[mhnevillParticipant]

Hi John

Welcome from me too. Welcome to June too. So sorry you have to join us. It is good June has started treatment so soon. Interesting that it is VAD. I guess most of us on here started with CDT. Shows how things are already moving on.

Take heart, though the chemo Isn't a walk in the park it does usually knock the MM right back after a couple of cycles.

Have you any reason to think they might stop the chemo early? They won't unless there are serious side effects.

All best wishes to June and keep in touch. June looks very young so may find the under 50s strand helpful.

Mavis

[mhnevillParticipant]

Hi Tibby

As you've asked the question, my protein level was 13 on diagnosis and didn't get very high even when I started chemotherapy. However,I did have lots of bone damage and had a tumour on my spinal cord. This is a very individual disease. My Consultant said that the speed of the PP movement is more important than figures on their own. However I read once on here that 50 was an indicator that treatment was necessary.

Had you thought of ringing the MUK helpline. I am sure they would be able to give you some good advice.

Lots of love as you get your head round all this.

Mavis x

[mhnevillParticipant]

Hi Dee

Sorry you are having such a difficult time. It is hard to see someone after they have died. I agree it does look like only an empty shell is left. It's what makes me believe the real US survives elsewhere, but maybe you find that hard to accept.

I remember being so angry when my mum died that I nearly broke a tilt and turn patio door in the hotel we were staying at for the funeral.

Be kind and patient with yourself.

Love to you and your family.

Mavis x

[mhnevillParticipant]

Hi Ceri

Just to let you know that there are some of us out here rooting for you at this difficult time.

Sorry it is so distressing to see your Dad so weak and confused. I think you will find that you have the strength to cope when you really need it. You will be able to turn onto your Dad's needs and put your sadness aside till later. Remember this will be the last thing you can do for him and offer any visits you make as a gift of love. It will really help you afterwards if you can do this.

You have my prayers for all the family

Love

Mavis x

[mhnevillParticipant]

Yes,great news Tom. Go well and into a long and healthy remission.

Love

Mavis x

[mhnevillParticipant]

Hi Jean and Frank

So pleased to read your great news.

You get that holiday booked. I feel so much better after my first for three years. I had to go without insurance for myeloma, but as we were going to Europe I was happy to take the chance.

Lots of love.

Mavis

[mhnevillParticipant]

Hi Annette

What you are going through is quite normal. You wouldn't be the loving daughter you were if you didn't bemoan the fact that MM ever came into your Dad's life.

So glad you were all able to say goodbye that is precious.

Hope your funeral arrangements go well. The last thing you can do for your Dad. I hope it is a fitting celebration of his life.

Love

Mavis xxxx

[mhnevillParticipant]

Hi Anthony

Sorry to hear about your troublesome knee. I found that while I was on Dec as part of CDT my arthritis pain in my replacement hips improved sad it hasn't worked for you. It is early days with your knee and they are notoriously worst than hips to get going again and to get free of pain.are still ale to do your exercises? If things don't improve ask to see your Orthopaedic Consultant sooner.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Christine

I had very swollen legs when on CDT but did return to normal once treatment stopped. They tried water pills it I wasn't keen on them.

Are your red legs burning because I have just had cellulitis and these were the symptoms.

Hope CDT kicks the MM into touch, and good luck as you wait for your SCT.

Love

Mavis x

[mhnevillParticipant]

Hi Dai

As you say, whatever it takes. Enjoy these few drug free days.

Hope the blood readings are good and that your Consultant is inspired! Sorry to hear on another post about your playing. Can you keep singing without accompanying yourself?

Lots of love.

Mavis x

[mhnevillParticipant]

Hi David

So sorry to hear your latest news. Hope you can get some straight answers. Has anyone suggested yo try your initial treatment again? Iam sure I read somewhere that a repeat was a possibility. It might be better than rushing to Revlamid.

Glad you are getting your holiday in it is these things that count. Have a great time and try and forget the dreaded MM for a bit.

Love

Mavis x

[mhnevillParticipant]

Hi Susan

Like Jo I haven't gone down the route of SCT. I am over a year post CDT and I'm still in remission. I would keep your options open but don't be rushed into SCT. I think there is a balance to be struck between drug free living (zometa exepted) and the hope of a long remission. Everyone has to make their own decision about this.

Very best wishes.

Mavis x

[mhnevillParticipant]

Hi Dai

In response to your Post I must say that I have always found it hard to understand why each country has to do its own Trail. In this cross country sharing why can't we accept one another's research? I suspect this is down to money, but maybe I am being cynical.

I do think when folk like you are running out of options these novel drugs should be available and that should e the Trial. Isn't there a special pot of money for this? If not there should be.

One way we could lobby could be via the 38 Degrees web site and put up a petition.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Terry

Interested in your post. That sounds like a lot of drugs. All best wishes.I am so grateful to all of you who go on Trials.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Christine

Welcome from me too. I was diagnosed at 65 started CDT about 15 months later and have been in complete remission for nearly a year. For lots of reasons I have not gone down the SCT route, but I do wish you well with yours. May it lead to a long remission.

Love

Mavis x

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