[susieParticipant]

Home from having 3rd velcade. The nurse said my bloods were fine but I’ve just noticed the neuts were only 1.5. Wouldn’t you say this was low. She went ahead and gave me the velcade though.

What experience has anyone had with Neuts at this level. I’m rather concerned.

Best wishes to all

susie

[greg777Participant]

Hi Susie,

Neuts at 1.5 are getting on the low side, but in my experience changes to plans only take hold if it goes below 1.0 – take care of yourself though as you are going to be at greater risk of infection. Did they mention clean diet to you yet?

All the best,

Greg

[susieParticipant]

Thanks Greg. I’ll take care. No one has mentioned anything at all about diet. What is a clean diet. I’ve never heard of it.

susie

[greg777Participant]

Hi Susie,

You should follow a clean diet to avoid infection from your food when your neuts get too low – sorry, I can’t remember the thresholds – it normally kicks in after SCT but is good advice if you are getting towards being neutropenic – a lot of it is common sense – washing fruit and veg, not going past sell-by dates, avoiding shellfish – that sort of thing. Myeloma UK will probably have a brochure on it somewhere. But check with your medical team first, as I can’t remember when the advice is for it to kick in – but they will know.

Greg

[greg777Participant]

Hi Susie,

If you search for neutropenia in the search bar, there is a booklet on it – it looks like it only kicks in if the neuts go below 1 so I don’t think it is relevant for you – but maybe worth a read to know what to look at for?

Greg

[susieParticipant]

Hi Greg

I’ve had a read of it. I’m pretty obsessional on cleanliness and oral care anyway. I get the impression the time to start worrying is if it drops to 1 or below, so I hope it doesn’t do that before I go next week. I’m a right worrier.

Enough of me though, how are you doing.

[greg777Participant]

Hi Susie,

i’m doing good thank you. Almost 18 months since my allo transplant. 3 monthly check-ups now. Just trying to keep up to date with developments and helping others out if I can. Treatment is tough whilst you are in the middle of it, but it is surprising what the body can put up with and come out the other side – keep plugging away.

Greg

[susieParticipant]

Hi Greg

Had my 4th velcade today. My Neuts are now 1, however they went ahead and gave the jab. The doctor said she checked bloods and protocols and they only delay the next jab if Neuts go down to .75. The remaining bloods aren’t too bad.

I have a rest week before I go back to the hospital, so I just have to make sure I don’t pick up any infection meantime.

How I hate all this. I had an awful weekend with extreeme acid reflux and vomiting. Didn’t know if it was the meds, an infection or some chicken I had eaten.

Hope you are keeping well.

Best wishes

susie

[greg777Participant]

Hi Susie,

i’m sorry to hear about your neuts and the vomiting. Any concerns at all, please share them with your medical team as they will know what to do. Treatment is rubbish but keep hanging in there, hopefully it is doing the trick of putting the myeloma back in its box. And things do go back to normal once treatment ends. I am 18 months post-transplant and to all intents and purposes my health is pretty good at the moment so it can definitely be done.

Hope you enjoy your week off as best you can.

All the best,

Greg

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