ps,

sorry Megan, only just seen your second reply.

That sounds a bit of a cocktail Phil is on, I hope it works out for him, sorry to hear of chest infection, they gave me really strong antibiotics for mine, shifted it.

Thanks for replying and best wishes
karen xx

Hi Megan and Vicki,

Thanks for replying and your kind words. Good luck to Phil and Colin on their treatment/jouney.

Vicki, I have stem cells (my own), in storage, but whether they would do that so soon after my first. I went on trials after diagnosis, and did 4 or 5 cycles of Thalidomide, then prior to my sct had mephalan (made me very…[Read more]

Hi Graeme

Nice to hear you are doing well.

We are going to Lanzarote and paid £102 for insurance for 1 week from nowicantravel and husband is still on treatment.

Maureen

Hi all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by this…[Read more]

Hi all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November checked up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by…[Read more]

Hi Jeff

Good news about your paraprotiens staying stable.

My husband had spinal compression and had to have surgery to remove the tumour and insert pins. He had to have the pins eventually removed as his body rejected them but he is mobile, drives the car and goes to the gym. His right leg is weaker and he has difficult holding his head up…[Read more]

Great news Andy. I hope you get a SCT and get many years of remission.

Ian’s FLC result wasn’t available today but all his bloods were good, he is being referred to SCT team in Glasgow for discussions.

Take care.

Maureen x

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