[bandityogaParticipant]

Carol

Ian is going to the hospital dentist for treatment. His appointment is on Monday but don’t know yet if he is having an extraction.

Maureen x

[bandityogaParticipant]

Thanks to you all for your good wishes. I will keep you updated on Ian’s progress.

Stanley,

Ian harvests tomorrow, hopefully he will have enough stem cells on day one.

Maureen x

[bandityogaParticipant]

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 started rising again. He is now going for SCT and will harvest on Monday. I am praying he will get a good remission.

Have you heard from Jo?

Maureen x

[bandityogaParticipant]

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 prayers.

Maureen x

[bandityogaParticipant]

Great news Stanley

[bandityogaParticipant]

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 not changed consultant.

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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 etc for SCT but trust in god to pull him through it. I wish you well for your forthcoming SCT and will pray for you.

Maureen x

[bandityogaParticipant]

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 as he is not helpful at all and also tells us this is very bad.

When explaining SCT he said that Ian could end up either dead or bedridden . Consultant at Glasgow explained the risks but also said it was a common procedure.

Go to another consultant, it is your rite .

Hopefully you will get the right treatment for Colin soon.

Keep calm.

Maureen x

[bandityogaParticipant]

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 ways and means to increase stem cells. Plixifor being one of them.

I only hope it will be worth it and Ian will get a good remission . I’m a bit scared to be honest.

Hope you are keeping well and you will also be considered for a SCT soon.

Take care.

Maureen x

[bandityogaParticipant]

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

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

Hi Jane

How much remission did you get?

You are a survivor and have given us hope.

Maureen x

[bandityogaParticipant]

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

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