Hi Tom Eve and Ali
I feel so much better just knowing its not something really horrible and mm related and it will just run its albeit long course.
We had our flu jabs this morning too so hope I'm covered now.
Ali, after what you said about your mum, I asked about redoing childhood immunisations at our place last time and they too said only for people with allo grafts as they don't get much transferred immunity. So maybe ask again next time what the rationale and evidence there is behind it? I think we all would like to know.
As for work, well Eve you know by now that am tough old bird, so have worked full time all the way through!!!:-0 many people have stood by, wondering if they should learn how to use their biro's as emergency tracheostomy tubes and offering glasses of water, so I have managed. Sounded rather like a walrus in pain, but mostly felt coughing fits coming so ran of to the toilet. simples. 🙂 Been very tired but thought that was because I'd just gone back to work, and admittedly went to bed at 8 every night. Had had it for 6 weeks and 3 lots of antibiotics before tests for whooping cough went off. No one I know or work with has a cough, so I must have caught it in the shops or something, who knows……
Anyway I'm getting better now, and Tom, sadly I can really do grumpy, saint Timothy ( husband) will soon be needing much larger halo with what he has to put up with, but there you are, he promised for worse, sickness and poorer and we've got it all in spades now:-P 😉 🙂 😀 :-0 >:-(
Love Helen
Dear Dai
Have a lovely lovely day tomorrow. Talk to everyone and give Becky and Liz a wonderful day to remember.
Have fun, you deserve it, and hope the leg behaves itself ( and the rest of you for that matter 😉 🙂 😎 )
Love Helen
Hi Nettie
I think it's down to the dex effect of masking infection and the revlimid effect of being so powerful. You pick up infection so easily and it can be hard to detect because you don't feel ill. Eve had great trouble with Slim when he had pneumonia and while I've been on revlimid I've caught everything going and I'm not on dex anymore. Take your temp every day and repeat it every hour if it is on its way up above 37*c. Then ring the docs when it stays above 37.5 for 2 hours or more. It's probably just a precaution but maybe better safe than sorry if you are on it at relapse stage.
Love Helen
Hi Ali, Jo and Michelle
Yes it's a horrible thing to get, I feel so tired and sound dreadful. I can see why babies suffer so badly, you start to panic a bit when you can't breathe properly, and I'm a grown up with medical knowledge and I find it difficult!! It is commoner in adults now as children are immunised and we lose our immunity as we age, there's a warning for all of you!. However I'm glad it is whooping cough because at least I know it will get better, if it hadn't been then I was going to have to be checked over for more serious stuff! So that's a bit of a relief. And yes the antibiotics stopped me being infectious to others but the cough continues and because its so severe, you damage your lungs and so it takes up to 12 weeks to get better. Yuk
Anyway, feeling less down about it all now, so might be getting better, and its nearly Friday so a day off tomorrow. Hurrah:-)
Love Helen
Hi Keith
Sorry it's such a minefield at the moment, I too would be a bit worried about those results, but this time 2 years ago mine were at that level just before diagnosis and if blood bank hadn't spotted it I might not know I had myeloma yet? So stay away from anyone with infection, take your temp twice a day, if its above 37.5 for 3 hours, go to the hospital, but I'm sure you knew that. Hope you pick up soon.
Love Helen
Hi Etta
I suppose you have a 2 out of 3 chance of tablets being prescribed so it is more rather than less likely, I took revlimid out in New Zealand with no trouble, walked a lot on the aeroplane etc. if you have had thalidomide before, Revlimid is its new brother but has less peripheral neuropathy problems. I took heparin injections for the flight days to prevent DVT as well as daily aspirin while I was there. Zolinza was not available when i went on the maintenance arm of the trial but it seems to be a promising drug. As I said, these drugs are being tested in us newly diagnosed, and tested as maintenance too so there is no guarantee of any future provision of it unless it works really well across the board and becomes mainstream therapy. We just get the chance to take it via the trial and will get it then for as long as it works for us.
The way the trials of maintenance therapy work is to see how well it is tolerated by many, how long the effect lasts, and overall prevention of disease progression and death. In the past there have been trials with interferon and thalidomide, for the majority of people on them there was no appreciable advantage and side effects are plenty, but some people are still on these trials 15-17 years on with reasonable life quality. As there is no way yet of forecasting which of us will relapse and when, maybe we just grasp what is there and hope for the best, I was and still am prepared to stay on it and live in hope that it works for me for a long time. Good luck with your decision, maybe they could start you on a smaller dose than standard?
