[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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 all goes well.

Maureen

[bandityogaParticipant]

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 positive.

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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 you enjoying retirement. I don’t know how I fitted work in. I do
pilates, a soft furnishing class, swimming and ofcourse lunch with friends.

Happy house hunting.

Maureen x

[bandityogaParticipant]

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 does bring out the worst in some people when deciding who gets an invite. My sister and I have not spoken for your10 years as she took offense that her son did not get invited with a partner. I had nothing to do with the invites and have tried to reconcile but I don’t bother now. Think it’s sad she can be so bloody minded.

Sorry to hear your dad passed away so quickly but he didn’t suffer.

We get Ian’s monthly results tomorrow. I am quite anxious and hope his FLC have either come down or are stable. All being well we would like to get a holiday in the sun either January or February. We had another short break at Rockliffe Hall in Hurworth recently. I love it, pure luxury. We all saw Kylie in Glasgow

Look after yourself.

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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

Regards

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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 a healer.

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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 Ian’s hospital don’t believe in adding cyclophosphamide. Can’t understand why every individual is different but all given standard treatment. Myeloma nurse said we need a consultant who thinks outside the box.

Ian gets very tired on the non dex days. He’s sleeping on the chair at the moment. He has come a long way and we changed the car to an automatic which he can now drive. He’s also going to the gym twice a week to build up his stamina. Think I should join him.

We are off for a couple of days to a lovely hotel near Darlington , Rockliffe Hall. Haven’t managed to get abroad yet but had a lovely holiday in Cornwall.

Keep in touch and hope all goes well for Colin x

[bandityogaParticipant]

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 so I was in a panic thinking revlimid wasn’t working. I had a visit to doctors for diazapan. I don’t take it all the time, but need it when things are going wrong.

How.long did Colin get in remission after SCT?

Hope all goes well.

Maureen x

[bandityogaParticipant]

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 . You have to look after yourself too.

Hope all goes well. Talk to your gp

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