Hi

You will find wonderful supportive and knowledgeable people on this forum, so keep posting. I am 13 weeks post transplant and recovering well, having been diagnosed 1 year ago. Have you started treatment yet?

Carol

Hi

I think it was the thalidomide that caused me dizziness. Are you asking it about an hour before bedtime?

I asked Occupational Therapy to bring me some equipment, for example a frame around the toilet, which I used to stabilise myself, especially of a night time and a seat over the bath, as very often I was too dizzy to use the shower…[Read more]

Hi Eve

You are right about me worrying about lack of hair and scars! These things are so minor when I read what others are going through, but I guess the time will come when I have more serious issues to face. Looks like my London flat is sold, so when school finishes on 18 July, I plan to be on the next available plane to Oz. There you will…[Read more]

Hi Eve

Yes after the second doctor came in and helped the first trainee doctor to remove it (this was while I was still in hospital after the transplant) they said that the line hadn’t all come out. I don’t understand why, when they had already cut me, they didn’t go back in and remove the cuff before stitching me up. I guess as haematologists…[Read more]

Oh Mandy what huge decisions you are being forced to make! If it would reassure you then seek another opinion. Not everyone suffers for months after transplant but I guess your consultant knows your situation better than anyone else. Sending strong positivity your way -hoping you make the best decision for you and your family. Have you thought…[Read more]

Hi Rebecca

Well that’s just the info re drugs that I need…no way am I taking antibiotics for a year. And you didn’t even have Septrim! Consultant says that is to prevent pneumonia. I wanted to fly to Ireland next week (11 weeks after transplant) and to Bosnia in May or June, but am definitely returning to live in Australia as soon as the 6…[Read more]

Hi
I understand how you feel about losing “me.” I read of other sufferers talking about their new “normal” but I just want to be normal like I was before diagnosis and all these bloody toxic drugs. Sadly I don’t think that is going to eventuate. I also have neuropathy in my toes which makes walking feel strange, but luckily no other major pain.…[Read more]

I had the same problems signing in a week or so ago. I gave up that night, tried the next day and it worked. I wonder why it randomly signs you out?

Carol

Mandy

I think the blogger, Jet, has been through this double transplant treatment with an allo for the second transplant and she is also younger. Although she is suffering some problems now with graft versus host disease from the allo, she seems to lead quite a full life. Whatever we choose in this battle is a gamble, but as you say at 50 years…[Read more]

Hi Andrea

I concur with Tom. I had a broken collarbone, so was off work at diagnosis but as I progressed with the CDT there was no way I could continue working. For the last 2 cycles I really just moved from bed to chair and back again. In fact I think I suffered more from side effects during the CDT, than after the transplant. So don’t push…[Read more]

Well done Tom! You are an inspiration.

Carol

Hi John

Be prepared…things will get worse before they improve, but it is doable. Not sure about the Velcade as well as all the other drugs they hit you with. They will give you lots of anti nausea medication too, both orally and through your IV line. I had to have some potassium during the days I was unable to eat and blood (yuk!) and…[Read more]

Hi Keith

Be very proud. They only need 2 million/kg for a transplant, so I reckon you have far more than you need. This is an excellent result. I still have to claim the record though, as I produced 15 million per kg, enough for 7 transplants! For my first transplant 2 months ago they returned 5 million cells/ kg and as I weigh 90kg that’s a…[Read more]

Hi Jean

Progress is being made thank goodness. Both of you keep fighting, you will get through this.

Carol

Hi again

I read your earlier posts and can feel the fear you express about SCT. But honestly the CDT side effects were (at least for me) worse than the transplant. For about the last 6 weeks of the 18 week CDT course, I could barely function. But we all just do what we can to get through whatever we have to do to survive. I have a saying on my…[Read more]

Hi
I know it is terrible! I used to feel sorry for my poor husband who couldn’t do or say anything right! Doctor gave me “come down days” taking 10, 5 then 2 steroids after the high dose. Mainly because my heart slowed own drastically on the withdrawal. But the lower doses helped with the withdrawal symptoms. So glad I am off all treatment at…[Read more]

Thanks for the photos Helen…there’s hope for me yet…but still no growth after 9 weeks! Depressing!

Carol

Hi John

Enjoy your food while you can….soon you will be revolted by the sight of anything related to food! Having said that, although I was unable to eat for a few days I still didn’t lose weight! I did lose a bit when I came home, but have put it all back on! I do hear of other people losing weight however. Last blood test 3 weeks ago has…[Read more]