[SarahJaneParticipant]

Hi, I have finally got round to joining this forum having being diagnosed in June 2012. After a routine blood test it was discovered I had a PP of 30. All a bit of a shock, which was then followed by full x-rays and bone marrow. Thankfully x-rays were all clear, but bone marrow had 15% myeloma cells.

I have been on regular blood tests by my local haemotaology department, a 'watch and wait' view as I have no other symptoms.

Today my PP was upto 38 which I was dissapointed at, plus occassional upper back pain – which I will now get an MRI for.

Its very interesting reading everyones comments – and it would appear that everyone has different symptoms and levels.

Would love to hear from other smouldering patients, plus I think I am in the group of younger patients at 43.

Accepting the condition is getting a bit easier, but everytime I get tested I think 'is this the one?' So a bit of an emotional rollercoster.

Thank you for reading 🙂
Sarah Jane

[eveParticipant]

Hi Sarah

This is just to say hello,sorry I cannot be much use to you,Slim never did smouldering,went straight in with AKF plus hypo-calcaemia,.

Lots of people at all different ages with SMM ,so I am sure you will get some reply,s you could try the under fifty,s lot,you have to ask to join.

Hope you stay smouldering for years and years. Eve

[jmsmythParticipant]

Hi Sarah Jane

Sorry you have had to join us but you are in the right place. My husband had SMM for 6 years and has just started treatment June. It is a roller coaster journey and I know where you are coming from about getting tested. Frank went every 3 months and for most of that I was able to put it to the back of my mind and get on with our lives, but 2 weeks before appointment I was up to high doe. Always thought "this is it". But it didn't happen for 6 years. They gave Frank MRI's whenever he complained of pain so they do keep a good eye on you. I won't tell you not to worry because you will but try to get on with your life, my son always tells me that there is no point in worrying about what might happen, wait until you have a definate to worry about. Eve is right about the under 50's. Go on to that area and I know you can email Scottie and I think the other one is Phil – not sure.

Hope you smoulder for many years and even if you join the under 50's still pop on here – there is a wealth of knowledgeable people.
Take care
Jean

[teds31Participant]

Hi Sarah Jane,
I'm Ted and I am quite a bit older than you,I am sorry you have to join us ,I have SMM and have had it now for over 5years, I go every 3months and have the tests etc.what jean says above is very true,you just have to get on with life and put things to the back of your mind ,its not easy and as Jean says when the dreaded 3months come around you think is this the one. If the SMM goes on for a long time you get to feel a little bit of a fake and its difficult for relitives and friends who know to understand whats going on ,when nothing happens.There is a very good leaflet that you can download and show to people who you may want to know the facts its at
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/smouldering-myeloma/

if you click on "View" then you can print it out.
Good luck and I hope you are still smouldering in years to come . Keep in touch. Ted

[tomParticipant]

Hi Sarah Jane

A Warm welcome to the site I dont think I have ever "Smoldered" he he but am sure members like Ted will give you the info that you need.

Take Care and stay strong 🙂

Love Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Sarah Jane,

Welcome to the forum. My partner Colin was diagnosed with full mm in October 2011, so like eve we never did smouldering. Whilst I can't help on the symptoms etc I can say that this forum is most helpful Nd useful to gather support and help if you're feeling fed up, worried or in need of a chat 🙂

Vicki and Colin

[terryl1Participant]

Hi Sarah, I was diagnosed with smoldering myeloma last August at age 49. Unfortunately, I progressed to active myeloma this April after a pulmonary embolism and a plummeting hemoglobin. I am currently being treated at the US National Institutes of Health near Washinton, DC in a special clinical trial utilizing carfilzomib. I was lucky to get a slot in it and it has chopped down my disease over 99% in four months. My doctor, Carl Ola Landgren, has written extensively about smoldering myeloma and one's risk of progression based on several factors. Just google his name, etc. for his research. The Myeloma Beacon site also has a lot of useful info. about this. These risk factors include: your level of plasma cell infiltration (over 60% infiltration leads to quicker progression); immuneparesis; abnormal free light chain numbers and ratio and greater than 99% abnormal plasma cells determined by flow cytometry. Your doctor should be able to provide you with each of these risk factors. I wish you the best of luck and I hope you smolder foreever. Terry L. from New Jersey

[SarahJaneParticipant]

Thank you for your reply, it is interesting to hear other peoples stories and puts some perspective on the situation. I try and keep busy, working full time with a 10 year old son helps. Occassionally I have moments when my mind drifts and I start worrying but I guess this is normal.
Thank you again
Sarah Jane

[DebsParticipant]

Hi Sarah Jane

Sorry to hear you have had to join us all, but I'm also glad you found us!

It sounds like you've had a similar story to mine…I was diagnosed at 35 with SMM with a pp of about 30 too. I slowly increased like you and eventually because of suspected bone pain in July 2010, I started treatment at the Royal Marsden.

Life will definitely feel like a roller coaster, but the lows and highs get slightly less with time…for me anyway. The further along I go, the more I feel I get to grips with what I am dealing with. That said, it doesn't change the fact this is a hard disease to deal with and you are totally allowed to find it really tough at times! That's why we're all here too…to help you through those bits and to answer some of your worries and concerns. I'm happy for you to PM me too if you want to. I have 2 young kiddies too, and in the early days, I really needed other people of a similar sort of age to talk to about work/ kids etc.

I totally remember how hard it is in the run up to each appointment at your stage…the waiting game is horrid but people above are right, if you can 'park it' do. If you can't, don't be hard on yourself. I used to get so stressed in the few days before my results.

I also agree that the Under 50 site is great, but stay on here too..they both offer great support and you get lots of people on here every day who can help massively with the day to day issues of myeloma.

good luck

Debs x

[docmikeParticipant]

hi sarah jane,
Welcome.
I have had smm for 4 years ,having been told I originally required treatment only to have a MRI which confirmed the absence of bone lesions . I have written extensively on smm on this forum as I also happen to be a (virtually retired) doctor.
I note terryls reply but his experience is based as in the usa and not all of his tests are easily available in the uk (nor is carfilzomab available as first line tx in the uk but thats another story about he rationing of tx by nice).The serum free light chain ratio and values [u]may[/u]be helpful in predicting progression is available but costly . But in your case, the mri is more relevant in the first instance and I hope it proves reassuring for you .
Assuming it does .it is back to the regular blood tests . Two last points 1)do you always gets symptoms to confirm progression ;no
2) true bone pain is persistent and different from other aches and pains
I hope all goes well with the mri
best wishes Mike

[docmikeParticipant]

hi jane
The validity of the special bmb tests is they may predict high risk of progression in smm( ?need for early Tx)(see terryls post)and high risk features in active mm which may require specific tx (eg velcade can overcome high risk featureS)
But I get the impression these tests are not generally available in the uk ..yet . but hopefully will become so .Free light chains assays are often rationed by costs but might the best predictor of progression in smm
Can i safely assume that you already have had a mri ? I personally feel a mri of the vertebral column is essential in the initial work up of smm. There are plenty of people wih active MM on this forum who presented out of the blue with a spinal fracture which can have devastating and sometimes permanent neurological consequences.
best wishes mike

[AletheaParticipant]

Hi Sarah Jane,

Welcome,

I was diagnosed in December 2011, believe me when I say you have found a place the vent or answer a simple question, there is some one hear for you… other than family. I'm not able to give advice but I can be a shoulder to lean on.

Regards
Alethea

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