Wednesday November 24th - Consent Day

So I had a few calls yesterday one saying the transplant had been approved by insurance....which is nice. So we now have some concrete dates:

Nov 25th - Thanksgiving, this was already set.

Nov 26th - Start 4 days of Neupogen injections to produce extra stem cells which encourages them into the blood stream where they can be collected.

Nov 29th - Placing Trifusion Cathater at KU. This is a port in my chest for chemo, meds, stem cells and anything else they want to 'add' without having to find a vein.

Nov 30th - Stem Cell harvest, I'll spend the day (maybe 2) hooked up to the Apheresis machine to collect enough stem cells for two autologous transplants. Half will be frozen for some time in the future.

Dec 6th - Start 2 days of high dose chemo drug Melphalan.

Dec 9th - Stem Cell transplant.

This morning at the BMT Clinic I meet with the doc and transplant coordinator and hopefully they go over all the results of my tests and give me an idea of how I did.
Also I'm hoping for some blood work to check my creatinine level.

Well that was a long day. Started at noon and finished at 6pm, went to Tom & Kathy's to pick up the kids and stayed for pizza, home by 8.50pm.
The consent meeting lasted a few hours and was lots of signing away my life...But the more interesting bit was talking to McGuirk about Myeloma past history and then all my results. During the meeting I had blood taken and my Creatinine is now 2.73. Which is getting better and I feel if we get nearer to 2.0 my kidneys are more likely to survive but really it's hard to say. My kidney function going into transplant is one thing that could very easily go down hill and leave me needing dialysis, that just seems to be the way myeloma has attacked my body. So I am prepared for that, but hoping for a better result. One of the main things I took away from today is that my kidneys are going to play a big role in determining the course of my illness/recovery.

Heart and lung tests are fine. I'm still breathing like an athlete, even though I'm anemic!

The figure 12% plasma cells in my bone marrow which has now come down to 6% (where 5% is normal and anything over 10% is diagnosed as myeloma) was probably a lot higher. When they do a bone marrow biopsy they take out two 'types' of  matter: a fluid, called an aspirate, and a sample of marrow, called a core.  The aspirate back at diagnosis showed 12% plasma cells, but the marrow sample was described as having "plasma cells in sheets and clusters".  Because of the description of the marrow, Dr McGuirk said that 12% could have been much higher and 80% may have been more accurate, which means not a lot now that it has reacted well to chemo and just means that it has improved by a higher percentage. Also, the particular type of abnormal plasma protein my body has been producing, the kappa free light chain, was 398 and now has been reduced to 10 (97% remission).


Side effects he promised me from the high dose chemo (Melphalan) are: Hair loss, mouth sores, diarrhea, vomiting and of course buggering my kidneys to some degree. They will be able to keep me hydrated IV but eating could become a problem as chemo messes up the GI tract from your mouth to your rectum (they call it mucositis...nice word huh) and if I am unable to continue to eat and process food my body will become open to infection, so that will be a concern and a potential reason for hospitalization. All things that are good to know about ahead of time so I don't have too many surprises if things go a little pear shaped. He hopes, of course, that I won't be hospitalized but said he wouldn't be surprised if I needed 2-3 days in hospital soon after transplant because of mucositis, potentially being bad enough to need IV pain meds.
So all this said, I still signed up! The statistic he was able to quote is a median survival of 6 years. This is based on an older population, the average age of diagnosis is 65. So he expects me to out live that statistic given my age and general fitness.
Sorry this has been so long winded, it's just handy to write it all down while it's fresh in my head and gets you up to date with the facts as I know them.

Friday 19th - Busy day of tests.

We needed to be up early to beat the traffic, our (my) first test was at 8am. Kristy's Mum and Dad had Sophie and James for a 'sleep over' which made logistics a little easier.
Pulmonary Function Test: went well, my red blood cell count is low so the amount of oxygen being carried around my body is lowered. Good news was I was still in the normal range before they readjusted my results given the lower O2!

Next was 'apheresis' education....(I wiki-ed it) basically we had a look at the room/machine that will separate my stem cells from my blood. I get hooked up to this machine 5 hours a day for 1 or 2 days to 'harvest' the stem cells that get put back in after the high dose chemo has killed off everything else.
X-ray was next chest and jaw, then onto Heart for an EKG and Echo.
I get a lot of results on Wednesday the 24th along with my consent meeting where hopefully all my results are explained and dates are set in stone for the transplant etc.

