Hi Helen.
I’ve got to say that your consultation sounded very much like the one we had with the prof. almost 2 years ago. He did scare us a bit and was pushing us towards an Allo since my bone marrow was to battered to be considered for an auto. Though in my case a match for an Allo couldn’t be found.
I had 22 cycles of Revlimid and though it…[Read more]

Thank you Rebecca, all good advice and you are right, some of the information out there is very scary. I have found this site very helpful and hope that in future I too can contribute and support others on this confusing journey.

Kind regards Karen

Hi Mavis, thanks for that, that’s the trouble with MM, it’s a real lottery.

Hi David

Thats great  to hear ist finished but as I said when you started it ” No Rush to Use It” al keep checking and see

Take care David and stay well

Tom Onwards and upwards “Vasbyte” x

WoW Sarah

What a photo well done you its a great one I can tell you.

Good Luck to M now its on the go, its tiring in hospital as it is let alone the regime that M is going through  and am sure you all know I wish him luck and few side effects on his road to remission

Love Tom Onwards and upwards xx

Hi Sal
I’ve had DTPace. I was stuck in hospital for the 4 days with all the infusions going on 24/7 You don’t get much sleep with the alarms going off all the time! And going to the loo is an experience and requires a lot of dexterity. Don’t know his you’d manage if you were in a rush!
I only had one cycle as it was deemed not to have worked. I…[Read more]

Hi Helen
Sorry to hear that you’ve relapsed. You really have had a hard past few years.
Speaking as someone who doesn’t know what it’s like not endure the round after round of treatment, except brief spells when I was to ill for the treatment, I get really jealous of those who go into remission. As you know I’ve been through the myeloma handbook…[Read more]

Hi Jeff,

hope the news is good with the Revlimid. Don’t know enough about it to offer true optimism but my medics believe in it.

Hi Lois

I think it’s a great idea about providing a book with hints and tips on living with myeloma. I don’t know how you are going to organise so many different comments from all of us, but perhaps you might consider placing the suggestions under various headings such as coping with myeloma, first line treatment, stem cell transplants,…[Read more]

Hi Helen

I think you have coped so well continuing to work whilst going through a second round of treatment, especially with the various side effects which you have suffered. It must be so difficult balancing your work, family and myeloma treatment. Hopefully occupational health will come up with a good retirement package for you to consider…[Read more]

Hi, interesting point michellew, suggest you look at these sites:
http://www.cancerresearchuk.org/cancer-info/cancerstats/keyfacts/myeloma/
http://publications.cancerresearchuk.org/downloads/Product/CS_KF_MYELOMA.pdf
http://www.cancerresearchuk.org/cancer-info/cancerstats/types/myeloma/.

Suggest that these figures show that it is uncommen…[Read more]

Hi Ang,

Doing Ok. had a 2nd opinion a couple of weeks ago because my SCT had not been particularly succesful the medics wanted to do another. – My IgG had only dropped to 23, they were 36 I believe before the SCT so the difference was minimal. Since the SCT I’ve had 3 blood tests and they have shown IgG stable at 23 so the agreed route is no…[Read more]

Hi Ang,

hope the run goes well. ironic isn’t it that such an awful illness could infact help improve the fitness and health of others 🙂

Hope the BMB goes well, what have his blood tests shown since Graham came out?

Hi Helen

I’m really sorry to read that you have relapsed. Have your light chains jumped considerably, or are they slowly climbing upwards? You must be so worried and anxious about starting another treatment. It’s such a shame that you couldn’t have a longer period of remission for your body to recover before you start more drugs. Do you think…[Read more]

Evening Izzie, it takes me a while to get going in the morning, I usually have to stretch etc it is a bit of an effort getting downstairs. Usually sit for a while, have several large cups tea, sometimes take two paracetamol, but then take the dog out for an hour or two across country!
Since diagnosis just over two years ago I have been on…[Read more]

Evening, I too came out in a severe rash with allupurinol, I was taken off it immediately and not given a substitute, mind you I didn’t have any kidney problems. However thinking back at each check up they did look at kidney function, so presumably if there was a problem I would have been given an alternative.
Regards
Tony F

Hi. I had a collapsed vertebrae T7 and I ended up having a Kyphoplasty operation. The minute I came round from the operation it was instant relief. It was definitely the best thing to do as 3 weeks later I had a stem cell transplant, without the operation I don’t think I could have done the SCT. It’s worth considering – good luck

Richard, Thankyou so much for this encouraging post.
I was 49 when I was diagnosed with MM in May 2011 and had CTD and a STC in February 2012.
I haven’t looked back since and have been drug-free for about 18 months.
Fortunately I was fit and healthy at point of diagnosis and have been positive and upbeat since day one. It definitely helps.
I take…[Read more]

Hi Maureen,

At least you know what to expect from the Velcade, as for me, my consultant tends to stick with the blood figures and so I don’t get to know what my light chains are doing. Maybe I’m just a bit weird where the FLC don’t give a good enough indication of MM.