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EvC Forum Side Orders Coffee House Cancer Survivors Summations Only
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RAZD
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Posts: 15744
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Message 213 of 301 (533795)
11-02-2009 10:00 PM
Reply to: Message 212 by Tanypteryx
11-01-2009 10:09 PM


Cool. If you (anyone) follow the link in my signature you will find my email at the bottom of the page.

They are very Ecuadorable!

Any chance of a new species (and naming rights?) that would be awesome - you might have to change your avatar.

Enjoy.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

This message is a reply to:
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RAZD
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Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
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Message 214 of 301 (540693)
12-27-2009 8:09 PM


three down one to go ... updates
Great timing, eh? Second round just before TGiving and this last one just for the solstice -- session 3 of 4 in round 4. The chemo this time around is spread out over 3 days, 4 weeks apart, the last session will be in January. The chemical is a biological one, grown in bacteria using genetics, a technology that did not exist not too long ago:

http://en.wikipedia.org/wiki/Bendamustine

quote:
Bendamustine (INN, trade names Ribomustin and Treanda; also known as SDX-105) is a nitrogen mustard used in the treatment of chronic lymphocytic leukemia (CLL)[1] and non-Hodgkin's lymphoma (NHL). It belongs to the family of drugs called alkylating agents. It is also being studied for the treatment of sarcoma.[2]

On March 20, 2008, Cephalon received approval from the United States Food and Drug Administration to market bendamustine in the US, where it is sold under the tradename Treanda.[3] Bendamustine is the first drug approved for patients with CLL in the US since 2001.

On October 31, 2008, the FDA granted further approval to market Treanda for the treatment of indolent B-cell non-Hodgkin's lymphoma (NHL) that has progressed during or within six months of treatment with rituximab or a rituximab-containing regimen. [4]


Cutting edge technology. Go Gadget Go.

Enjoy.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

Replies to this message:
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RAZD
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Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


(1)
Message 215 of 301 (547289)
02-17-2010 9:59 PM
Reply to: Message 214 by RAZD
12-27-2009 8:09 PM


three four down one two to go ... updates
Well it looks like I was a little premature in my last post.

Last Friday we had an assesment Catscan to see how things were progressing with these two options:

(1) If progressing well, go through two more sessions,
(2) If not progressing well, stop and try something else.

The good news is that things are progressing well, and tomorrow I start session five, with #six in march.

The bad news is two more sessions and subsequent loss in energy.

Ah well, better than the alternative.

http://en.wikipedia.org/wiki/Bendamustine

This stuff is kicking axx as the nodes are already down to normal levels, and the next two sessions are to (hopefully) nail the lid on their coffins. I also seem to have fewer side effects than before (but hard to tell from subjective evidence ... if ya know what I mean ....). Being tired is the biggest effect. No endurance either.

But it looks like I'll be around for a while yet. Going to be time for bicycling soon.

Enjoy.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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Replies to this message:
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RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 217 of 301 (597765)
12-23-2010 9:45 PM


general update - chemo-brain
Hi all and thanks again for all the support.

I have just cleared my latest checkup with a (so far) clean slate, no swollen lymph nodes or other evidence of return (so far).

quote:
http://www.mayoclinic.com/health/chemo-brain/DS01109

Though chemo brain is a widely used term, it's misleading. It's not yet clear that chemotherapy is the cause of concentration and memory problems in cancer survivors. And many cancer survivors with memory problems still score well on cognitive tests, leaving doctors wondering whether chemo brain really exists.


From personal experience I found that chemo therapy has affected me, causing mental process to be slower -- this was measured by using timed sudoku tests and comparing overall weekly average results.

http://www.websudoku.com/

When not under the effects of the chemicals I could normally solve the easy level puzzles in 3 to 4 minutes, with no errors. During weeks of chemo this became 5 to 6 minutes, and sometimes with mistakes\errors.

The easy level was used as they are generally solved in a straight-forward manner that does not require the trial and error necessary with the more difficult levels.

The other problem I see is more insidious: I think there has been some permanent memory loss, but have no way to test this. Personally this worries me for long term prospects with future treatments. I also hold this responsible in part for my mothers memory loss (diagnosed as senile dementia, no short term memory left, but otherwise functional).

During treatments I had trouble remembering daily tasks etc, and had to write myself notes, something I never had to do before. This has reduced but not entirely gone away, as far as I can tell.

Knowing this result, would I have done this? Yes, without doubt. Just as I will continue with future treatments when they become necessary, and always with the hope that the next one will be the magic bullet or that a cure is found.

So for those of you with cancer, happy holidays and enjoy the good times: they are worth having.

or for those of you with relatives, friends and relations with cancer, give them a hug and pass on my greetings.

Enjoy.