Love Helen
Hi Etta
Sorry I missed this, bit tired and busy recently, but here is my experience . I've been on myeloma xi trial for nearly 21 months now.
Started feb 2011 on revlimid arm, it took my light chains to 0 in a couple of months and they have remained at 0 since then. 🙂
Had my SCT in August 11 and was randomised to revlimid again at 100 days post SCT. I've had no severe side effects to revlimid other than a loss of taste, fatigue, tummy troubles ie alternating diarrhoea and constipation, which does take some getting used to and recurrent chest infections. As I say, not nice but you can cope with them. In the first couple of months I had no side effects, but because it is a cumulative drug, they came later. I had septic collitis after transplant which took 11 months to resolve and i am catching every cold going but I'm back to work full time now and have been to New Zealand and Venice since transplant. 🙂 I waited 6 months before going in an aeroplane because the recycled air can carry lots of bugs, I thought it would be safer, but probably doesn't make much difference. You have to just go for it and live a lot.
Revlimid maintenance might prevent myeloma coming back as quickly so I thought it was worth a shot, I'm glad I have as I need to stay here for as long as possible, Zolinza has also been added to the trial to see if it works as maintenance as well or better etc, as I say it's a trial nothing is certain and all we can do is give it a whirl. If it works you get to stay on it until it stops working so I'm trying it. If you choose not to go on it when you are randomised you will not be able to go on it in the future if you change your mind. I don't think they will let you delay it either as everyone needs to be starting it around the same time, but you can ask. Make sure you know all about it, but its your choice at the end, if you don't want to try it you don't have to.
Love Helen
Dear Rachel
I am so sorry to hear about Paul's untimely and so sudden death. A terrible shock to all of you after such a fight to his SCT. He was such a regular contributor and very helpful to me when I was so worried about the rigmaroles of work. I shall miss his presence here so much, as Dai has said, a fellow traveller whom I hoped would keep us company and our spirits up, for a long time.
He will be sorely missed.
Much love Helen
Hi Eve- I think the vitamins is a good idea, I catch every thing going these days. Venice wasn't too busy when we went, the advantage of the hire boat meant we could look at the crowds here and there then go in the opposite direction, we were a bit off season too so it was ok and the boys made sure I was steered away from coughing and sneezing people!
Min, I might just try Reiki, you are most unfortunate to have so must trouble, did you get away on your holiday? I do hope so.
Thanks David, how are your anniversary preparations going after your set back? I don't envy the photo task, my husband has been doing that with our photo archive recently, I think we have several extra hard drives now with all the photos on them. We have our flu jabs next week, hope it gives a bit of respite as well as protection from the bugs.
Love Helen
Hi Ali
Thanks for asking, but you might regret it ,:-) I've been getting to grips with work again, no mean feat after all this time and trying to get back to a semblance of normal life. what is that?? Is it ever going to be normal again? My memory seemed to leave with the melphalan, along with all my mucous membranes and is yet to return in its previous capacity! I'm jolly tired of this chest thing and feel seriously below par for a good chunk of the day, I also had the zometa on Tuesday and I always feel rough for about 5 days after it, so having had a lovely, if too short holiday and a bit of sun for a change, i'm now back at work, grumpy and tired already.
What a whinge I am!
I'm sorry, I think I'm finding it hard to pick up the pieces again at the minute, better stop moaning and go to sleep, nearly the weekend now, hurrah, how's your mum? Still got a sore dry mouth? Mine still is and is worse every time I get a cold. Something we have to put up with I think.
It must be nearly half term now, are you planning to go away?
Love Helen
Hi Vikki
What an ordeal it has been, get some rest and enjoy a few weeks now.
Love Helen
Hi Andy
Glad to see you had a good holiday, let me know when you are back in my neck of the woods.speak soon
Love Helen
Dear Vikki
Hope it all goes well and that the cells stop sticking and start moving.
Love Helen
Hi Gill
A lovely waffle, Stephen must have been very lucky to have had you in his life. Good luck, keep in touch
Helen
Hi Chris
This is great news for you both. Hope the rest of the journey goes smoothly, do you get a date soon?
Love Helen
