[PeterJamesParticipant]

Hi Mary & Charlie
What's it like coming home from the SCT ( nearly in one piece ) , bloody marvellous to be back in your own home
I was superbly treated at the Manchester Christie, in & out in sixteen days
They did their best to kill me off with toxic chemicals , but within six weeks from my escape I was beaten into submission , sorry full remission , being told that happy word is one very emotional moment for you & family
Yes you will go through your front door , if like me weak , off solid food for some weeks, very dry mouth.
Also took me over two months to get back on wine
Anyone with any sort of cough , cold or infection was banned
I was told the neuts were the bloods little solders , the SCT treatment reduces them to zero , then they come up , 1 is you could be on your way home , can't remember the ideal range
Everywhere we go we take hand wipes & gel
Who cares full remission is the target
Go for it
Peter

[StanstanParticipant]

Hi Everyone
Not been on for a while, thanks for all your help and hope everyone is OK.
We have been away looking after our grandchildren. Stem Cell still planned for early July. Paraproteins were 13.2 at the end of April now they are non detectable. What does this mean? Has anyone else gone down like that?
Doing fine on Velcade so far.
Thanks again for all your help
Love Charlie & Mary 😉 Upwards and Onwards

[tomParticipant]

Charlie & Mary

Am pleased all is well, and I bet you loved looking after the Kids.
as for the Levels I know nowt about them am sorry to say.

Keep well

Love Tom Onwards and upwards x

[VickiParticipant]

Mary and Charlie

Paraproteins undetectable is good! Means the treatment is working 🙂

Vicki and Colin x

[FOXLEYParticipant]

Hi Charlie and Mary,
Yes the undetectable PP is excellent news. I think everybody would recommend using this little window of opportunity between the first line of treatment and the SCT to get as fit as you possibly can because the high dose chemo sure knocks a lot out of you. If the harvest is happening in Southampton there will be many return visits to the clinic and you might want to talk about financial help with that. At the centre I went to there was an excellent specialist nurse who talked us through at length all the issues connected with the harvest so it is probably best to start there.
Good luck,
Chris

[Kazzam2Participant]

Hi Charlie and Mary,
Just a quick one to say we have 3 cats. After my sct , i avoided having them on my knee 🙁 kept them off my bed ( I slept seperate), and did not clean cat litter. Touch wood i have been fine.
Best wishes
Karen
x

[StanstanParticipant]

Thanks Chris

We just didn't understand why the pp's had gone down so much within 3 weeks. Can't wait until it is all over. Are you OK now?
Charlie & Mary

[StanstanParticipant]

Hi Tom
How are you? It was great looking after the kids but really tiring. We think we are a bit old for soft play and coming down bumpy slides. Never mind, maybe it is keeping us fit!!!:-)
Love Charlie & Mary

[StanstanParticipant]

Roll on Peter.
Hope it happens soon, can't wait fro stem cell to be over.
Love Us

[StanstanParticipant]

Hi Vicki & Colin
Thanks, maybe now we can go onwards and upwards as Tom says. Isn't it such a long journey? Have you changed your diet at all? Some say that it helps.
Love Charlie & Mary

[FOXLEYParticipant]

Hi Charlie and Mary,
There are just a lot of things that are unpredictable about this disease. My PP went down by about 50% every 3 weeks during the CTD and bottomed out at less than 2. I was disappointed to find that they had gone up to 2.3 after the high dose chemo and 6 months later they are at 3.2. Main thing is that the SCT worked as far as restoring my bone marrow is concerned and I feel well.
I have now come across two definitions for a successful SCT. One is stabilising the myeloma and the other is recovery of normal marrow function after killing it with the chemo. 20 years ago or more they used to give high dose chemo before SCT's had been developed and a lot of patients died because they died of subsequent infections for lack of neutrophils.
Chris

[meganjaneParticipant]

Hi Mary and Charlie,

The one thing I have learnt since my husband Phil was diagnosed with MM is how unpredictable everything related to this disease is. We met one man while Phil was on treatment who, after one three week cycle of velcade-dex-dox had his paraproteins go right down to zero. I can't remember where his levels started but I am sure it was higher than 13.5 so it does happen.

Good luck to Charlie for the transplant in July.

Megan

[steverowleyParticipant]

Hi Charlie and Mary,
Good luck with all of the treatment.
Lots of really good advice on here and nothing much that I can add, only give you a brief summary of what I went through.
Had my treatment at Southampton General in October 2012. All the staff were brilliant and everything that my consultant told me would happen DID happen!
Three weeks in isolation, with the middle week being the worst, when I felt absolutely zonked and run down. Lost my appetite and even the smell of cooked food made me feel grotty.
My Myeloma also caused Osteoporosis and compression of my spine, resulting in a loss of 6 inches in height. Something which I still find difficult to come to terms with, as I am also in constant pain, despite taking pain killers throughout the day.
Returning home was wonderful, even though I was somewhat apprehensive at first, as the hospital care and attention was no longer immediately to hand.
Yes I could climb the stairs, very tentatively at first, but gaining strength and confidence on a daily basis.
Visitors were restricted to close family in the initial stages and even they were banned if they were sniffly etc.
Underwent physio work at Portsmouth QA Hospital, under the advice of my consultant there, and this proved very beneficial.
My mobility is now much improved, though my upright stature still needs to be worked on and I will get there in the end.
I am now able to garden an cut the grass etc, even though at a more sedate pace than before.
I also experience fatigue in the afternoons and have to ly down for a rest and short naps.
We have also been able return to our place in Spain on a couple of occasions and more visits are planned later this year.
I still have to return to The QA, once a week, and will be doing for the next two years, for bone strengthening drips.
Now in remission and all is progressing well.
However the success of my treatment and recovery would not have been possible without the unstinting love and care from
my wonderful AND beautiful wife.
Hope the above has been useful and best wishes to you both for the future.
Steve.

[StanstanParticipant]

Hi Steve

Thanks, that is really helpful. Did you have osteoporosis before stem cell transplant? How long was it before you could garden and travel?
Thanks for your help.
Charlie & Mary

[steverowleyParticipant]

Hi Charlie & Mary,

Yes I did have osteoporosis before the stem cell transplant, but not before I was diagnosed with Myeloma.
Infact I had been very healthy up until my diagnosis, never been in hospital, played tennis and golf on a regular basis, before experiencing back pains towards the end of 2011. This was originally diagnosed as muscle strain and a slipped disc, prior to blood tests and a bone marrow biopsy confirmed my condition.

I was able to begin gardening, driving and travelling to Spain, 6 months after my transplant.

Still get slightly emotional at times about my condition, but this is becoming less frequent.

The trick is to try and keep positive at all times and you will successfully get through it all. Do what the Doctors and Nurses advise and tell you and I can assure you that all will be well.

With all good wishes,

Steve.

[Author]

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