[phil47Participant]

Hi,
I had my SCT on 28th Sep and my first neutrophils registered on Day 13 (0.1). I was given my first GCSF injection on the same day, and one the next and registered 1.8 on day 15 and was given a 3rd injection and discharged. When I attended my OP appt 6 days later I was down to 0.51. I was prescribed 5 days of GCSF injections to do myself and a week later was at 1.71. To my horror, a week later I had dropped to 0.27, and was prescribed a further 3 injections. This week I was at 0.8. Everything else is fine, RBC and haem were back in normal range straight away and platelets have steadily improved and are now at 160 but I am extremely concerned about my neutrophils (other WBC's are OK as well and I'm great in myself). I don't know whether 0.8 is now my true level or if there is still some GCSF effect. Has anyone else experienced a similar pattern and what was the outcome? My worst fear is that the disease is still active and hence neutrophils not recovering. My consultant will perform an early BMB if things dont pick up over the next few weeks
Thanks
Phil

[MicheleParticipant]

Hi Phil
I had my SCT 9 months ago and can clearly remember the obsession with the neutrophil count.

I had my transplant on the 10th February and was then sent home until the count fell to 1. That turned out to be on 16th February when I was put in isolation. It held at 0 for only 2 days and I was given 2 GCSF injections on the 18th and 19th. By 20th, the count had boosted up to 2.5 and I was able to "escape" on 23rd.
Only a week in isolation was the hospitals record time from what I've been told!

My specialist told me that the neutrophils are the slowest things to recover from the SCT which is why we have to be so careful with cleanliness and diet etc. and the count can bob about a bit in the early days, so don't panic too much. 🙂

[phil47Participant]

Hi Michele,
Thanks for your reply. As I understand it you were only neutropenic as a result of your chemo. Did you become so again after your count hit 2.5? I'm still neutropenic 6 weeks post transplant.
Thanks
Phil

[eveParticipant]

Hi Phil

This disease has no normality,so one persons story,has no baring on your,s,my husbands neuts and platelets took a long time to become stable.The thing they look for is,although the neuts dip,they look for a little gain each time,my husbands went down to o.3 when he was taken back in,he is now 6 months on and plates are 84 should be between 150 to 400. neuts are 3.4 should be between 2 to 2.75.So everyone is different
You do have to look at your other numbers concerning you bloods,before you,start thinking the disease, is back,but I can understand your fears, I think everyone expects a quicker recovery.I use to think the same way,all unfounded,once you have the BMB,you will know.

Six months down the line and I can say,it has taken this long to even feel,we have been given extra time,it has been lovely to see doctor,s smiling and saying how pleased they are with Slims progress,but it has taken nearly 2 years,with hiccups along the way.Eve

[MicheleParticipant]

Hi Phil

Fortunately I was only neutropenic for 4 days. As I said, the count did bob about a bit for a few days but as far as I know it started to climb VERY slowly after that. It was only 0.2 increase every month but always in the right direction.

You look as though you're a similar age to me so as I said, don't panic. It's very early days for you yet and as long as you keep everything clean, stick to a clean diet for the time being and keep away from germs spread by people, I'm sure you'll pick up again very soon.

It's all about self preservation just after SCT no matter how insular and selfish you have to be. 🙂

[MariParticipant]