My heart...or scary face?

Apheresis machine...it's a little noisy. 

 My blood gets warmed up before putting it back in...with this.

Wednesday 11.17.10

Busy day at the Lab. Financial and Psych meetings, bone marrow biopsy and blood tests. Anyway the good news is my creatinine is down... for the first time in a while. 3.83 down to 3.74 and I'm starting a oral high dose steroid today which hopefully will help the level to come down quicker. Just one more doctor to see and then we are out of here!
All went well, so the best part of today so far is finding out that all on its own my creatinine is coming down...just in time for transplant - hopefully!

Monday Nov 15th 2010

I've been for a few lab test since my last entry and each time my creatinine has gone up and no one knows why. I've seen renal, BMT (of course) and urology and nothing that is shedding much light. Today creatinine was 3.83. I'm not feeling great, the usual nausea, fatigue.
Lots of meetings Wednesday and bone marrow biopsy, busy day.

Tuesday Nov 9th. Unplanned visit to BMT lab

So the Creatinine has been making me feel a little under the weather to say the least. I called my transplant coordinator to check if I should be feeling so bad at this point. No was the answer so back down to the clinic for a blood and urine tests and a ultrasound of my kidneys. As I guessed creatinine is up again to 3.01. CT scan in the morning and more tests with a visit with one of the docs.
They are not sure why the creatinine is so high right now and are checking everything, hopefully I'll know the cause soon.

Monday Nov. 8 Lab test.

I think I've had 3 blood tests since the last chemo session. All my counts have been fine except Creatinine which had been climbing slowly. Today however it jumped from 2.2 last Friday to 2.8 today. This is not what I was planning for it and it is making me feel pretty sick. Hopefully it is a peak from the last of the Revlimid and will get better over the next few days.

November 1st - Last day of 4th chemo session

Well I didn't post anything about last Friday's session because it was so boring. 4hrs, Creatinine came down a tiny amount and that was about it. Everything stayed about the same white blood cell count is trending down as expected blaa blaa.
It's weird I've had some really crappy days where the nausea gets to be a pain and drugs don't get rid of it at all, then the next day it's all rosy comparatively.
So my last chemo session day (scheduled) before stem cell harvest started off as usual at home with Kristy looking for a good vein. James showed he's been watching and learning...

 He pulled up his sleeve and pointed out where we should be aiming...on Daddy. Kristy of course got in first time and I saw the best blood return I have seen....well ever probably!
Clinic was busy plus I think they forgot I was was there, things seemed to move suspiciously fast when I reminded them I had an 11 o'clock appt. and it was now 12.30 and I was still in reception no labs drawn.
So after 2hrs waiting in reception labs were drawn there, we got a room and started 2hrs of IV fluids before any meds.... I was looking forward to the doctors visit as I have a few questions but instead had 3 minutes with a nurse practitioner which wasn't very informative. So my actual meds were put in IV in about 20 minutes and then we were done. Kristy had to remind them we had no meeting or tests set up at all. So we then waited again for someone to set some appts up....do I sound just a little peeved?
So after 5.25 hours we got to leave. Oh yeah, numbers were fine, Creatinine came down again a little from 2.19 to 2.12.
Nausea should get a bit better as I'll not be getting any meds for a little while. One week off then tests, well the tests actually start this Thursday with various blood tests on 4,8 and 11th. Bone Marrow biopsy on the 17th, then some more tests I have no dates for at the moment.
It looks like the 2 days of high dose chemo (Melphalan) start on the 6th of December as long as I pass all my tests then transplant on the 9th.
So phase 2 is starting with any luck. I am happy things are progressing, I am quite interested in how sick I'm going to feel and be. How I manage to deal with it (how many times will "pain in the arse" be used when Kristy refers to me) and of course something that weighs on my mind, how it will be balancing time with kids and not getting any infections.
Also I've been asking questions that while wanting answers have realized no accurate answers are available yet. Like how much kidney function will I have when all this is done and what kind of energy level can I expect. Again, I think I'll be falling back on my tried and tested "hope for the best and prepare for less than that" . We'll see.