[HelenParticipant]

Hello Dee
Every one is different, he will only get what they think he needs to reduce the cancer cells to the lowest level. He is a year younger than me, I had 4 cycles initially. A bone marrow biopsy then showed complete remission. So I went on to have auto stem cell transplant, as he may well do if he has a good result and his kidney function improves. At the beginning of the treatment it is very hard not to be frightened, you are ill and made much sicker with the chemo, his world, as yours, will be shattered and he will wonder if he will see his beautiful child grow up. I know I felt and thought like this initially.
Now, I'm better, I'm not so terrified, more cross really but back to something like my old self. I hope your dad soon gets back to his old self but for the moment try and divert his attention, watch favourite films together, eat chocolate and look forward.
Love Helen

[HelenParticipant]

Hi Eve
It's going in the right direction now, let's hope he continues, keep those plates coming:-)
Love Helen

[HelenParticipant]

I do like to hear good news Wendy, and no going back for 3 months is great, hows the new hair? And did you go back to work?
Love Helen

[HelenParticipant]

Hi Eve
I know it is hard, it is a measure of your love that you care so much. I've never gone back to my pre transplant weight and lost several kilos last week, I'm very aware of my family subtly offering chocolate and scones etc which I just don't feel like eating. 🙁 As long as he has the fluids and enjoys what he does eat then it will gradually improve. It was several months as I say, before I was eating more than a few mouthfuls at each meal. Don't forget, it takes time for the new cells lining the gut to repair and reorganise themselves to normal again. Can't rush convalescense.
Love Helen

[HelenParticipant]

Hi Alison
I'm just about 11 months post SCT and have had my first hair cut since loosing mine. I found it quite devastating, wore the wig for a few months but never felt secure in it, dreaded a high wind in case it flew off!:-0 I hope all goes well with your mums transplant,soon it will all be done.
Love Helen

[HelenParticipant]

Hi Tom
I missed this one too, really great news for both of you. Nice to get double good news, and birthday wishes;-)
Love Helen

[HelenParticipant]

Hi Dee
You are having a bad time of it. The chemotherapy usually is a few drugs which work together to help reduce the volume of myeloma cells in the bones. You take them for about 3-4 weeks each cycle. Sometimes they are oral drugs or a mixture of oral and intravenous ones. Depending on what he is on and how well they work, he will have about 5-8 cycles. If he is on Velcade is a 3 week cycle and you may get 6-8 cycles. Generally speaking, you stay on the same drug until it stops working, then switch to another to reduce the myeloma burden. Then go for stem cell collection when there are fewer myeloma cells in the body. After that is a big dose of chemo, Melphalan, to completely kill all the myeloma cells.
Does this help? Do you need more? there are lots of info leaflets on the site which might help you too. Though sometimes just getting an answer when you think of the question is the best way. 🙂
Love Helen

[HelenParticipant]

Thank you Elizabeth
Love Helen

[HelenParticipant]

Hi Elizabeth
That is great news for you, carry on like that.
Love Helen

[HelenParticipant]

Dear Jean
I don't know about right hand or left hand here, but you do not seem to be getting the same sort of information that I do.
I'm a low secretor ( oligo secretory) but I had an IgA pp (paraprotein) level of 6 and a Lambda light chain reading of 700, Bmb showed 60% marrow involvement on day of diagnosis. After a month of therapy I had pp of 2 and SFLC ( light chains) of 53, over the next 3 months I went to 0 on pp and 17 on light chains and bmb showed 0% mm cells- classed as complete remission.
So they way I interpret things, you should see the pp drop as low as possible.
Ask are they talking about paraprotein levels, Or are they talking about blood protein levels? These might be what they are talking about and they can fluctuate but I really don't understand what you are being told here maybe someone else has a clue, better still ask for a print out of the results, speak to the specialist nurse or phone Ellen on the site.
I'm really concerned that you seem to be left so much in the dark, especially as we are encouraged to 'know our numbers' these days.
I do hope you can make some sense of this soon, it must be quite worrying for you. Let us know how you get on.
Love Helen

[HelenParticipant]

Hi Keith
I've had a few mouth ulcers but not many, I can't use mouthwashes at all because they sting too much, so I just clean my teeth and rinse with cold water, extra strong minty toothpaste is unpleasant. My mouth feels as though I've just burnt it with too hot tea, so I have to be careful not to burn it if you get my meaning. I still find spiced food, alcohol, most citrus and believe it or not, cinnamon flavoured jelly beans caused me a great deal of discomfort yesterday, so I'll not be having them again:-(
I have just got used to it over the last 17 months, it's disappointing when you go out to eat and things taste funny, so I don't feel as sociable, but as I say at the minute I want length of life and will cope with reduced quality if the revlimid gives me it.
Hope it eases off soon,
Love Helen

[HelenParticipant]

Well boys as we've 'got down and dirty' and totally personal………;-) . I have noticed that there is a pattern, and here is where the diary comes in handy again to make notes! The first week is normal to diarrhoea, the second normal to bunged up and the third is daily fibre, prunes, figs, movecol, dynamite, calls to the CSN for extra supplies, total fatigue and general fedupness, usually by 10 am! In my experience.:-( And terrible wind and bloating all the time.! I can tolerate it……. Just!! Because if it keeps my bone marrow like Beirut instead of Gosforth so the mm cells don't like it, then keep it coming. However so far with my extra days off it I've no improvement with my sense of taste yet, maybe it's gone for good?
I'm just on soluble aspirin with it as antiembolic.
Love Helen

[HelenParticipant]

Dear Angie
It is so sad for you, I hope you were all there with her. My thoughts are with you
Love Helen

[HelenParticipant]

Hi Alethea
Welcome? Myeloma is a tough disease isn't it? It really messes with your head, but you do get there. It's all so intense at the beginning with the diagnosis and the treatment bombarded at you when you are still reeling with shock, especially mum as well.
Do get help, it is there and there are many here who will help if they can
Love Helen

[HelenParticipant]

Hi Tina
I'm still not back to work and it is over 10 months since my SCT, I was going back in February but got pneumonia, then last week I got gastroenteritis, now I'm aiming for next week on a phased return, if it doesn't work out I'll have to rethink. Whatever you decide, don't go back too soon, all the people at work soon forget what you've been through and just expect you to get on with things as usual.
Love Helen

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