JOe
You need to go to the newcommers button and press the link for how to change your picture you must be signed in to the site to be able to do it.
Print it off to make it easy on yourself. Or get a clever relative or neighbour to do it for you.
Min
Gaye
Not on the same scale as you but my sciatica pain was not responding to anything you can buy across the counter, the Dr gave me 30mg of codeine. to be taken with 2across the counter paracetamol and 2 cross the counter ibuprofen. The pain relief of all these things together is wonderful. Taking all them is not so good but whatever it takes to get some relief.
Im not sure if you can take ibuprofen. Peter is not allowed it due to kidney damage. But he is on Tramadol when not on morphine for his back pain. We make a funny couple with our back pains. Hopefully mine will go soon, he is stuck with his for some time. I hope you get some relief soon as i do sympathise with you on this.
Min
OK Jo
lets see if I can help you here. Sign in Press your name which will take you to an edit profile page. Press the profie picture, drag it in to the centre square and press the scale arrows on bottom left of your photo, until it fits into that square. Finaly press the save button bottom right hand side of your picture. Fingers crossed that should be it.
Jean I am in agony, poppin pills, even reduced to using a walking stick while bent double. Feeling very very old right now. I know in the scale of things regarding pain mm sufferers feel this is trivial, but I dont do pain!
Min
Hi Jean
Well that sounds interesting, dont know if I can do that. The closing date was 10Jan for applications, and of the 450 they wanted they got 395.
The package is enhanced in as much as I will get 3times the normal redundancy payout, and my pension, (like you 20yrs) would have been penalised for going before I am 65yrs will not now be. I may look into it when I get back to work as it sounds like it would be worthwhile and early retiremant could give me several more years to add to my package. Up to last week had not heard anything but I am off with a bad back…..nothing like Peters problems but sciatica which is bloody painful when your not used to pain. YOu have given me something to think about and will look into it when I get back. Thanks for that. Any money in my pocket rether than theres after working since I was 15 with a 3yr break for kids. will be welcome.
Jo please sort out your photo so we can see you!
Min
TOM
You know I thought I was going loopy the other day when I posted and it got lost in the ether. Im kinda pleased to hear its not me going gaga and its happening to others too. My Mum used to do her false knashers in bleach too.
With regards to zometa, Peters been having for a year past August. But only every 6weeks. His Dr has had 2 patients with the side effect of osteocronosis of the jaw so he is wary of being on it too long. Having said that, He did develop a further crushed vertebra whilst on it, so wonder if not being on it would have meant him having more.
Min
Found a bar of proper soap in the holiday bag, (Pears do you remember the pears advert) and can confirm it did NOT work. Picture this. Me with acute sciatica, and Peter with leg cramps. Up and down all night In fact he got worse if anything. so rang up and got a prescription for quinine off his GP. Will let you know if it works.
Min
Sorry to hear of your Dexastrous up chucking! I cant imagine having to take that many pills at once. Why cant they make it into a strawberry syrup?
I cant believe those NIMBYS. But I would be inclined to say that they should be blacklisted. They may not need a hospice today, and only time will tell if they will. But in view of there oposition to it they should not be allowed avail themselves of its facilities in the event of them secumbing to any kind of sickness that would warrant it.
Trouble is no one can see into the future……………
Good Luck with the next Dex event. Try making them into a sandwich.
Min
Hi Jenny
Its nice to hear your dad is taking little steps towards getting better. You cant rush this thing, and particularly so given his age and his new health problems.
I read you original post and was alarmed at the comments of the nurse who spoke to you. Myeloma is one of the rare cancers, and its difficult to know what she knows of it, was she a renal nurse? or a myeloma nurse specialist?
Whilst is may sound all up in the air. Your dad sounds like he wants to get better and he is still engaged in what is going on (dog shows) I am sure he will get there given the chance. Hospitals are intimidating places for the elderly. I believe he probably belongs to an age where he will do as he is told regardless of how he feels. He will need all the support you can offer him.You know what he is like so Give him time and be patient.
I wish him all the best and hope your step mum can overcome her fear of having him home. Im sure once the care package is in place he will make progress better at home. Perhaps a short time in a hospice as respite would be a good transition for them both. A hospice is not just for terminally ill people they are there to offer help. But you often have to ask for it.
Best Wishes
Min
Dear Gaye
You are an inspiration to all of us, and I do hope the new drug, works for you. Why do they have to give them such long names?
Let us know what Poma…die! is tablet or infusion?
