[andygParticipant]

Hi Nick.
Sorry that your mums joined the Myeloma crew.
Quality of life is the big factor in the treatment or no treatment debate.
Your mums age will mean if the docs do treat her they won’t give her the “full” treatment however the side effects are still quite severe. Steroids are no walk in the park they lift you up and then you crash. Though I guess they won’t be giving her a big dose.
Normally they don’t start to treat MM until there is other problems besides a high level of PPs. So if that’s the case you have a bit of time to convince your mum to give it a try and if she doesn’t like it she can always come off it or try a reduced dose.
Though ultimately it’s your mums decision and you’ll have to support her the best you can no matter what she decides. Best of luck.

Every day is a gift.

Andy

[andygParticipant]

Hi Susie.
I was on RCD for 22 cycles and the main problems I had were being neutropenic most of the time ie neutrophils below 1.0 my other bloods weren’t too good either and nausea for a couple of days after taking the cyclophosphamide. Aciclovir, which I also took and still do is an anti viral and allopurinol which I didn’t take is for prevention of gout.
It’s hard to grasp when you start but you’ll be soon watching Holby and recognising the drugs used and what they’re for.

Every day is a gift
Use it.

Andy x

[andygParticipant]

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 and my neutrophils were nearly always below 1.0 maybe I wasn’t asked the right? questions. We use nowicantravel and do it over the phone. We have had no problems the last 4 holidays getting insurance at a reasonable price with them.

Every day is a gift.

Love Andy xx

[andygParticipant]

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

[andygParticipant]

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 to minimise the err problem. Fibre, fresh fruit and laxatives help.

Every day is a gift

Andy

[andygParticipant]

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 sceptical and I think I’ll be put on to older harsher drugs with the accompanying side effects. I’ve not got a good track record with drugs and I’ve been through most if not all the standard treatments and only Revlimid and Pomalidomide have worked for me.

I hope you get a good result with Pom/Dex it’s an expensive treatment and is only available through the cancer drug fund at the moment – good luck.

Every day is a gift.

Andy

[andygParticipant]

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 trouble with stats is they don’t reflect individual cases. Unfortunately NICE rely on stats for their cost/benefit analysis.
There is a debate going on now about SCT versus just the drug route and this is not cost based more quality of life based but this debate is on going with no outright winner yet.
A problem with going the private route is you may find it hard to get NHS treatment afterwards. That may not be true but it’s something again I’ve read on here.
I’m sorry I can’t be more definite but after nearly 3 years of chemo my brain is a bit muddled.
I’m on Pomalidomide at the moment and £200,000 would cover the cost of about a years supply.

Hope I haven’t muddied the waters I do tend to ramble on my Dex nights. As one whome has never been able to get to SCT there are drugs that can give you a good quality of life without the trauma of SCT and more are coming along all the time.

Every day is a gift.

Andy

[andygParticipant]

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 and my consultant is happy wth me.
Had another appointment today oops yesterday at the max. facial re my jaw and he was quite happy the way it was. Unfortunately as we were waiting Steph got a phone call to tell her her dad had passed away. We were due to drive down and see him as we knew he was in a bad way but didn’t make it in time.
Four weeks Sunday and we’re off to Greece get that trip to Italy booked!

Maureen I didn’t get a response fron Revlimid until cycle 4 or 5 I think when cyclophosomide was added to the mix. It is known as a slow starter my PPs crept up to nearly where they were when I was diagnosed but in the end I got 22 cycles of pretty go health out of it.

Ok that’s my Dex induced news bulletin.

Every day is a gift

Love Andy xx

[andygParticipant]

Dear Sarah.
Sorry to read your sad news. Such an eloquent and beautiful post.

I can only add my sympathies to you and your family and wish you the very best for the future.

Thinking of you especially for next Tuesday.

