We don’t have the cancer drug fund in Scotland either and pomalidomide has been refused here. Hoping it will be passed as it will be Ian’s next treatment if revlimid fails.

Maureen

All signed Richard

Maureen

Worrying Richard, perhaps Scotland should go it alone and have access to nhs.

Maureen

Hi Helen

We stopped in Padstow on the way home and had lunch in Paul Ainsworth , superb. I also loved a little village called Marizion near St Michael’s Mount and Mousehole . Bought the Mousehole book for the grand children.

We are off to London on the22nd to spend a few days with my daughter.

Consultant thinks Ian’s FLC will show no sign of…[Read more]

Hi

It is quite normal to stop treatment for an infection as the immune system cannot fight the infection whilst on treatment.

Hope this helps.

Maureen

Sarah

The friends and family who attended Mark’s thanks giving service is a testament that he was well liked and a good person who will be sorely missed but always remembered.

It is so sad you had so little time with Mark but you will meet again.

I hope life is kind to you and you find the strength through your faith to get through…[Read more]

Hi Helen

Ian is also on high dose steroids with revlimid, he only started this treatment on Monday and so far so good. A bit short tempered but I take myself off for a walk.

we also went to Cornwall for a week’s holiday at the end of July. We were in a small place called Hayle just outside St. Ives. We had beautiful weather and I loved it.…[Read more]

Sorry to hear you now have .skin cancer. Does revlimid cause secondary cancers?

Maureen x

Hi Andrea

Best of luck with remaining CTD and SCT? Hope you get many years of remission

Maureen x

Sarah

I cried when I read your latest post and hope I will be as brave when our time comes. I hope you find the strength from your faith and friends and family.

I will be thinking of you not only on Tuesday and in the future.

My thoughts and prayers are with you.

Love Maureen x

Hi again Tony, I am on the trial too, and go up to the Hope clinic, I agree it is much better, and seem to get seen to much quicker! One day we may bump into each other again. I know what you mean about getting tired. Keep well.

Karen x

so sorry to hear Eva has passed on. I spoke to her on the phone and she was very informative and friendly. so sad we did not meet up.

My thoughts are with her husband and sons.

Maureen

ps, sorry I typed in the tag box, hope I have no mucked up your thread! K x

Hi Tony, I am 19 months post SCT, I had my last baby injections at begining of July, and I am on 3 monthly clinic visits, mine is 14th August. So we are pretty much the same stage. I still have morphine for back, and 6 weekly Zometta. But I drove for the first time since diagnosis the other day! There are more positives than negatives post SCT…[Read more]

Sarah

I am shocked by Mark’s sudden death. He had come through so much to get a SCT and I prayed he would get through this.

I too believe that you will be reunited in heaven. Stay strong and remember all the good times.

Keep in touch.

Love Maureen x

Hi Vicki

Ian’s FLC rose from 52 to 640 before treatment was started.

Hope Colin has a few months yet before treatment. Why no second SCT?

Love Maureen x

Hi Andy

We were looking to add cyclophosphamide to the velcade and dex before Ian moved on to revlimid but consultant advised that it is used more down south than in Scotland and as Ian had a good response to CTD and revlimid is a sister of thalidomide but with fewer side effects his best chance would be to move onto revlimid. We are hoping that…[Read more]