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EvC Forum Side Orders Coffee House Cancer Survivors Summations Only
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Author Topic:   Cancer Survivors
RAZD
Member
Posts: 15740
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


Message 211 of 301 (533584)
11-01-2009 11:10 AM
Reply to: Message 210 by Tanypteryx
11-01-2009 9:15 AM


pictures - I want pictures! are they ecuadorable?


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 210 by Tanypteryx, posted 11-01-2009 9:15 AM Tanypteryx has responded

Replies to this message:
 Message 212 by Tanypteryx, posted 11-01-2009 10:09 PM RAZD has responded

  
Tanypteryx
Member
Posts: 472
From: Oregon, USA
Joined: 08-27-2006
Member Rating: 2.7


Message 212 of 301 (533631)
11-01-2009 10:09 PM
Reply to: Message 211 by RAZD
11-01-2009 11:10 AM


RAZD, if you send me your email address I can send you some. I shot about 2800 images and I just starting to process them, but the ones I have worked on so far are looking good. It would probably be better to send them privately rather than clutter up EvC. I also have posted some on my Facebook. My email is ore_dfly@comcast.net

They are very Ecuadorable!


What if Eleanor Roosevelt had wings? -- Monty Python

You can't build a Time Machine without Weird Optics -- S. Valley


This message is a reply to:
 Message 211 by RAZD, posted 11-01-2009 11:10 AM RAZD has responded

Replies to this message:
 Message 213 by RAZD, posted 11-02-2009 10:00 PM Tanypteryx has not yet responded

    
RAZD
Member
Posts: 15740
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


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:
 Message 212 by Tanypteryx, posted 11-01-2009 10:09 PM Tanypteryx has not yet responded

  
RAZD
Member
Posts: 15740
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.1


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:
 Message 215 by RAZD, posted 02-17-2010 9:59 PM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 15740
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) • • •

This message is a reply to:
 Message 214 by RAZD, posted 12-27-2009 8:09 PM RAZD has acknowledged this reply

Replies to this message:
 Message 216 by xongsmith, posted 02-18-2010 1:56 PM RAZD has acknowledged this reply

  
xongsmith
Member
Posts: 1359
From: massachusetts US
Joined: 01-01-2009
Member Rating: 2.2


Message 216 of 301 (547348)
02-18-2010 1:56 PM
Reply to: Message 215 by RAZD
02-17-2010 9:59 PM


Re: three four down one two to go ... updates
Sounds very promising!
Keeping my fingers crossed!
check your email momentarily....


- xongsmith, 5.7d
This message is a reply to:
 Message 215 by RAZD, posted 02-17-2010 9:59 PM RAZD has acknowledged this reply

    
RAZD
Member
Posts: 15740
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: 15740
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:
 Message 219 by Omnivorous, posted 12-25-2010 3:56 PM RAZD has responded
 Message 220 by Panda, posted 12-26-2010 2:33 AM RAZD has responded

  
Omnivorous
Member
Posts: 3293
From: Adirondackia
Joined: 07-21-2005
Member Rating: 3.8


(1)
Message 219 of 301 (597920)
12-25-2010 3:56 PM
Reply to: Message 218 by RAZD
12-25-2010 10:34 AM


Re: general update - chemo-brain
RAZD writes:

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

I had excellent luck with my spine surgeon, who is a young-but-experienced director of the Spine Center at Yale with the hands of a concert pianist.

I shopped around and chose him for his confidence ("I can fix it.") and his hands. I have no remaining deficits from the spine injuries. I do have the pleasure of incorporating several wafers of corpse bone between three cervical vertebrae (donor bone, more discreetly stated), so, at long last, I truly am a Voodoo Chile.

The engineering work on those wafers was impressive: two thin layers of hard bone sandwiching one of soft bone: the former contributing enough durability to remain intact during the fusion process, the latter's porosity more readily infiltrated by my own cells, and the entire thing held together with tiny dowel rods of hard bone.

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.

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.

Ah, formally post herpetic neuralgia, then--I'm at the 2.5 month mark, and my docs say it's not PHN until the pain and tingling persist past the three-month mark.

On an EvC note, I find shingles a fascinating evolutionary story: that chicken pox viri "hibernated" near my spinal nerve roots for 50 years and then traveled back up nerves to the surface--again infectious as chicken pox--is intriguing as a long-term reproductive/transmission strategy.

