[boxerParticipant]

Hi to all… I was diagnosed with smoldering Myeloma. Is there anyone on that has had the same news..

[FrancesParticipant]

Yes, me, a few weeks ago. Have had MGUS for years but it's just progressed this year. I feel tireder than normal but so far am getting on with life. (I posted last week about dealing with aches and pains and wondering how to tell if they're significant or not)

[angeParticipant]

Hi, I was diagnosed with smouldering myeloma in August last year. I feel ready and prepared for treatment but this will not happen until the myeloma progresses. I have read up as much as I can and just keep attending my clinic appointments. I feel overwhelming tired and need to sleep in the day to get through to the evening. I work part time and have a busy family life. I have had x-rays and an mri which show multiple disc bulges but nothing myeloma related. My paraprotein levels are stable around 39. As you will find out no two patients are the same. It is a strange situation to be in as I feel I am just waiting for the second hit and have no idea when that will be – I was told initially that I would progress within 2-3 years so I have made a year! I hope you will have a long time smouldering. Take care Andrea x

[teds31Participant]

Hi boxer, Been smouldering for 7 years so far ,I have not had any treatment though I have had several scans and all body Xrays, due to aches and pains. My paraprotien is about 14 and my light chains steady at about 200. If these numbers don't mean any thing to you just say and some one will explain, The point is that this disease is very personal and every one is different so you could be in for a long or short wait , not very nice but as my consultant said make the most of it. Keep going to the clinic and ask all the questions . Good luck. Ted.

[boxerParticipant]

Hi Andrea,
Thank you so much for your reply. I lost my father just over a year ago aged 75. He had Multiple Myeloma. However, he had several other heath issues that masked the Myeloma symptoms. So when he was found to have Myeloma he was already in the latter stages with little medication that would benefit him. The specialists say he may have had Myeloma for some time but couldn't possibly time frame his illness. You are right Andrea just waiting for the second hit is a nightmare but we have to be positive and focus on getting on with life. Treatments and research are always ongoing so fingers crossed for the future and i hope you too have a very long smouldering time. Take care John x

[boxerParticipant]

Hi Ted many thanks for your post. Tricky one this Myeloma… Waiting games.. However i just have to remain positive about the whole affair and enjoy life before treatment. I have researched Myeloma and went through my fathers treatment plan so all the catch phrases are known to me. Well carry on smouldering Ted and all the best mate. Take care. John

[SabParticipant]

Sorry to hear about your diagnosis – my husband was diagnosed in October 2009 and just started CDT treatment in June this year so 4 years of being monitored – we never expected him to have the bonus of this time free of Myeloma! He found it hard to cope with psychologically particularly when he went for his appointments to monitor the para proteins
.
His para proteins were originally diagnosed at 40, stayed around that level until the last few months until they reached 71! He has had no symptoms at all – the consultant picked up that his red blood count was going down and that he may develop anaemia, so advised that he start CDT.

We were both terrified after reading about all the side effects, but thankfully he has responded very well. His first 2 cycles were dramatic with three visits to hospital, due to high temperatures, but his third and fourth cycles have gone well – para proteins down to 21 after just two cycles!

Myeloma has taught us to take every day as it comes and to get the very most out of life and not spend time worrying about what might happen! Good luck with everything and hope that telling you of our experience helps.

Sab

[boxerParticipant]

Hi Sab, many thanks for your post with regards your husband and his treatment. Your right, psychologically this is very testing for me, as your always thinking the worst.. However i hope to be at this stage "fingers crossed" for a long time to come. My para proteins are still quite low at 11. I have been made aware that every Myeloma case is different to the rest. I am still going through the stage of acceptance with this. I have however a strong close family who support me in every way. Thanks Sab for your post as you have just given me a lift..

All the very best of luck to your husband and family

John

[beverleyParticipant]

Hi Boxer

I was diagnosed with smouldering myeloma 2 years ago , due to a blood test for something else, and thankfully my last blood test a couple of weeks ago showed no change. Everyone deals with this diagnosis in their own way and my way is to leave it up to my consultant to tell me when I need to worry. I know it is a bit like sticking your head in the sand but it works for me, I dont even know what my paraproteins are!! I am not being flippent , it is just that I have no symptoms whatsoever and it is easier to ignore if you are feeling well.
I do have off times usually the week before my outpatient appointment , but everyone is understanding and as I work in the NHS they know what I am going through.
So carry on regardless as the song says and remember there is no correct way just your way

take care
Bev

[jmsmythParticipant]

hi Boxer

My husband smouldered for nearly 7 years before treatment started. We had 7 years without meds and it was great Had STC in March. Hope you smoulder, like Ted, for many many years

Jean

[happyheartsfanParticipant]

Hi boxer, I was diagnosed with mm 13 months ago. Paraprotien of 64, not smouldering! I'm 46 and have a young family. Please don't feel sorry for yourself, you may have a long time to go! And I did let myself go but after treatments you will get, hopefully some way down the road, SCT, chemo. I hade my SCT in April. Please be fit as you can while enjoying yourself. I'm going to run a half marathon early next year, maybe a full by May. Don't let yourself go just cause you have a horrible disease. There's a pleasure to be had at coming through hard times and still doing what you enjoy. Despite my SCT I now run 5 miles whilst pushing Elsie in her buggy along the canal. Magic, ducks, dogs abound. Push yourself!

[tomParticipant]

Hi Boxer

Well welcome to the forum am sure you will get some great advice and help on here, stay well and lets hope you smoulder for years to come.

Tom Onwards and Upwards

[buddyParticipant]

Hi Boxer.

Sorry to hear your news. I was diagnosed with mm just before my 50th birthday. I had never heard of Myeloma. I had had a condition for 9 years prior to this known as M.G.U.S. I have had a stem cell transplant and have been stable for 3 years and counting. Like everyone says, each condition is different and each person responds to treatment differently. I just try to continue living life as before. Good luck with your treatment. The initial shock takes a little bit of getting used to but soon you will come to terms with it and regain the strength that you have always had.
Hope all goes well for you.

[Author]

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