Hi Mandy.
Just wanted to say I’m sorry your suffering so much.
There’s not much I can say in the way of experience as I’ve never had a SCT and never will. It’s a long story but a shortened version is I’ve not responded to the drugs.
The only thing I can think of is its something to do with the production of stem cells as I’ve read that causes bone pain though not normally post SCT. I do however have back pain due to the damage MM did to my vertebrae. Though that disappears when I’m at rest.
Sorry I can’t be of any more help I guess you’ve had a MRI scan.
Unfortunately life hardly ever returns to how it was post MM diagnosis we have to just try and get used to our new MM life.
Every days a gift
Enjoy it best you can
Andy xx
Hi Jeff
I was on pain killers for my back, very strong ones at times, but I stopped taking the stronger ones because I didn’t like the way they made me feel. So I stuck to paracetamol and oramorph. Post op I still get pain though it’s not as sharp as before where they operated. The trouble is my back has damage from top to bottom so if I’m not careful or do too much it’s very sore. My posture has improved some what though.
So in answer to your question on good days( when I don’t do anything) I can get away without pain killers.
Every day is a gift
And a joy
Andy
Hi
I’m very sorry to hear about your dad’s problems.
Like Tom and David I was warned of the danger of dental extraction whilst on Zometa. I was told before any extractions I had to stop Zometa for 3 months and also not start again till 3 month post extraction. I was also given a leaflet to take to my dentist though she knew about it already. Your dad’s dentist should of asked for a list of every drug you dad was on before doing any work on your dad. I have to update my dentist every time I go for a check up.
Osteonecrosis is a well known, if rare, side effect of bisphophanates. My dentist sees me every 3 months to keep a check on me.
I don’t bother with my GP if I have ANY medical problem I go to my haematology day unit first. They know my full history and organise appropriate treatment for me.
Every day is a gift
And a challenge
Andy xx
Hi Carol.
My paraproteins started at 49 in Oct 2011 tried all the usual treatments and my PPs wouldn’t go below 35 I’ve now been on CRD for 22 cycles now and the lowest reading I’ve had was 12 for one cycle only I’ve been around 20 for most of the time. No chance of auto or allo transplant for me my last reading was 31 so movement to my next treatment is imminent possibly pomalidomide. So to date I’ve been on full strength chemo for 26 months with all it’s side effects. I would love not to take any more drugs but I’d love to see the New Year in more. So I’ll do whatever it takes to extend my life as long as possible.
I do hope that you get to a long and drug free remission post SCT Tom is a great example. Hope for the best and fight for it as Richard say a positive attitude will help greatly. “Why me” won’t help at all. Even I’ve managed to avoid that so far lol.
Every days a gift
Well worth fighting for.
Andy xx
Hi David
That’s great news David.
From what I thought I knew about Revlamid I thought it was a slow burner and it takes it’s time setting about its work. I’m sure it took 3 or 4 cycles and the introduction of cyclophosphamide before it worked for me. So hopefully your readings will go even lower.
Good luck
Every day is a gift
Open it carefully
Andy
Hi Jeff.
I can’t tell you wether partial remission is as good as it’ll get for you. I think 6 cycles is the norm for CDT and I think they’ll be trying Velcade to push your paraproteins down a bit further before going onto SCT. Velcade works well and quickly in most people and I’m sure it’ll get you to SCT if that’s the route you want.
I had kyphoplasty on two vertebra at the end of September and regained a little of my lost height and improved my posture. I’m sure vertobraplasty will do the same for you.
Every days a gift
Enjoy them
Andy
Hi Maureen.
I’m glad to hear Ian is out of hospital at last. I hope his wound heals quickly and you can both start enjoying a “normal” life the best you can.
Every day is a gift.
Unwrap it gratefully
Andy xx
Thanks Tom
As you know I was aware of Dai's passing this morning when you posted on face book. I have been thinking of Dai all day.
In a short 6 months we have now lost two stalwarts of the forum. Both Dai and Keith had a great depth of knowledge about this awful disease about its treatments and the latest drugs that were in the pipeline.
Dai never gave up hope that he would make it it the next wonder drug coming along and battled to make it happen.
After I was diagnosed in Oct 2011 and joined this forum Dai was the standout source of information he would go into great detail of your treatment options, the drugs that were involved and the likely side effects. His posts would run to many words as he gave you a full and detailed reply to your posts.
I could go on and on about Dai's wonderful qualities but everyone on here is already aware of his qualities. He will be greatly missed on the forums. I feel myself privileged to have known him even though it was only through this forum.
Thanks for everything Dai. xx
Hi Eve
Just going to Ostend for 3 nights. Over night ferry from Hull to Zeebrugge so 5 nights away in total. We're going with a couple of friends so will be showing them around a little. Ie. Ypres and Brugge. I've been to Ostend lots of times used to do a race over there every year when I was fit to run.
Got a date with consultant next week to see where we go next.
