[MeeraParticipant]

Hi. I was recently diagnosed with plasmacytoma of the sternum, for which I've just completed 5 weeks of radiotherapy and pulse doses of dexamethason. I was just wondering if there was anyone else out there who has had plasmacytoma? Do you have any words of advice-things to look out for, things to avoid. I have been warned there is a large risk of progression to myeloma. Any advice on helping to prevent/delay this happening/ living with uncertainty?

As well as other symptoms I'm struggling with fatigue (I have an active 9 month old boy at home).

Thanks
Meera

[CarolBradley1Participant]

Hi Meera
I don´t have any knowledge of plasmacytoma I´m afraid but I did see a mention of it under one of the other topics. I´m sure you will get plenty of response from people with experience of this as soon as they see your post. I´m sorry your struggling with the tiredness – I am very tired and stuggle to even do the housework let alone look after a 9 month old!
Also, it may be worth ringing the Myeloma specialist nurse on this site who will be able to give you some informed advice.
I think we all understand the anxiety of not knowing what is coming next and it´s not always an easy thing to talk to loved ones about it either – as we don´t want to make things even more worrying for them. I find that keeping busy and physically active as I can does help lessen the anxiety and also helps me get a good nights sleep. Also, I try to keep everything as normal as possible but let myself rest when my body tells me its had enough – although with a little one at home I know that it´s not easy – hope your getting some help.
You may never develop MM and if you do the outlook has changed dramatically over the last few years – very positive news now and better to come!
Sorry cant offer better medical experience or advice but wishing you good health and fun with your little boy.

Best Wishes
Carol xxx

[mhnevillParticipant]

Dear Meera

I am sorry you have had this diagnosis. I had a plasmatoma on my spine which was treated with radio therepy. I just say to encourage you, that even though I also have been diagnosed with Myeloma I haven't had to have any treatment apart from Bone Fos which strengthens bones.

I have read quite a lot about Plasmatoma and the progression to Myeloma. Frustratingly, most of what i have found out is in small bits and pieces from here and there so I can't direct you to anywhere really helpful. You could have many years without – and I gather, the more years you are free of Myeloma the less likely you are to get it.

Do hope you can stay positive. May be your tiredness is as much to do with the follow up from radio therepy. I suffered from this for several months. Also you have a young baby – that is tiring without anything else.

Do be gentle with yourself.

All best wishes.

Mavis

[GillParticipant]

Hi Meera

My husband has plasmacytoma in more than one area but his mm was diagnosed before this was found. The fact that your medical team are aware that you may develop mm is a plus as they will be able to jump on the tiniest symptom should it show up.

Good luck Gill

[SuruParticipant]

Hi Meera!

I have had plasmacytoma in my stomach, and the plasmacytoma was operated in a surgery one year ago. I'm from Finland and I'm desperately also searching some information.

I am also mother, single-mother of a wonderful 9 years old daughter. I'm also tired, in a surgery their removed also 2/3 of my stomach, so it was quite a change for my body. I've lost my appetite.

How often do you see your doctor? I have blood-tests in every 3 months.

All the best and hope to hear from you,

Love Suru:-)

[PerkymiteParticipant]

What is the difference between a Plasmacytoma and a Tumour.

I had a large tumour which ate the 4th vertebrae in my neck. The following skeletal survery showed no other tumours or lesions. None of the Consultants has ever mentioned the word Plasmacytoma when discussing my tumour.

Kindest regards ? vasbyte

David

[HelenParticipant]

Hi David
Tumour just means 'lump', plasmacytoma is a lump with malignant plasma cells in it, peculiar to the myelomas, usually sited over central bones, spine, rib, hip, skull,sometimes in soft tissue too. Sometimes they are the start of mm, sometimes they come after and some people just get one, have it treated and never get another.
Hope this helps
Helen

[PerkymiteParticipant]

Thanks Helen, so my Tumour was in fact a Plasmacytoma. The Consultant informed me that after looking at my medical records I had had undiagnosed Myeloma for at least two years, hence the 2/3 year prognosis. We live and learn. Or at least we hope we do :-/

Kindest regards

David

[HelenParticipant]

Hi David
Mm is a very complex thing isn't it. I've probably had it for about 5 years but knew nothing about it except for a gradual decline in my haemoglobin. When blood bank expelled me last year for being anaemic I never thought it would be something as scary as this. Did you go on the sct route I know it must be on here somewhere but I can't remember.
Love Helen

[PerkymiteParticipant]

Hi Helen, Sorry for the late reply my wife and I have been at Mousehole, Cornwall for the last two days celebrating our 49th wedding anniversary, a real nice trip.

