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 MM....it 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 all....my 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 :-)


  1. You could look at your previous blood labs and see if there is a correlation between your total protein and your paraprotein. Your total protein is the albumin, IgG, IgA, IgM, and your paraprotein. The chemo tends to decrease your good immunoglobulins so if you do have a decrease in your total protein only some of the decrease may be due to a decrease in paraprotein. What is the unit of measure for your paraprotein? Over here it is g/dL. One of your previous numbers was 27 and I don’t think that is g/dL.

  2. It is quite natural to think about the kiddies and this disease and how it might all play out, and as I have a relative with MM who has a young daughter, it does play havoc with the head to think about the future. But the Rev issues with secondary cancers seem to be more alarmist than factual according to some info from various sources in the U.S. Read some of the past posts and perhaps it will put your mind at more ease on that... thinking of you.

  3. Hi Jerry,

    Yes there is a correlation, but sadly this time they didn't give me my total protein!! I had been planning to use that to do exactly what you said, although she has warned me that I may find that my total protein stays the same, but my paraprotein drops...better that way than the other!!

    As for my paraprotein it is measured in g/l.

    Sandy, thanks for your comments too. I know what you mean about the alarmist comments. We aren't too worried about the whole thing, but just want to keep our finger on the pulse with it. At the end of the day, there won't be many drugs out there that have no negative impact - they are too strong which is why we use them in the first place. You have to make your decisions in life don't you! It is good to have read all of the people that aren't agreeing with the reports - it helps to keep the old head screwed on the right way round!

    Hope you are both well

  4. I'm constantly confused. I've resolved to leave all the technical stuff to Mike and just pick up the pieces as we go along. lol

  5. It's hard not to think about how MM has affected our kids. Our daughter was 8 when Tim was dx'ed. I beg God to let him stay here and raise her. So hard to think of her losing a parent, especially at a young age. I tell Tim that if he thinks he's gonna bail on being here for the teen years(they start this MAY), he's got another thing comin'!!! Every birthday that she celebrates with both of us here, I exhale just a little. BTW, I know people who have been on Rev 5 years, 10 years etc. None have developed secondary cancers despite all those years of continual use. I always say, "there's good and bad to everything." I think the good far outweighs the bad with Rev.

  6. The CDT protocol I had has cyclophosphomide which states on the enclosed leaflet that after several years of taking it there is an additional risk of leukemia but since this has been in use some time now no one bats an eyelid. It's just because Rev is new and we are all so much more aware with the internet. If we were relying on the TV news or newspapers we'd probably be oblivious. :D


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