I was in isolation for three weeks, before going in I downloaded some good books to Kindle, took my iPad with me. There was a radio and TV in the room, so daytime TV got a temporary new viewer!
When I returned home we were careful with surfaces i.e. loo, door handles etc etc. I seemed to sleep a lot, didn’t eat much for a while, after about 6…[Read more]

Leicester Royal Infirmary send me a letter after each consultation, briefly outlining the subjects that we discussed, if any treatments were recommended but most importantly all the blood readings.
In the myeloma diary page 15 there is a chart showing the normal blood readings, so its easy to compare.
Why don’t all hospitals do this. It certainly…[Read more]

Maureen, the very best of luck to Ian, oh and to you, you are the carer, and at times I think that the carer needs more support than the patient.
You know from past postings that a SCT is not a walk in the park, but it can and is doable, I am sure that Ian will cope with all that is thrown at him.
Good luck Ian
Regards
Tony F

Evening Beverly, I had exactly the same reaction as you have had, it turned out to be allupurinol that was causing my problems. So I was taken off it.
Regards
Tony F

Hi, although it was a couple of years ago when I was on the myeloma XI trials, I felt exactly the same as you, but it did vary through the cycle, I put the blame on the treatment not the myeloma.i know it’s easier said than done but I tried to rise above it! Going walking helped!
If it’s any consolation it won’t last, the treatment bought my pp’s…[Read more]

Good evening, what a way to spend Valentines! I know it’s easy to say, but please don’t panic, mm will not overtake you, why not wait and see what the consultant has to say before you reach any decisions. Is your husband still mobile and can he fend for himself, ie cook, go to the loo, shopping, go out for walks etc etc. if yes then let things…[Read more]

Hey,Shabbyneil, noticed that you live in Ashby De La Zouch. We are in the process of reforming a Myeloma Support Group in Leicester and are looking to recruit members. Would be good if you could join in.
For more info I can be contacted on: tony.farquharson@btinternet.com
No pressure but look forward to hearing from you.
Regards
Tony F

I believe that you have to remain positive, if not for yourself, then for those around you. My paraprotiens were at 44 prior to SCT, three months after they were below 2, perhaps not what I wanted. I was/am on the myeloma XI trial, I opted for no maintenance drugs and two years later I am still on NO treatment, I visit the clinic every three…[Read more]

Hi Amanda, I am sure you will get quite a few responses to your request. Let me tell you how my SCT went. Prior to harvesting I was given four injections, one a day, to boost the blood cells, the evening before harvest I was given a final injection, very expensive, evidently. Was hooked up to the unit, and off we go, I spent two days having the…[Read more]

Hi, your post is interesting. I am the opposite to your husband. I was on myeloma XI trial, had a SCT two years ago, after long discussions with consultant and trials drug nurse I opted for no maintenance. Have had one infection over those two years, pps never went much below 2.0 and are slowly rising currently at 4.9. No talk of any further…[Read more]

Evening, had my SCT exactly 2 years ago. Was/am on the myeloma XI trial. See my consultant every 3 months, not on any drugs have penidronate infusion every three months, it is being changed to zometa this month. My Pps never went much below 2, last reading three months ago was 4.9. Other readings must be okay because consultant has not recommended…[Read more]

Well, perhaps not a good idea to go swimming in a pool. We were on holiday, I went swimming, had a sauna etc and lo and behold two or three days later, wallop. Probably the worst infection I have ever had, laid me low for ten days! Couldn’t put the infection down to anything but the swimming.
But hey we are all different.
Regards
Tony F

I really do not think that this discussion forum is the right place to bring up such a subject.

Evening Chrissie, so your pp’s are at 23 and you are not on any treatment. Can I ask, have you been on treatment, if so have you had a SCT?
I was diagnosed 3 years ago, put on myeloma XI trial, had a SCT, pps were down to 2. That was almost 2 years ago. No treatment since the SCT. Pps now at 4.9. Specialist doesn’t appear concerned, still no…[Read more]

Same thing happened to me, very annoying.

Hi Dawn, I too attend the Leicester Royal, unlike Jeffrey I am on the myeloma XI drugs trial via the NHS. There is a special clinic for those on drugs trials, financed I think by a charity called Hope for Cancer ( Leicester based I believe ) I see the same consultants as Jeffrey, and like him I also have my favourites! Don’t think I ever seen a…[Read more]

Hiya Bernard, yep, been there, done that.
I would suggest that you read as much as you can on the subject, preferably from myeloma UK.
As for me, I was very nervous after the transplant specialist gave me the sequence of events and all the things that ‘could’ happen to the body after the transplant.
The harvest was easy, it took two sessions to…[Read more]

Robert the article is in the autumn issue of myeloma maters.
Regards
Tony F

Hi all, please don’t take green tea, read the recent issue of the myeloma news. It has an article about green tea and turmeric.
Regards
Tony F