[mhnevillParticipant]

Hi Dai

What is it about these infections that they can come on completely unexpectedly. I have every sympathy with you trying to deal with it with paracetamol although it is a complete no, no! If my experieince is anything to go by, being in a general ward will have not been a bundle of laughs.

Glad you are back home, if weakened, and bravo to your wonderful Janet.

Take care.

Love Mavis x

[mhnevillParticipant]

Hi Helen

Thanks for the encouragement.

Mavis x

[mhnevillParticipant]

Hi All!

Yes, it is good to get some good news of these continued remissions post SCTs. Shame you have to meet these three month hurdles, but I guess your bodies must be giving you some indication that all is still OK.

I hope for all of you that the news continues to be good.

Very best wishes.

Mavis x

[mhnevillParticipant]

Hi Craig and Etta

What a difficult year you have had. So glad that, at last, you can see light at the end of the tunnel.

Do keep us informed about the SCT. Do hope it goes smoothly, something must, surely! Here's to a long, long remission.

Very best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Vicki

Sorry to have to welcome you and Colin to the Site, but I am sure you will find the support, and information you gain from being part of it, the best thing you have found. It has made such a difference to me.

It is good that Colin is able to maintain a reasonably normal way of life for the time being and that he is keeping positive.

Has Colin been having CDT chemo? My blood is measured by para proteins and 1.2 sounds very low. Hopefully the SCT should be very soon. Do keep in touch.

Very best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Helen

Thank you for your helpful comments. Glad to say that I have felt better today and have made a more determined effort to do a bit more getting around. Well, if you can count walking round the room with my zimmer half a dozen times, doing more!!!

I know I have to focus on the good outcome I am looking for at the end of the CDT. At least when I go to hospital on Thursday it will be to start the third round so I am knocking them up! Hopefully the Consultant will have something helpful to say about my swollen ankles.

Hope things continue well with you.

Love Mavis xx

[mhnevillParticipant]

Hi Andy

Strange how this MM takes everyone differently. At least if your bloods are OK the PP levels aren't having an adverse affect on your system which is the main thing. Hope the drugs soon kick the levels into touch. How are you coping with reactions to the regime?

Yes, do keep in touch.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Eve

Will be thinking of you all this week and especially Slim as at last he has his transplant.

Not an easy time for you, but at least you have good times to look forward to once the SCT is behind you. Do keep us up todate with Slim's progress.

Lots of love.

Mavis xx

[mhnevillParticipant]

Dear Gail

Sorry we have had to welcome you to the site. I do hope you find it helpful to be able to share just how you feel. I am 67 yrs and I am the one with MM. I do feel for my husband as he just has had it all dumped on him. Same as with all the caregivers. We are so fortunate to have loved ones who do care. It is a hard journey for all of us.

Best wishes to you and Howard.

Mavis

[mhnevillParticipant]

Hi Tina

I'm glad I'm not the only one who has had a couple of low days! I had my worst day yesterday. Day 18 or my second round of chemo. I had a hard job breathing and lots of back pain. I felt very low. Unusual for me. First time I'd asked myself what's it all for. Very sensible words from you Dai. Thank you. I guess this is the Dex reaction everyone talks about. At least I now have only Thalidomide till I go back to the Consultant next Thursday.

I have decided to have a very quiet couple of days. I haven't even got dressed today. I think I have been having too many visitors, but it is difficult if they just arrive. Hopefully. as it is the Bank Holiday, folk will be busy with their own families.

Isn't it difficult when you don't know exactly what to expect in side effects and what they mean. I didn't know whether to ring someone about the breathing problem, but then it got better as I sat quietly. My ankles are still very swollen. My Dr gave me some water tablets, but I haven't taken them today as I was awash yesterday!!! Also bunged up so that isn't helping.

Like Dai says, I just keep thinking this is towards a good cause a nice long remission so it is worth it. It's just I feel a bit our on a limb and I'm sure you feel the same.

Take care. Lots of love.

Mavis xxx

[mhnevillParticipant]

Dear Eve and Slim

What can we say? What a dreadful thing for your family to come to terms with. It always seems the wrong way round when a grandson dies.

My love and prayers are with you and all the family especially in these next few difficult days.

Mavis x

[mhnevillParticipant]

Hi Bridget

Like Helen and many others I have been missing you and write this in case you sign on.

I gather that you have been posting to Face Book but I don't post there. But i want to send you all my love and best wishes.

God bless you.

Mavis xxxx

[mhnevillParticipant]

Hi Tina

I am just ahead of you. Day 14 of second 21 day regime. Only side effects swollem ankles, slight taste change and very sleepy, but this could also be because of new pain control. Glad my hair has stayed thick!

I haven't had any difficult effects to Dex yet. Like you I wonder why we have to take so many tablets and some of them are so small. I find getting my head round the schedule ddifficult. I nearly forgot my Cyclophoshamide last week.

Keep in touch. I shall look with interest at how you progress. Are you hoping for a SCT? I am not expecting to go down that road.

Love Mavis x

[mhnevillParticipant]

Hi Stephen

Do hope that you continue to make good progress.

Keep in good heart.

Best wishes Mavis

[mhnevillParticipant]

Hi Andy

Welcome back. Sorry you have been bowled this googly. Glad you are over it now.

All the best as your Rex/Dex treatment continues.

Mavis

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