Andy xx

[andygParticipant]

Hiya.
When I was first diagnosed I was in and out of hospital frequently and didn’t think I would have very long. Talking about my diagnosis with anyone who’d listen helped me get everything into perspective and helped he come to terms with my myeloma.
We were married 3 days after the word myeloma came into our lives. Like I said previously the first 3 months or so I was in and out of hospital and doped up with painkillers. That all start in Oct 2011 and even though the medics have struggled to treat my myeloma I’m still hanging on in there.
It’s good your going to talk to some one they will put things into perspective for you and hopefully tell you what you can and can’t influence so you can channel your energies productively.
Don’t be afraid to talk about the future and dying as it’s your hubbies way of coping though it’s not doing you much good at the moment I believe the more you talk the easier it’ll
become.

Every day is a gift.
Open it and enjoy it.

Andy xx

[andygParticipant]

Hi David.
Yes PIP is the replacement for DLA. All new applicants go onto PIP straight away and DLA claimants will be migrated over in due course. It’s all a money saving exercise that’s costing hundreds of millions to implement and the only way they seem to save money is to cut the benefit payments and delay the payments as long as possible.
Oh Dex is getting me all political better stop before I start a rant 😉

Every day is a gift.

Andy

[andygParticipant]

Hi all.
Well I’ve been celebrating my PP result for the past week 😉 sunk a few beers in that time. Gideon Osborne will be pleased with the tax take off mine and Steph’s drinks.
I’m obviously hoping that the Pomalidomide keeps working for a long time yet but you never know with myeloma. I’ll see what my consultant says Thursday. Got to remember to order my holiday drugs off her some of the ones I have have passed their use by date.

David, I’m going to look out for plasters on old men’s heads when I’m at the hospital and nod at them sagely.
Right – I guess I’ll have to keep on going 🙂
Thanks for the support.

Every day is a gift.

Andy xxx

[andygParticipant]

Hi Maureen.
I agree it’s shocking the length of time it’s taken. When I applied for my DLA I had the form filled in by an expert at a charity. He even got it back dated for me to diagnosis! I only had to wait a few weeks. When I had to renew, for some reason I didn’t get a indefinite award, my consultant filled a good proportion of it in and I went back to the charity for the rest again it was processed in a couple of weeks and this time it’s an indefinite award – well till they move me on to PIP.

Every day is a gift.

Andy xx

[andygParticipant]

Hiya David.
It’s going to ge a busy few weeks for you I hope everything goes smoothly.
Your still on anti thrombosis injections! I get to take a little pink pill now instead. I think after jabbing myself approx 800 times my consultant thought I’d been through enough.
Your bloods should improve because Revlimid is known to depress them. It got my neuts down to 0.5 at times. Now I don’t think it’ll have much impact on your remission I can’t say I’ve ever read about one months miss having much of an impact!
Why are they stopping your chemo anyway? When I had my kyphoplasty I continued with it. I only had to stop my tinzaparin for one day.
I miss Dai’s insightful and well researched answers he’s sorely missed both as a friend and a font of knowledge. This forum is not the same without him.
Good luck at the dentists tomorrow David and I hope the tooth fairy is very generous.

Every day is a gift.

Andy x

Ps – my Dex night 😉

[andygParticipant]

Hiya
SCT is not a necessity in the treatment of myeloma. Though it is commonly used to good effect. There is a big discussion going on now as to the merits of just having drug therapy.
As your husband has been successfully treated with CDT he could stay in remission for a long time before he needs treating again. For a SCT to go ahead you need to be fit and in relatively good health it is a major operation.
CDT is usually the first line treatment, unless there’s a kidney problem then Velcade is used, Velcade is commonly used as a second line and now Revlimid is a 3rd line treatment.
Drugs are improving all the time and how and when they’re used is changing all the time.
There is more than 2 drug options left to your husband if he starts to relapse. I think I’m on my 5th or 6th different treatment regime. His doc may want to try maintenance therapy though I don’t think that’s big in the uk yet though it’s catching on. There are more drugs in the pipeline too.
Try not to worry about what ifs and treatments down the line concentrate on what’s in front
of you both now. If your husband is in remission he will not need any medication for his myeloma and you may get the quality of life you hope for.
Remember too SCT doesn’t work for everyone in rare cases they relapse quickly. Talking of rare cases I’ve been on chemo since diagnosis in 2011 the treatments just don’t want to work for me.

Every day is a gift.

Andy xx

• This reply was modified 10 years, 3 months ago by  andyg.

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