Monday, February 25, 2008

back home

Aside from “The patient, who lives with his mother, is 39 and still lives with his mother” bit, there’s quite a lot of real and interesting info in the medical reports I received when I left Kateřinská on Friday around 2PM. I guess Mom made quite the impression.

Looks like I have stage IV metastatic malignant melanoma, which after the little research I did over the weekend, looks pretty bad. The histology report, of course, makes absolutely no sense to me (or to anyone else I know) and needs some explaining. Mirek’s daughter is going to try to arrange a second consultation/opinion for me with an oncologist at Motol this week - she's a nurse there.

I only spent about ten minutes with my oncologist (now on vacation for the week) on Thursday, before being whisked away to my CT scan, only to spend another ten minutes with her when I got back almost an hour later. We’re to meet again on March 4th and chemo should begin on the 11th. She seems really nice and very knoweledgable and is located at Karlovo Náměstí, my usual hospital, close to my apartment. Chemo would just be once a month, but cost a fortune.

I’m going back to Homolka tomorrow to try to get all these tests and reports sent to me electronically, so I can have them translated and share them with other doctors. I'm looking for a clinical trial in the US, but found the little research I did both overwhelming and depressing.

I wanted this to be over. I wanted to write the stories from Intensive Care like "Mike vs. the Bedpan" and "Me and My Catheter," but I'm still getting over the surgery, while preparing myself for more unknowns.

I’m also going there to visit Vlad’a, who was back in the ward and already smoking on the balcony yesterday when I spoke to him. He had his stitches out today - through his nose of all places. I need to catch him before he chomps the bit back to Karvina, as I did his portrait and framed it over the weekend.

So, back at home and still living with my mother :-) and actually getting record amounts of sleep - four hours in a row last night, followed by another one and a half. It was a really beautiful day in Prague.

I went with my last Kateřinská roommate, Ivan (the guy with the strokes), Martha and my Mom down to the river to feed the swans. Unfortunately, everyone else in Prague had the same idea and all the swans were stuffed by the time we got there.

11 comments:

ledantec said...

i've tried to do a little searching on my own and find that most of the resources that come up are academic papers. i think i should be able to get access to many of them via GA Tech, so if you'd like me to grab a handful of pdf's, say the word. they'll either help or put you to sleep so, you know, win win from what i'm reading.

happy that you're out and about. take care of yourself.

cL

Maie said...

So the battle was won but not the war... I know the idea of all your future treatments must seem insurmountable and exhausting, but don't loose heart.

If you get bored and need a break from thinking about hospitals, you can read my blog on:

http://istanblogorama.blogspot.com

Thinking of you babe. Looking at plane tickets for May. So will come and see you then.

Una on Tour said...

Mike, Although i hope that your brain tumor is gone, i do hope that that dirty mind of yours will never really be properly clean as a whistle :-}.
I'm going to do something that doesn't happen very often, and i don't mean that i am going to have sex, I am going to send an American good Karma from Indonesia. Now that has to almost be a first.

Greg said...

Did some research that revealed some links and, at Mike's request, posting them here. He wants as many eyes on these things as possible before deciding which, if any, trails he wants to take part in.

One type of treatment that seems to be relatively effective for stage IV melanoma are based on immunotherapy.

"NCI Researchers Confirm the Effectiveness of Immunotherapy Approach to Treating Melanoma"
http://www.cancer.gov/newscenter/pressreleases/melanomaAutologus

"New Method of Gene Therapy Alters Immune Cells for Treatment of Advanced Melanoma; Technique May Also Apply to Other Common Cancers"
http://www.cancer.gov/newscenter/pressreleases/MelanomaGeneTherapy

Both of these studies were carried out by Dr. Steven A. Rosenberg and he has several ongoing trials. It could very well be worth investigating. His trials are located here. If you get in, everything is paid for -- you even get a per diam and travel costs (within US) paid for.
http://bethesdatrials.cancer.gov/investigator-profiles/rosenberg/default.aspx

There are instructions for how to get in touch with the research team on the individual trial links.

Pamela said...

I already emailed this to Mike, but thought I'd post it anyway, just so he has all of the references in one place:

http://www.centerwatch.com/patient/studies/cat196.html

VMH said...

Hey Mike. It's so good to see the pix of you out and about. And the black eye is kind of sexy...with the scarf you look sort of like a Buddhist monk after the Myanmar crackdown.
Been thinking about you a lot since hearing about your news. I'm so glad to hear the surgery was a success. This stage 4 melanoma sounds scary, but I know you can beat it.
There's an essay by the evolutionary biologist Stephan Jay Gould that I wanted to tell you about, called "The median isn't the message"; Gould was given 8 months to live after being diagnosed with some horrible rare cancer. He went on to beat that cancer and live for another 20 years. He cautions readers to be careful about how they interpret medical statistics and points out that a positive attitude is critical to success. The essay is widely available on line. I found it at: http://cancerguide.org/median_not_msg.html
Am rooting for you over here in Smichovland...keep fighting..
oxox
valentina

Steven said...

Mike,
Just wanted to make an official post to your blog to say what I've already said before: we're thinking of you every day and if we can do anything for you just say the word. You've thanked everyone for their support, but we should thank you too. Your blogging and ability to maintain that great sense of humor in this situation is both a comfort to everyone who's concerned about you and a testament to your character.

Hope to see you soon.
Steve

Anonymous said...

I have been virtually visting some sites too, seems like I keep getting linked back to www.cancer.gov, seems to be a wealth of info there. Monday is my busy day at work though so I am hoping to find out more in the next week. For now I am concentraring on the insurance aspect. Love you Mike! Ann

Anonymous said...

Hi, Mike. I am so sorry not to have left any comments earlier -- but have been thinking of you often, of course, and getting updates via the blog and Tom Parker.

Don't loose heart over latest developments. If anyone can surmount this, it's you.

Am thinking of a visit in April, if that might work for you -- ? Let me know.

Love -- Christine

Anonymous said...

Mike,

I hope that you will soon get a straight story from a doctor. I can only imaging how nightmarish it is in having to negotiate this mess, and to do it while recuperating from brain surgery, and, no less, in Czek is—well—heroic.


After some web-searching, I found a site that seems to be pretty comprehensive and that is informative. Others in the FOM (Friends of Mike—there are so many of us, in so many countries, that it deserves an acronym, no?) community may find it helpful as well….

MPIP (Melanoma Patients’ Information Page)
www.mpip.org

Once you get a chance to rest, this is another, more support oriented, one:

http://www.ontopofcancer.org/melanoma_support_group.php

see you soon,

Jon

Anonymous said...

I've been doing a little research myself and came up with a site that offers a personal matching service for melanoma patients seeking clinical trials:
http://www.melanomaintl.org/resources_trials.asp
PHONE/FAX: Outside of the Philadelphia Region: 866-463-6663

And this link is for a specific ongoing trial in Germany:
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=450988&version=patient&protocolsearchid=4229921

And a database of all kinds of clinical trials, currently listing 267 actively recruiting trials for melanoma sufferers:
http://clinicaltrials.gov