[HelenParticipant]

Hi Carol
Not sure if you were speaking to me but I'm answering anyway!!! I have light chain myeloma so the pp level was low and the sflc's were not too high, I've been lucky to be picked up relatively early. They like the levels to drop and plateau not rise again so everyone is going to respond differently i think. I asked what they were hoping mine might drop to and there was no hard and fast rule though generally the lower the better. I'm the first newly diagnosed mm on revlimid at our centre so there is no one to compare with. They did offer to reduce my meds too! When i felt soooooo- grim but by the end I just kept telling myself they seemed to be working and it couldn't last forever.
Helen

[HelenParticipant]

Good luck Jet
I'll be thinking of you over the next few weeks,
Helen

[HelenParticipant]

Hi Dai
They build you up and then dash you down, so hard to bear, is it worth speaking to your consultant on Monday?
Helen

[HelenParticipant]

Hi Ivan
Glad yesterday went ok.
Re treatment I took a few apricot kernels before they gave me the chemo, then gave them back to my mate, decided to toe the line and follow instructions to the letter as this is best chance.
I took all drugs at exactly the same times every day- as already said, take dex and anticoag in morning cyclophos after food and revlimid in evening, even set alarm to take them as this is how the pharma industry tests these things and how the results are worked out ( I used to be a clinical trials nurse- ho hum how things change!!!!!!)
Keep an eye out for side effects and phone the hosp if you are worried.
good luck with them – there is something very weird and counter intuitive about taking all these meds when you feel so well and you know they might make you feel ill!
Warn the family that your moods might be all over the place and you are not totally responsible for the grumpiness!
Listen to your body and eat what feels right and don't forget to drink the fluids- very important now.

Good luck
Helen

[HelenParticipant]

Hi Ivan
Hope you got on ok today, not too shell shocked with all the information thrown at you.
In reply to the energy question, I feel as though I have more energy though I'm only just starting to try and get fitter again since all the induction therapy stopped.
I thought i was slowing down with arthritis or the menopause, hot sweats, joint pain, dry skin, anaemia, tired, not wanting to do anything, irritable and achey all the time, up 4 or 5 times a night to pee, not sleeping properly in between and getting even more tired. I now see how difficult it is to tease out the disease from such non descript symptoms but i'm definitely much improved, I can wake in the morning after only being up once of twice and get up feeling that I don't need another hour in bed, so I hope it stays like this for a long time. At the moment I'm just siezing every opportunity to do things.
I too am in the myeloma xi trial and hope it is the best plan for me, give it thought if you get offered it.
Helen

[HelenParticipant]

Dear Ivan
I was diagnosed in February and also was fairly fit, bit anaemic and tired so the shock was overwhelming, even checked that it was my name on all the sample tubes! I've been at work all through the induction chemo, some good days some bad days and everything in-between, I'm off sick now as i head off for my stem cell transplant next month and while I know that will be a tough stage I can say that I feel better now than I have done for about 5 years.
List of questions is good idea and this site is lovely, I only discovered it about a week ago when I was looking for info on side effects and have had sensible and caring advice

Helen

[HelenParticipant]

Hi Helen
Hope today goes alright, fingers crossed for your mum, I'm going away for a few days today before the next hosp visit next week.
Stay strong
Helen

[HelenParticipant]

Hi Helen
The drugs are really hard to get used to, I'm glad I only had a few months- I was really responsive to them and my sflc dropped from 750 to 11 at the end of the fourth, the pp level went from 5 to 4 and has been untraceable since, and my anaemia resolved quickly, in fact I'm probably physically better than I have been for about 5 years apart from the side effects of the treatment.
My children are maintaining a ' business as usual approach' to it all now and they all just stand by quietly when I start raging about the injustice of it all. I will tell them of your offer, it is very kind of you, and no one really knows when they need help. I have been a 'read all about it' person since d day ( diagnosis!) and find it the best way for me but I know that's not for everyone, I know someone who only wants to know the barest minimum and there will be everything in-between.
I joined the forum because I could not find out what side effects to expect after the stem cell collection as I wasn't expecting any more than I'd experienced with the gcsf but I was floored by the continued pain headache and diarrhoea which lasted about 10 days.
I really hope your mum feels better after the radiotherapy, once the pain is under control it does get a little easier. Be brave for her.
Keep in touch
Helen

[HelenParticipant]

Hi Helen
Thank you I'm booked for 15th if there is a bed free, our unit is very busy at the moment.
I have had a very different course to that of your mum by the sound of it, I had an early diagnosis as I was found to be very anaemic with joint pains and have no obvious bone or kidney problems but the treatment is all a bit arduous and we all react differently . I was so angry at the beginning( actually, I'm still angry) and seeing how many tablets we are expected to take was dire. I still can't understand why dexamethasone can't be made in a larger dose- after all they make 10 mg tablets for horses!!!! I had a croaky voice, very tired, lots of ear wax( what a surprise that was) , constipation alternating with diarrhoea, thinning hair but most of my joint pain was better. My appetite was poor and I struggle to drink all that they advise.
You don't say how old your mum is. I'm 56 and my children are 25 and 21, they've found all this very hard to deal with especially the high energy dexamethasone days followed by the very down days afterwards. My husband is turning into a bit of a saint with putting up with my bad behaviour! But I'm close to being 'normal' again now. Keep your chin up and hope she feels better soon.
Helen

[HelenParticipant]

Hi Elizabeth
Thanks for your post, I'm much improved, clearly a few days can be as long as a week!!
Helen

[HelenParticipant]

Hi Helen
I've been diagnosed for 5 months now and had 4 courses of revlimid on the myeloma xi trial, it has been an emotional nightmare and I have only just found the energy to even look for, let alone contribute to, the forum. But I'm doing ok and on target for sct next month.
I had no rashes with revlimid but suggest go to hospital for advice. I have been in and out like the proverbial 'fiddlers elbow' over the last few months, you need their reassurance.
Helen

[HelenParticipant]

Hi Gill
Thanks, I'm still not back to normal but slow improvement continues, the trouble is that ' a few days ' to recover is hard to judge and i'm clearly impatient!
Helen

[HelenParticipant]

Hi Dai
Improving now, headache gone, just the back pain to settle down to pre gcsf levels, still unbelievably tired. SCT going to be mid August.
Thanks for your help
Helen

[HelenParticipant]

Thanks, I've had the collection, it finished yesterday, and they got good numbers too, so was worth the gcsf pain over the weekend. I am unable to move today with muscle pain and exhaustion, just hope it goes soon. H

[Author]

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