This topic contains 40 replies, has 11 voices, and was last updated by 
PeterJames 11 years, 8 months ago.
Hi
This is the first time I've written but I read the discussions lots, they bring me some hope. My husband has mm. He was diagnosed a few days before I gave birth to our beautiful four month old baby girl Elsie. I'm heart broken in a word. I'm mad and sad combined and its not getting any easier. Last week Stewart had final bloods taken he's on CDT randomised on mx1 trial. His pp have plateaued at 14. SCT end march , but can anyone please tell me whether this high level will have negative impact on remission. Should he look to get different treatment before it to get lower?consultant seems to think no point, but I want Stewart to have best chance at complete remission. Is there anything else we can do, I'd really appreciate help. I'm at wits end and really frightened.
Thank you all for hope
Vanessa
Hello Vanessa,
This disease is a shocker isn't it! And you both with a baby! :-/. Hey it is hard. It's difficult to know where to turn I release that, my partner Colin was diagnosed aged 55 and he'd not had anything wrong up until some back pain emerged, I too like you have felt mad, cheated for him and me, very very sad and sometimes not knowing which way to go.
However I can't say what the medical outcome of plateauing is, but it's worth chatting with your consultant again to understand what that means in terms of remission and more treatment. Did you consultant say whether Stewart's body was up to more treatment? Colin had to stop his at end of cycle 7 because his bone marrow had taken such a whack! We were worried about that but the risks of carrying on outweighed the benefit! Ask the consultant for a detailed understanding.
There was a guy on here called Stephen and I am sure his pps went up to 15 before his sct but they did it, and that was may/July last year. When Colin had his sct he emailed to say he had just come back from holiday in Cyprus! So, maybe it's all about an individuals body/blood? Sorry this isn't more helpful but please ask any questions and will help where we can 🙂
Take care
Vicki and Colin x
Thanks Vicki for your advice, I really appreciate it. Im finding it hard to talk to friends and family as they just say things like " let's pray they find a cure blah blah " I understand they are trying to comfort us but when Stewart hears it , it makes him mad,whereas I just get overwhelmingly sad.Id love still to find out whether Stewart has other options prior to sct which could give him longer remission. He is young and fit and doesn't appear to have problems with bones or kidneys yet. When they stumbled on his myeloma his pp's were 64 so it is a big drop I know. From following these forums though most people seem to reach single digits or zero before sct
Vicki, I don't know if this mad/sad emotion will ever leave. All I know is that I will fight tooth and nail to ensure Stewart gets the best treatment going, but at the same time I need to respect what he wants. If you ever need to vent as I have, then I'm here. Elsie is the spit of her daddy, I'm very lucky.
Again, thanks for response, if others out there have any more info I'd appreciate it. I will of course pester Dr roddy again on the topic.
Theres always hope
Vanessa
Hi Vanessa
Welcome to the forum.
When I was first diagnosed my PP's where 49 and I was told a 50% reduction was the minimum needed before a SCT could be contemplated. Unfortunately it took me a year and lots of different treatments, CDT, PAD, DTPace and now RCD, before I achieved the minimum required resulting in my bone marrow being well and truly hammered so that SCT has all but ruled out for me due my bone marrow not being able to produce enough stem cells. I'd need a long drug free period first so my bone marrow could recover.
So a reading of 14 is doable for a SCT and I'm assuming the medics don't want to try another treatment as this would compromise Stewart's bone marrow and its ability to produce the necessary stem cells. Well that's my reading of the situation 🙂 of course I could be wrong :-/
All the best to you both
Good luck
Andy
Hi Vanessa
Sorry you have Had to join us.
I can only tell you the chemo keeps on working after the cycle is finished.
My husband finished chemo a year ago around Christmas and he had gone down to 6 he did not have his SCT until May I between all this he had another blood test taken and it was 2. I was worried at the time they were taking to start harvesting plus SCT.i think they like to see how the body recovers plus build up before SCT,the only thing bad about it,is you start feeling so well and you know SCT is going to make you feel I'll again,plus the recovery period.
So it gets harder to make a decision .
Looking back now,it was a long time,he is fine now head full of hair,looking well,tires easy,plus back pain and chemo brain.
If it buys him more time it,s worth it.just have to hope for the best.Eve
Hi Vanessa
This is the first time I have posted but have looked at the discussion forum a lot.
I was diagnosed at age 49 in May 2007 with a spinal fracture . I am on the Myeloma 1x trial. My paraprotein initially was 67. I had the old treatment of Vincristine, Adriamycin etc which they don't use now, before the SCT. I had 6 lots of chemo which brought the pp down to about 20 (not exactly sure but remember my consultant saying thats where she expected it to end up!). After the SCT the pp was 10 and stayed there for a couple of months. It then started falling month on month without any further treatment until November 2008 when it disappeared completely. It was 5 years last week since I had the SCT and there is still no sign of the myeloma.
