Monday, 28 February 2011

How Ironic?

Isn't it just ironic that the song that my kids keep putting on the ipod (after Barbie Girl) is Fame's 'I'm going to live for ever'!!

Last week it set me off in tears everytime I heard it, so it's a good sign that this week I can hear it without feeling sorry for myself!!

Off to the Marsden tomorrow to meet with my lovely lady to hear what will happen moving onwards. We're expecting for me to get moved onto Velcade or have to come off the trial to go onto different drugs, but we don't know what the timescales look like for that really. Lots of questions for them about what it means for me that the Revlimid didn't work, effect on life prognosis etc, as well as what happens if the velcade doesn't work next....though I'm not sure I want the answer on that one as it won't be good news if I have cut out 2 of the major drugs!!!

Anyway, I've had a much more positive weekend and start to the week so hopefully that will be backed up tomorrow with some good news while I'm on a roll.....

Tuesday, 22 February 2011

Impressive at the Marsden

Following yesterday's down day, I'm feeling a little more perky today. The kids help no 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!

Monday, 21 February 2011

Cycle 4: Day 6 - Where is it all going?

God I'm feeling miserable today. No apologies. So sorry if you're looking here for any inspiration or positivity!!!

I called up the hospital to see whether they had my paraprotein results back in, and sadly they did. They've gone up from 27 to 28. Now I know this is only a rise of 1, and I know lots of people will tell me it could be a blip, or blah, blah, blah, but having talked to the consultant last week, I am pretty convinced that she will see this as a fairly strong indication that I have stopped responding to the Revlimid. Gutted to say the least.

It's been a weird week anyway since I went in on the 15th. I almost feel like I knew this was coming, but it hasn't made it any easier.

So now I'm not quite sure where I stand with it all, especially being on the trial. I believe that I will be classed as having had a partial response as overall I've gone from 50 to 28. I think that means that now, I will be randomised to either go onto Velcade for a while, or to go straight to transplant. Now I need to do some research, but my understanding is that if you have a transplant without being properly in remission (i.e. without my paraprotein and bone marrow having reduced enough) that I wouldn't get as long a response from that transplant. So I can't see myself staying on the trial if I got picked for that option. Every month counts so much to me with Nick and the kids, and I can't even contemplate shortening that for the sake of a trial.

I think the hard thing today is not knowing where we are going, and how long it will be before I do know. My nurse specialist is on half term this week so there is no-one to ask what happens now? I don't know if they'll keep me on the CRD until the end of this cycle, suggest I go and see them early and change the drugs, or what. So I think Nick and I will sit down tonight, talk it through and maybe draft up an email with all of our questions. I'm not sure I can wait for 3 weeks with this hanging over my head....not happily anyway.

It's strange really. When this all kicked off, I think I just believed that being young and healthy, that I would automatically respond to the Revlimid and that all would go well and that it would all be over by the summer. I never really thought of myself not responding. Goes to show that you can't take anything for granted.

Damn Myeloma....I hate it.

Tuesday, 15 February 2011

Bring on Cycle 4 - CRD

So today was my latest appointment at the Marsden.

It's been a bit of a strange one as I haven't really come out of it much the wiser. Everything is ok and they don't seem to be worried about any of my figures or anything....didn't even ask to do my blood pressure etc this time which is unusual. Normally how it works is that they have all my normal figures (including my total protein) but I have to wait a week for my paraprotein result which is the key one we're following at the moment.

Today, they had all my normal figures APART from the protein. Now this just seems so unfair....I mean....I'd spent all week working on the premise I could use it to cheat and guess where my paraprotein was going to come out. And now I'm actually going to have to wait.....It's Not Fair as my daughter would say! And what is worse is that my nurse specialist is on half term next week so where I can normally get her to email it through fairly promptly, I bet it isn't so easy to get it without her there.

So, what have I learnt today. Well, it looks likely that unless there is an absolute miracle this time (and next), that I will at least be going  on to have one more cycle of chemo with the Revlimid. At the same time they see me next month, they will do the dreaded Bone Marrow Biopsy....oh how I can't wait for someone to stick that huge needle in my back!!! However, this will only happen if my paraprotein is still dropping.

If my paraprotein has only dropped by one or two this month, they will probably deem me as not responding to treatment (or as having had a partial response) in which case, they will take me off the Revlimid and do a randomisation to see whether (on the trial) I either still go straight to transplant, or whether I have to start on a drug called Velcade. It is unlikely in these circumstances that they would put me through anymore on Revlimid. I'm not sure which would be the worst deal on this, as to go straight to tranpslant without being in full remission, in some fields, would suggest I'll get less time in remission from the transplant.....and that isn't really something I even want to consider. BUT, to have revlimid will require me to go into hospital two to four times a week and obviously with 2 young kiddies and a husband in a new job, that won't be easy to juggle! And god only knows what the side effects will be of that.