I was diagnosed with Myeloma when I broke my neck getting out of bed, yes literally. Fortunately, although I was a fit as a fiddle, I knew something was serious wrong and I just lay back on the pillow holding my head square. They repaired my neck and after about 6 months trying to get enough pesky Stem Cells I did go the STC route. It was not pleasant but I would do it again if I had to although, at 68 I do not believe I will be given the chance, toooo old. I am on a plateau at the moment ? we apparently do not talk about remissions or partial remission at my Cancer Centre. I have the bog standard Myeloma ?g? and my PPs at the time I broke my neck was 33 it is now 2.2. I go for my next check up early January 2012. My original prognosis, I asked the consultant to give it to me straight, was 2 to 3 years, as I had already had it approx 2 years, that was July 2009. I am determined to make my 50th Wedding anniversary next November. At the moment I feel great and am completing a full life. I do a 3.5 mile walk most mornings and my body just fought off a nasty cough and cold without any help!

Kindest regards ? vasbyte

David

[HelenParticipant]

Hi David
Congratulations on 49 years, and what a lovely place to celebrate, I love cornwall an am going to Rock next weekend to see some friends.
Your experience with your neck sounds horrific, when I was an orthopaedic ward sister back in the 80's i nursed several myeloma patients who had bone destruction, and it was always a shock to see how much damage they had lived with before they came in to hospital.
You seem to be doing well, it's the keeping going that is vital. We will look forward to the reports on the 50th celebrations.
Love Helen

[brochoParticipant]

Hi Suru sorru I have only just seen your post. You have had an awful time you must be exhausted After any major surgery it takes time for you body to recover.Just try eating little and often whatever you feel like eating , your appetite will come back Do you take fortified drinks , Ensure is one we have over here. perhaps you could ask your doctor to refer you to a dietician too. At the moment I see my doctors every month because I am having treament, it sounds as if they are just keeping an eye on your myeloma so if there is any change they will start treatment Do you have family to help? It must be difficult when you have a young daughter so I hope you do have family and friends to help you Keep going Suru things will get better for you it just takes time to heal Please keep posting and let us know how you are, your english is terrific Stay strong love Bridget

[eveParticipant]

Hi Everyone
Plasmacytoma is treated with chemo unless it causing damage to spinal cord,Slim has tumour on spine plus lesions on shoulder blades and skull,when I asked about how long he had,had it,and what stage it was at,I was told,the do not do stages any more and they considered when it became painful was the start of it!!!!!

I can see why they told me this,but at the time considerd they were telling me porkies:-P,They also said,7 years and with trials looking at 10 years,but as you know from Slims journey,damage to bones,lungs plus 80% in bone marrow,I feel just lucky that at last the Velcade is working now down to 10% in marrow,plus no compromise with spinal cord.I just put this down to the fact as an ex marine he was very fit and can do pain.
Also being non secretor has not helped
When they first see you,they have to make a judgement,how much to tell,I found out most things by asking and reading up,I do not agree with time frame,but it is irrelevant as we just enjoy each day and talk about plans for next year.I suppose it,s excepting your limitations,and realising it could have been a lot worst.:-)

David you will make your 50th and many more,plus lots of nice care free holidays,look to the future and stay in front of that red bus.love Eve

[MinParticipant]

Peter had stage three mm. This was determined by the following scale.
At diagnosis his light chain readings were five thousand plus.
He had kidney damage, he also had bone damage to four of his vertibrae's
Stage one is just mm with no bone or kidney damage
Two mm with either bone or kidney damage.
Throw in some pulminary embolisms and a broken hand not to mention the broken ribs he ignored prior to diagnosis,and a double heart bypass-late diagnosis and this all spelt disaster for him.accompanied by the fact his mother died of mm
The most annoying fact is he had regular blood tests for his cholesterol and check ups for his heart but the blood test that would have found his mm early was never done
With the benefit of hindsight we could have nipped it in the bud
So keep on your toes and don't delay any abnormal illness
min

[AndrewWParticipant]

Hi Meena,

I had a solitary plasmacytoma in the sinus cavity 2 years ago and was cured after 6 weeks of Thalidomide and 5 weeks radiography. The purpose of being sick is to get better. Everybody's treatment profile is unique so there is no general rule that if you have a problem it will progress to any other.

As for tiredness, my wife suggested if I was going to be sick for 3 months then "you might as well sleep through it". Being a mum of a 9-month old may add to the problem but when they nap, you nap.

Stay positive.. you're still alive and the only way out is up.

– Andrew

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