[jcraddockParticipant]

I am also on the same trial. I struggle with low neutrophil counts for the last 6 months having had no problems for 18 months.

At the moment I am on 10mg for three weeks then 2/3 weeks recovery. I have had to have a few GCs-f injections to boost the neutrophils.

I do not know what will happen ,after my lastest course, as it seems to be such a struggle to keep the neutrophils up.

It is a difficult call as I am sure the drug is helping to keep the paraproteins just under 5% but the neutropenia allows you to be more open  to infection….

[jcraddockParticipant]

I have managed to get one years world wide travel insurance, including USA, for a year through Columbus Travel Direct. This covers my myeloma, pneumonia ,stem cell transplant…..really pleased! All for £124

I am making the best of it as I am in San Francisco at the end of a four week trip doing the National Parks and will be going to Costa Rica in March…

 

[jcraddockParticipant]

I had my stem cell transplant at Kings in November 2014 and still going strong. First of all the staff are fantastic and will always answer all your concerns. Here are some suggestions that I found useful..buy the 1 month wifi card and take in iPad ,Kindle,mobile..get onto FaceTime and practice using it with family before you go in. There is a television in every room..all these things will help to pass the time. There is a small fridge with a little freezer in your room..ice cold drinks are a relief and ice poles when you have the chemo..helps reduce mouth ulcers . Get your hair cut / shaved before you come in..and buy soft cotton hats to wear ..e bay! Toilet wipes,incontinence pants..sometimes your body reacts to the stem cell infusion and saves asking staff for a bed change in middle of the night..may not happen to you.

am happy to answer any other questions..hope this helps

[jcraddockParticipant]

Hello,

I had my stem cell last November in Kings. your mum will probably be in for three weeks. The staff were great and the room had a TV and Wfi connection.

Things that I found useful:-

Thermos jug for ice, Tena pants,toilet wipes,boiled sweets for actual transplant,cotton sleeping hats.

For the boredom it will depend on how she feels each day..there is a trolley that comes round everyday selling newspapers and magazines. An Internet connection if she uses e mail,FaceTime or Skype.

your mum could write a manual on how to manoeuvre the drip trolley..could never understand why all four wheels wanted to go in different directions!

it is a big emotional roller coaster but with the staff and family your mum will be fine.

[Author]

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