[DorothyParticipant]

Hi Susie

Cant help with any advice but I want you to know I am thinking of you and hope that you can get advice from your team and from others who are at this point so that you can make an informed decision

This is indeed a mind bending disease but it will not defeat us- keep strong and positive

Bless you

Dorothy xxx

[susieParticipant]

Hi Dorothy

Thank you so much for your good wishes.

How are things going for you at the moment ? Well I do hope.

Best wishes

susie

[DorothyParticipant]

Hi Susie

Am booked in for spine surgery on 17th February so a little worried at the moment. However the team are very positive so I have to put myself in their hands.
Praying for a positive/good outcome

Hope all is well with you Susie
Keep smiling

Best wishes

Dorothy

[jeff605Participant]

Hi, Dorothy, having recently had a vertobroplasty op, which due to the professionalism and reassuring relaxing manner of the team was much easier to endure than I was expecting, I would say try not to worry too much, easier said than done I know. I am expecting further surgery to deal with spinal cord compression which it seems I am suffering from, so do know how you are feeling. Just to further complicate things I today received an appointment for a SeHCAT test, wasn’t expecting it and don’t know what it’s for, and neither do the team doing it ! Ah well, I’ll just assume that “they” know what they are doing for now, and ask questions next week at the Myeloma clinic.
So, Dorothy, try not to worry, and all the best for the 17th, I’ll be thinking of you. Jeff

[susieParticipant]

Hi Dorothy

I shall be thinking of you that day and wishing you all the best. I’m sure all will be fine. The 17th is the day of my hospital appointment so I wont forget.

Best wishes

susie

[andygParticipant]

Hi Susie.

At the moment there’s nothing definite about maintenance therapy they are still running trials to see if there’s an advantage and the optimum doses. I guess it comes down to the old chestnut about quality of life. If you go along with the maintenance route and you find it impacting upon your well being you can always stop it.

I have no personal experience of maintenance therapy because I’ve been on full blown treatment since 2011!

Every day is a gift.

Andy xx

 

[davidbrParticipant]

Hi All

I was on maintenance Revlimid after my SCT last December as part of the Myeloma X1 trial. I took the Revlimid for 3 months May-Jul but my platelet count was below 100 so they took me off it. I do feel better now I am not taking anything and feel at my best for 2 years. I have my 3 monthly Consultant appointment on the 24th so am hoping for a good report.

Best wishes everybody.

David

[DorothyParticipant]

Hi Jeff
Thank you so much for your encouragement and support. It is hard to relax and not think about the operation. The ‘team’ are very professional but although they can tell me the technical side they can’t explain how it actually feels to go through treatment and operations. Although I am still tense I just want it to be over now so I can continue just getting on with life.
Bless you for taking time to let me know how you felt.
You are an inspiration

Thanks again and I wish you well

Dorothy

[DorothyParticipant]

Hi All
You are an amazing group of people and we are all coping in different ways, with it seems some different treatments.
I wish you all well
Susie thank you for your lovely message
Andy – yes every day is a bonus and a blessing
Jeff – thanks again good to hear of someone else who has had the op.
David – I pray for good results for you

Keep smiling everyone and keep positive

Best wishes and prayers for all

Dorothy

[susieParticipant]

Hello All

I have decisions to make in the next couple of weeks. Has anyone ever been on vorinostat ? If so what are your experiences of it.

Dorothy

I have been wondering how your surgery went and how you are recovering. Hopr to hear from you soon.

Best wishes to all

susie

[jeff605Participant]

Hi, Dorothy, left it a bit before bothering you, how was it? Hope it wasn’t too traumatic. I did remember, and thought positive thoughts for4 you. Jeff

[DorothyParticipant]

Hi All
Susie and Jeff thank you for your lovely thoughts you are so supportive. The operation was longer and a bit more complex than expected but the consultant is pleased with how things went and my progress. I was in theatre 8 hours then ICU for 2 days but I was home on Friday just 3 days after the op. Having the dressing changed daily, learning to rest more during the day as neck is a bit sore and my body is recovering from all the trauma and drugs. I am now waiting for biopsy results and more tests so the team can decide when to do my stem-cell transplant.
I feel very well considering am eating, drinking and moving about well .

Bless you both I continue to hold you in prayer for your recovery and responses to treatment
Keep smiling and be happy – each day is indeed a blessing.

Susie I haven’t heard of this treatment sorry

Much love to you

Dorothy x

[susieParticipant]

Hello All

I finished my treatment about 2 weeks ago. Since then I haven’t felt particularly well. I wouldn’t say I feel ill just not well. I expected to feel very well, as I did before all this MM journey started. My bloods are all normal. Am I expecting too much ?

Best wishes to all

susie

[DorothyParticipant]

Hi Susie

It takes some time for all the drugs and such to get out of your system. I think we always expect that the treatment ends and we are well, it takes time to rebuild immunity, to feel confident and to be the positive people we were before treatment. You have been through a great deal and need time still to rest and recover from the battering to your body.
Take things easy, rest as much as you can, eat well and try to avoid anyone with coughs and colds as you will still be vulnerable. My consultant says it takes a good few months for all the drugs to clear, so just take each day as it comes my dear and don’t try to push yourself too much, if thats possible. Bless you

I do hope you feel better soon.

Love and hugs

Dorothy xx

[susieParticipant]

Hi Dorothy

Thank you for your reply. It’s encouraging to hear that.

How are you now ? I hope you are recovering well and feeling a lot better.

Best wishes

susie

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