What terrible news to have just before having a baby but don't give up hope. There are a lot of people out there who have done well. The SCT's job is to deepen the response so I think your husband is in a good place and hopefully will be in an even better one after the SCT.
All the best, Janey
Andy ,you've been through the mill. I'm lost for words that you would take the time to explain treatment pros and cons. I really appreciate it. I wish you the very best, and that what you hope for comes true.
Eve, once again I'm humbled that people have taken the time to recount their experiences and so positively. I'm very glad to hear your hubby is keeping relatively well post SCT.. Stewart finishes induction in a week then the pre sct roller coaster starts on 18th Feb with a view to transplant in March . I don't know if the Dr feels it best not to leave time between induction and SCT? Is your husband on maintenance treatment?
Again, so thankful for hope given
Vanessa
Janey your message has brought me new hope. Last night I slept for the first time in ages and I stopped trawling the Internet for miracles. At least for the moment…..
So grateful
Vanessa
Janey can I ask ,did you have maintenance treatment?
Yours
Vanessa
Hi Vanessa
Once you have had SCT you are again randomised for maintenance or not. My husband got no treatment,at first I felt he had lost out,but it does give you more time away from the hospitals.
He now goes for Zometa every 2 months boods and urint taken for trials plus we try to get appointment with consultant the same week,so that gives us 7 weeks freedom away from Myeloma. Eve
Hi Vanessa
no maintenance, just zometa until june 2009. I feel very fortunate and hope that it lasts. My consultant says that the myeloma is either too small to measure or there is nothing there and she doesn't know the answer. I am able to work full time and take no drugs other than the odd course of antibiotics for a chest infection.
All the best.
Janey
Hi Vanessa
I was diagnosedMM at end may last year, did six cycles of CDT, without any major problems , them stem cell harvest early dec , again no problems
Came into the Christie for SCT on 17th Jan , with MM @3 , specialist thinks he will get me into full remission
Day 1 killer chemo injection which made me quite ill for the night , then next day in went the cells ,
I admit after that you need to tough it out as the side effects are not too nice
I am very nifty at getting to the toilet before disaster strikes , plenty of stomach ache , retching , mouth full of ulcers. Totally lost appetite within 24 hours of admission
Went neutropenic last week
But on mon this week those little soldiers popped up at 0.5 & today up to 3.3
If all goes well I may be thrown out this fri , now allowed to wonder around a little within the hospital
BUT , do not let the above get you down , go for the SCT
At just over 70 I am probably too old for a second go , but they do have spare cells
What I am is mentally very strong & determined to beat this beast, I have had superb support from my family
The SCT will extend your remission . By how long nobody knows , but go for it
As the others say you can recover for a good remission , there are loads of new drugs out there
Be strong
Peter
Hi Peter,
Good to hear from you. I was getting a bit worried by the silence. I was not so clever at getting to the toilet on time. Sounds like you will be in the Christie for the same time as I was. I went in on Tuesday and came out on Friday 2 weeks later. It is now 10 weeks since the transplant and apart from some back ache and dry skin and itchy eyes I feel just about normal. Had to go into the clinic 2 wks after discharge, then 2 weeks and then 4 wks (the day after tomorrow). No isolation provided at the Christie for out patient visits though! When I am in the clinic this Friday I want to find out just how careful about infection I need to be. There is lots of flu out there and thanks to my namesake, Dr Wakefield, mumps, measles and rubella is rife amongst young children. My wife has been fiercely protective of me so far for which I am very grateful.
Hope you get out on Friday. You will certainly be having to keep your feet up for the first few weeks.
Good luck,
Chris
Hi Chris
For some reason the guest wifi blocks out my e mails, son has tested my iPad @ home & it works fine, very strange
I can use the forum to get e mails out, my blackberry is ok , but painful on longer mail
I have a very dry mouth, did have ulcers , but drinking lots of tea has cured them , I am not usuall a tea drinker but coffee tastes awful
Unable to eat solid food , but soup , ice cream & yogurt are keeping my weight steady , after a 6 kg loss , which I could well do with loosing a lot more
Now into hair loss , seems beard has to go , eyebrows & chest , not sure re the rest as yet
Doing ok re toilet visits until last night , which we will draw a veil over , not nice !
Hickman line out today , discharge tomorrow pm
Wife setting up security patrols round house & for next few weeks will screen all & sundry , I don't want to be overwhelmed for the first few days/ weeks
Life in the slow lane will be a novel experience !
All the best
Peter
Hi Peter,
If you are anything like me dry mouth will continue for some time. I went off coffee completely too and only liked certain types of tea. Yes, we had high security at home. May seem OTT but anything better than an infection. I will be in the clinic for a check up tomorrow morning.
Good luck with the home coming. Next door neighbour is a nurse and she said there is nothing like being sick in your own bathroom.
Chris
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