RISK Multiple Myeloma.

I also have Bone Marrow Fibrosis.

However, here  I sit today, STILL SMOLDERING, STILL STABLE, my K/L Ratio at the highest it has ever been  ,at 3.60

 I should also  mention my "M'' Spike at Diagnosis was 1.9 in the beta 2 region, and today, Feb 17, 2020 my ";M" Spike is 1.5.

THERE ARE A LOT OF REASONS TO REMAIN POSITIVE.

DEE

Hi, I am reassured somewhat reading about your experience.  I was diagnosed with MGUS (IgG Kappa) exactly 12 months ago with a paraprotein of 17.9 g/L. I have had 4 tests since then and esch time it has gone up. The last tests were 4 weeks apart and went from 22 to 24.4. So in 12 months it has risen by 36%. 

I'm having trouble with getting any real direction from my GP. 

My question is- is this type of increase in the paraprotein level something that indicates I might be progressing to SMM???

Any advice would be appreciated. 

Thank you.

Good Morning Little France:

I apologize for taking so long to respond, sometimes Life just gets in the way

While it does appear that your Paraprotein is trending upward, which could potentially mean you are progressing to SMM, keep in mind that doctors look for other changes as well.

For example: C.R.A.B symptoms

C- High blood calcium

R-  Renal (High Creatinine)

A-  Anemia

B-  Bone Lesions

They also look at the % of plasma cells on BMB

They look at your Immunoglobulins-IgA IgG Him

They look at your Kappa and Lambda and K/L Ratio

They check overall how you are feeling

They look at your CBC 

Have you had the 24-hour Urine to check for Bence Jones Protein?

As you can see there are quite a few things that must be looked at to determine if you are progressing to SMM or not.

While the upward trend of your Paraprotein is certainly somethimg to keep and eye on, I wouldnt go into panic mode just yet.

I hope this has helped a little.

Dee