[MariParticipant]

Dear Kathleen,

You are perfectly normal. My husband had his SCT in September 2010 and has made the most amazing recovery. I have to pinch myself when i think about how poorly he was this time year. However I was weeping at the drop of a hat, and fearing for him all the time, watching him like a hawk and looking for any possible symptoms or tiredness, anything. I realised that I was dragging him down as all he wanted was to feel normal (as much as possible) again. I also realised I was spoiling our 'good times' with my fears. I went to see a counsellor arranged through his consulatant in our local hospital. This has been a great help and I am now much calmer. We can enjoy his remission without me worrying all the time.

I do hope you find a way to live with this awful disease as calmly as possible, I know how hard it can be,

Love Mari xx

[MariParticipant]

Good Luck Dai, I have followed you particularly as you seemed to be just ahead of us in your journey with myeloma. I will be thinking of you are you start on the next stage.

I am sorry but i m with Janet, we are desparate for rain down here in the South East,

Love Mari x

[MariParticipant]

Dear Bridget,

Have just seen this and I am so sorry you are having pain. However I am with Dai and I really hope you end up feeling silly!

I am thinking about you and hope they can sort things out soon for you,

Love Mari xx

[MariParticipant]

Dear Gill,

I find they are very good at Kings, and will give you a printout of the blood work if you ask for it. We also get a copy of the letter from Dr S ( now prof :)) and that usually has pp readins in it

Mari x

[MariParticipant]

Hello David,

Yes it was 17 the week before he had his Stem Cell Harvest. We were told that the myeloma cells do not survive the feezing and defrosting process so any included in the harvest would not have gone back in.

It was pretty scary that they came back so quickly between CTD and SCT tho

Mari

[MariParticipant]

Dear Jean

I hope you have a great holiday, enjoy the break and I hope Frank is not in too much pain. We has a great holiday in France when Steve's ribs were bad and had a good time despite it,

Look after yourself

Mari xxx

[MariParticipant]

HI Jet,

Your post made me smile. I am not a cyclist but my husband is. He had his SCT in Sept and the last two weekends he has cycled 14 miles. He is training for the London to Brighton bike ride in June. Just over a year ago he could not walk and still struggles walking uphill yet on a bike he flies again. It was great seeing him getting his kit on again, (he does love his lycra!)and doing something he used to do before he was ill,

I hope you continue to love your cycling,

Love Mari xx

[MariParticipant]

Dear Dai,

I am so sorry to hear your news, dont know what else to say, except my love goes out to you and your wife, and I hope the next phase of your treatment goes well,

Mari

[MariParticipant]

Dear Jean,

This sounds very much like the pain Steve had in the summer before he was officially diagnosed. Sharp pains in the side of his chest/ribs. He thought he had a pulled muscle. It was very sharp but eased in a few days, and happened on either side of his body two or three times. This was in June/July, by November he was in severe pain and ended up with a tumour on his spine. It may be nothing in which case thats great but please get it checked out. He had been diagnosed with smouldering myeloma in 2004 and we stuck our heads in the sand telling ourselves that this was not myeloma related. He eventually had spinal compression and needed an emergency operation and has spent the last year learning to walk again. I am sorry I dont mean to scare you, I just dont want to see someone else go through what we did because we were scared to admit what was going on. I hope that this is just nothing and you will be pleased that u checked it out,

Love Mari xx

[MariParticipant]

Dear Amanda,

I am glad you have got your counselling sorted out. My husband Steve was 53 when he was diagnosed. We both had counselling from specialist oncology counsellors and they were brilliant. We no longer see them but still have a line open to them if we need it again. I hope you have as good an experience as we did.

I hope your mum is doing well,

Love Mari x

[MariParticipant]

Dear Gill,

I think as Debs says its very individual. Steve was diagnosed with smouldering myeloma in 2004 with PP levels of about 7. These increased slowly until he ended up with a tumour on his spine in autumn 2009. He was told they would not start treatment unless his PP levels reached 30. However they were 24 in Novemeber 2009 and they decided to do nothing despite his back pain. When he had the surgery on his back in Jan 2010 his pp's were 33. This is the highest they have ever been. He started CTD in Feb 2010. This was successful and by June he was down to 'undetectable' but by August when he was having the work up for his SCT they had risen to 17. We were all over the place as you can imagine, however they decided to still go ahead with the SCT and after that his pp's are still undetectable after 6 months. I think the doctors decisions depend on so many other things such as general blood chemistry and bone marrow biopsys and trephines.

I hope all is well with you and Stephen, and his current batch of treatment is going well,

Love Mari xx

[MariParticipant]

Hello everyone, this is a lovely idea Min, its been lovely to see you all introduce yourselves. I have not been here for a long time but its half term next week and i have some breathing space. Stephen, my husband, has MM and we live in Tunbridge Wells. We have two children in their 20's and a rather elderly cat. Steve was diagnosed in 2004 with smouldering MM but still ended up with spinal cord compression and was admitted for emergency surgery to the regional neurological unit in Hayward Heath in January 2010. He started CTD in Feb 2010 and then began teaching himself to walk again. He had his SCT in September 2010 and has been determined to 'get back to normal'. We were told on 22nd December that his bone marrow biopsy and trephine showed no sign of the disease and so he is in complete remission. I have been amazed at his powers of recovery as he has been back to work full time since the beginning of January after almost a year away and cycled 7 miles at the weekend. Long may it continue! Sorry to have gone on so much, I may not post very often but I am following your journeys carefully and sending out good wishes,
Love to you all, Mari xxxx

[MariParticipant]

Hello Sarah and Gordon,

Delighted to hear that all is going so well, brilliant news. And I agree with you about Dr S's assistant, he really is lovely and very straight forward. Hope things just keep on getting better for you both,

Love Mari x

[MariParticipant]

Great to hear you are home, I am sure you will feel so glad to be starting to get back to normal that your recovery will really take off!

All the best,

Mari xx

[MariParticipant]

Dear Keith,
sorry to hear about your relapse but glad you now know where you are going with the next stage of the treatment. I hope it goes well for you and leads to further remission soon,

Mari x

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