Vicki

I also went into meltdown when we were told that velcade wasn’t working. I wanted them to add cyclophosphamide and even went for a second opinion but we were advised to move on to revlimid. It is working at the moment, I don’t know if Colin has had revlimid. There are more treatments available. Andy is having a lot of success with…[Read more]

Hi Vicki

Good to hear from you again. Ian was on velcade for 3 cycles. His FLC came down on the 1st cycle but started rising again on 2nd and 3rd cycle. He was very grumpy and impatient when on dex and used to fall asleep in the afternoon. His feet and ankles were very swollen too. He is now just finished his 6th cycle of revlimid and dex.…[Read more]

Tracey

I couldn’t cope when my husband was diagnosed and I was .prescribed diazapan from my gp which took some of the anxiety away. You will calm down and cope. It is now over 2 years since my husband was diagnosed and our first year was horrendous as he had spinal compression. My faith helps me.

Stay positive and talk to myeloma nurses and…[Read more]

Val

Forgot to say that Ian has an injection of clexane daily to prevent dvt

Maureen

Val

Ian’s tummy is big too, has to wear his trousers below his waist. It is the dex which makes it swell up.

I found I couldn’t cope for the first 3 months and the gp prescribed diazapan which calmed me down . It is now over 2 years since Ian was diagnosed and we cope much better while the treatment is working.

Maureen

My husband was prescribed 20mg of citalopram for depression when he started CTD. He had dex reduced from 40mg to 20mg as he had chemotherapy brain and found it hard to cope. Find out as much as you can about his myeloma and ask questions.

Velcade made Ian’s feet and ankles swell.

Stay positive

Maureen

Hi Jean

I’m sorry you are both having a rough time again. I will pray that Mike’s pp come down to 19.

Ian is is on cycle 6 of revlimid and dex and so far all is well but still waiting on results from last week.

Stay positive

Maureen

Thanks Megan I found an MS group online not far from us which offers hyberbaric oxygen. I will contact them after the holidays.

Maureen x

Hi Peter

Do you get the barbaric oxygen privately? It might help my husband’s back to heal after spinal operation. He has a little bit that is very slow to heal after one year. I also read it was good for myeloma.

Maureen

My husband had screw stabilization but he also had a tumour removed and compression of the spine. He had to have the screws and rods removed as his body rejected them and they caused infection. I do not know how long your recovery time will be as my husband’s was not straight forward due to restricted mobility.

I would ask your surgeon.

Hope…[Read more]

Hi Lynda

My husband was 56 when he was diagnosed with mm. I spent the first 3 months in a state of constant fear and couldn’t stop crying. We are now 2 years since diagnosis and although things are not perfect, we try to live each day at a time. I got diazapan from my gp to help me sleep. The nurses on this site are very helpful.

Stay…[Read more]

Hi

So sorry to hear your husband passed away. As Eve says, he is now at peace and is not suffering any more. I hope you have family and friends to comfort you.

We will continue to fight the good fight and hope they f7nd a cure soon.

You are in my prayers.

Love Maureen

Helen

Ian had good results, FLC have come down to 154. We are so relieved and really pleased. Had a talk with consultant regarding SCT. She wasn’t sure whether it was better to stay on revlimid or go for SCT, we shall see if Ian’s FLC come down further then he would definitley harvest cells.

Hope the plans for the wedding are going well. Are…[Read more]

Hi Helen

Sorry to hear you are no longer in remission but I do hope pomalidomide will get you back there. You have had a busy time, when do you move house, and will it be easier for you.

Exciting times for your daughter in submitting a film and coming second in her category. It might be the start of zometa8.ng big.

When is the wedding? It…[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]