Hi I have had tiny hard itchy spots all over me since my transplant 8 months ago and was told 'this sometimes happens for some people' – no idea why! It's not red though and doesn't look like an allergy.
I'd keep showing the docs to make sure there is no allergy going on, mine is beginning to lessen now and some of the spots are disappearing…[Read more]

Hi Debs
Hope you are well, parcel in the post to you with a few raffle prizes…… They look more suitable for a to bola to me but do with them what you wish:-D
Love Helen

Hi Duncan
Sorry for not replying.

You have a lovely dog,it will be a great help to you in your recovery,as you have to take the dog for a walk and this helps.

We are based in Deal Kent,but Slim knows Bovi Sands well based in Torpoint, in 40 and 42 commando units once upon a time
I have some problems not connected with myeloma,so will be…[Read more]

Hi Stephen

Sorry for not welcoming you to the site earlier,as I have had a few problems myself,its my husband who has Myeloma.

They say myeloma is such an individual illness and everyone reacts different to the drugs involved,I can only tell you about Slim my husband.
he was on CTD had 6 cycles and looked if he was in remission,bloods and…[Read more]

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

Dear Eve and Slim

What an awful shock. I am sovery sorry to hear your terrible news. My love, thoughts and prayers are with you and your family.

Love Jwan xx

Hi Tina
hope your journy is a good one I struggled mostly with the dex and had mood swings and found I could not sleep very well I took dEX with yogurt which made it easier to swallow I managed to take 100mgs of thalidamide for a year after CDT until my feet got red hot so I had to stop good luck
And keep well:-)
Regards Jo x

Dear Sally

Welcome to this web site it must have been a big shock when you relapsed
I think its something we are all waiting for it feels like the sword of damacles hanging over me and I know I will be still shocked when it happens
because I think we just hope it will stay away I have not been on Velcade but I expect that will be my next…[Read more]

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…[Read more]

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…[Read more]

My picture is huge and I use Safari

Jean

Hi Ann

Welcome to the site. This is the place to rant, ask advice or just to talk. I know what you mean about hubby not going on site. My husband Frank was diagnosed in 2006 – not on treatment yet, but going for CAT scan and retake of bloods tomorrow. I cannot get him to go on forum. I give him info that I have gotten from friends on here but…[Read more]

Hi Trisha

try MIA insurance I have used them a couple of times my insurance is a bit higher than Helen as I also have Chronic renal failure due to MM Mia seem to insure you if you have the Doc's permission to travel their number is
01268 783383 you could get a couple of quotes
Regards Jo x

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

How is it going Eve
Love Helen

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

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…[Read more]

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

Hi Phill

My husband (also SMM) went for a session of physiotherapy at Belfast city Hospital (recommended by consultant). He was in agony – he said that he felt that he had been electrocuted. The only relief that he got was with a Chinese doctor who researched Myeloma and then carried out treatment which included accupuncture. He swore by it.…[Read more]