Welcome Charlotte Rose..

Well it happened, our little girl has joined us. Charlotte Rose was born on June 22nd, Kristy and baby did well and left hospital the next day.

Kristy took off 12 weeks and after that I will step in and be 'mum' when she is working. The kids love her and are at a great age to enjoy and care for her, it is fun to watch them with her.

Our family of 4 is now five... plus Clara the dog! Life is changing for the better and not just because of Charlotte. I am feeling 'normal' which is something I have longed for for quite some time.
I still have chronic GVHD in my mouth. It has also turned up in my eyes, and on my hands and feet. None of this is much of a problem at the moment...my hands and feet are getting better and I have dry eyes. My mouth is the worst of my symptoms, as my gums have receded and I have developed a couple of mouth sores.

Generally I feel good, I'm doing a bit of running, walking the dog and lots of cutting the lawn...  I have also starting working recently as a phlebotomist in a local hospital and am really enjoying it and getting better.  For the past 5 years, I have been the one being stuck for blood tests, IVs, etc and now I have the opportunity to make things a little easier for someone in similar shoes.  The world doesn't need another mediocre phlebotomist, so I hope to be a very good one.

About 3 months ago my Kappa Light Chain numbers (cancer markers) started to go up slightly, first they were 2, a month later they doubled to 4. At that point I asked for a bone marrow biopsy to check what was happening. It came back completely clean so we think the rise in KLC numbers could have been because of the chronic GVHD. I am having this number checked every month and the following month the number decreased by 0.17, not a lot but headed in the right direction. I will have the number checked this coming Tuesday so we shall see. I am hoping the number continues to go down.

Maintenance begins...

(Beginning of March):
So..I guess I should update this blog then...
I know I'm not winning any awards for keeping people up to date...please forgive me.

Today I start maintenance chemo, I will be getting Carfilzomib 2 days a week, every two weeks..

About 30 days ago I finished 5 months of chemo treatment which was Dexamethasone, Cytoxan and Carfilzomib. Also 30 days ago I had my 5th DLI, this time however it was about 10 times larger than the previous one.

Didn't quite finish writing that post, so here I am March 28th with more information and another attempt to update...

A couple of things I want to mention having just read my last blog entry. Carfilzomib is in fact the new Valcade. The new Revlimid, should I choose to use it, is Pomalidomide, just thought I should sort that out.

I did end up having 5 rounds of treatment because BMT dragged their feet a bit on deciding how to do the DLI. It was decided that we would contact the donor and ask for more fresh cells. I think the main reason for the this was my adverse reaction to the stem cell preservative DMSO many moons ago when I got a DLI in NYC.

The decision to give a much larger amount of T-cells was made by Dr McGuirk because my best hope of longer term survival is GVT (graft versus tumor effect) which is when the T-cells or fighting cells attack the cancer cells in my body. There is a danger of there being too much of a fight between
my cells and the donor cells which is called GVHD (graft versus host disease). This is an age old balance with stem cell transplants, and I feel this is already too much information and you're falling asleep.

Lets just say GVHD kills a lot of people and causes all kinds of problems acute and chronic so it can be just as much of a problem as cancer.

The trial I followed for 2 years was trying very hard to find out how to get GVT without any GVHD. However after 4 DLI's, which were done in the hope of creating GVT, this had not happened and my disease had returned. So with a view of giving a lot more T-cells and hoping to be able to manage a small amount of GVHD (which brings with it GVT) it was deemed a worthwhile risk and the hope of a longer  remission.

...and so far no GVHD, so I might get more cells in the future. I've been told the window of when
GVHD can happen is 4-8 weeks post DLI.

So as of today March 31st 2015, I feel pretty good. I tested positive for RSV about 10 days ago but got over it in a couple of weeks (and no pneumonia) which is good for me.

Dr Lipe told me about a new test called 'flow cytometry' which is done to the bone marrow biopsy. It detects 1 in 10,000 cells vs the old test which detected 1 in 1000. So I requested a BMB and the results came back negative which is great! It means I'm in remission (as per the new more sensitive test) and I can continue with my planned Carfilzomib maintenance.

Another continuance...
April 14th
So busy day today, I went into clinic for maintenance and when I saw McGuirk he confirmed what Kristy and I had thought, I have chronic GVHD in my mouth (looks like a rash, feels like sunburn at the moment). To check if it is in my lungs (which is a bigger problem) I did a number of tests, starting with running up a few flights of stairs and checking my HR and O2 in my blood which were both fine. I also had a CT scan of my lungs and then a pulmonary function test (PFT). Both of these tests came back fine, which is a huge relief!

Over the past weeks I've done some running (not much) and been on the trainer in the basement 30 minutes at a time. On chemo days and for a couple of days after I feel too tired to work out but the rest of the time is fine.

So all in all, things are going in the right direction. Hopefully a little GVHD means a longer remission and having 2 weeks between treatments means my strength can continue to improve...which will be helpful as our new baby girl is due in 8 weeks!