02.12.2012 Views

My Battle with Merkel Cell Cancer

My Battle with Merkel Cell Cancer

My Battle with Merkel Cell Cancer

SHOW MORE
SHOW LESS

You also want an ePaper? Increase the reach of your titles

YUMPU automatically turns print PDFs into web optimized ePapers that Google loves.

Last night, I had the most sleep I've had in a week. It was the peaceful sleep of the<br />

ignorant. I wonder if I will sleep that well tonight.<br />

I am not in pain, and the nitroglycerine helps me drink fluids. I have had 2 bottles of Boost<br />

Plus today.<br />

I am hoping there is an experimental protocol which will offer me potential benefit,<br />

because it seems that more chemo will buy me a period of misery <strong>with</strong>out any guarantee<br />

of a period of normalcy to follow, and may preclude any effective experimental protocol.<br />

It should all come together in the next few days.<br />

Posted by David Shuster at 06:17PM (-08:00)<br />

The Short Of It<br />

Thursday, February 02, 2012<br />

Last night, I did have a fairly decent nights sleep, for me. At least I was able to sleep in<br />

bed, and not in a chair. The IV feeding ran during the night. However, today, the Boost<br />

Plus is not going down easily.<br />

I had my visit <strong>with</strong> Dr. Flam yesterday afternoon. We had conversations <strong>with</strong> Dr. Nghiem<br />

and Dr. Lewis during this visit. Dr. Flam wants me to start chemotherapy again and made<br />

a compelling case for it. He wanted me to begin as soon as today and felt that that would<br />

open my esophagus so I could begin eating again. However it would take some time for<br />

this and I am in too much distress to wait for this. Dr. Nghiem suggested injecting the<br />

esophagus tumor <strong>with</strong> Beta Interferon endoscopically and then giving radiation to the<br />

area of 8 Gy. The second mass near the gastrohepatic ligament might also be treated in<br />

similar fashion. However, my esophagus has already had 56 Gy and this is getting close<br />

to the maximum. We decided to hold that approach for the time being. I did not want to<br />

have any more cisplatin as I want to preserve my hearing and my peripheral neuropathy<br />

has not improved and at times is quite uncomfortable.<br />

The plan now is as follows.<br />

Tomorrow, Dr. Lewis will insert a removable stent. Stent Review Article On Monday I will<br />

begin chemotherapy <strong>with</strong> a drug called Topotecan. Information about Topotecan<br />

The drug will be administered by continuous infusion for 5 days, and repeated after 2<br />

weeks off. I don't know how many cycles will be used, presumably this depends on the<br />

response.<br />

The drug is available to be taken orally. Perhaps after the first cycle, if my swallowing<br />

function has improved, I will be able to do that. More on Topotecan<br />

Nobody discussed the response rate <strong>with</strong> me, but it seems to be in the 25-40% range,<br />

<strong>with</strong> only rare complete remissions.<br />

Posted by David Shuster at 10:51AM (-08:00)<br />

Too sick to post much<br />

Monday, February 06, 2012<br />

I can't put coherent thoughts together to post. Today, I will see Dr Flam and decide<br />

whether to start Topotecan today or delay a few days. The stent is working but I have no<br />

desire to eat. Lots of pain, but getting better. Nausea. No desire to eat even though the<br />

food goes down. Still on IV nutrition.<br />

Posted by David Shuster at 10:13AM (-08:00)<br />

<strong>My</strong> <strong>Battle</strong> <strong>with</strong> <strong>Merkel</strong> <strong>Cell</strong> <strong>Cancer</strong><br />

115

Hooray! Your file is uploaded and ready to be published.

Saved successfully!

Ooh no, something went wrong!