[mhnevillParticipant]

Hi Gina

Sorry Velcade hasn't worked for your Mum. Do hope the next few weeks bring better news.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Chelle

So sorry you and your husband are having such a hard time. As everyone says, don't give up, these Consultants seem to be able to come up with a plan. If yours doesn't ask for a second opinion.

All very best wishes.

Mavis

[mhnevillParticipant]

Hi Carol

Just wanted to add my happy respose to your good news especially as it comes just after i had read the sad news about Gaye and shed a tear for her.

Like everyone else, I do hope the 0PP lasts and lasts and that the revlamid maintenance works well for you.

Get out there and forget MM for a while.

Love Mavis

[mhnevillParticipant]

Like everyone else, I feel so sad at Gaye's passing even though she had prepared us for it. She certainly fought the brave fight and endured so much pain with fortitude. An example and a friend to us all.

I just take comfort that Gaye had prepared herself for her end; and because I do not believe death has the last word.

Gaye may you rest in peace and rise in glory, may we all be as brave as you when our time comes.

Mavis xxxxx

[mhnevillParticipant]

Hi! Thank you to everyone who has contributed to this stream and best wishes to you all. It is interesting to keep up with side effects and outcomes.

This ties in, a bit, with Dai's contribution today about a form to track it all.

Keep fighting all of you. The good news is that MM isn't always winning. Just a shame that the drugs take so much out of everyone.

Blessings to you all.

Mavis

[mhnevillParticipant]

Hi Dai

I think this is a great idea – the trouble might be getting the medical staff to co-operate. I take my MM Diary along to each appointment to get my blood results, as they can't provide me with a print out – my Consultant says they don't have one!! I'm not sure that she really agrees with me keeping the results and I have only seen the specialist Nurse once, and then with the Consultant. I suspect they both deal with the range of blood cancers/disorders.

However, on the up side of your suggestion, it would then be easier to create some kind of cross referencing.

I also read the Myeloma Beacon (from USA) not all their postings as many are irrelevent, but I like the way each person's postings are follolwed by a brief synopsis of their treatment. It helps you to see who is on a similar path to you. If, like my, you have no support group nearby it is so helpful to make contact with someone whose myeloma pathway seems a bit like mine. I have have really appreciated my recent exchange with Julie for that reason.

You are right – it can't be beyond the wit of man to devise such a proforma.

Best wishes to you, Dai, as you look forward to your holiday.

Mavis

[mhnevillParticipant]

Hi julie

Thanks for the information. I agree with you – it is hard to get hard information.

All the best to you.

Mavis x

[mhnevillParticipant]

Hi CN

Makes trying to survive another ten years worthwhile!!!!

Mavis

[mhnevillParticipant]

Hi Min

I dfo sympathise with you and peter and I'm sorry that he has ended up back in hospital – just what he didn't want.

When I had a double hip operation some years ago (not MM related) I felt in the same position as Peter – being kept in hospital against my will. My husband and I were at logger heads about it. The thing that helped in the end was me getting a wise third person involved who mediated and made us both see sense and compromise. To this day Gordon doesn't know it was me asked her to intervene.

Is there anyone can help the two of you. Have you talked to the Macmillan nurse? They are there for families too.

Much love to you and Peter.

Mavis

[mhnevillParticipant]

Bridget

So glad you are up to cracking jokes!!!

Are you sure you aren't hitting the hard stuff?!!

Mavis

And Gaye … thinking of you – "to bra, or not to bra?!!!"

Much love to you both.

Mavis x

[mhnevillParticipant]

Dear Sally

Just wanted to add my best wishes to you and your father at this difficult time. So sorry your Dad is having it so difficult. I am the same age as him, and also have arthritis, and can't imagine how I would manage without my husband's support.

Do take care of yourself too.

Mavis

[mhnevillParticipant]

Hi Julie

Thank you for your informative reply to my questions. That's why I value this site so much. I'm sure that Ted will have found what you had to say interesting to about levels of PP before treatment.

I was diagnosed following a tumour on my spine which was successfully removed in Leeds LGI and I have some racking in my spine where they took some of my T12 vertebrae away. I had 10 shots of radiotherepy afterwards. My PP at that time were about 8 and are now 12. My other readings are just about alright. Because I had already had four hip operations for arthritis, my mobility isn't marvellous. I am about to buy a mobility scooter. I'm 66yrs and have just had to retire (for the third time!) from being a House for Duty Priest in Charge in Steeton on the North Yorkshire border.

Was it in Leeds that they said about the levels before treatment, or is that just where you will go for stem cell extraction!

I live in Bradford and am currently under Airedale Hospital. but had to go to St Jame's for the radiotherepy.

All best wishes to you.

… And Ted, I have just had to buy a new laptop – Windows 7 and all that! Wish they ran courses like your here!!

Mavis

I do hope you are able to delay any further treatment for as long as possible. That is certainly me aim!

[mhnevillParticipant]

Dear Meera

I am sorry you have had this diagnosis. I had a plasmatoma on my spine which was treated with radio therepy. I just say to encourage you, that even though I also have been diagnosed with Myeloma I haven't had to have any treatment apart from Bone Fos which strengthens bones.

I have read quite a lot about Plasmatoma and the progression to Myeloma. Frustratingly, most of what i have found out is in small bits and pieces from here and there so I can't direct you to anywhere really helpful. You could have many years without – and I gather, the more years you are free of Myeloma the less likely you are to get it.

Do hope you can stay positive. May be your tiredness is as much to do with the follow up from radio therepy. I suffered from this for several months. Also you have a young baby – that is tiring without anything else.

Do be gentle with yourself.

All best wishes.

Mavis

[mhnevillParticipant]

Dear Jeet

I'm so glad you are at home. I have been thinking of you so much. I do hope that all these horrible side effects clear up very quickly, but especially the throat and the taste so you can have something lovely to eat!!1

Much love

Mavis

[mhnevillParticipant]

Hi Dai

Aren't you supposed to be on holiday? Hope the fact that you are driving again – hurray!! means you can get there.

Having been off line for a couple of days I just caught up with your post. Tahnk you, yourself, for being so open with us all. I used to read an American Blog by Jon Gordon, who used to say we must find things to be thankful for each day. When i remember it does help.

I was amused by you by your "My My". It brought a smile to my face as i remembered my little grand son dancing to Mum a mia (wrong spelling!) Perhaps you could compose a song to that tune "My, my , my Myeloma!"

Wish I knew how to put on those smiley faces – I'd add loads to this post.

Very best wishes.

Mavis

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