Plasmacytoma

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

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

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

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

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

Hi Suru

How are things going with you? Is you appetite any better?

At the moment I am having blood tests every couple of months, my kappa light chains have decreased but are still present, and I had an MRI at the end of Sept when they suspected the fracture. The tumour didn't look any different compared to the pre-treatment scans at that stage. My team plan to do a PET CT some time in the new year.

Take Care
M

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

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

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

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

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

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

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,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

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

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

Hi Andrew,

My husband David has a couple of plasmacytomas, one on his neck and one on his sternum. The first has been zapped, the second about to be done (at the Christie in Manchester). However he has extreme pain and numbness in his cheek, nose, mouth and lips, and I was wondering what symptoms yours in your sinus produced? We are currently attributing this to Thalidomide, but his consultant is concerned that there's a hidden P/C somewhere!

David has had MM for 9 years, only a little interference with his bones so far, mainly anoemia and breathlessness - so we are keen to find out as much about these "tumours" as we can. We find we have to do a lot of our own research on these as they seem so rare.

Thanks - Lesley

Hi everyone,
My dad in being treated for plasmacytoma in his sinus, which has spread to his lymph nodes. He has tried radiotherapy, chemotherapy, thalidomide and surgery but it's still there..we are now preparing for him to have a bone marrow transplant and I'm so scared of what it will mean for him. He's been so brave this past year, bearing the burden of so many treatments and surgeries only to have this to face in Feb.
Does anyone else know about bone marrow trasnplants? Dads doctor has mentioned it's a very rare case.
Guess I was just looking on here to find support and advice
Thanks xx

Hi liz
Bone marrow transplant is a generic term these days and can mean any of several procedures. Many of us mm sufferers will have autologous stem cell infusions (our own cells previously withdrawn and saved) ( commonly called transplants) after high dose chemotherapy and some will have additional allogenic (donor cells) you need to get reading some of the info sheets on this site and ask your dads specialist nurse for the information on exactly what he will be having so you are prepared. It's not easy or pretty but there is much info on this site here from some of the people who have recently had their transplants. Keep in touch
Helen

Hi Helen
Thanks for your reply..dads having his own cells taken out and stored while he has the intensive chemo in Birmingham hospital. He has to stay in for 4 weeks which will be hard for us all. It's taking me in particular a long time to accept what's happening to him, and seeing how he is changing..becoming am old man very quickly when he used to play football every week. I hope so much he will be able to get back his energy to play one day, it makes him so happy! ;) in the meantime he's taken to shouting at the telly when man united plays lol. I have a 2 year old son who adores him and it's amazing how little people know instinctively how to cheer someone up ;) I will look on the site for more info on the transplant, thank you. Have you had a plasmacytoma too? Liz x

Hello Liz
No I didn't have any plasmacytoma, I became progressively more anaemic as the mm cells took over my bone marrow and stopped the normal blood cell production. When I became too anaemic to give blood at the donor session I was sent for tests. That was October 10. I was diagnosed with mm in February 11, fortunately for me i have no obvious plasmacytomas, bone or kidney involvement. I was on chemo for 4 months, stem cell retrieval in July and high dose chemo and stem cell rescue in august. Now I'm 18 weeks post procedure and in complete remission, not back to work yet but slowly recovering.

It is hard for everyone to come to terms with such big life changes as this and the stresses and strains on patients and families are difficult to deal with, especially when you have been apparently fit and the emotional and physical effects of the drugs on top of the diagnosis knock the stuffing out of the best of us. I don't know about anyone else but i hate the sheer sadness of the alteration to my lifestyle and future plans (I'm 2 years away from retiring from nursing) and was looking forward to escaping from hospitals, only to find myself on the other side! As I said earlier ask away whatever and whenever you need.
Helen

Thank you ..glad to hear you are in remission there is light at the end of the tunnel! My dad finishes chemo/thalidomide next wed, then we wait until the 13th Feb when he will have marrow cells taken. Then the 24th he goes in for the high dose chemo. How did you cope, Helen, with the treatment? I've read the leaflet on here about the process, and it sounds complicated..but effective! At least now I have some idea what it entails. What did you find helped or hindered your experience? Sorry for all the questions..wishing you well xx

