Hello Martin

With the amount of damage to your back,I would expect you to have been in sever pain and needing medication for it!!!

The consultants must have done a Skelton ex ray plus MRI,scan which show the damage,if it’s pain from that area ,there should be some relief as chemo does the job of removing cells,but if it’s the bones crumbling as…[Read more]

Gosh Carol, I can’t believe how unconcerned your GP seems to be.
Fortunately mine is wonderful and if it wasn’t for her recognizing MM so quickly, I wouldn’t be at the point I am. She never minds me making an appointment to see her if I have any minor worries MM related or not.

The problem with Septrin for me was that within 4 days of starting to…[Read more]

Hi Carol,

Before I had my SCT it was explained to me that the Melphalan I’d been given was known to amongst other things, strip the lining from the inside of the lungs and that I would be put onto a drug to ensure I’d be protected from pneumonia etc.
It turned out that I was allergic to Septrin, so for a year after SCT I had a monthly nebuliser…[Read more]

Hi Stu, sorry you have had to join our group but welcome!

Everyone on here is very friendly, please don’t be afraid to ask for help or ask questions (no matter how daft they might sound) and don’t be afraid to cry, we’re all going through it.

Hope all goes well with the Chemo tomorrow, I know it might be hard but try and keep as active as you…[Read more]

Exactly the same Rebecca, my hair grew back very thick and ultra curly, I had a real mullet. Never had curly hair before, hated it but let it grow for a while, went to the barbers had it all cut short and the curls never returned. Gone back as it was.
Regards
Tony F

Hi Angeline

I have to ask how long is a piece of string!!!instead of thinking how long will it last,think how long you are going to have your Dad.

People choose there own time and own way to die,embrace it and do all you can,it might sound a bit old fashioned ,these days we hide it away,in hospitals homes or hospice,I am not knocking it,it…[Read more]

Hi John

You do not give much info on your dad age treatment and so forth!!!!!
So it’s a bit hard to reply????

I can say when you have Myeloma you just want to get on with treatment,people react different to treatment even to the point of treatment being changed!!

Your dad asking for a month off means he is having problems find out what the…[Read more]

Hi Frances, yes I’ve had eye probs though nothing quite as bad as yours. Mine started with really itchy eyes, had to rinse them couple times a day. Then following eye test at opticians was referred to eye clinic with glycoma, was given eye drops, that appears to have cleared the problem but have to report back in 6 months. This is all very recent…[Read more]

Hi Anthony

So sorry to hear your news about your myeloma returning after such a short period of time. In your post, you ask about details of clinical trials. If you look on this site under the heading of clinical trials, you can find full details about various trials available for relapsed patients across the UK.

Very best wishes.

Jan

Thanks Helen. It’s been a sad time.
No news is good news I think! My PPs have remained the same. Hopefully I’ll get a period of stability.
Just got our insurance for our trip to Kefalonia £67 for cover for the both of us! Must be the cheapest yet. Though the phone call was quite long and probably costly.
I got insurance when I was on Revilimid…[Read more]

Hi John

Sorry to hear you dad is finding the treatment difficult. Some people are lucky to sail through chemotherapy without many side effects, but others can suffer various side effects such as weight loss, fatigue, infections, nausea, muscle weakness, loss of taste, hair loss, etc. Like your dad, I also have a curved spine due to three…[Read more]

Hello Den

When I was put on CTD I initially started on a 100mg dose and had it put up to 200mg after 2 cycles. I didn’t feel any different. It was just more pills to take!

I could have gone up to 400mg if needed but fortunately I responded very well on the lower doses.

I hope your husband continues to respond well.

So, you’ll be in the 70% success group. Good luck.

Richard

Hi,

Rally sorry to hear about your dad, no matter what people say it can’t take away the way you feel and the despair that such news bring. However, for your question, it is hard to give an answer, it really is about the individual person – how much fight they have in them. I’m sorry I can’t be more specific but there is no specific answer.

Hi David.
I’m just about to try and get some sleep before I start to read lol.
I hope everything goes well with the operation and you can cross it off your list.
I would like to be loose now and again lol I’m mainly tight 🙁
How did the skin biopsy go?

Every day is a gift

Andy

Hi DavidH
As DavidM indicates constipation is a seldom talked about but constant bed fellow with myeloma treatments. I find Dex bungs me up good style. And being on Dex once a week every week takes it’s toll. As DavidM says note down when it happens and you will see a pattern and hopefully you’ll be prepared and able to take some preemptive action…[Read more]

Hi Scott
Sorry for the delay in replying.
Just finished my cycle 8 and I’m on Pomalidomide and Dex. So that’s 8 28day months. I’ve not had any nasty side effects to report. Just the usual Dex highs and lows. I take 40mg of Dex once a week every week.
My consultant tells me she has things to try after Pomalidomide stops working though I’m a bit…[Read more]

Hi
I’ll throw my Dex induced bit of information in the ring. From what I’ve read I don’t think it’s so much cost based not having a 3rd SCT I think it’s statistics based. I could be wrong here but I have read or been told that the remission gained on a second SCT is “usually” around half the first. So I presume a third is shorter still. The…[Read more]

Hi Helen

Good the hear from you again 😉 my last PPs were 8.4! Unknown territory for me.
I know what you mean about ” another avenue closed” I got the same result from my brother and sister and I’m on Pomalidomide now cycle 8, I think, with not much to follow when it starts to fail. But hey ho that’s a worry for the future. At the moment I’m ok…[Read more]

Hi there,

Yes they tell all of us under 65 that it is uncommon but there seems to be a lot of under 65’s with it. The feeling poorly is normal, I don’t know what your consultant has told you but immunity system is severely compromised hence feeling ill all the time. I am surprised that you haven’t started Chemo yet, did they give any reason? As…[Read more]