I found our consultant to be very negative too. My husband had CDT which gave him 1 year’s remission, then 3 cycles of velcade and dex which didn’t work, 4 cycles of revlimid and dex brought his FLC down to 54 but consultant said, his words, we were in a very bad place, no SCT as he was refractory and he would have to think about a trial. We…[Read more]

Dear Vicki,

I am so sorry to read about Colin’s passing.

Wishing you all the strength and love at this sad time.

Lots of love

Karen xxx

Hi Liz

It must be a worrying time for you both but stay positive. I hope the second lot of DTPACE will zap those FLC so Kev can have a SCT.

Hoping all goes well.

Maureen x

You did well to get out in 14 days. My husband went through his SCT in May an got out in 16 days but unfortunately got an infection the following day and ended up in hospital for 10 days. He is now doing well and FLC are now 16.

Hope you get a good remission.

Maureen

My husband had many different emotions when he was diagnosed and used to cry a lot when he was on CDT. He was assigned a phycologist which he really can’t remember much about. He was also put on 20mg of citalopram antidepressants which did improve his mood.

Hope all goes well with your dad’s scan.

Maureen x

Hi Ben

I would be interested to know if you are offered different treatments at The Marsden.

Ian is doing well and FLC now at 16 which is the lowest they have ever been.

Maureen x

Hi Ben

My husband sees 4 different consultants at our clinic in Larbert, Scotland. We have found this beneficial as one consultant said he would not get a SCT as he was refactory but another put him forward for SCT which he had on 14 May and found it wasn’t too bad and was home in 16 days. We are still waiting for the results of SCT but he feels…[Read more]

Hi Jan
sorry to hear your FLC have increased, book that holiday and enjoy every day without treatment.

We are off to Northumberland for a few days. Ian can’t fly yet until he gets the results of his SCT which should be end of August. At his last meeting with the consultant his FLC were 42 which is the lowest they have ever been. We are hoping…[Read more]

Hi jan
Good to hear from you 🙂
Steve is on lenomide can’t spell it and vorinstat

His sensations come and go , and says it a cold feeling from deep within
Also I notice his voice is weak at certain times in the month

Did you read the article, in the mail on Sunday about mm

Are you taking drugs at the moment ?

Xxx

Hi Vicki
So sorry to read your posts .. As others have said really hope Colin can come home soon..
Thinking of you both
Lolly xxx

Val

Try to stay positive and take one day at a time. What chemo is he on? My husband had chyclophosamide to prep him for SCT. His FLC came down to 580 and then they harvested. Everyone has a high dose of mephalan and dex before SCT. Speak to his consultant or the nurses on this site if you are worried.

Maureen x

I always ask for a printout of the results and either the consultant or the MacMillan nurse provides this on the same day. It is your right to know about bloods etc, can you see another consultant?

Congratulations to you both and well done for putting it all together at such short notice. I hope Colin is feeling better and he can continue with treatment.

Love Maureen

Hi Vicki

How is Colin? I do hope they have found the source of his infection and he will be home. Did the doctor’s try different antibiotics?

I have been praying that Colin’s bloods will improve and he will get more treatment.

Take care of yourself.

Love Maureen x

Hi Liz

Hope all goes well for Key with DTPACE and SCT.

Maureen x

Hi Tony

Ian had a SCT in May and he is recovering well. His FLC were around 500 when he harvested so the consultant doesn’t think he will get a full remission , as long as they keep steady, we will be happy.

I am always busy too, painting a fence at the moment and granddaughters staying over next week.

Hope your treatment works and you don’t…[Read more]

Well done Richard, you are an inspiration.

What is your next goal?

Maureen x

Oh Vicki

I am so sorry for you both and hope you have lots of support and I that Colin can be at home soon.

Ian is doing well, neutrophils now at 1.3 and I pray that his SCT has worked as there are not many treatments left for him.

As cygnet said this community is like an extended family and I feel the same. We started this myeloma journey…[Read more]

Well done, what an amazing amount.

Hope you are keeping well Tony.

Maureen