Hi Sarah
Welcome to this site and sorry you have had to join. I was diagnosed with mm in February this year and am now recovering from SCT.
Do you want info on the stem cell collection or on the high dose chemo and stem cell rescue (SCT)? And which area of the country are you as there are probably local variations.
Helen

Hi Caro
My sister is in whangaparoa near Aukland I always planned to go but never got. I'm just 10 weeks post SCT and beginning to get some energy back. One thing I am planning is my trip to NZ next year i hope.
Helen

Hi Debs
Good to hear you are in VGPR and have been getting out and about, I'm a bit set back this last week, terrible cold and another bout of colitis, so another scan today, probably a virus attacking the weak spot. I'm very frustrated with the slowness of recovery so it is good to hear you are feeling so much better. Are you still in the…[Read more]

Dear Gina
What an awful shock for you, I do hope you get things sorted so that you can get the most from the time you have with your mum, thinking of you.
Helen

Hi Kay
I'm 10 weeks post sct and still walk like an old lady! I just keep popping the paracetamol and walking at least a mile a day too. Improvement is much too slow for my liking, I keep wondering if I'm turning into a softie!
Helen

Hi Jim
I took the trial route, hard decision but glad I did. Took revlimid and had no major problems, worked until stem cell collection, now 10 weeks post sct and been in complete remission since month 3 after starting in feb. I'm just 57.
Helen

I wasn't really told to stay away from people, I just tried to be sensible and stayed about 5 feet away from everyone. I went wherever I felt like, which wasn't much, I have picked up a cold this weekend but no idea where from as i've been giving anyone with any overt illness a very wide berth and I'm still very tired very…[Read more]

Hi Sandy
How big and how many spots? I have small round hard spots on arms legs shoulders, pin head size, very itchy. I had my sct 9 weeks ago and my consultant said these happen to people after transplant but there is no clear reason for them. If you have a general rash I'd see the doc tomorrow.
Hope this helps and you are recovering well
Helen

Hi Gilly
What has the occupational health doc said? Your manager is obviously not your physician so how should she be making a judgement of any sort?
Does the hospital you attend have a social worker attached to the oncology unit as they are usually very helpful
The caring NHS eh
Helen

Hi Caz
Is your family from New Zealand?
Helen

Hi Caz
Welcome
Re diet- as good as possible seems the best, if you feel like eating, some do some don't. On the dexamethasone days you may find you can't stop eating! You don't say if you are heading for SCT! If you are you need to keep as fit as possible as it can be a bit of an ordeal and you may need all your reserves.
I found myself…[Read more]

Hi Debs
Like the new photo, very cool, and glad to hear hair is starting to grow, still don't know how to load pics on here and the family tech is proving difficult to pin down….
I'm losing eyelashes now but have still got eyebrows and no hair on head but wait in hope! How did table top sale go?
Helen

Dear DeeDee
As Min says, here is the place for sensible help. 10 weeks is not long to get used to the life changing effect of this disease on someone you care about, you will still be reeling.
I was on Revlimid on myeloma xi and it is not easy, I can't stress the importance of him taking his temperature daily and when feeling more hot or cold,…[Read more]

Dear Eve,Dai and Sue
What a valuable source of sense and strength you all are. It helps to maintain optimism. I look forward to forgetting about myeloma even if only for a few hours:-/ And I too will raise a glass, water of course as wine still tastes terrible, to long journeys, made easier by good companions.:-)
Helen

Dear Eve
It is also 1 year since I began my journey, rejected by blood bank because I was too anaemic to give blood and sent to my GP for tests -these came back in the second week of October and I was sent to haematology, no diagnosis just the start of a very anxious time. I still find it hard to believe that I am in this position! I look in the…[Read more]

Hi Debs
Yes I'm getting hot flushes, before diagnosis they were just at night and I thought it was menopause, so did my GP. Now I get them all the time and the haematologist thinks that as my blood has returned to normal I'm resuming the menopause again. I've been experiencing them for the last 5 years and never thought of hrt as there was such a…[Read more]

Bridget I feel I get the same sort of response where I am and am fully consulted too, but I can also see where there are holes in the system, as you say Eve the places are so busy with far too many patients and nurses very pushed for time, as for pharmacy….. I sat in the very crowded waiting room after my sct thinking I was more likely to pick…[Read more]

hi sandy
Hope your stay in frh was ok, I was there a few weeks ahead of you, I'm still steering clear of crowds and people with overt illness but have been to town and done the shopping regularly since week 5. Went to a few restaurants and pubs when i went away this last weekend. I asked at the hosp last week they said my bloods were all ok now…[Read more]

Hi David
There is some evidence to suggest that Zometa has an anti cancer effect ( recent oncology weekly) and all myeloma patients should go on it, the jury is still out as to how long you should be on it.
There is also a question as to should you be on it if you are in remission, as technically if you are in remission there should be no…[Read more]

Dai, Just what you needed to hear, here's to long remissions
Helen