Hi Mavis

You have been lucky that CTD has given you remission for 5 years although it did work for Ian but he only had 3 and a half cycles as he had to stop to let his bed sore heal. He had no treatment for a year then 3 cycles of velcade and dex which didn’t work, then 6 cycles of revlimid and dex which brought down FLC for 4 cycles then…[Read more]

So sad that your husband has lost his fight with myeloma. Stay strong for your kids and remember all the good times. Sit down and talk to them, perhaps you need counselling, as he was taken without warning. Did you have time to say goodbye?

I try to stay positive but know that one day my husband will be taken too.

Sending you hugs and…[Read more]

Great news Stanley

Val

I would request an MRI scan for the lump in hubby’s back. My hubby had a lump on his back which was spinal compression. The radiotherapy will reduce any spinal tumour. He is now going for SCT although his FLC are 680. If you aren’t happy with your consultant, get a second opinion. Ian would not have been put forward for SCT if we had…[Read more]

Hi Andrea

Good to hear you are home and SCT wasn’t too bad.

My hubby is harvesting on 16 March then he will be in as soon as a bed is available. I’m getting a bit nervous.

Hope you get a long remission x

So sorry to hear Scott has passed away. He helped me when my husband was diagnosed and I was going through a difficult time.

Condolences to all the family

Maureen x

Vicki

It is so much better when the consultant has more empathy and explains things well. Hope the treatment is working for Colin and yes this is Ian’s best chance.

Amanda

Ian had spinal compression and his mobility was affected but now walking with one stick, driving the car and at the gym twice a week. We are both a bit scared of infections…[Read more]

Hi Vicki

We have an awful consultant too. Very abrupt and all doom and gloom. We have to say to the receptionist when we go to the clinic that we don’t want to see him, although this didn’t work on our last 2 visits. Ian would not have been put forward for SCT if we hadn’t seen a different consultant. I have been in tears when I have seen him…[Read more]

Hi Andy

Ian’s FLC were 695, 2 weeks ago and revel8mid not controlling the MM. Hopefully the FLC will come down after the cyclophosphamide. He will be admitted next Thursday for 2 days, unfortunately it falls on my son’s 40th birthday but this is more important.

He hasn’t had his bone marrow checked as consultant at The Beatson said there was…[Read more]

Good luck. Hope all goes well and you get a long remission

Maureen x

We saw the consultant today and Ian is scheduled to go into hospital on 6 March for high dose cyclophosphamide then GCF injections and hoping to harvest a week later. Should have SCT soon after. Hoping that this will give him remission.

Maureen x

Hi Jane

How much remission did you get?

You are a survivor and have given us hope.

Maureen x

Hi Clare

We have a Braun ear thermometer as it was thought to be the best and is very accurate.

Hope your mother in law is getting good treatment.

Maureen x

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

Maureen x

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

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

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…[Read more]

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…[Read more]

Hi Mavis,

Thanks for your best wishes and reminding me about my toolbox! 😉

Hope you are okay xx
Take care
Love

Karen