Edited by RAZD, : chemo not chemoi


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

Replies to this message:
 Message 218 by RAZD, posted 12-25-2010 10:34 AM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 218 of 301 (597891)
12-25-2010 10:34 AM
Reply to: Message 217 by RAZD
12-23-2010 9:45 PM


Re: general update - chemo-brain
From Omnivorous, Message 25 on another thread

RAZD writes:

As someone who has experience "chemo-brain" - the adverse effect on mental activity due to the chemical medications taken (made me more like common folk? ;)) - I can sympathize with someone saying something that did not come out entirely as conceived, however in that case one should not be driving the bus.

Hi, RAZD.

I'm all too familiar with chemical brain, though not chemo brain.

An auto accident eight years ago left me with cervical spine and leg damage, treated with bone grafts and titanium braces in my spine, treatment with steroids, potent anti-inflammatories, etc.

Complications due to these drugs in turn led to GI issues requiring further surgery (and additional complications) and drug therapy: Six trips to the OR in the past two years, and a (hopefully) last major operation in a few months to remove a considerable amount of damaged intestine.

After startling moments of emotional lability and disinhibition (there are subjects I cannot discuss without sobbing--the subjects appear to be random, including, of all things, sidewalk chalk), I was diagnosed with traumatic brain injury.

At times I am taking as many as a dozen different drugs--opiates, anti-seizure meds, combination antibiotics, steroids, anti-virals, and so on. Sometimes I have difficulty remembering which drug side-effect another drug is supposed to remedy, and it feels like I am nestled like a Russian doll in outer shells of drugs, like capsules inside capsules.

Presently I am recovering from a major shingles eruption (I bet you are familiar with that), but feel more myself, now that I am down to a half dozen drugs and tapering off opiates, neurontin and prednisone.

I'm sure other members here have noted the emotionally labile behavior (though they couldn't hear me sobbing) as well as the disinhibition and clouded thinking. The impulse to explain to others that what they see at those times are injury, illness and drug effects--not the native me--is strong...as you can see. :)

Sorry, all, if that is TMI. I've become socially infamous locally for saying what pops into my mind at the most inauspicious moments.

All of this is my way of saying I understand, if not the experience of your cancer, at least your struggle to regain the dream of health and the need to measure the cost of regaining it.

Your frankness and determination have encouraged me these past few years. Thank you.

Thank you.

Hopefully the surgery was not done by the Boston doctors that miscounted the vertebrae ...

Yes familiar with the shingles -- still have the neuralgia going on, with tingles and swelling as a constant part, and it's now going on four months.

And I hate being bound to drugs.

Enjoy

Edited by RAZD, : finished reply


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

This message is a reply to:
 Message 217 by RAZD, posted 12-23-2010 9:45 PM RAZD has acknowledged this reply

Replies to this message:
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RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 221 of 301 (597995)
12-26-2010 10:45 AM
Reply to: Message 220 by Panda
12-26-2010 2:33 AM


Re: general update - chemo-brain
thank you both.
This message is a reply to:
 Message 220 by Panda, posted 12-26-2010 2:33 AM Panda has acknowledged this reply

  
RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 222 of 301 (597999)
12-26-2010 12:26 PM
Reply to: Message 219 by Omnivorous
12-25-2010 3:56 PM


Re: general update - chemo-brain
Hi Omnivorous,

Yes, for those who can, I advise getting the shingles vaccine. I can't because it is a live virus vaccine and I still have a suppressed immune system, so the vaccine could cause a repeat.

This is what I looked like with the shingles:

The scabbing is gone but the skin is still red and is regrowing nerves (hence the tingling, and when they short out, pain that redefines pain).

I've tried to stay fascinated by the science of my medical issues and care; asking about the evolutionary implications bemuses the clinicians a bit, which is always amusing.

Yes, I've talked to my doctor's in a similar vein, particularly with the heavy prospect of the cancer becoming immune to previous treatments and the possibility of eventually running out of options. On the plus side, new treatments are developed every year, and the next new one could be the ticket (or my current one holds up - it's a new biogenic drug bendamustine). They usually agree.

Each assembly was about the size and thickness of a nickel. I haven't been so impressed with medical technology since working at the Dana-Farber years ago.

Every year brings new developments.

Enjoy

http://en.wikipedia.org/wiki/Bendamustine


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

This message is a reply to:
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Replies to this message:
 Message 223 by Omnivorous, posted 12-26-2010 1:03 PM RAZD has acknowledged this reply
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RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 226 of 301 (598009)
12-26-2010 4:46 PM
Reply to: Message 225 by Buzsaw
12-26-2010 4:22 PM


diet & health
Thanks Buz,

While in the USAF, I began to be apprised on good holistic nutrition, herbs, minerals and vitamins etc.

Since last year I've been on a diet of no sugar (including no HFCS) except what comes with fruits and veggies, no starch and no wheat (even gluten free). No prepared foods either. About the only grain I eat at present is gluten free oatmeal, with breakfast being either plain yogurt (greek style) and fruit or oatmeal and fruit.

Sometimes I mix peanut butter with the yogurt to add some protein, but the greek style has more protein than the regular style, and I eat a lot of (non beef) meats for lunch and dinners (with veggies), but no breads, no pastas (sigh).

