[HelenParticipant]

Dear Eve and Slim
How unbearably sad for you, I am thinking of you and your family, it could not be a more difficult time.
Love Helen xx

[HelenParticipant]

Hi Ron
Zometa can cause kidney problems but so too does myeloma. The regular blood tests we have are to make sure that our biochemical and general health stays good and we have early warning of any toxic side effects. Christine's creatinine may have risen so she will probably be 'rested' from the zometa to see how her kidney function progresses over the next few weeks. Best to ask the docs if this is the case and what the plan for the future will be. better off the drug if it causes more trouble than it is worth. As with all these medicines it is a case of balancing the risks and making an informed choice.
Hope this helps, let us know how she gets on.
Love Helen

[HelenParticipant]

Hi Gill
I'm 8 months post transplant and had mucositis and a septic colitis following my sct. This is resolving slowly and i have had lots of scans and stuff just to make sure there was no permanent dammage, but I still get a lot of collicky pain. Our hospital does not do the neutropaenic diet approach at all, just experiment with whatever takes your fancy. I can't have curry, alcohol, apples, bananas, lamb and a few other things as they seem still to aggravate my tum and i have stopped all the medication, the lansoprazole made me feel more sick and bloated. Now i just take painkillers if it is very bad. There is no treatment, it's all about readjustment and getting back to normal. Some folks seem to do it quickly , others much much slower, you know, the full range of normal etc, I guess some of us like you me and eva react more than some of the others. Hope it settles soon.
Love Helen

[HelenParticipant]

That's ok, we just have to do all the things we can while we can and for as long as possible:-) Helen

[HelenParticipant]

How is it going Eve
Love Helen

[HelenParticipant]

Hi Trisha
I am covered for myeloma, but we are all different, age and other conditions apply. It was not too expensive about £160 but it is only single trip insurance and I waited until I was 6 months post transplant before I booked it. Does this help?
Love Helen

[HelenParticipant]

Hi Trish
Welcome
If your partners paraproteins are zero that's remission, if they are very low in comparison with his starting levels (ie gone down from about 30 to 6 ) then that is partial remission. Bone marrow biopsy also can show low levels or absent disease. The idea is that they stay zero or as low as possible for as long as possible. We all understand that this is a different, unknown length of time for each of us.
Does this make sense? You need to ask what the numbers are each time you go to the clinic.
Love Helen

[HelenParticipant]

Hi Patricia
I'm booked to go to New Zealand next month, I will be 9 months post transplant while I'm there. There is a list of companies who cover mm on the web site here, I just trawled down the list. The best one I came up with for me was World First.
Love Helen

[HelenParticipant]

Hi Eve
Hope tomorrow goes well, try not to worry too much and be gentle on yourself. Are you staying nearby?
Love Helen

[HelenParticipant]

Hello Carol
Thanks very much, it's interesting to know that the skin dryness and nail changes last so long. I had a feeling I had suddenly become 'very high maintenance' instead of just 'plain expensive':-D
I had a patch test for my hair but it's still too itchy, next time hopefully, then it will be lots of highlights I think. I still can't taste alcohol properly- it has a sort of peppery, chillie taste…. I think the revlimid is responsible, but it's working well and I'm not too bad on it so it's not too much of a problem. Anyway you look after yourself
Love Helen

[HelenParticipant]

Hi Jean
Photos came and went ….. Several times!
Love Helen

[HelenParticipant]

Hi Tracy
Jean is right, just wait someone will usually come along, I saw your post, but as a sufferer I thought another carer might be the more appropriate person. I had my sct last August, I can sympathise with your partner, I could not bear to eat or drink properly for weeks. It's a very stressful time, but you are soon to become an expert in the field, so no doubt we will see lots more of you.:-)
Love Helen

[HelenParticipant]

Thanks Tom what a cheeky charmer you are:-) Why did the pic not come 'on' properly do you think? Though I see it is here now.
Love Helen

[HelenParticipant]

Hi Kay
Must have been a relief to know everything was ok, even little things tend to give you a bit of a fright until sorted, :-0 I need much more reassurance these days.

It's good to hear you are doing ok Sandy even if the holiday was fraught.

And Mavis, you just show them what you are made of and get on those pins again. Those sticks could make good weapons for anyone who gets in your way>:-)
Love Helen

[HelenParticipant]

Dear Teresa
I can not even imagine how you must be feeling right now, life is so unfair sometimes, I will think of you, Peter and your family over the coming days. God give you courage my cyber friend.
Love Helen

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