[GavinParticipant]

Hello Mavis
Thank you for responding. It was good to hear from you. As you may have gathered,I am not eager to change the quality of my life any sooner than I must,particularly as my paraprotein level is barely 3 and plasma cell level is 14%. I will do so only when it is clear that it would be stupid not to proceed.

Apart from a new unexplained side pain which has started to diminish today I feel really well. My main problem at the moment is walking and stability. The cauda equina brought on by the tumour/pressure on the spinal cord left me with less than fully functioning legs and stomach area muscles.I am quite wobbly and find stairs difficult.

My haematologist is running all the tests again before coming to a decision to go ahead on the Myeloma XI trials to which I have agreed in principal.I should have a clearer picture after next Tuesday,s meeting when I am also having the bone biopsy repeated to see if there are any changes.

At risk of boring you I had experienced pain for many months, perhaps a year. Numerous x-rays showed only general deterioration in areas of my spine. In July one of my vertebra(T4)collapsed.In late Sept I started to get new extreme pain and lost the use of my legs/ bowels, etc. I was rushed to hospital and MRI and CAT scans showed up a tumour which was wrapped around vertebra (T5).An operation was too dodgy so the tumour was zapped by radiotherapy and steroids during a ten day stay in hospital.From that time I have had very little discomfort apart from the effects of the cauda equina.

As the markers were so low I asked to have a period of wait and see until Jan.I guess I am lucky to have a haematologist who is prepared to discuss the situation at length and go along with my wishes so far.I have also done a great deal of research on line to help me understand as much as possible.I must say this site is so helpful, particularly the experiences of other MM sufferers.

That's enough for this time. I hope it hasn't been too long a post. I will make future ones shorter & less boring!
Very best wishes
Gavin

[mhnevillParticipant]

Dear Gavin

I was interested to hear how your diagnosis was reached. It's not boring, because that is the benefit of this site that we can learn by comparing other's experiences.

Hopefully, like me your mobility will gradually improve and I know, from previous nerve damage to my foot following hip surgery, that eventually it does begin to improve, but it is very slow.

I do hope you have a good meeting with your Consultant on Tuesday. Do let us know.

I wish we had a support group nearer than Leeds because I think I would find it helpful to belong to one.

Best wishes.

Mavis

Best wishes

Mavis

[GavinParticipant]

Hi Everyone
Thought I would bring you up to date on my journey. After a great deal of thinking, research, tests and discussions with my haematologist I finally made up my mind to go with chemotherapy in spite of my deeply held fears. My paraprotein markers are very low and I feel very well generally so I could have taken a wait & see approach but decided not to wait.
Even though I have now reached 70 I was offered a place on the intensive pathway of the Myeloma X1 National Clinical trials and was randomly allocated to the Thalidomide option. I began the Chemo this morning, including the dredded Dex which had a euphoric/ emotional effect when I had it in hospital in October during the radiation treatment. At least four cycles of this before hopefully going on to a stem cell transplant.
Thanks to all of you for sharing your thoughts and experiences. It has been a great help to me.
Will post briefly if anything of note happens! I would also like to know how you are all doing.
Best wishes to you all and particularly to Frances, Debs, David, Bridget & Mavis who posted replies to my early emails.
Gavin

[brochoParticipant]

Hi Gavin thank you for letting us know . In my experience you get very well looked after on these trials so fingers crossed it will be trouble free and you can have your sct and be free from major treatment for a long time . I have just started on Revlimid and the lovely dex !! A few unpleasant side-effects this week but I am hopeful it will settle down after this first cycle Take care and dont overdo things, rest when you need to love Bridget

[mhnevillParticipant]

Hi Gavin

I was very interested in your decision to go ahead with treatment. I can imagine it was not easy to decide being in not too disimilar position.

From all I read about the dreaded MM it seems the important thing is to make the decisions that seem right to you. It is good that you have got onto a Trial as you will be very closely monitored. Also, you will feel you are doing something for the whole MM community – for that, thank you!

All very best wishes for the next months. Do keep us all informed of how things go. We will look to hear good things.

All blessings.

Mavis

[Author]

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