[docmikeParticipant]

After over 6 years smouldering,my m spike has crept up to 39+ and now the alkaline phosphatase has suddenly shot up; presumably due to a silent bone lesion . So I am awaiting the go ahead for scans to confirm the need for treatment, even though in my self I am well with no pain anywhere.

Watch this space .But rest assured I will try to keep contributing to this thread as I realise there are many gaps in our knowledge about SMM and your questions/worries have been mine also and know how uncertainty surfaces when you are due your next test, as to where your clinical path will take you.
MIKE

[martinebbageParticipant]

Hi Mike

Good luck, encouraged you have so had 6years, hope you get many more. I have been 6 months since diagnosis, I know what you mean regarding the lead up to the next meeting, it really is getting me down, still there are always people worse off.

Again good luck

Martin

[Anonymous]

Thinking of you in this next part of our journey we’ve been given I hope I can smoulder on for six years, having a touch of the blues this last couple of days and all I can remember is horrible useless words from my haematogist  back in October..wish I could get the positive vibes going again from Prof Cook in leeds but a friend sent me this today.. No point in stressing over something you can’t change..move on and grow strong…so I think tonight I am going to attempt to build ikea bedside cabinets and set of drawers that should give me something else to think of.

Helen x

[HarmonyParticipant]

Wishing you strength and courage for the next phase Mike. The confusing thing is that the stats suggest that there’s only a 10% chance of progression in the first 10 years but I haven’t heard of anyone who doesn’t progress at some point, You have the advantage of being medical and therefore able to understand all of the terms and as they say, knowledge is power.
Take care.x

[docmikeParticipant]

Thanks for yor best wishes .I am awaiting a mri : my alk phos has fallen being compatible with a recent silent micro fracture somewhere.
Dear Chrissie . The stats shows that 10% of high risk smoulderers patients Do NOT progress within ten years and are then regarded has having MGUS with a risk of 2% per year .
I have not found any details of studies of these long term smoulderers as I dont think there are any
Mike

[cartdawParticipant]

Hi Michael I wish u well. Iv been to see cons today and para proteins have gone up to 24 . So all bloods have to be rptd in 3 weeks. If anything else raised then ie light chains may have to start treatment also   due to new guidelines. Otherwise I’m well . MRI ok

[docmikeParticipant]

Hi Dawn.
I am still in limbo; M spike leveled off at 37. hb 11.9 but mri spine and limited skeletal survey no lytic lesions .Am awaiting bone marrow on 23/2 and pet scan 24/2
The skeletal survey in sheffield did not include long bones which is contrary to the guidelines of 2011 British Haemotology society.The pet scan broke yesterday and hence the delay .(2008 skeletal survey in chesterfield did include long bones )Best wishes Mike

[HarmonyParticipant]

Hi Mike,
Hope the results are positive- I know how torturous the waiting is! One step at a time.x

[docmikeParticipant]

Woops bone marrow 60% plasma cells !! pet scan uptake on T11 (thoracic spine ) not seen on mri , hb down again to 11.5/115 (11.1/111 = 2gm /20dm drop =anemia =active myeloma )
on the edge of the cliff
appointment on thursday to discuss options
Mike

[HarmonyParticipant]

Oh Mike, I’m so sorry about the sixty percent plasma cells but u r so incredibly knowledgeable and informed that I’m sure that you’ll make the right treatment choice for yourself. At least you won’t get blinded by the science- I try to take stuff in but my brain is unable to unravel it all most of the time. To be honest, I barely had a grasp of the function of white blood cells before my diagnosis! I hope that someone’s there to hold your hand through all of this because even doctors need to be patients when necessary. I’ll pray for you because that’s what I do- even though I sense that you’re probably far too rational for prayer. Carry on Mike -one foot in front of the other. Take the treatment and keep telling Myeloma to f..k off and let you get on with your life!!

[docmikeParticipant]

Dear Jane and Chrissie .Thank you for you support.
davefletchers thread on yvonnes topic is worth a look .
Mike

[cartdawParticipant]

Hi mike good luck I don’t think il be far behind u x

[docmikeParticipant]

Dear All,
A temporary repreive for two or three months unless hb drops to 11.1(last up to 11.7).The pet scan showed a pea size lesion in t12 ?significance ;repeat scan in may . But start zometa meanwhile .The 60% plasma cells are criteria for treatment but not for enroling for myeloma X1 which would give possible access (33% chance ) to quadruple therapy (CcRd version 6 ).
Dear Dawn , my protein is 46 so you’ve a bit to go yet but over 30 may signal the need for the tests which I ve just had .
Mike

[docmikeParticipant]

Dear Jane
My light chains are rising but below 100 and ratio below 50
Mike

[angieevangelouParticipant]

Good Luck Mike

Thinking of you as you start some treatment…

Angelina.

[Author]

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