[AliParticipant]

Hi everyone

I was just wondering whats the usual timeframe from finishing firstline treatment to commencing SCT?.

My Mum had 5 cycles of RCD and finished at the end of April and is still waiting for a date to have the Hickman line fitted in preparation for SCT . I just worry there has been a considerable wait now and could the pps start to creep up?

Im really having trouble posting so have kept the message short.

Thanks Alison

[HelenParticipant]

Hi Alison
I had a 6 week wait between last induction therapy and stem cell collection. Then once they knew they had enough cells they gave me the transplant date for 3 weeks later. I imagine each hospital will have their own set up, ours doesn't use Hickman lines if possible so there is a difference to start with. Which hospital does your mum attend? Perhaps someone else on the site will be able to advise you.
Helen

[AliParticipant]

Hi Helen

Thanks for your response. My Mum is attending Nottingham City Hospital. We were told 3 weeks ago that the Hickman line would take 2 weeks to arrive, then would go in to have it fitted at the xray dept, when my Dad chased this up he was told that there was a backlog at the xray dept and it could be early July before she will be called in. I just feel its too long to wait, all the good the first treatment did will be in vain?. Her pps got to <2. She has had no zometa or any monitoring for weeks now. I thought that being on the trial meant you were monitored closely?.

Feel really useless at the moment, what with the bank hols trying to contact members of staff is proving tricky. I also dont want to make a nuisance of myself but at the end of the day its my Mum and I want her to get the best care possible.

Sorry for the moan!

Love Alison Ps Im glad you had a wonderful holiday!

[AliParticipant]

Her pps got to <2. She has had no zometa or any monitoring for weeks now. I thought that being on the trial meant you were monitored closely?.

Feel really useless at the moment, what with the bank hols trying to contact members of staff is proving tricky. I also dont want to make a nuisance of myself but at the end of the day its my Mum and I want her to get the best care possible.

Sorry for the moan!

Love Alison Ps Im glad you had a wonderful holiday!

[DaiCroParticipant]

Hi Ali,

Due to an infection from a badly fitted Hickman Line (it leaked anti-biotic under my skin) I ended up Neutropenic and my harvest had to be cancelled. They managed to replace my Hickman Line at the same time as taking the infected line out (after four days of being neutropenic) but It was too close to Xmas to start the harvest procedure again and get me in and out for my SCT before Xmas… so we waited until after the holidays. The harvest procedure was prolonged and it took five days on the machine, plus two shots of the super-drug Plerixafor, to get the minimum of 2 million stem cells.

From the end of my CDT treatment, early October, to the start of my SCT, mid-March, took 5.5 months and I remained in full remission throughout. I understand your concerns re: your Mum's pp's but the medics will be keeping a close eye on proceedings.

I too am at Nottingham City and Hickman Line not withstanding my harvest and SCT procedure went very smoothly and my care and medical back-up was first-class. The facilities and the haematology department's purpose built wards are superb.

I wish your Mum all the best for her SCT… stay positive and think towards getting her home and the recovery that will hopefully lead to a long and productive remission.8-)

Regards 🙂

Dai.

[AliParticipant]

I will try to continue… her pps got to <2 from the RCD, we just dont want that to be in vain.

Thanks for your response Dai, we went to look around the unit and it seems wonderful and the nursing staff were very friendly and helpful. Even the fact that parking is free for families is brilliant. We just want this stage to be over swiftly, everything is on hold, im sure you know!

Mums symptoms seem to be returning, fatigue and bone pain and she hasnt been monitored for 6 weeks and has missed 2 zometa sessions. I thought when on a trial she would get better attention than this?

We are possitive all the way…its the only way to be:-)

Love Alison x

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