I am curious to know, what drugs if any that you have been through have not worked on you? and what happened next so to speak. Do you have bone damage? or any other problems that exacerbate the MM?
You would appear to have an amazing team looking after you; helped no doubt by your indomitable spirit.
Keep well and keep on keeping us right as you are one of those with the T shirt (been there done that)
Where you go we or our loved ones will follow.
Best Wishes
Min
PS sorry for hi jacking your thread with a fellow northerner.
Oh I do love a bit of good news, congratulations granny.
I am right now lying in bed with my grandaughter who as I type is breaking out in more spots……Just discovered she has chicken pox. Poor sould. I think I should be worried. but I am more worried about her. Peter is home so hope I dont take it home to him. He is on acyclavore so possibly is protected by that. Better stay in warwickshire just in case! Dont see them nearly enough. Grandchildren I mean. I am here to deliver christmas pressys. Better late than never.
Min
Good heavens Kieth you do have to do some travelling for your treatments. Jane Conn did peters harvest and transplant and we see her most visits to ward 36, she is truly lovely woman as are all the staff. Peter had his Bypass done in RVI and they were great too. How long did you stay in after transplant. Peter wa:-| s out the same day and lately I have wondered if this hastened his relapse.
I am in warwickshire for the moment, traveling home tommorow when the match is on not that I care one jot in reality how they do.
I do care that you do well on velcade and stick with it. Good Luck for the results keep us up to date.
Min
Hi Dai,
I got the same e mail, and at the same time I got an e mail from Gill,with no content,signed webteam that I had sent her a few weeks ago! something is going on. Though the similar e mail refers to the myelomaforums.com which I may have registered at a long time ago. the Gill one refered to this site.
Time to do a virus check me thinks. Then again I was onsite today while at work and it was 'down' with a notice saying something like site maintenance taking place. hmm wonder what that was all about.
Min
Hi Keith no I did mean the second dose or second injection three days after the 1st.
It took some weeks before it got really bad enough to complain in loud voice and be heard. But as he had managed to break his hand that seamed to be a bigger priority.
And it did work for a while; at first there was no response; then a few cycles later his light chain figures which had gone ballistic where halved to 3500. Now they are back up to 5900. His other bloods are spot on, he looks really well!!! Probably the best I have seen him in a while. He feels quite good apart from the back pain and occasional cramp. Its so odd. They plan to try revlamid but we will find out more a week Tuesday.
Ok so your not a Geordie, but those people 'down south' (spoken with an odd accent) don't know what a Makem is! I [b]am[/b] a Geordie born and bred.:-| Live near to the Ferry on the Tyne. do you go to the Freeman Cancer Care Unit.? Peter was getting his velcade on Fridays and Tuesdays. He is now off it all but will be having his Zometa On Tueday in ward 36.(Day ward) I only ask as we meet people from Cleveland and Teeside there and cant believe they are driving past one in sunny sunderland.
I also cant believe you will be wasting your money watching that overpaid lot on Sunday. Especialy after we beat the sh** out of you last time LOL.
Wrap up well for your match and don't shout too loud!
Min
Well Kieth by now you will have had the 1st of your velcade and dex and will know all about the routine. Or lack of it, Peters first velcade was quite disorganised. He has his last one today, and mostly felt quite good and looks really healthy, belied by the fact that the velcade no longer works effectively!
The problem he had was after the second dose he had the most dreadful period of breathlessness, which when reported was poo pooed as a side effect. It took some time to get a D Dymer blood test to prove he had blood clots in his legs and lungs. Please be aware of this if you get breathless. He is now on daily heparin injections for the next 6months for thrombosis.
Otherwise no side effects to mention, when his platelets dropped he was told he may need transfusions but they never got below 50 and on the 10day break from meds,they recovered back to near normal.
Good luck
MIn
Hi Bridget,
Im pleased to here they are moving apace with your RT. Peter had just one massive blast when he had it, at the outset of his diagnosis. It left him feeling like he wanted to throw up, and he had a red mark where they gave him a temporary tatoo, to they could hit the right spot. The red mark was a little like sunburn and after/sun took the sting out.
It was 5-6 weeks before he felt the full benefit of it but it was effective.
Like you he is going to start on Revlamid soon as velcade has stopped working. I suspect its because the tumour in his spine is kicking out more nasty filth than the velcade can cope with. Plan to discuss further RT to get rid of it at next consultation.
I do hope you dont have too far to travel to get to the RT appointments as I imagine you will be exhausted after 5days and planning too.
Good luck when it happens.
Please keep us informed when you start Revlamid as it sounds really good.
Min
