[jeff605Participant]

Hi, Dorothy, How are you following the back op. now? I hope things have settled down a bit and you are more comfortable. I find it very difficult to rest and take things easy, I like to be up and doing. However, looking at the results from the dreaded M.R.I. scan, I think I might have to. The list in the copy of the doctor’s letter was scary, moderately severe cervical stenosis, T11,T12 vertebral collapse, and compression of spinal cord due to angulation, ligamentum flavum thickening ( want some of that to put in my gravy ! ) and facet joint degenerative changes Wow !! Good news no myeloma related lesions. So, have an appointment with the spinal specialist next Tuesday, but from a remark the myeloma consultant made when I last saw her it sounds like an operation is on the cards. This disease seems to specialise in throwing one thing after another at you, doesn’t it? Just got good news that I am in partial remission with p/p at 4, and now this. Ah, well, just get on with it , I suppose.
Dorothy and Susie, Hope you both are feeling better , and best wishes to all, Jeff

[DorothyParticipant]

Hi Jeff
Doing ok just needing to rest more it seems
Just back from the hospital. 11 Staples removed (ouchie ouch). Mr Thambriaj, my consultant, is pleased, nothing unexpected happening, will take another three months or so to settle all the skin, nerves, tissues, tendons and blood vessels that he had to move out of the way in order to operate on my vertebrae. He is amazing. I really appreciate all the prayers, love and positive vibes that have seen me through the last month or so. Next step is to consider the Stem Cell transplant so not quite out of the woods yet but getting there.

I think you are amazing with what you have to put up with Myeloma certainly is a difficult cancer to sort out and it throws out such diverse symptoms – certainly keeps us on our toes

Bless you Jeff – keep smiling and hope you are feeling better soon

Best Wishes

Dorothy

[jeff605Participant]

Hallo Susie, I hope things are going well, and the side effects are easing up, they must be very draining and ” downing ” As I’ve mentioned before, mine have been very light sofar, and reading of the struggles of others makes me really appreciate this. How you cope with it all on your own I don’t know. I have my three daughters all living nearby ( although the middle one is still in hospital recovering from a serious brainbleed ) and are very supportive, but it’s not the same as having your other half there with you.
Dorothy, thanks for the kind thoughts, they mean a lot. I hope you don’t mind but I have sent you a private message to discuss your operation, I thought you might prefer that rather than doing so in the open forum AS usual, best wishes to all in the struggle against this horrible Myeloma. Jeff

[andygParticipant]

Hi Susie.

Sorry I do know much about vironostat other than it’s in a new class of drugs that are being investigated and undergoing several trials.

The trouble with myeloma is it never leaves you and unless you get the top rated remission ie no detectable myeloma you will probably not return to pre myeloma fitness. The drugs we take damage our good bone marrow too sometimes permanently, usually after long term chemo, and our immunitity is lowered. What are your readings like now?

Hi Jeff.

I too had trouble with T11 and T12. I underwent surgery on them I had kyphoplasty. It’s a day case operation though us MMers get to stay in over night due to our low immunitity and infection risks. From reading your post Jeff I think the spinal cord  compression is the most worrisome. That’s only my opinion by the way and that’s because my spinal surgeon mentions it every time I see him and tells me how important it’s to get prompt treatment. I’ve got problems  with my spine from top to bottom and damage to all my vertebrae. Depending on the time of day I get measured I’ve lost up 5 inches in height.

Anyway Jeff I hope your consultation went well.

Hi Dorothy.

You are certainly being but through the mill. I hope you make a swift recovery from your operation and the you can get on with the next leg of your journey your SCT. Take it easy and don’t rush things and be prepared for little set backs.

Every day is a gift.

Andy x

[jeff605Participant]

Hallo all, Well Andy and Dorothy, saw a really pleasant consultant, a Mr.Gabbar, at the Leics Royal yesterday ( after the usual 30 minutes plus to get into the car park – are all hospital car parks like this ? ) He gave me a good interrogation as to how I was feeling and coping, followed by an physical inspection, and pronounced that I was borderline, didn’t urgently need the operation, and really it was up to me how much pain I was in and was I happy to live with it. So I’m going to see what happens over the next couple of months. I intend to do a bit more exercise and activity, which Mr. Gabbar said is the best thing to do. So we will see . At least I will be able to concentrate on getting my daughter- the one with brain damage – settled.
Thanks for the help and advice – he was most impressed with the questions, Dorothy.
Dorothy, I hope you are still recovering ok, take things slowly and try not to overdo things, not easy for those of us who like to get on with it, I know. I really appreciate your help and kindness.
Andy, the consultant did warn me of things to watch for and to take action immediately if I get any signs of them, all to do with spinal cord compression.
All the best to you all, Jeff

[DorothyParticipant]

Oh Jeff I am so glad you had a positive consultation the consultant sounds helpful and supportive, and willing to listen to you.
You will feel more at ease knowing you can sort your daughter and settle her in close by this will take some pressure off you.
All hospital car parks are manic, there is never enough space and always a struggle to get in, and they are expensive too!!!

I went out for lunch with a friend yesterday and enjoyed just being on a very short walk , small things mean a lot when you are recovering physically and emotionally.

I hope that you can relax a little and consider the future in a very positive way. take care again try to take one day at a time (although I want to just get up and go it is hard to slow down isn’t it?)

Andy thanks for your comments wishing you well with your journey. I am meeting with the transplant team next week and maybe sort out what next – but I need to be sure it’s ok.

Bless you for your very positive comments If I can help in any way please just ask. It’s good to be in contact.

Best Wishes
Dorothy

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