However, that isn't the only option, if my paraprotein drops by around 8-10 this time, they might just get me to go through another round or two on the CRD (revlimid treatment). That would have the downside of the transplant not being till the summer but the benefit of staying with something I know and that I can take at home.

Confused??? I am!!!

So first bit of real news will be next week when I get the paraprotein result and spend the next 3 weeks worrying about what it will mean for me!!! And then I'll have to wait until the next appointment to see what the reality is.

We also had a chat with them about being on Revlimid. There is lots in the press at the moment about the drug and some of the trials that have currently been done. The trials are where it is used as Maintenance therapy (where at present I have it as Induction therapy) and there is some suggestion that it may have led to a higher incidence of secondary cancers where people have been left on it for 2+years. We wanted to talk to them about it and I have to say, they were great. They didn't treat us like we were mad to be interested in what it meant, but answered all our questions and sort of said what we'd thought which is that it is still really early days and there is lots more to be questioned before they know the reality of it all.

At the end of the day all of us with MM will have to make decisions as we go through. Revlimid is considered a wonder drug in many ways, and if it allows me to have more years disease free with my children, perhaps it would be worth secondaries. Though I am conscious that I am unlikely to say that at the time. But who knows, without it, I possibly wouldn't get so many years with them and that is too sad to come off it for something that isn't truly known. I think at the moment lots of the consultants believe that the benefits outweigh the issues.

It's so hard with rarely leaves your head, although I've got better with that as time has gone on. But it is always there making you consider things in a way you never did before. Recently I've been thinking about the kids lots. I feel so sad that they may not have me around as they grow up and go through their most vunerable years as teenagers. Ok, before you say it, maybe I'll be lucky if I miss that one (!) and maybe it will be Nick's penance (lol!) but as awful a period as I am sure it is for parents, I will be so grateful if I get to see it through till they leave home. Anyway, not sure why I'm writing about this now apart from it has recently snuck back into my head after months of not really thinking about it. And that's what this blog is meant to be about after feelings and thoughts.

Oh yes, got flowers today....thought they might possibly be from nick....they were beautiful. They were from John Lewis apologising for our dishwasher escapades!!!! Better flowers from them than nothing from anyone :-)

Thursday, 10 February 2011

Cycle 3, Day 23

Ok well I promised a more upbeat entry this time.....and I might just fail!!! Although I will try to cheer it up as I go along.

It's been a tough week or so since I last wrote. For me anyway. I know that in comparison to what lots of other Myeloma patients go through, what I have to deal with isn't major, but I only know what I know. And I've found it hard the last week.

I've suffered from the most awful taste in my mouth for about the last 10 has only just gone since I stopped the Revlimid on Tuesday. I've had a horrid taste on and off over the 3 cycles but this was something else. It sort of tasted like when you get dandelion juice from the stems on your fingers and then touch your mouth. Sort of bitter and horrid. It has just really got me down as it has made me eat even more than before trying to get rid of the taste, and of course that has had the worst effect of making me feel pretty low about the weight I've put on. Along with that, I've been remarkably exhausted and not really had the energy to do anything except get the kids to school and do my paid work. By the evenings, I've been banjaxed!

But, on the positive side, I have come out of my low and decided yesterday that I needed to stop moping around about it and start doing something. It was helped by the fact that I stopped feeling so tired and awful, but I got the Wii Fit out of the box that had stayed unopen since I got it for Christmas and set that up. I was also going to go walking today for one of the first times since my 3 Peaks, but unfortunately I heard the rain start at 5am this morning and it didn't stop all day! And it's not the best way to start motivating yourself....but I promise I'll do it next week if the weather gets a little less depressing. But today I started doing the step on the Wii, a bit of running and some hula hooping (I swear that no-one else will ever see that hip movement or I'll be the laughing stock of West Wycombe!).

And on top of that, I finally made bread for the first time, thanks to my sister's encouragement. So homemade bread it is from now on....the breadmaker is going to the charity shop now!

I was going to post about our nightmare with John Lewis and our dishwasher, but that is pretty boring (not that the rest hasn't been) and so I'll leave it. I'm not quite so cross with them now that they're refunding 1/3 of the cost of it and we're hoping they'll donate it to Myeloma UK - so perhaps blogging about the experience wouldn't be too fair.

Right, off to bed now with some sleeping tablets. Will leave Nick watching My Gypsy Wedding and go to bed now :-)

My family's snow fun!

My family's snow fun!

Snow Fun

Snow Fun