[GavinParticipant]

Hi David
Been following your journey as I am on the same route. Very best of luck for Friday. Keeping everything crossed for you.
Gavin

[GavinParticipant]

Hi Sharon
Just picked up on your situation. Sorry to hear about it and hope the radiation & Dex(?) works as well for you as it did for me when I had the same happen in Oct.2010. I still have issues arising from a near fully-fledged Cauda Equina from spinal compresssion which has left me with slowly improving PN in various places below T5 and continuing walking/stability issues.Thank goodness you knew the signs and the protocols. A lesson for all of us.Good luck and best wishes.
Gavin

[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

[GavinParticipant]

Hello Bridget
Only just seen your posting so you have probably already had one or two seesions of radiotherapy.I had 5 days of RT in Poole hospital at the start of my MM journey, together with the dreaded DEX. The effect was immediate and I have had nothing except twinges since. I hope it has the same result for you. All the best.
Gavin

[GavinParticipant]

Hi David
So pleased for you! The figures sound excellent at this stage and the fact that you are feeling so good is fantastic. Keep it up and carry on cycling – you are an inspiration to those of us who follow in your footsteps!!
Very best wishes
Gavin

[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

[GavinParticipant]

Hi Frances
Great to hear things are going so well for you. Only two weeks in hospital is just brilliant. I hope all the progress made continues throughout 2011 and beyond.
I saw my haematologist yesterday. All my blood tests were excellent and back to normal. Paraprotein level still very low. Had xray on a new/persistent area of pain in my side and face a bone marrow biopsy next Tueday.Chemo delayed until all the results are in as the Dr now wondering if starting the Myeloma XI trial should be delayed as all the signs are so good.
Good to hear from you. Keep me up-to-date with your splendid progress.
Best wishes
Gavin

[GavinParticipant]

Hi Debs
Lovely to hear from you. It would be very helpful to stay in touch and exchange experience and info. Hope the outcome of your chemo is positive and allows you to move on to SCT directly.I am meeting with my haematologist at Dorchester(Dorset) hospital on Tuesday to decide the next moves.
Thank you for getting in touch.
Happy New Year
Gavin

[GavinParticipant]

Hello David
Many thanks for your encouraging comments.I have read your blogs posted during your recent SCT and found them very informative and helpful, thank you. I really appreciate you getting in touch and wish you every successful response to your treatment in 2011. Please stay in touch.
Kind regards
Gavin

[GavinParticipant]

Hello Bridget
Thank you so much for your words of encouragement & support. I'll post from time to time when my treatment starts. David has also sent me a message & I will follow up on his record of treatment which will be of great interest.
Very best wishes to you and your family for 2011.
regards
Gavin

[GavinParticipant]

Hi Frances
How are you. I hope the SCT went OK and that you and the family had a good Christmas. Would love to hear from you and know how things are going.I have come round to the view that I should proceed with Chemo, etc and will be beginning treatment under Myeloma XI trials in the next week or so.
In the meanwhile every good wish for 2011.
Kind regards
Gavin

[GavinParticipant]

Hi Frances
Many thanks for your response. I am so pleased that the chemo has worked for you without too many side effects. Did you have the standard chemo package? I am considerably older than you at almost 70 but the haematologist thinks I am robust enough to cope.Luckily I also have a very supportive family and friends around to help me through.
Best wishes for the transplant next week. Hope you don't get too bored during your stay in hospital and that all goes very smoothly.Would love to hear how everything goes for you in due course so stay in touch when you can.
All good wishes
Gavin

[GavinParticipant]

Thanks to both Gill and Bridget for responding. I will post again when I have reached a decision.
Best wishes
Gavin

[GavinParticipant]

Hi there

First ever post. I am newly diagnosed MM. After a successful response to radiation & steroids to relieve pressure on the spinal cord I am now being advised by my haematologist to undergo chemo leading to SCT. I am early Stage 1 and apart from the vertebra problem all my vital organs are in good standing and I feel really well (!). I admit to being very concerned about undertaking chemo, given the potential side effects and the immediate effects on quality of life. Is there anyone out there who has decided not to go the chemo route? I would like comments if possible, from both those who have and those who haven't.

Best wishes to all.

Gavin

[Author]

Posts