This topic contains 43 replies, has 20 voices, and was last updated by 
sb3006 10 years, 8 months ago.
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 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
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
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:-S 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:-S. 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…
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