Dear Phil,

I agree with Eve, there is no 'normal' with this disease. I know it's easy to say but try not to worry that a low neut count means your disease is still active. Remember the melphalan takes out the bone marrow where all the blood cells are made. Some are quicker to recover than others. Steve had his second SCT almost 8 weeks ago, 17th Sept . His neuts were only 0.5 when he came home after 3 weeks, I was surprised he was let home so early. Since then they have risen to 1.7 and then dropped right down to 0.3, this week they are at 2.0 when he had his one month check back at Kings. His platelets have been hit particularly hard this time around. They rose slowly to the low teens before he came out but again dropped down to 0.3, again these were at 43 this week but he has had several platelet and whole blood transfusions. This was worrying because he was bruising pretty badly, but that has stopped now. His Hb has been dodgy too, 8.8 on discharge but dropping to 7.7 when he had three units of blood which brought up his count to 10.6 but it slid down to 8.6 a week ago but had climbed to 9.3 by the end of the week at his check up. He is getting two more units of whole blood tomorrow. Phew sorry about all those numbers, dont want to overdo it but just to show you how variable these things can be. His doctor was more than happy with him on Wednesday and felt that there was evidence that his bone marrow was starting to work normally again without support from further GCSF, despite all the transfusions. These figures have no relevance to you at all, for one thing this is his second and his bone marrow is likely to be in much worse shape than yours. The disease and chemo both take their toll. However I do remember a similar picture with his first SCT and his neuts bumped along the bottom line for a while. Having said this at 100 days his biopsy showed no sign of the disease and he felt well enough to start working part time just one month later. I don't know if this helps at all, but just try to relax and let your body do what it needs to do, it just takes time to recover, look after yourself in the meantime,

Best wishes, Mari x

[phil47Participant]

Hi,
Thanks for the reassuring replies. I'm probably a bit paranoid because although my induction treatment (CTD)worked really well (reducing BMB from 95% to 4% and p-p from 73 down to 6.4) as soon as I finished, my p-p started to rise again and had doubled within 5 weeks. Anyway, next appt tomorrow so fingers crossed!
Phil

[tomParticipant]

Hi Phil

Think its all been said Nowt normal in this dept so not one shoe fits all, I never ever bothered with my PP nuets or anything els i just wanted to see My Dr with a smile on his Face and to be fair that worked and still is for me 😎

Keep well and stay Fit

Tom "Onwards and Upwards"

[bikerchrisParticipant]

HI Phil,
I hope your results were encouraging this week, I only had my SCT 3 1/2 weeks ago, and it's early days for my neutros only 0.35, but they are letting me home tomorrow. I have no idea about pp's but mine were at a steady 18-20 before my Transplant, so it will be interesting to see what they are now.

Can I butt into your blog as my Lena want to ask [b]Marie[/b] how Steve is recovering now, as he was suffering with his blood levels? I have been lucky with mine with only one bag of platelets after the transplant.

Good luck everyone,

Chris

[phil47Participant]

Hi All,
Yes, good news last week. Neuts up over 1 so everything heading in the right direction.
Chris, hope you're recovering well and are back on the bike before Christmas (weather permitting!)!
Best Wishes to all
Phil

[jmsmythParticipant]

Good news Phil keep improving!!
Take care
Love Jean x

[mickeymooParticipant]

Hi Phil,
Hope you are well:-) I'm due to have my SCT
JAN/FEB @ coventry walsgrave.
Five more chemo to take thats my 6th cycle stage1 finished
I've been so luckey they have found mw a donor my
two younger brothers did not match,I was shocked when
my wonderful Dr M gave me the good news.
The donors SCT planned JUNE/JULY @ B'ham QE.
I really hope you are doing fine,90% of what I've been told
goes in one ear & out the other :-S It will all sink in soon.
I could do with a book on what all you nice MM post all these
short letters eg.MM,SCT,BMB,I no I'm in for a rough time next
year but I aint going to let MM beat me for the sake of my 3
brill kids.

Good luck Mike

[phil47Participant]

Hi Mike,
Best of luck with your SCT. Hopefully it won't be as bad as you expect it to be, mine wasn't. Just keep sucking the ice and mouthwashing and stay positive!
All the best
Phil

[tomParticipant]

Hi Mike

Well am sure the thecko stuff will all fall into place am afraid to say its a long haul this one M8, but i am happy if my Dr is happy 😀 and I feel well 😎

Good Luck in your road to remission

Tom "Onwards and upwards"

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