Hi Dawn, I too attend attend the LRI, and like Tony I attend the special clinic as like Tony I am on the trial. However, my latest visit (12 days ago), I had to go to the usual clinic, there was a 2 hours delay as there was a shortage of consultants, I was eventually seen (Dr Barton) two and a half hours later, and then I was sent upstairs for…[Read more]

Rosie

My heart goes out to you and your family. I hope you find comfort in time and focus on the good memories.

Look after yourself and don’t be afraid to ask for help from your doctor to get you through it.

You will be in my prayers.

Maureen x

Thanks Robert but decided not to buy the book. Everyone’s journey is different and we have to stay positive.

Regards

Maureen

Hi Jean

Good to hear from you and glad you are now only working part time. It will take away some of the stress as we all get anxious when things start going wrong. Hope the treatment works for Mike and he gets into remission . Ian is on 4th cycle of revlimid and so far so good but we all know how quickly things can change.

Take care

Maureen x

Hi

Sorry to hear your dad passed away so quickly after diagnosis.

My husband was diagnosed in October 2012 and he has had a rough time but as long as treatment is working we live one day at a time and try our best to live a normal life. I get very anxious when we go for his monthly results.

Can you let me know the name of the book.

Time is…[Read more]

Tom posts on myeloma support group on Facebook.

Megan

Sorry to hear Phil has relapsed. Hope you get treatment sorted and on to remission x

Hi Vicki

We don’t know if Ian will get a SCT, it’s wait and see how low his FLC come down but some people have been on revlimid for years. The dosage of dex will be reduced to 20mg for the first 4 days on his next cycle. I am seriously thinking of Ian being referred to The Beatson in Glasgow as they have myeloma specialists. Consultants at…[Read more]

Hi Vicki

Sorry to hear you have both been having a tough time. Myeloma is so unpredictable and we try to live our lives as normal as possible until a relapse.

Velcade didn’t work for Ian but he didn’t have cyclophosphamide with the dex. He has just finished cycle 3 of revlimid and dex. FLC are down to 329. He had a blip where they rose by 200…[Read more]

My husband was diagnosed 2 years ago at the age of 56. I cried all the time and could not function as he was kept in hospital with a lesion on his spine and then had spinal compression . He did not cope very well and is on an antidepressant , which does help. He also had a psychologist .

I take diazapan when I feel really anxious and can’t sleep…[Read more]

Thanks Megan

No results yet but spoke to a specialist myeloma nurse at The Beatson in Glasgow who was very nice and calmed me down. She thinks it is too early to change treatment yet and to be referred for a second opinion to Glasgow

Brilliant news Michele. My husband hopes to get remission and SCT. He is on his 3rd treatment revlimid and FLC have come down from 1200 to 530 after his 2nd cycle.

Andy went through CTD, velcade and DTPACE pace but didn’t get remission. He went onto revlimid for 2 and a half years and now on polimoid. Look at his posts.

My hubbys consultant would not put anyone through SCT who are not fit. Think carefully about treatment.

Good luck x

Thanks

Sarah how are you coping?

Hi Cupcake70,

Firstly hello and welcome, I do not get on here as much as I would like but it is great and a friendly and very helpful site, quite unique to us!
when I read your post and concerns it took me right back, I am post sct approx 22 month, not all plain sailing but well worth it. Like Wallace I found the Melphalan awful. but since early…[Read more]