[mhnevillParticipant]

Hi Robin

Sorry you have had to join us on Jim's behalf and that he has had such a trying time. The important thing is that you now have a right diagnosis. The treatment isn't fun, but many of us are in remission because of it. – myself following an op to remove a tumour from my back, then radiotherapy followed, quite a bit later by CDT for six months.

All best wishes to all the family at this difficult time.

Mavis

[mhnevillParticipant]

Hi Dai

Sorry for another blip, but at least they are saying they will proceed to treatment three when time, so not all bad.

Very best wishes.

Mavis x

[mhnevillParticipant]

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 your jaw bone, which is a possible side effect.

All good wishes.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

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. Not the same as a cruise, but hopefully it will make up a bit for the fact that he too had to do without going away. As I am currently in remission, and my mobility is improving, so we are hoping to get away somewhere this year. I think not being able to plan a holiday is one of the worst things.

Love to you both.

Mavis x

[mhnevillParticipant]

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 mind at rest. I think it is important that you write down what exactly you want to know, so that you can get the answers eventually.

However, you probably wouln't want to be putting Michael throught the trauma of any more treatment, with all the hospital visits etc. involved, if it won't give him any better quality of life.

You both remain in my thoughts and prayers.

Mavis xxxxxxxxxx

[mhnevillParticipant]

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 time.

Sending you my thoughts and prayers.

Mavis x

[mhnevillParticipant]

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. Glad the MacMillan Nurse is at last on board to help.

Lots of love to you both.

Mavis x

[mhnevillParticipant]

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

[mhnevillParticipant]

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

[mhnevillParticipant]

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

[mhnevillParticipant]

Hi Keith

Well done, that's one down. How many are you expecting?

All best wishes.

Maivs x

[mhnevillParticipant]

Hi Tina

Very interested to hear you are on the Trial. Can't remember, did you have a SCT?

Sorry you have got this annoying itchy side effect! Hope the alternative treatment works for you. I wish you a long and event free remission.

All best wishes.

Mavis x

[mhnevillParticipant]

Hi Jenny

Sorry you are feeling so crap at the moment. Sorry I don't have any experience of your particular regime, but wanted to send good wishes. I'm sure that someone will come along with some sensible advice, but do let your medical team know how low you are feeling so they can help.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Susan

So sorry that you have been diagnosed with MM, but welcome to the Discussion Group, we aren't a bad lot! I find it very helpful.

I finished six rounds of CDT on October and responded very well and am currently in full remission. I just had two Thalidomide tablets each night. I had always decided not to go down the route of SCT and have had no pressure put on me. That is probably because of my age (nearly 68) and other health problems. There is a view, put forward quite strongly by one of the leading Consultants in America, that SCT isn't neccessarily the best route to go for. I wonder how old you are?

The good thing about this site is that you will get a variety of views.

All best wishes.

Mavis

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