I've lost over 40 lbs on this diet (plus my 1000 miles of bike riding this year), and feel better than the last several years. I've fallen a little off the diet for the holidays, and can tell that there is an immediate effect, so it's back to hard core for the new year.

This may not be holistic, but it is working for me at this moment in my life.

Enjoy.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

This message is a reply to:
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RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 228 of 301 (598032)
12-27-2010 8:34 AM
Reply to: Message 227 by Buzsaw
12-26-2010 11:43 PM


Re: diet & health
Thanks Buz.

It's important to avoid hydrogenated peanut butter or ever partially hydrogenated.

I buy either fresh ground (health stores) or those (few) brands that only list peanuts on the ingredients.

Better yet almonds are more nutritious.

Anf I hear walnuts are good for you as well. The best peanut butter I had was from a health food store in Victoria BC (no longer there, sigh) that allowed you to select the peanuts to grind, and I used spanish reds.

Enjoy.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

This message is a reply to:
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RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 229 of 301 (626436)
07-29-2011 11:42 AM


you know how I feel ...
... it's a long road, but each journey starts with one step.

http://xkcd.com/931/

april 2010 was the last time the "do loop" took me back to treatment ...

healthwise I feel good, so far, getting ready for the metric century (100km) bike ride next week.

sometimes it helps to focus on the road in front of you, and not how far down the road you will need to go


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

  
RAZD
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Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


(2)
Message 230 of 301 (635863)
10-02-2011 11:37 AM


right on, my man
From Tom Batiuk and "Funky Winkerbean"

http://www.seattlepi.com/.../fun/Funky_Winkerbean/2011-10-02

FYI my last checkup was the best so far since the last chemo.

Thanks.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

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RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


(2)
Message 231 of 301 (636638)
10-08-2011 5:30 PM
Reply to: Message 230 by RAZD
10-02-2011 11:37 AM


Here's another one
http://www.calamitiesofnature.com/archive/?c=594

Calamities of Nature, by Tony Piro, 07Oct2011

Just a little bit of perspective, eh? (or should that be cognitive dissonance ... )

Enjoy.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

This message is a reply to:
 Message 230 by RAZD, posted 10-02-2011 11:37 AM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 233 of 301 (636651)
10-08-2011 7:45 PM
Reply to: Message 232 by fearandloathing
10-08-2011 7:01 PM


initial diagnosis issues
Hi fearandloathing,

.now I wait for a result from a biopsy....I am scared.

For cancer or bacterial infection? I'm assuming they want to rule out cancer as you posted here.

But yeah, I think that waiting to know is the toughest part - once you know it is easier, even when it comes back positive (as mine did), because then you start treatment, you have something to do, to concentrate on.

But I sincerely hope it comes back benign or negative.

Let me know, eh? You can PM me if you want.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

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 Message 232 by fearandloathing, posted 10-08-2011 7:01 PM fearandloathing has acknowledged this reply

  
RAZD
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Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


(1)
Message 234 of 301 (656524)
03-19-2012 4:00 PM


Cancer's inevitable return again
Dear Family, Friends and Relations,

My cancer is back, there is no icing on the cake this year, even though this marks the longest interval between attacks. This cancer is still incurable, however every year we get a little closer to knocking it out.

This is the fifth round with the little buggers, and I'm not close to beaten yet.

There is a clinical study available this time around, with some leading edge drugs: Ofatumumab and Bortezomib. Ofatumumab is an antibody directed at a protein on the cell surface of B-cell non-Hodgkin lymphoma (what I have), and Bortezomib binds to a protein that is needed for cancer cell growth, so these are both "magic bullet" drugs directed at the cancerous cells. They have not been used in combination before, nor has Bortezomib been used on non-Hodgkin lymphoma (it is approved to use on Leukemia).

I am excited by the prospects of this treatment. Tomorrow I get a port installed, this is a device inserted just under the skin with a catheter to a vein, so that instead of getting a needle for the intravenous infusions they just poke into the head of the port. Wednesday I get a bone marrow biopsy as the last test for the study (sets the baseline). Next week I start the infusions with one a week for 4 weeks and then 1 every two months for the rest of the year, with followup testing for the next 5 years.

As far as I can see from the study information, I'm a perfect candidate for the study, and it looks like the prospects are good for a fairly rapid knock-down of the cancer cells.

Thank you for your support.

Paul.


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

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RAZD
Member
Posts: 15744
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


(1)
Message 237 of 301 (656531)
03-19-2012 4:59 PM
Reply to: Message 235 by Granny Magda
03-19-2012 4:24 PM


Re: Cancer's inevitable return again
Hi Granny Magda, Trixie, Jar etc

Thanks.

Seriously, Ofatumumab? I wouldn't give a D&D demon a name that bad.

Maybe the name alone will be enough to scare the little buggers ...

I think of them as Ofatwawho and Borgzombie,

Enjoy.

Edited by RAZD, : .


we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click)

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