Hi Janet
I have the ridges on my fingernails, hey break easily and ‘peel’ too. I find the coconut oil is great on my feet and hands too in fact on all my skin. I have tried lots of creams but this seems to be the best so far. Just another side effect but as you say we are still here. I am being admitted on Monday 25th for SCT my first was 11 hers…[Read more]

oops consultant dentist…

My nails dry and split constantly I put coconut oil on them. My teeth have also been affected but I am seeing a consultant dents o keep them in check. So far no need for false teeth !!! Good Luck.

Difficult to read your message BUT I had a stem cell transplant 11 years ago It worked and gave me 11 years remission – I am just facing another SCT hope to have another 11 years.

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…[Read more]

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…[Read more]

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…[Read more]

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,…[Read more]

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…[Read more]

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…[Read more]

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

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

Hi All
There are days when we all feel the need for some support. Little things can set us off but little things can also lift us up, a kind word, a phone call, a smile, a memory. Jeff you should never feel ashamed of yourself as we all have down days no need to beat ourselves up, just pick ourselves up. The treatment itself can make us feel…[Read more]

Its good that we can support each other
Keep getting better friends

Dorothy

Hi Susie and Jeff
Good news from both. I have jut had my stem cells harvested but have some spine involvement so not sure if and when transplant may take place
Love and prayers for all

Dorothy

Brilliant news Susie Praying that your PP’s continue to drop. Hope you enjoyed Christmas. So glad you feel able to go forward again.

I finished cycle 8 and am now on course for a stem cell transplant, seeing the team on 2nd January, although I have an MRI on 31st December because of lesions on my upper spine.
Still the treatment is working I…[Read more]

Hi Susie

Hope you get a good response from the secretary and yes they should give you copies of all the letters.

You have had a fantastic response all ready 63 – 8 in two cycles. I am on Cycle 8 and still have the Septarin and all the other raft of drugs. I started with 4 cycles but then went to 6 then 8 my Proteins came down slowly from 49 to…[Read more]

Hi Susie
Yes I am on Septarin (co- trimoxozole)
I always write a journal and questions before I go to the consultant meeting – and I always write what he has said and any response to questions as it helps me remember later.

And Yes I always receive copies of letters after each consultation I keep them in a file and mark anything I want to ask…[Read more]

Hi Susie
Sounds like you have a very poor team and consultant. I cannot praise my team enough, although there is a new registrar who is less than helpful …but i have are a complaint about his manner he messed up my drugs and appointment time ..easily sorted by the admin in my team. We had a coffee morning this week in the clinic and the…[Read more]

Not an expert just a relapsed patient. My paraproteins began to rise slowly but took well over year or so to get to the point when extra investigations were needed. I am now on Velcade treatment regimen after X-ray, MRI, ultrasound, bloods etc and consultations. It is hard to give any advice as every patient is different and consultants have their…[Read more]