[mhnevillParticipant]

Hi Helen

So glad to hear your blood readings were better this time. It is a roller coaster isn’t it! I remember you saying that once before.

I will hope and pray that the drugs will do the trick and bring the numbers down. I can see that the thought of an allo is so enormous. I do hope you find another way through. If only you can stave it off there will be other things that are currently in the pipe line.

If they can do all this tissue typing prior to an allo, you wonder why they can’t do a profile of your blood to choose the best treatment.

Keep finding things to look forward to, even if they are only little!

Lots of love.

Mavis xxx

[mhnevillParticipant]

Hi Les

Just read your post. So sorry for your loss especially as it came so suddenly. I suppose one comfort must be ( and I say this from a patient’s point of view,) at least your a Dad didn’t have months of fighting off the inevitable.

Be kind to yourself. Loss doesn’t go away over night, how can it. Keep bringing good memories of your Dad to mind. He must have loved you heaps for you to miss him so. That was a gift.

I always say” death doesn’t have the final word.”

Lots of love.

Mavis

[mhnevillParticipant]

Hi

I had the same problem with CDT. The only things I really enjoyed were salt and vinegar monster munches. I, however, was glad of the resultant weight lose! Only sorry I have piled it back on again.

Sorry you are having the same problem with your next regime. I am fortunate that I am still PP free so no more treatment yet.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Sarah

Do hope M is coping with the drastic treatment as well as can be expected.

Your story of the rainbow reminded me that, when I was first taken to hospital, prior to MM diagnosis, I saw a rainbow, and subsequently, as I was being wheeled down to theatre to have my plasmacytoma removed from my spine ( and I’d been told it could go either way,) there was a picture of a rainbow on the wall outside the theatre. I took it as a sign and I have not been disappointed.

Love to you both.

Mavis x

[mhnevillParticipant]

Hi Sara

Hope you manage to get an answer about MM soon. It must be very worrying having it hanging over you.

PP blood readings aren’t done as routine. I think this is because of cost! Also it takes about 10 days to get the results, unlike others which they can do immediately.

Do let us know how you get on.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Graeme

A belated welcome from me. CDT knocked my MM completely back to ” undetectable” hope yours does the same.

Very best wishes.

Mavis

Hi Tom

Hope your new treatment is doing its magic and brings your readings right down.

What I want to know is, why does MM and treatment make folk like you lose weight, while others, like me, just pile it on, and on and on…… I am now having to work really hard to get back to my post chemo weight which was still massive!

Still, I’m still alive to worry about it, praise God.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Dick

Haven’t been on for a while. Sorry to hear your SCT didn’t last as long as we all would have hoped. At least your Consultant seems to be ” working with you” which is encouraging. Do hope the drugs get, and keep things stable.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Laura

Thanks for this info. As you say, let’s hope we see a UK Trial soon. I know I am always saying it, but I feel so grateful to the researchers and then patients who take part in Trials.

Hope things are good with you at the moment.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Izzie

Yes, aches and pain are part and parcel of my MM. I have changed my pain control recently. I now take tramadol and paracetamol. I stopped taking anti- inflamatories as I am worried about the effect on my kidneys. I have just started sone Alexander Technique lessons to see if that will help.

I’m surprised you aren’t still on Zomets. I thought the guidelines now said everyone should have it, whether or not they currently have bone involvement. I have been having four weekly infusions for well over two years and feel certain they have helped my bones which were in a delicate state.

One word of advice though, if you are going back on them, get any invasive dental work done first. I have had some problems with this and have to be referred to the a Dental a Hospital for ant root work.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Susan

I’m sorry no one has answered. I guess that what you asked is a bit out of the usual. Ellen on the Help Line is probably your best best.

As I understand it Mm can either be monitored via PP if folk secrete it, or by light chain readings if they don’t. However, this time my Consultant has asked for my bloods to be tested for both. I think this is belt and braces thing to check if I really am still in remission. (hopefully I will know on May 29th!)

Your 6.8 PP reading is very low, which is good, lots of folk never get to nil. However, what they really seem to worry about is if things take a steep upturn. Isn’t it a bind having to wait the extra time for the PP results. I now try to make sure I get a blood test at least 10 days before I see the Consultant. He signs a request sheet for me at my previous appointment. This is in addition to the four weekly tests I have when I am taking Zometa when the Lab don’t tend to do PP test. I’m told it’s expensive!

I hope this helps, but do contact Ellen.

How do you take your curcumin?

Very best wishes.

Mavis

[mhnevillParticipant]

Dear Helen

I’m really gutted to hear your news. It just doesn’t seem fair. Mind you, who said life would be?!

I know it seems a strange question, but does there have to be a mad dash to have more treatment? Will you feel ill if you don’t, or be more prone to infection, or is it just the numbers will rise?

Did you have CDT first time round? I’ve a feeling you didn’t. You wonder if going backwards would work so that you could keep other things in reserve.

An Allo sounds drastic, but know what you mean about doing what’s necessary. Don’t know if I could, although it wouldn’t be an option for me. You, of course are younger. I have just reached 69. I feel grateful for that.

Hope you can bring retirement forward.

Lots of love.

Mavis xxx

[mhnevillParticipant]

Hi Ali

I don’t know what happens to the Site these days. I have just renewed my password for about the sixth time. I had an email saying your Mum was going to have radiotherapy, but the post isn’t here! Maybe you started a new thread.

Anyway, what I was going to say is, compared to everything else radiotherapy is an easier part!! The worst thing is all the waiting around and having to lie down and not move, and on a very narrow table. They say it makes you tired by the end, but I think it was the travelling that did it for me.

All best wishes to your Mum.

Mavis x

[mhnevillParticipant]

Hi Ali

I has plasmacytoma wrapped round my spinal cord so had to have surgery four years ago. plasmacytomas in soft tissue seem to be dealt with by radiotherapy.

I like to have my blood results every four weeks when I go for Zometa infusion. I am always frustrated that they do not do PP test routinely. I am keeping a close eye on my kidney readings because I have been using anti inflamatories. We are all different.

Best wishes for the future,

Mavis

Hi Helen

So pleased to hear you have bitten the bullet and taken retirement. I am sure you won’t regret it.

Regards.

Mavis

[mhnevillParticipant]

Hi David

Just managed to get back on site after lots of difficulties. Hate this new Sign In set up!

Anyway, good to get on and hear your good news. It is so encouraging that our survival rates are getting longer all the time. I am now in year 4 and feeling good apart from mobility.

May you have many more years and get that trip to Greece as a starter.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Ian

Sorry your a Dad has been diagnosed with Myeloma. I was diagnosed in 2010 and chose not to have a Stem Cell Transfusion. I took a Course of chemotherapy CDT two years ago and am currently in complete remission. Although the MM did considerable bone damage, I have a four weekly Zometa infusion and this seems to have kept things stable.

There is plenty of hope, even for those not able to have SCT. The drugs can have side effects, watch out for shingles, but it is all very manageable.

Best wishes to your Dad.

Mavis

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