The Hardest Blog

November 22 - Day 35 + 7

This news is actually from November 15, but I have found it very difficult to break the news. Please accept my apologies for the delay.

On Nov. 13, I had a bone marrow biopsy to determine the results of this round of chemo. On the 15th, I was informed that the results were not good. I am not in remission, so I cannot go forward with a bone marrow transplant.

In fact, there are no viable treatment options left, other than experimental ones which have a very low success rate. So the bottom line is I came home as soon as possible (19th) and I'm on essentially palliative care, which means blood transfusions once or twice a week. This gives me a life expectancy of three months or so.

Thank you to everyone. You've been such a support over the last several months in person and on this blog.

Monitoring and Reacting

November 5 - Day 25

The last ten days have been spent getting rescanned (CT Scan and Chest X-Ray for pneumonia), and monitoring blood levels and topping up where required. In total I got 5 units of platelets and 4 units of red blood cells.

I also got a new PIC line inserted to replace the old Hickman.

The other issue is fevers once or twice a day, treated with tylenol. I literally sweat the fevers out over a few hours.

From today forward, my blood counts should be starting to rise, and with white cells, little irritations like mouth sores as well as larger ones like chest lesions should start clearing up as well.

Post-Chemo

October 26 - Day 15

Last Saturday and Sunday, days 9 and 10, I got the final chemo drug, called Cytarabine. I got the same drug in the first induction, but this time it was given as a 3 hour IV drip, twice a day. Unfortunately, the earliest time to start is about noon, so the second dose was from midnight to 3 am. Not conducive to sleep.

A few hours later on Monday morning, I was feeling pretty bad. I had a high temperature, 39.5, and very low blood pressure - as low as 80/46. They jumped on this with antibiotics and tylenol, as well as red blood cells. (I actually got red blood cells the day before as well, because my hemoglobin count was low.) After a few hours they escalated this to the rapid response team, who determined from blood cultures that I had an infection, probably from my Hickman line which has been in for 6 months. So that was removed, and I was moved up to the ICU.

They determined the family of bacterial infection quickly, and I was already on the right antibiotics for that anyway, so I recovered quickly in the ICU and was back in my normal room the next day. I also continued to get red blood cells for a couple more days. The only problem was they needed to monitor my 'liquid output' to compare against the amount of fluid they were pumping into me, so I had to be catheterized.

The next couple of days were a lot better. My cough is getting worse though, which is affecting my sleep as well as everyone around me, and I'm having occasional low grade fevers. So today, after getting platelets, I had a CT scan.

Up to now, close to half way through this induction therapy, I'd say I'm doing better than the first one. Then I had a pretty fast, deep and prolonged decline, with slow response. This time, the decline was faster, but was handled much quicker and I got back to near normal in a day. Of course, there are still another ten days or so before my cell counts should all be climbing, so bad things can still happen.

Mid-Chemo

October 20 - Day 9

For five days, Monday through Friday, days 4 to 8, I had two different medications for chemo.

The first is called Mitoxantrone (pictured below), and is given by injection over a few minutes. It's dark blue, to complement the red Daunorubicin I got in the first induction. I believe the two drugs are in the same family. All I need now is something green to get on the RGB charts!

The second drug is called Etoposide (pictured here) and is given as an IV drip over an hour or so.

I have also been on an IV antibiotic four times a day, which ended Thursday night (actually 4 am). Stopping this makes sleeping easier of course, though that's never great in the hospital.

The next two days (Saturday and Sunday, days 9 and 10), I'll be getting a different chemo drug, called Cytarabine. I got the same drug in the first induction, but this time it's given differently. More on that later.

Hospital First Days

October 11 - Day 0

Went to the hospital Thursday p.m. for an ultrasound on my butt abcess. Turns out it's not too deep, and could be treated with antibiotics or possible minor surgery. While we were at the hospital, the hospital called us at home to say a bed was available. Of course we missed this call, and got a seccond call around 6:30. After dinner we went to check in. Got a private room at least (for now anyway.) Got some bloodwork, but no IV, so sleep was possible.

October 12 - Day 1

Saw DRAP and the pharmacist. Had at least 8 people look at my butt. Surgeons concluded it is draining itself (very slowly) and that they would not open it up more. On antibiotics - drip 4 times daily for 30-45 minutes, then disconnected from IV for the rest of the time. Decided to delay chemo until Monday to give the butt thing a chance to improve first. In the evening also saw DRRB.

October 13 - Day 2

Just more of the same. Antibiotics 4 times, a few visitors.

October 14 - Day 3

Same again. Chemo should start tomorrow.

Bone Marrorw Biopsy and Results

October 11

Ater three cycles of Vidaza, it was time to check on my progress. So on Tuesday, I had a bone marrow biopsy (5th one to date.) Sometimes they'll wait until after six cycles, but since a bone marrow donor has been found it was worth checking early.

And it's a good thing they did it now. Because, unfortuantely, it seems that the treatments have been totally ineffective, and that I have relapsed into a much worse state.

So now I have to go back into the hospital for another round of induction therapy (7 days of treatment, followed by two or three weeks of recovery). The drugs will be different from the first time, but I expect that it'll be very hard, like the first time.

This will most likely start today or tomorrow.

After Chemo Cycle Three

September 20

I got through the third cycle of chemotherapy, finishing on Tuesday (18th). This cycle seemed to go a bit better. I was feeling not too bad over the weekend after the first five treatments, but worse agan on Monday and Tuesday as the last two treatments were administered. Anyway, I seem to be improving a bit now.

I still have a number of side issues though. For now, the worst is mouth sores. They have been quite bad, to the point where I could only eat liquids for several days. This included blending of semi-solid foods to a mush. I've been seeing a dental pathologist about this, and it's getting better now, though it's still a problem. My other problem is in the lower G-I, and I don't think more detail is warranted here, other than to say that a side effect of this is difficulty sitting down for any length of time.

Next up is a consultation wth my doctor on October 5th, followed by a bone marrow biopsy on the 9th. This will tell us how effective the chemo has been. After that, we'll have a better idea of whether to continue on this chemo for a few more months, or do something else, before getting to the bone marrow transplant.