[clareParticipant]

Hello everyone..:)… Last time we chatted, my mum was nervous about starting her Stem Cell Transplant at Barts, you all gave some wonderful advice… Thank you..x… However, now mum has completed her treatment, and today got her results, she is deeply disappointed. Her PP levels has come down from the initial34.. to now 6, it was 10 after 6 months of CDT. I know she was hoping for a total remission of
0, or at the most 2/3.. she feels that her treatment was not successful. Both the doctors & myself have told her she's done really well, but I feel that other people's stories of their experiences with this would help her a lot. Please shareyour outcomes and feelings of this treatment if you are able. Thanking you in anticipation..Clare Bird x

[meganjaneParticipant]

Hi Clare,

You don't say when your Mom had her SCT? I know she was making her decision in May. My husband Phil had his SCT at Bart's in December 2012 and his PP did not get to 0 until July 2013. The numbers can continue to drop for a long time after the transplant but reaching 0 is not crucial, the main thing is that they decrease and then stay stable. I know of people who have been at a PP of 5 or 10 with no further need for treatment as they are stable. How does your Mom feel? It takes time to recover from the transplant but hopefully she will be feeling better day by day and that is the important thing, the PP is just a number and there are many other factors to consider.

I hope your Mom does not worry too much, if her doctor's are happy that is a good sign.

Megan

[AliParticipant]

Hi Clare

We had the same feelings following my mums sct august 2012. We just expected the pp's to be zero and we were terribly disappointed when they were 2. However, I spoke to Maggie the nurse on here who explained not everybody gets to zero pp. The melphalan keeps working for months after, so they can still fall. Also, although everyone would like a zero reading, what the medics are looking for is the stability of that number, whether it is 2 or 6 for example, its for that figure to remain stable. We now do not ask for the pp levels. I think its too easy to be fixated. The consultant will advise Mum should there be a rise and need for concern.

Tell your Mum she's doing really well:-)

Love Ali x

[teds31Participant]

I don't know a lot about SCT but I am smouldering and have been for 7 years and my PP level as always been around 12, that fact may not help a lot here but it does show that we can all be different. Ted

[tomParticipant]

Hi Clare and Mum

Well I had my SCT in December 2009, did I get remission yes I did, were my levels real low straight after I don't recall I think it took a little while ?? But to be honest I don't bother about the marks ?? As long as my Consultant is smiling am happy, it just saves me thinking about it all the time.

Good luck and I would say if Dr is happy then you all should relax and have fun.

Love Tom onwards and upwards x

[Author]

Posts