[mhnevillParticipant]

Hi Maureen

Sorry Ian has to have another op. Do hope it is a simple procedure.

Lots of love to you both.

Mavis x

[mhnevillParticipant]

Hi Chrissy

Welcome from me too, sorry to meet you here.

Re radiotherapy, You will go to hospital to be marked up so they know where to direct the machine to. The worst bits I found, were transport, as I couldn't get there under my own steam, and laying flat on the narrow metal couch. A large doughnut shaped machine moves right round you body and shoots invisible rays from various points. Not at all painful, but you have to use plain soap and use cream to stop any burning.

Glad you got diagnosed so early.

All best wishes.

Mavis

[mhnevillParticipant]

Hi John

I would have said the same thing as Maureen. When I got as bad as you describe it was because I had a plasmacytoma which had wrapped itself around one of my vertebra and compressed my spinal cord. How the Consultant diagnosed was tapping my knee, like they do with a sugar hammer. You could try this yourself. If no jump you may have something to worry about. It is important to check this out as soon as possible because if you completely lose mobility,if it is compression, you might not get it back.

The only consultation I can give is that much later down the road, following CDT I was eventually able to leave off the morphine substitute. Now I rely just on my arthritis pain killers and, with crutches, I am much more mobile.

Sorry to make such a grim post, but always best to eliminate major dangers.

Re Zomets. As my entry into MM was via my loss of mobility, I didn't have time to have my teeth checked out. I have been on tablet bisphonates, the Zometa, for three years now. I did have one period when I had to leave off Zometa for a while, to have dental work. I now need more dental work, but am going to take the risk of staying on Zometa this time because it has done the job of preventing any fractures, even though I am told my body is full of lessions.

All the very best to you. Let us know how things go.

Mavis

[mhnevillParticipant]

Hi Andy

So glad you've been able to get these holidays in, and are planning for next year. I know just how much being able to get away means. Two years ago I would never have believed I would get 3 trips to Luxembourg in this year plus a week in the Lakes. We stayed in a Lodge on a farm three miles from Windemere. It had the added advantage of us being able to take our 13 year old yorkie.

Funny things these PP levels aren't they. After all they are only markers and some people seem to be able to live with much higher ones than others. Although my MM seems to affect me mainly via my bones, like you, I am finding that the Zometa seems to be working its magic as I haven't had any breaks even though I am told I am full of lesions. Interestingly, I asked my Consultant last visit whether I should be having annual full skeletal X-rays. He said no, he would ask for X-rays if there seemed to be a problem.

Glad you can keep so positive and encourage others to be positive too.

All blessings to you and Steph.

Mavis

[mhnevillParticipant]

Hi Dai

I can hardly believe it, you are actually on a new drug at last!! 1000% for persevance. I do hope and pray it works the miracle for you that some folk across the Pond have reported. Good luck with the Dex.

Sorry about the pneumonia which is what we all worry about. Glad they got it under control so quickly.

Lots of love to you and Janet.

Mavis x

[mhnevillParticipant]

Hi Tony,
So glad you've reached remission. Isn't it great to be off treatment.

My experience is like San's mums. I continue to have four weekly infusions of Zometa and see the Consultant every 2/3 months. I still have bone pain, but it is a lot better than it was immediately post CDT when I was on OxyContin and Oromorph. I now just take my arthritis pain killers. My ribs are still uncomfortable if I try to sleep on my side, but don't give me any trouble in the daytime.

I am now 14+ months into remission and counting. It always is a bit nerve racking waiting for blood results, but as I said to my husband the other day, I don't feel like someone with MM!

Very best wishes for as long a remission as I wish myself!!

Mavis

[mhnevillParticipant]

Hi Mary

I don't know anything about PADIMAC, but wanted to welcome you to the Site. Does this mean the plan is not to have an early SCT if all goes well with treatment?

All best wishes.

Mavis

[mhnevillParticipant]

Hi Helen

Well, I admire your determination to return to work and as you say, having a bit more financial freedom is great. We have found this since we retired. Just a shame MM has made traveling so much more difficult for me.

Still, I am still in remission a year after CDT and can't believe it is now over three years when I was first diagnosed. We have just got back from our third visit to my daughter in Luxembourg this year! Takes some planning and we hate the long journey, but at least it has meant we could see the family. My youngest grandson, three yrs, loves riding round the streets on the front of my electric scooter.

I was in clinic yesterday, for my regular Zometa infusion, and there was a man there having his fifth Velcade injection. He had been having severe pains in his legs and there was some talk of reducing his Dex dose. In the end they didn't. I thought, this could be me sometime in the future! Doesn't pay to think too far ahead does it?!

Like you I question my mood swings and I'm not on Dex! Maybe some of it is just the uncertsinty that is part of MMer's lot!

Take care. Hope things work out well. Keep in touch.

Love.

Mavis x

[mhnevillParticipant]

Hi Dai

So glad to hear your voice again, and at last with some good news and not just for you. You are to be the forerunner for us all with Pomalyst. Let us hope it proves to be the miracle drug for you. Let us hope as well that it triggers some unknown key and kicks these pesky temperature rises into touch.

Re your party .. Let's hope it was extremely premature.

Re the diabetes … hasn't your Practice got a Diabetic Nurse Specialist you could be referred to?

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Lolly

I have a theory that they refuse everyone a Blue Badge first time on principle!! Do apply again and as Eve says, do say how it is on Steve's very worse days. The trouble is the bar is always being raised higher. It does help to have someone experienced beside you when you are filling the mammoth booklets in! Have you got a Disability Action Group near you, or have you contact with a MacMillan Nurse.

Good lunch for Steve's SCT and the Blue Badge.

Mavis

[mhnevillParticipant]

Hi Rosie

Welcome from me too, but I really do wish I didn't have to. You certainly have more than enough on your plate. One thing that strikes me .. I saw that someone had raised some money to produce a book explaining MM to children. If you haven't seen it and think it might help some of your brood, I'm sure Ellen on the Help Line can point you in the right direction.

I am always amazed how folk do dredge up the resources to cope with appalling situations. It sounds like you have reserves of inner strength.

Love and prayers for you all.

Mavis x

[mhnevillParticipant]

Hi Beverly

I have just caught up with your post. As everyone else has said, you must look after yourself too. Glad you have now planned a break.

I thought the wisest comment made was that all of us affected by the dreaded MM, Carers and sufferers alike, have to adjust to a new normal! What a challenge. I think of all the people on here who have done this, Eve, wife of MM sufferer Slim is the best example. She has made it her business to gen up on all aspects of treatment and is ready to fight Slim's corner at the drop of a hat.

Do hope you and your husband still have time to create some more good memories. One day they will be all you have. Have you got other family members to support you.

Love to you both.

Mavis x

[mhnevillParticipant]

Hi Helen

Had been thinking about you so glad to see your post. Hope you soon come round post Velcade. Are you intending to go back to work?

Lots of love.

Mavis xx

[mhnevillParticipant]

Hi Carol

I am now over a year post CDT and am at last beginning to feel more like my old self. I go by my colour and at last I have lost that greyish tinge!

Hope you rally quickly once the six cycles are over.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Debs

Congratulations from me too. Trouble is, haven't the two years gone quickly!

I understand Zometa is for "as long as". I have been on it for over two years now and Consultant hopes to keep me on it.

Keep well.

Love Mavis x

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