Hiya Jill.

I’ve been on Pomalidomide for 17 cycles now and find the side effects very mild. I know everyone reacts differently but I’ve been through several different treatments and Pomalidomide is the easiest to live with I’ve had.

I wouldn’t take anti sickness tablets as a matter of course only take them if needed. Cotrimoxazole is is an…[Read more]

Hi Richard,
Hi Richard
So sorry to here this. I too am back on treatment, I have just started my second cycle of Velcade and Dex, I went on the MUK5 trials but got radomised the standard treatment. I know what you mean, peed off, I got 17 months complete remission after SCT, they said they don’t do SCT after first relapse, I have stem cells in…[Read more]

Sad but true!

Good result all round!

Hi Jan.

Paraprotein levels are only a part of the picture as far as Myeloma is concerned. As your husband is smouldering at PPs of 26 there’s no need for treatment. Some people live with higher PP levels with no problems and some people have very low PPs and have lots of problems. As you will come across Myeloma is a very individual disease.

The…[Read more]

Some good responses here, I guess the message is not to let this myeloma get to you!
I am helping to reform the Myeloma Support Group in the Leicestershire/Rutland area, thats keeping me on my toes!
Enjoy Easter everyone, easy on the chocolate.
Regards
tony F

I thought that it was just me getting older but yes I find it hard to concentrate for any length of time. Have been reading the same book now for weeks! I find reading short articles and stuff on the iPad, ie news etc ok, and my auto SCT was over two years ago.
Get cold feet in bed, but not during the day.
Regards
Tony F

Morning Susie, I was diagnosed three years ago, went onto the myeloma XI trial, had a stem cell transplant two years ago but chose not to go on any maintenance. So after transplant my pp’s were just below 2 after 26 months they are at 6. I had just one setback over the 26 months with food poisoning but other than that no drugs other than three…[Read more]

Live in Leicester if you consider that city only to pleased to be involved.
tony.farquharson@btinternet.com

That was meant to read Leicester Royal Infirmary.

No, no, at the royal it is a 6/7 roomed isolation unit, you have to buzz to get in, they don’t encourage too many visitors at the start of treatment, even later only two, my wife had to remove shoes and outdoor coat etc before coming into my room, and had to wash hands thoroughly. You don’t get any of the coming and going that you get in a normal…[Read more]

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]

Hi Maureen,

Good luck to Ian.

best wishes
Karen
xx

ps,

Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂

Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.

Keep smiling xx
Karen

Hi all, thought I best check in. thanks for all your best wishes. The last few weeks have been hectic, backwards and forward to LRI and general, MRI, bone marrow biopsy (IT REALLY HURT THIS TIME!), full skeletal survey. I am making the most of this week, as it is the only week I will not be going to any hospital appointments! Yippee.

My…[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

Hi Helen.

Well the Professor gave his considered opinion and SCT has been ruled out again with the same reasons as before due to the hammering my bone marrow has had due to the constant chemo. So even the my blood tests have been good they must lack in certain areas. I’ll have to get the full report from my consultant next time I see her.

I’m…[Read more]

Hi Vicki.

Just been catching up on the forum as it’s my DEX night! Though recently I’ve been managing to sleep on my Tuesday Dex nights not tonight though.

I find it strange your consultant seems to work in isolation. My consultant regularly has meetings, probably conference calls, to discuss her patients and treatment options with other local…[Read more]