[bandityogaParticipant]

Hope all goes well Andrea and you get a good remission.

Maureen x

[bandityogaParticipant]

Thanks Richard

I didn’t think that they would stop treatment when FLC are 685, all bloods are ok. Hope we get good news tomorrow.

Hope you are doing well.

Maureen

[bandityogaParticipant]

Hi Helen

Ian hasn’t had much luck but consultant doesn’t want to add cyclophosamide to his treatment.

We are going to Glasgow tomorrow to speak about SCT and DTPACE’ I will let you know how it goes.

He hasn’t had Pomalidomide but consultant wants to leave that for last.

Hope your bloods are ok and treatment still working

Love Maureen

[bandityogaParticipant]

Hi Helen

You look lovely and glad you enjoyed the wedding.

Ian has relapsed/refractory on revlimid. To date he has had CTD, one year’s remission. Velcade, 3 cycles and relapsed. Revlimid, 7 cycles. FLC are now 695, and we have an appointment to discuss SCT but I am afraid that he will have to have DTPACE and will be weak going for a SCT. If he doesn’t go down this route it will be pomalidomide and what if that doesn’t work?

We have just returned from a week in Playa Blanca, Lanzarote which was the first holiday abroad we have had since Ian was daignosed in October 2012 and we really enjoyed it. Ian will be 59 in March and he has come a long way, now walking much better and looking well. I am now in panic mode.

Let me know if you decide to have another SCT.

Love Maureen x

[bandityogaParticipant]

Hi Jean

Has Michael been offered a STC?

We returned from a week’s holiday in Lanzarote yesterday and met with the consultant today to be told that Ian’s FLC are rising and are now 685 after 7 cycles. They did come down to 329 from 1200, but no treatment at moment until we see a consultant in The Beatson in Glasgow on Wednesday to discuss SCT but Ian would need DTPACE or similar to get his FLC in range. I believe this is quite invasive so if we don’t go down this route it will be pomalidomide. He has also to get a BMB next Monday. Quickly running out of options and I am in panic mode.

Like Mike Ian had 4 cycles of Velcade which didn’t work for him.

Hope they find something that works for Mike soon.

Love Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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 in the correct position but otherwise he is well.

Wishing you well.

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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 pomalidomide .

I can’t understand how each individual is different but they all receive standard treatment.

Stay positive

Maureen x

[bandityogaParticipant]

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. After 4th cycle his FLC came down to 154 but last results showed FLC at 358. He did have an infection and this has happened before so I hope it was a blip. We get latest results on Monday, fingers crossed

There is a myeloma support group on Facebook and Tom posts regularly on there. Get on Facebook and request to join the group.

What are Colin’s FLC at now?

Take care and hope all goes well.

Love Maureen x

[bandityogaParticipant]

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 Macmillan nurses at hospital should be helping you. Try to find out as much information as you can on your husband’s bloods, paraprotiens or Free light chains.

Maureen x

[bandityogaParticipant]

Val

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

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[Author]

Posts