[MariParticipant]

Hi everyone,

Still very much in shock here, and not really sure what to say. Steve had his 3 month appointment today with his consultant. PP levels have gone from below 2 to 5. Doc said,'Don't panic just yet, but it is very disappointing' His SCT was in Sept 2010 and he has been so well, we had hoped for so much more. I cant help but panic. Neither of us knows what to do or think. Sorry to burden you all with this,

Love Mari

[GillParticipant]

You are not a burden Mari I am so sorry that Steve did not have better news but hold on in there the figures might change. When do you see the consultant again?

I am sure that we all have our cyber fingers crossed for you both.

Do keep in touch Good luck and love from Gill

[brochoParticipant]

Dear Mari I am so sorry to hear Steves pp have risen But as Gill said hang in there they may yet go back down It sounds as if your doctor is quite laid back about it too Mari you are so good at supporting others on here please dont ever feel you are a burden , it couldnt be further from the truth and we are all here for you and Steve whenever you need us Stay strong lots of love Bridget x

[AmelieParticipant]

John's situation is exactly the same. His SCT was in August last year, he is doing extremely well but since the spring his PP has risen. Now it is a little more than 5.

I am in panic too, but his doctor seems quite relaxed. John's blood count has risen too and the doctor says that is a good thing. As far as I have understood it makes the pp level less important.

Has anyone else experience with this?

[MinParticipant]

Dear Mari
Please read Sharpie 's last post it makes lots of sense her explanation of pp going up as told to her.
It may help to calm your fears. I know all too well how easy it is to get on the panic step. When you have more information you will feel much calmer. I hope
Love
Min

[AmelieParticipant]

Wher to find Shapie's last post? Tried to seach but I can't find it.
Love
Amelie

[MinParticipant]

Its under General with the title Free light chains increase after sct
Sharpy can be found under her name and its her last post I believe spelt it wrong above sorry
Min

[AmelieParticipant]

Ok – thanks a lot!

[PerkymiteParticipant]

Stick with it Mari, I will have to face your situation sometime in the future and whilst I can understand your concern there are other courses of treatment that will in fact ?give you more time?.

Keep us informed please we will always be here for you and Steve.

Kindest regards ? Vasbyte

David

[DaiCroParticipant]

Hi Mari,

First of all you have to allow the hope that this is a 'glitch' in the readings… it has been shown that these do occur. Secondly your consultant will want to see 3 readings on an upward curve before declaring relapse… and even then only if the trend shows a significant rise (5 to 6 to 10 etc). I met someone at the Nottingham InfoDAY who had had a scare when his PP's went from 2 to 4 to 5 and then plateaued for over a year (and still there as of March this year) . He was 2 years into his SCT remission at the time and was trying to reassure me because I was in a similar situation with my light chains rising (unfortunately mine kept on rising and I was declared 'relapsed' in April… on Janet's Birthday).

If it is a relapse then you will have to come to terms with it as quickly as you can because, if my experience is anything to go by, they will have Steve on Velcade in a blink of an eye. I had 6 Cycles of Velcade and I won't pretend that it is pleasant,,, but then again it was not horrendous either… just relentless… but boy did it work for me and within 5 months of my official relapse I am now in remission once more. So don't feel too despondent if the news is bad,

I am here for any advice with Velcade… which has been given a new lease of life BTW – with the introduction of subcutaneous injections (SubQ) which takes away all the paraphernalia and unpleasantness of cannula's etc AND the side-effects are drastically reduced (according to the American experience).

I wish you and Steve the best of fortune

Dai.

[shirleyParticipant]

Hi Mari,first of all please don't ever feel like your a burden because your not,we are all here for reasons,and this is the best site for ranting./screaming/laughing and getting everything of your chest. As David just said it will happen to us all eventually,but i'm sure once Steve has been given the right dosage of medication he'll pick up again,gotta hang on and stay very strong,best wishes to you both Shirls x x x

[AmelieParticipant]

Hi Dai,
Great to read about your experience. May I ask if a second sct has been considered for you?
I know they collected stemcells enough for 3 sct's for John and he had one, but it was hard to him and I am fearing the day they say it is time for the second one.
Best wishes,
Amelie

[mhnevillParticipant]

Hi Mari

Sorry that Steve's PP levels are rising, but as the Consultant says, no need to panic – in the scale of things they are still very low. What were they at their highest? More worrying, at this point would be if he was having lots of other complications like infections or kidney damage. Tell him to keep drinking the water!!!

Love to you both.

Mavis

[MariParticipant]

Thank you everyone for your kind words and offers of support in the future. I know the time will surely come when we will need that support. Maybe I did react rather too quickly on Wednesday, it was such a shock as he has been so welland we had such highhopes for the outcome of this SCT. I know that others have been here before us and have come through. We have two consultants one locally and one at Kings. Our local consultant is never that good at explaining things. Steve spoke to his specialist nurse at Kings, and she told him many of the things that you wise people have told us here, thank you again for your calm wisdom. Maybe things are changing for the worst, maybe not just yet, but we all know the change will come and I just hope we can deal with things with dignity when it does come.
Thank you once again, you lovely lovely people, some of you so selfless as to give such support when you are already facing a worse situation that we do. I cant help but love you all,
Mari xxx

[DaiCroParticipant]

Hi Amelie,

Unfortunately I had a battle to produce enough stem cells for even one SCT… despite five full days on the harvester and two very expensive 'booster' injections during the week. So just the one, which failed after ten months. 😐

But here I am and here I aim to stay for as long as I can.8-)

Dai.

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