[mhnevillParticipant]

Hi Jane

Hope the six regimes will be enough.

I found taking the MUK Diary open at the results page , helped with getting blood results, but even so it is a struggle. Still, even my GP can't get the. I have to have additional blood tests for them. I thought computerisation was supposed to help, but it hasn't in this neck of the woods (West Yorkshire.)

Very best wishes.

Mavis x

[mhnevillParticipant]

Hi Vanessa

Being angry is quite normal in the circumstances you and Stewart find yourselves in. However, let's hope his PP level remains at 15 for the foreseeable future so that he can keep treatment free for as long as possible.

Is there a chance of you changing Consultant? Is there another hospital nearby?

Very best wishes to you both.

Mavis x

[mhnevillParticipant]

Hi Jill

Sorry I can't help you re light chains, but I am sure someone can. Have answered to bring your question to the top again.

Best wishes to you and your Mum.

Mavis x

[mhnevillParticipant]

Hi Sue

So sorry you have had to join us and thatvyounare having so much to cope with. That said, having lived with someone who suffers from severe depression from time to time, for 45 years, Imcan imagine it would be he'll to continue to live with them if they were cooing. You would be carrying both of you and the children.

Have you had a full body X-ray at all to ascertain if there is any actual or potential bone damage? If there is you should be having a Zometa infusion once a month even if you aren't having any other treatment.

Consultants can be a pain, but the thing is to make a list of questions and insist on going through it. Is ther someone else who could go with you to some of your consultations? I went with a friend who was diagnosed with breast cancer and was able to ask questions she hasn't thought of. Also, I could remember things the Consultant had said which she didn't take in.

I was told, before Instarted chemo etc, which I wanted to put off for as long as possible, was that it was how steadily and at what pace your Paraprotein was rising, which was important, rather than just the bald figures.

I also read thevAmerican site Myeloma Foundation, and it is through their fundraising activities and the subsequent research projects and Trials, that have led to the new drugs available. They have a project called " Black Swan" which is working towards a core for this wretched disease. I just hope and pray it happens in your life time.

All very best wishes. Keep asking the questions.

Mavis x

[mhnevillParticipant]

Hi Andy

Good to see you are your normal upbeat self, AND after 18 lots of Revlimid. Do hope you get to a good place soon.

Warm regards.

Mavis x

[mhnevillParticipant]

Hi Sairi

Welcome from me. Sorry it is such a hard time for your Dad and those of you watching him.

Given his age, I would say as little treatment as possible, to make him as pain free as possible, is best way forward, but that's just my view.

Lots of love.

Mavis

[mhnevillParticipant]

Hi Tracey

Sorry to have to welcome you on here.

As your Mum is already on CDT I think it is unlikely she has smouldering MM as this usually doesn't attract any treatment, but don't despair. After six lots of CDT I am in complete remission.

Ask any questions and keep in touch.

Love to all the family.

Mavis

[mhnevillParticipant]

Hi (is it Fifi?)

As Jan says, if your Dad is on Zometa he probably won't have the flu like symptoms again. I only had them the first time when I transferred from Bonefos. I have been having four weekly infusions for two years now. I have been very pleased, because at the time I started on it, my Consultant was expecting me to have stress fractures because of the amount of bone damage, but I haven't had any.

I know it sounds a lot of pain relief, but at this stage your Dad needs to take as much as necessary even if it makes him very sleepy. Hopefully he will be able to reduce it as the treatment kicks in.

Keep strong for your parents.

Love Mavis

[mhnevillParticipant]

Hi Peter

Sorry we have to welcome you on here. Sorry you are having such a post dex downer. It sounds like cold turkey. Take as much rest as you can and well done Janine for thinking of crushed ice.

Wonder if they wil put you straight onto pathway for Stem Cell Transport as you have had kidney problems, Don't worry if they don't. Several of us on here are doing OK without, in fact, I gather there is a Trial to compare remissions between patients who immediately proceed to SCT and those who don't. Important thing is to listen to what is said, ask loads of questiond and then make up your own mind.

Don't forget the MUK phone line if you want to talk to someone not involved with Leeds.

There is a Support Group in Leeds, unfortunately too far for me to go from Bradford so far, but even if you can't go the Leader might be able to put you in touch with someone locally.

One thing, going to Leeds you will no doubt find yourself sitting next to other MM patients. In over three years at Clinics I have only met one so feel very lonely at times! Don't know what I would have done without this Forum.

Best wishes for Friday.

Mavis

[mhnevillParticipant]

Hi Jean

As Eve says, your nurse was on the ball. Do hope it is nothing but if by any chance there spinal chord compression, the sooner they are onto it the better.

Hope they have a fan in Michael's room!

Do let us know how he gets on.

Love Mavis x

[mhnevillParticipant]

Hi Christine

My Cellulitis seemed to last for ever. I had three lots of antibiotics. My legs still get red, but GP said not to worry about that if soreness had gone.

Are you in complete remission now and when do you hope to have your SCT?

All best wishes.

Mavis x

[mhnevillParticipant]

Hi Ian

Just wanted to send best wishes and say hope Revlimid start to be effective soon.

Mavis x

[mhnevillParticipant]

Hi Dai

Glad you are persevering with the Velcade as you say, it seems to be working and you are still here to tell the tale. I just wish there was a substitute that could give you some satisfaction musically. what about forming a Barber Shop quartet where they sing unaccompanied! I know we all have to adapt, how is having to take a service from a perching stool (!) but we can cling to the things that make life special.

Do you get a week off each cycle? I was wondering if you will be able to get away again.

Love to you and Janet.

Mavis xx

[mhnevillParticipant]

Hi Terry

So sorry you have been feeling so wretched. Do hope you get on the Trial – it sounds exciting and as I said on another post,you are closely monitored if you take part.

It was only the chemo which made me lose weight but we are all different in how we react to this horrible disease.

Keep strong.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Bob

Welcome from me too. Sorry you have had to join us.

People say that if you are on a trial you get very carefully monitored even if you are not on the novel agent,so it is worth talking the opportunity if offered it. I am sure you will feel much better when you see those numbers come down.

I didn't have a SCT, but am in remission after six lots of CDT. Apart from a nasty taste and swollen legs didn't find the chemo drugs too bad. Watch out though for infections. I did get shingles.

All best wishes

Mavis

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