[bandityogaParticipant]

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

Maureen x

[bandityogaParticipant]

Hi Andrea

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

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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 Ian will get into remission and get a SCT?

He starts a week on Monday so fingers crossed it works well.

Maureen x

[bandityogaParticipant]

Hi Joyce

My husband, Ian, has had 3 cycles of velcade and dex. He has FLC myeloma. The first cycle brought hisFLC from 840 to 580, unfortunately they have risen on cycle 2 and 3 and are 860. We requested if we could add cyclophosphamide and were rejected by our consultant. Now going for second opinion on Thursday to Western General in Edinburgh.

Tom Lappin , who is also on this site had the same response. His consultant added cyclophosphamide and treatment is now working.

I know it is a bit harder on you, but worth it if it works.

Maureen

[bandityogaParticipant]

Thanks for all your replies.

We just want to try and see if adding cyclophosphamide will work. Consultant advised that this combination isn’t used at our hospital. Think it is a postcode lottery what treatment you get which really unfair. Ian hadCTD which had to be stopped after 3 and a half cycles to let his bedsore heal. This brought his FLC down from 4000 to 52.

Sal
Hope all goes well with hubby’s SCT

David
When we’re you first diagnosed and how much remission did you get after SCT?

Hope you get a long remission on revlimid.

Andy
Hope you get some sleep tonight.

Maureen x

[bandityogaParticipant]

Congratulations. Hope you have a long remission

[bandityogaParticipant]

Hi Sarah

Glad to hear M is making progress and DTPACE has worked. Keep me updated on SCT.

Hubby on velcade and meeting with consultant on Monday. Fingers crossed FLC going down.

Just returning from a lovely holiday in Cornwall.

Never give up hope and keep praying.

Maureen x

[bandityogaParticipant]

Vicki

Ian is on his 3rd cycle of velcade and dex. After 1st cycle FLC went from 820 to 545 but rose to 660 after 2nd cycle. Consultant thought it might be a blip but would think about changing treatment if FLC continue to rise. I asked if he would add cyclophosphamide but said no as velcade wouldn’t be working. Not very happy so phoned Maggie. She said if Ian has had an infection recently that FLC would rise. She also advised that if the consultant was intent in changing treatment to seek a second opinion to add cyclophosphamide. Ian had an infection in his back wound so hoping that was the cause, he is also feeling well and improving in posture and walking
We haven’t been to Cornwall so looking forward to holiday. We are flying to Bristol and hiring a car to Hayle near StIves . We have rented an apartment on the beach.

Love

Maureen

[bandityogaParticipant]

Hi Vicki

I hope Colion’s FLC go down next meeting with consultant, it may be because of infection. We are waiting to see if Ian’s will still be rising when we meet the consultant in 2 weeks time. Hopefully it was a blip in both cases.

Off to Cornwall next week Saturday for a week, can’t holiday abroad yet.

Thinking of you both.

Maureen

[bandityogaParticipant]

Hope all goes well with the SCT?

We attended an information day in Glasgow and would recommend it.

Good luck

Maureen

[bandityogaParticipant]

Hi David, Megan and Eve

Thanks for your replies. I spoke to Maggie and she informed me that as Ian had an infection it is possible that is why the FLC could have risen. I also asked the consultant if he would give Ian cyclophosphamide he said no as if his FLC rise again he will change to revlimid. Maggie advised me to go for a second opinion if this happens.

On the good side , Ian is feeling so much better and walking more. We have booked a holiday to Cornwall for a week at the end of the month. Hope we get good weather.

Maureen x

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