Well:.......... My experience was pretty awful, I had sailed through the chemo induction phase by comparison and worked until the stem cell collection. I was going to be mostly out patient treated for the transplant. Many people have a couple of bad weeks with it and some have little trouble at all, we are all different.
The high dose treatment went ok, I stuffed my mouth with ice for 10 mins before infusion, continuously through it and for 20 mins after it, this focuses the mind a bit but stops the mouth from getting too sore afterwards. I had a sore arm after the hdt but was otherwise ok. I had all the anti sickness meds known to man and only felt a bit nauseated. Was shockingly tired the day after and had the stem cells back the next day. Then I went home for 3 days coming back on alternate days for bloods (i live close to the hospital) then the next day was admitted again with pain and sepsis and stayed in for 11 days.
I ate and drank nothing, had mucositis and collitis. It was very unpleasant for all of us and one of my children tells me I was totally horrible to them all and kept sending them home I could not bear to have anyone near me, if I'd been an animal I'd have sat in a cave by myself til I felt better then come out, my usual bright and cheery self. I don't generally do 'ill' so it was embarrassing to find myself so poorly.
Anyway, I'm in complete remission now, which is the aim of the procedure and I'm on the myeloma xi trial so I take revlimid as a maintenance drug.
As for do's and don'ts, do take lots of pjs, baby wipes, towels, moisturising cream, a radio, computer, books and magazines and a hat to go home in as hair falls out at about 14days. (mine is now an inch long,hurrah!)
Interesting food and drink afterwards is good but don't get offended if it isn't appreciated and don't worry if he growls at you like an angry bear while it is happening, it is a bewildering experience and no one knows how they are going to be until it happens. I hope this helps, keep in touch, hope I haven't terrified you or upset you too much.
Helen

Thankyou for talking about it..and sorry if its reminding you of difficult times...your'e one tough mama to go through all of that and still remain so positive, helping others along the way.
Yes I can associate the angry bear thing with my dad lol, he can be sooo infuriating at times! He will not talk about or discuss his cancer - but prefers to be distracted..so we all have to be careful what we say..he's not the type to come on here and chat about it, nor would he be interested in finding out more about the illess, about what may have caused it or what the new up and coming treatments are - he prefers just to listen and trust his doctor. We are hoping he will be able to use skype in the hospital too, so he can take his computer, carry on working and keep himself occupied. Its a fair distance to the hospital where he's staying, but we still want to be able to visit him - although I am slightly worried about taking my 2 year old...are children allowed in the isolation ward? Like you say, we don't know how his body will react to these treatments, everyone is different - but so far I have to say, I proud to call him my dad..he's taken the burden of chemo, radiotherapy, various surgeries several times over, with such dignity and strength he really is an inspiration...and so are you by the way
xx

Hi Liz
I'm not bothered about thinking or talking about it, it was way worse than childbirth but does get less horrible as the time from it goes further away, if that makes sense. I saw it as an essential process to extend my life as much as possible, as, despite all the new stuff coming in for myeloma, we can only have what is the best available right now and so it's a case of follow the instructions, trust the team and do as you are told. Listen to your body and tell the staff if you feel ill or 'different' in any way.
Your dad will still be coming to terms with it in his own way, whatever way he chooses it is the way he wants to handle it. I know it sounds silly but I didn't want to tell anyone what was wrong with me initially, in fact I denied there was anything wrong to a few as I hated the looks of pity. This site has helped me a lot but it's not for everyone, going public with your feelings and experiences can leave you feeling a bit exposed and vulnerable.
You would need to ask the hospital what their visiting policy for children is before taking your little boy along. My personal feeling is not to let him close to grandpa for quite some time as small children are notorious for carrying bugs and liberally spreading them and your dad will need to keep away from infection for many weeks both before and after his treatment. But it is a personal choice. Skype is an excellent idea and maybe practice it a lot before hand. I took my iPad in for just that reason but never used it as I never felt well enough to let anyone see me. ( I needed to retain as much control and dignity as possible, no idea why, perhaps it was something to do with having no control over anything else)
Anyway distract dad as much as possible, tell him he is loved and you are there to listen if he wants to talk but don't be surprised if he never takes you up on it.
Love Helen

Thankyou for being honest - it's much appreciated ;) hugs to you and wishing u getting stronger every day xx

So..today's the day. My dad has just been admitted to hospital to start his transplant tomorrow. We all hope and pray it is a success, I'm so looking forward to him being free of cancer. I feel quite anxious as to how the treatment will affect him, but to be honest the last 2 weeks have been awful for him..the tumor has grown on his face to such an extent he can't close his mouth or eat proper foods. It's hard seeing him in such discomfort and not being able to help in some way. I think I need to stay busy in these days...

Dear All

Thank you all for your replies. It's been 3 months since I completed my treatment. After that I then has a suspected fracture of the sternum, probably because it was weakend by the tumour. Well that made life difficult for a bit! Anyway things are getting better now. Fortunately my enery levels are picking up, as my now 13 month old is getting more active.
Yes I have been very lucky to have help from family members and my husband has been able to work from home some of the week.
Now I am concentrating on building up my upper body strength.

Meera

Hi Meera great to hear life is getting better for you now. I admire your strength especially having a toddler to look after as well , but its a lovely age though everything is new Heres hoping you get your energy back up quickly just remember to allow your body time to rest when you need to Good luxk love Bridget x

Hi Meera

Glad you can now concentrate on strengthening your back. Some folk seem to do really well quickly. I am 14 months past my op and still need two crutches, but mine is complicated by arthritis.

One thing to be careful of is lifting. I got worse a few weeks ago when my grandsons were staying and I lifted the four year old onto my knee, so beware as your toddler gets older. It's very sad not to be able to do this, but it is all a balancing act of causes and effects. Hope your tiredness is getting better. I certainly fall asleep much much less now.

All best wishes.

Mavis