[mhnevillParticipant]

Hi Sarah

Though I can't add anything to all the good advice and information you've been given, I just wanted to welcome your and Henry to this site and wish you all the best as the treatment progresses.

It is a sharp learning curve.

All blessings.

Mavis

[mhnevillParticipant]

Hi Dai

Like everyone else I am grateful you have taken this on.

I agree that getting results is very important to how in control we feel. Yesterday I got them from a nurse on s napkin!! She took them off the computer because I asked her. I nromally have to wait two weeks to get my para protein results and this is after my Consultation. I will give my Consultant her due, she does write and give them to me, but I agree it wuld be better to have them at the time of the Consultation.

Hope you are feeling better yourself.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Gina

So sorry that your Mum has taken this turn for the worse. I do hope you have a good converstion with her Consultant. One thiong I would say, although it's not easy, if they suggest not to do very difficult treatment that you go with it. There does come a time, hopefully not yet for your Mum, when the treatment comes worse that the illness. Sometimes being as pain free as possible is more important.

All love to all the family.

Mavis

[mhnevillParticipant]

Hi Mal

What good news that Mal is now home. Do hope next weeks go well.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Ted

Just to show that I have appreciated the fact that I don't need to scroll down such a long list! Maybe others know how to do it quicker. It seems to take me ages.

About questions – I am only just a year into this business and wanting to delay chemo, apart from zometa, for as long as possible, Because of all the anxiety I feel each time i go to the Consultant I asked last time how high my paraprotein would need to go before she recommends treatment. Her answer, as I posted elsewhere, was it wasn't just about numbers, but how quickly they were moving. Have you ever had that kind of conversation?

One other thing. I have been reading in the latest Myeloma Matter about the results for Myeloma IX Study suggesting that lower dosage CTD is just as effective. When I do need to have tratment, I do hope I get at least five years like you, that I will ask about this.

Again, all best wishes for next week. Look forward to hearing how it goeas.

Mavis

[mhnevillParticipant]

Hi Jenny

Welcome from me too! In view of the fact that you haven't had any support you seem to be be doing very well and keeping in good spirits. As Bridget say, keep your eyes on the goal of a long full remission. You will get there.

I am interested as to how you got diagnosed. Were there health complications and what was your para protein reading and what have they got down to now?

There are lots of very brave folk on here who are willing to share their experieinces and tips re SCT.

All very best wishes to you and fix your mind on a very long future – MM isn't an immediate death threat; which I thought at the beginning.

Mavis

[mhnevillParticipant]

Hi Ted

All best wishes for your appointment next week. I got an extension to three months thids time, but I know how it feels when appointment looms. One good thing is that now I am having Zometa injections I have a blood test each month so can keep an eye on blood results apart from PP.

By the way, yours must be about the longest thread to scroll through! Perhaps you should start a new thread "not so new to site"!!!

All good wishes.

Mavis

[mhnevillParticipant]

Hi Kay

Like others I'm pleased to hear that over all your SCT has gone well. I know bone pain can be so debilitating and depressing. Hold in there and do make sure you are given good pain killers. It does take a lot of patience to find the best for you.

Be kind to yourself.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Chrisitne

You all do right to get SCT put off till after Christmas. Last year they wanted to start my radiotherepy days before Christmas and I held out without any noticable effects. I think Consultnants sometimes forget how important these family times are and this will be especially good for your father if he is feeling better then after the Velcade.

All very best wishes.

Mavis

[mhnevillParticipant]

Hello Dai

I had missed your post because BT cut off my Broadband!!! So sorry that you have had this bad infection. Do take care. Really want to hear that you are in a good place and feeling like your old (young!) self.

I'm off for my flu jab tomorrow so hope I fare better.

All best wishes.

Mavis

[mhnevillParticipant]

Hello Dee

Glad to hear that Mike is feeling a bit better. The trouble with Myeloma is that none of us will have heard of it before we were diagnosed. I agree that getting as much knowledge yourself is very enpowering. I find the Myeloma beacon Site (USA) very helpful – they have links to interesting videos.

Another thing to keep in mind is that prognosis is so much better today than even a few years ago.

Very best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Jim

Like David just wanted to wish you well. If you join the Trial I hope it goes well and brings dreaded MM under control.

Very best wishes.

Mavis

[mhnevillParticipant]

Hello Elaine

I'm glad you have decided to join this site. I am sure you will fimd it very helpful. You haven't said which treatment you are on. If you share this I am sure there will be folks who can compare notes about side effects with you.

Do be kind to yourself and don't try to do too much while youa re on the chemo.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Caz

Sorry you have had to join this "merry" band. I was interested to hear of your journey thus far as I also was diagnosed following a plasmacytoma and RT. Was the break the thing that heralded your MM progression? Had your paraprotein levels jumped up? I am currently having zometa monthly (starting last month) before that I was on bonefos tablets for my bones, apart from that I am just being monitored.

I do hope that your new CDT treatment puts you into a full remission quickly. How great that you were able to make the trip to NZ.

All very best wishes.

Mavis

[mhnevillParticipant]

Dear Eve (and Slim!) and Helen

I'm sure you have both found reservoirs of strength this year that you didn't know you had. Hang in there and enjoy the good times. I remind myself often that "this is the day"!

May there be many more years and may they be good ones.

Mavis

[Author]

Posts