Following yesterday's down day, I'm feeling a little more perky today. The kids help no end....you just can't sit around moping with them and that is so good for me at times as I think I would otherwise!!
Yesterday was so hard though. I didn't seem to be able to stop crying all day. And then interspersed with that would be the thought of throwing a glass across the room!!! Nick asked if I could make sure he wasn't around if I did that! It all just seemed so unfair and so wrong. Why had I gone through 4 months of tiredness, sickness, and feeling rubbish to get this sort of result. I just felt exhausted and like I didn't quite know how to keep going with it all. Silly really. My lovely sister sent me a bouquet of flowers all the way from Beijing (well I'm thinking it was probably from here somewhere, but you know what I mean!) and even those made me burst into tears.
But today has been a little better. I cancelled my plans for the day and the kids and I have just been having a nice day doing jigsaws, playing games and reading. I'm not quite ready to be talking about it all with people at the moment, so it is so nice to just be with people who don't get it...bless the little lovelies!!!
Nick and I wrote to the Marsden last night to see if they could give us an indication of what they thought of the figures. Funnily, this morning, I got a copy of the letter that they had sent my GP after last weeks appointment, and that made me realise even more that it was likely they'd pull me off the revlimid. By 10am this morning, I'd had a response from them saying that they agreed that it looked like I had only achieved a minimum response to the Revlimid and that I would probably be put through to the next part of the trial with the randomisation to velcade/ transplant. They have arranged an appointment to see me next Tuesday which is great. They also acknowledged my concerns at going straight to transplant at this stage and that was something that was worrying me as I thought they may bully me into it. Hopefully if that is what I get chosen to do, they will help me with the right decision as I would imagine I'd have to come off the Myeloma XI trial.
I was so impressed that they came back to me so fast. It makes you feel like you are vaguely important and that it isn't all about people through the door. So off we go again next week. Here's hoping Nick's work are ok about all the time he takes off to come with me. I'm a bit nervous about that, but he really wants to be with me for the appointments now (understandable!) so hopefully his work will be ok with him.
So, next step could well be velcade for me....I wonder what that will be like....arrgghh....must stop getting ahead of myself!
Debs perhaps you can help me with some advice! I hate asking questions at the hospital as I always feel like I'm being a nuisance.
ReplyDeleteMy specialist keeps talking about my light chains, is this the same as your paraproteins? Because of the figures they quote me I can't believe it is, (my light chains are currently 2300, although when I was first picked up they were over 7,000 and they only ever managed to get them down to 1,000) I had my stem cell transplant late 2009 and unfortunately only got 16 months in remission/plateau, but don't let that worry you, that was extremely rare I'm told, some people go as long as 6 years in remission.
For my transplant yes, they did have to see that I had stopped responding to the dexmathasone (I think) steroids, thalidomide etc and the with the transplant I spent 5 weeks in total in hospital in isolation. I think previously you mentioned you only expected to be in for 3 weeks - be prepared for this to be longer. The upside for me was I lost 4 stone on the treatment and it's all stayed off for over a year! However I have gone back on steroids a couple of days ago and had my first shot of velcade on Monday - the next one being tomorrow. So who knows what will happen now.
Sorry if this message seems rambling, I'm having a bad day, made worse by the fact that my beloved little cat Sophie, who has been great comfort to me when I'm ill, dissapeared on Saturday night. We went to put posters out yesterday to see if anyone has found her and it transpires she was run over and killed outside my house on Saturday night while I was at a wedding reception. So as you can imagine tears all round for everything at the moment.
Take care Delia x
Hi Delia,
ReplyDeleteSo sorry about Sophie...that must be such sad news for you :-(. I hope that things start to feel a bit better soon.
No, paraprotein levels are different to lightchains....I think some people with MM don't have detectable paraprotein levels so they look more at the lightchains. And I think it is similar to paraproteins in terms of levels too. Mine at 50 were considered quite high but yet I had no end organ damage (yet some people have it with a paraprotein of 10+)....the same goes for lightchains in that you can have high readings but no symptoms. But I am no expert!! I know some people follow this blog who have lightchain myeloma so perhaps they can help me out here???
I'm trying not to really think about the transplant anymore.....I just don't know when it will happen so somehow need to get it out of my head for the time being. Most people in the UK only seem to be in for 2-3 weeks but I will definitely bear in mind that it could be longer!! And fingers crossed for the weight loss...at the moment I have gone up a dress size and feel totally bloated the whole time!
Take care and I hope that you are ok
Debs x
Thanks for your quick response Debs. Sometimes I just daren't ask too many questions. I think I'm scared of looking stupid or maybe afraid of what they may tell me. Unfortunately I have been one of the unlucky ones and my myeloma caused kidney failure. My kidneys are now working at 9% and on the 23rd December I had a fistula made in my left arm ready for dialysis. The fistula is now healed and ready to be "needled" as the surgeon called it. However as dialysis will take three visits a week to hospital to be hooked up to dialysis machines for up to four hours, the powers that be want to try and get me settled on velcade first before the added trauma that dialysis will bring. Ultimately it is hoped that I will be able to dialysise at home, but there is a great deal of expense to the health authority for this as they have to convert a room in my house to a "designated clinical area". Because of this my kidney consultant is very non-commital at the moment as he says they can't even consider it until they are sure I have a life expectancy of at least 2 years - nice!
ReplyDeleteGosh life sometimes seems so unfair, I always thought until 2 years ago that I was fit and healthy, I've never smoked and apart from a little gin and tonic after work each night I don't really drink. Still at least, for me, I've seen my kids grow up, I had them very young so my youngest is 25, it must be even harder when they are young and you have extra worry about what could - but hopefully won't - happen.
Anyway I'll let you know how velcade progresses and hopefully it will be a long time before you have to find that out for yourself. I've had one session, 31 more to go and I haven't been sick yet! That's very good for me, I was very sick with the last lot of chemo, hence the 4 stone weight lose.
Take care
Delia x
I'll let you know about the Velcade on Friday and don't be depending on the SCT for an instant weight loss plan, even though things were express delivery at er, well you can guess, I retained some water so came out the same weight I went in except my boots were tight! :D
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