Hi Wendy

How are things going,glad to see India is still on the cards,but I would recommend you go Vedge for your stay,they have some lovely dishes,if you Like vedge they have some lovely food.

Have you started Velcade yet,hard to keep in touch now as I try only to look in these days,looked in today and saw lots of blank spaces,wrong that…[Read more]

Hi Ozzy
Slim use to get grumpy on the dex,I would have given anything for him to shut up,so I can understand how Gayle feels. LOL

Soon be over,apart from that is the Velcade working for you hiccups were the worst thing,still is very loud and we can be any were,its 8 months since any chemo treatment and the last lot was for SCT,but those…[Read more]

Hi Maureen

So glad things are looking up for Ian,lets hope it will not be to long before he can forget the wheelchair.
When Slim used a wheelchair it was hard to see how he would start walking normal again,but he did,it was the summer so it made it easier,I use to take him out very early to begin with,had extra weight because the dog wanted to…[Read more]

Hi John

I started on tablet bisphosphonates over two years ago and then went onto infusions of zometa. I have had no side effects from them. The only problem is, if you need invasive dental treatment, which I did, you have to have zometa knocked off for two month before and two months afterwards. This is to prevent getting the disease in…[Read more]

Dear Dai

Glad to hear a more hopeful report from you. Do hope things continue well so you can plan a break later in the year.

Dear Jo.

Sorry to hear you have had a spell in hospital. Do take care and keep knocking the beast back.

Love to you both.

Mavis x

Dear Wendy and Ozzy

So sorry to hear that you have both relapsed. I can imagine how gut wrenching it must be. I do hope that the next lot of chemo works for both of you. And, Wendy, I do hope you get to India.

Just spent the money we would have used to go on a holiday last year, if we could have gone, on a new computer for my husband.…[Read more]

Hi Sue

I am glad to hear you are, at last, getting some support with Michael's care and like Tom, hope you get to visit the Hospice soon. However, now you have got more suppport at home, and you are having a stair lift put in, you may feel happier with Michael remaining at home.

Sorry you still haven't got the answers you need to put your…[Read more]

Dear Sal

I am so sorry to hear of your loss. It is so sad that your Dad lost his battle so soon after starting treatment. I do hope you can take some comfort from the fact that the battle is now over and he is "at peace". I am sure you and your family have lots of happy memories, of times together, to help you at this very difficult and sad…[Read more]

Hi Vanessa

Once you have had SCT you are again randomised for maintenance or not. My husband got no treatment,at first I felt he had lost out,but it does give you more time away from the hospitals.

He now goes for Zometa every 2 months boods and urint taken for trials plus we try to get appointment with consultant the same week,so that…[Read more]

Hi Vanessa

Sorry you have Had to join us.

I can only tell you the chemo keeps on working after the cycle is finished.

My husband finished chemo a year ago around Christmas and he had gone down to 6 he did not have his SCT until May I between all this he had another blood test taken and it was 2. I was worried at the time they were taking…[Read more]

Hi Grayham

Yes it is very scary,I think we all felt like that even careers,specially when they tell you there is no cure.we have all been there got over the shock asked the same questions ,my husband was like you,never took a pill or had a headache,well he has made up for it in the last 2years,our home has seemed like a chemist at times.

It…[Read more]

Hi Tom and Helen

I have always thought that soft tissue myeloma is very very rare ,there have been a few people on here with it usually discovered because of another reason,not looking for Myeloma.
Tom are you saying you have no Myeloma showing in bloods or urine?????
So are you looking for answers????
A Pet scan will show any Myeloma in…[Read more]

Thank you helen for doing a better job of explaining it than me,although I understand why Tom is thinking along these lines,I just felt it would give the wrong impression to any one who read it.

I would like to say,Slim has a lot of damage,tumour plus lesions on shoulders and skull plus all spine damaged but no compression ,plus Pnuemonia…[Read more]

Hi Keith

You must be so disappointed ,but they are prepared to still top you up with bloods and platelets,so that must count for something,When do you see the top man again???
They are trying to give you the best chance of this working,if they are prepared to do it,you have to go with the flow.
Anyway who wants to go on holiday with all this…[Read more]

Hi |Tom
The school of thoughts with consultants is you should not,look at staging as the one and only aspect of myeloma ,as far as I know,staging tells you not only about bloods and urine,but the extent it has damaged the bones.
Everyone is aware the early cancer is caught the better the chance of curing it,but Myeloma is not curable.

Once…[Read more]

Dear Sue

What a bad time you have had. Like others I can't understand why you haven't had the help you needed before now. Releived that some help is now coming. If Michael doesn't go into the Hospice the Social Services should get a Care Plan in place for you even if you have to pay for some of it. That's why you should be getting DLA.…[Read more]

Hi Ozzy

Yes, I too had a bit of a husky voice while on CDT. Glad to say it is now back to normal. My eyes were also a bit cloudy sometimes. Also gone now.

Best wishes.

Mavis

Hi susan

I have got a bit confused with this post. My experience is that my mobility problems are because of bone problems and not because of drugs. I have had soreness with my toes and bottom of my legs. I have found it difficult to find comfortable shoes – in fact I haven't!

All best wishes.

Mavis x

Hi Lesley,

Just wanted to say welcome from me. I went down the traditional route of CDT which worked well for me, but I am full of admiration for those of you who go on Trials. I do send you my best wishes and hope your experience is one of the really good ones!

Love Mavis

Hi Wendy and Ozzy

Sorry to hear you have both relasped there is not much one can say you must both be devastated,I can tell you Velcade is a good drug and seems to be having a good effect on the Myeloma,Slim got on better with the Velcade than CDT,he had 6 cycles straight after CDT,because they found the myeloma had gone up to 80% in bone…[Read more]