[susieParticipant]

I’ve finished 17th cycle of IRD and had clinic today. Told my neutrophils are 0.4, which is not good and has me in a real tiz.
They have given me 3 days of Filgrastin and postponed the next cycle. Been told I have to contact them if I get the slightest indication that I may be developing an infection.
What I don’t understand is why they didn’t give me prophylactic anti b’s.
So now I’m becoming OTT to prevent me catching anything coz I have a real fear of being an inpatient.
I’d be grateful for any ideas
Best Wishes
susie

[matthew2019Participant]

Hi Susie

Its is quite common for this to happen.My wife had the same thing happen to her.The only advice I would give you is to keep away from lots of people shopping trolleys anywhere the public touches things card machines bank machines. Waah, Wash,wash,and wash your hands many times a day. Don’t touch your mouth or nose with your hands. (Sounds like Corna advice) but thats the simple answer to it all. They neutrophils will come back don’t get to het up about things. I know the is easy said than done. If any children around you have colds keep away from them as well. Don’t shake hands or kis etc.

Good luck

Matthew

[janwParticipant]

Hi Susie

How is your treatment progressing on IRD? I just wondered whether your neutrophils have recovered since March? I’m on my 28th cycle of IRD which has thankfully reduced my light chains from 3000 in May 2018 to a really good level of 20, but both my neutrophils and platelets have reduced over the period of the treatment. Although my neutrophils have always been low since the two Sct’s at around 1.4, they have reduced further on IRD to 0.8. However with weekly Gcfs injections, the platelets are now just below 3, which is the highest they have been since diagnosis in 2010. The injections have also managed to stop my platelets from dropping further.

Best wishes
Jan

[susieParticipant]

Hi Jan
Nice to hear from you. There doesn’t seem to be much activity on here these days.

Yes after a month off treatment my neutrophils recovered to normal levels and they restarted me on 15mgs lenalidomide which I am still on. There was a mix up over drug delivery last month which has meant my paraproteins have risen to7 from 4 I’m hoping they will come back down in time. I’ll be starting my 21st cycle soon. Gosh where time goes.

You sound as though things are progressing well with you, and I hope it continues for you.

All the best & take care

susie

[susieParticipant]

Hi Jan
Nice to hear from you. There doesn’t seem to be much activity on here these days.

Yes after a month off treatment my neutrophils recovered to normal levels and they restarted me on 15mgs lenalidomide which I am still on. There was a mix up over drug delivery last month which has meant my paraproteins have risen to7 from 4 I’m hoping they will come back down in time. I’ll be starting my 21st cycle soon. Gosh where time goes.

You sound as though things are progressing well with you, and I hope it continues for you.

All the best & take care

susie

[janwParticipant]

Hi Susie

I just wondered how are your neutrophil and paraprotein levels since completing cycle 21? I hope all is OK. Do you ten to suffer with many side effects on this treatment?

Take care.
Janice

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