Every day is a gift
Use it loving
Andy xx
Hi Vicki
Your right it's hard not to be negative at times. The best thing is to try and not to look back, you can't change anything that's happened, and try and not to worry about tomorrow because it'll spoil today. Today is all we can be certain of, and that applies to the healthy and the unhealthy equally, so your right Vicki & Eve we should all enjoy each day the best we can.
Every day is a gift
Enjoy it
Andy xx
PS We're off to Belgium tomorrow if everything goes to plan 😎
Good for you Eve. I never thought I'd see last Christmas the way I was Christmas 2011 but here I am still hanging around having to think about pressies for Steph again. Which is a chore but a lovely one.
Like you I don't plan very far ahead because with myeloma you never know when your time will be up.
I don't think you're being wacky or tacky and I hope you and Slim have a very long and extended happy Christmas together.
Every day is a gift.
Savour them.
Andy xx
Whoops just got my latest PPs result from last week. They're up to 35 from 25 :-0
Not good but all other bloods were better than usual for me and I'm feeling ok too! Hopefully it's just a blip a big blip but hopefully my next test results will be back down 😉
Fingers crossed that it was caused by a week on antibiotics or caused by the anti fungal drugs I was put on that may have caused my liver problem.
Every day is a gift.
Enjoy it.
Andy xx
Good luck with the new treatment Dai.
Glad you caught your infection quickly and it was treated promptly and effectively.
I may join you on a new treatment shortly just got last weeks PPs they're up to 35 from 25 :-0 Hopefully that's a result of being on antibiotics for a week or the new anti fungal drug I was put on causing me to have some liver problems. They stopped the anti fungals ASAP! Time will tell.
I don't want to give up on Revlamid just yet – the longer I'm on it the more chance of the new drugs coming available but you of course know all that.
Just finished my Dex for this cycle Dai. I take 20 tablets (40mg) on days 1,2,3&4 of my cycle.
Every day is a gift.
And hopefully a day nearer a cure.
All the best Dai
Andy
Hi Eve.
Slim is certainly been but through the mill! It's good you look after him so well.
It's a few months since my last MRI scan but I've had lots of X-rays recently due to my back op. I haven't had any unusual aches and pains other than post op ones so a MRI isn't necessary. As soon as I notice a new unexplained pain my consultant will have me MRIed. My PPs were stable round the 19-20 mark but have slowly gone up to rest at 25 for now over the past few months.
Hope you enjoyed your cuppa and the storm left you alone. xx
Hi Maureen.
We're being as busy as we can whilst we can. It can be daunting traveling away but it's got to be done 😉 after the first few trips you get more confident. Start with small short trips and build from there.
I hope everything comes back from the MRI and blood tests all right and you can start planning.
21 cycles equals 84 weeks of chemo Maureen. That's just my latest regime I've been on chemo constantly now for just over 2 years! So I'm not blaming the beer lol. xx
Hi Tom.
You are managing to work which is no mean feat! and your drinking is something I would love to achieve lol.
My back improvement is welcome though I still get aches and pains from it and still can't get far, to the bar and back is ok 😉 but I'm a lot more upright and got some of my lost height back.
I'll carry on carrying on and hopefully with another back op it will be onwards and upwards lol. xx
Hi San.
Thanks for your good wishes they are much appreciated.
We had a great anniversary and it wasn't spoilt even remembering that the words multiple myeloma came into our lives 3 days before we married! xx
Hi Dai,
We love the lakes. We always stay at the same B&B in Bowness-on-Windermere and use it as our base. We have a travel guide of short walks for the less mobile. Ie no stiles, gentle inclines and plenty of resting places. We go midweek out of high season so it's quiet. The roads are passable and more importantly there are seats in the pubs and restaurants.
My post op aches and pains have all gone now. So that's my lower back sorted the surgeon is going to see if there's anything can be done for my upper back next.
My consultant is getting a bit nervous about the slow rise in my PPs but I'm of the mind that as long as the is no new further damage caused I'm fairly happy. 😀
I don't think I'll get to SCT due to too much chemo and radiotherapy. Though I'm not sure if I'd take it now if I was offered. I'm more or less doing what I want to do now. Though that's probably influenced by the fact SCT is very unlikely and if in the real word I was offered SCT I honestly don't know what my reaction would be. Though time away from these wonderful life saving drugs would be a blessing.
As you say Dai we do whatever it takes to get us from one day to the next. xx
Wishing you all well on this varied journey of ours.
Every days a gift.
Try not to waste it.
Andy & Steph xxx
Hi Debbie
In my opinion it's a crazy risk. After only one round of chemo his body won't have adapted to the strong chemicals he's putting into his body. Improving bloods are a good sign BUT is no where near remission. I personally went through a bad time for the first few months of chemo. Infections were a constant problem and hospital visits and stays regular. If anything untoward were to happen in America the costs would be astronomical.
Please don't go without proper cover.
Everyday is a gift.
Enjoy them
Andy x