The pain, itching and tingling that promote scratching/rubbing, increase the odds of transmission. Yet at no point does the infection threaten the host's life, instead lurking again for another opportunity to flare and potentially infect others. All in all, a neat trick.

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.

Other readers: don't worry about becoming infected from another person's shingles flare--the overwhelming odds are that you have already had chicken pox, and the virus does not transmit shingles, per se, only chicken pox.

And I hate being bound to drugs.

Amen, Brother RAZD, amen.

In my own case, though (strong supporter of cognitive liberty and former full-time freak), I appreciate the irony.


I know there's a balance, I see it when I swing past.
-J. Mellencamp

Real things always push back.
-William James


This message is a reply to:
 Message 218 by RAZD, posted 12-25-2010 10:34 AM RAZD has responded

Replies to this message:
 Message 222 by RAZD, posted 12-26-2010 12:26 PM Omnivorous has responded

    
Panda
Member (Idle past 89 days)
Posts: 2688
From: UK
Joined: 10-04-2010


Message 220 of 301 (597955)
12-26-2010 2:33 AM
Reply to: Message 218 by RAZD
12-25-2010 10:34 AM


Re: general update - chemo-brain
I don't know of anything particularly pertinent to say, but I try to avoid being one of those people that go 'silent' when someone is unwell or suffers a loss.

So, I send you my best wishes and hope you get enough of a break to enjoy christmas with your friends and family.


This message is a reply to:
 Message 218 by RAZD, posted 12-25-2010 10:34 AM RAZD has responded

Replies to this message:
 Message 221 by RAZD, posted 12-26-2010 10:45 AM Panda has acknowledged this reply

  
RAZD
Member
Posts: 15740
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: 15740
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:
 Message 219 by Omnivorous, posted 12-25-2010 3:56 PM Omnivorous has responded

Replies to this message:
 Message 223 by Omnivorous, posted 12-26-2010 1:03 PM RAZD has acknowledged this reply
 Message 225 by Buzsaw, posted 12-26-2010 4:22 PM RAZD has responded

  
Omnivorous
Member
Posts: 3293
From: Adirondackia
Joined: 07-21-2005
Member Rating: 3.8


Message 223 of 301 (598001)
12-26-2010 1:03 PM
Reply to: Message 222 by RAZD
12-26-2010 12:26 PM


Re: general update - chemo-brain
RAZD, I can only once more salute your courage, honesty and frankness.

My own infection covers a wide area across my back, side and groin, measured at ~2 sq ft, but nothing to match the intensity and intimacy of your facial eruption.

Yes, shingles do redefine pain: I had extensive burns as a teenager, and I've never felt a pain to rival that until shingles. I hate opiates because they make me stupid, but nothing else is effective for me.

My fight is far easier than yours: the clinical path is clear, and, barring a low probability development, there is a good outcome ahead.

Your struggle is like a marathon of street brawls and chess matches. I know how dedicated and creative oncologists are, and how determined you are.

My money's on you.


This message is a reply to:
 Message 222 by RAZD, posted 12-26-2010 12:26 PM RAZD has acknowledged this reply

Replies to this message:
 Message 224 by Panda, posted 12-26-2010 2:02 PM Omnivorous has acknowledged this reply

    
Panda
Member (Idle past 89 days)
Posts: 2688
From: UK
Joined: 10-04-2010


Message 224 of 301 (598002)
12-26-2010 2:02 PM
Reply to: Message 223 by Omnivorous
12-26-2010 1:03 PM


Re: general update - chemo-brain
My best wishes go to you too.

Many a time I have looked back on my 'turbulent' past and still thought to myself: "I have had it reasonably easy."


This message is a reply to:
 Message 223 by Omnivorous, posted 12-26-2010 1:03 PM Omnivorous has acknowledged this reply

  
Buzsaw
Member (Idle past 308 days)
Posts: 9158
From: new york usa
Joined: 03-14-2003


Message 225 of 301 (598008)
12-26-2010 4:22 PM
Reply to: Message 222 by RAZD
12-26-2010 12:26 PM


Re: general update - chemo-brain
Hi Razd. Thanks for sharing. Having had a bad beginning in my youth, nutrition wise, my digestive system assimilation is poor. I've never in my 75 years weighed over 127 (usually 119-124. Having worked in my dad's repair garage, cleaning parts, breathing exhaust and grinding/drilling asbestos brake shoes and eating a poor diet back in the 1940s at age 9 until out of high school, I became the disease prone runt in my family of six children.

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

I've been in MD's offices 4 or five times in my life of 75 years, including AF physical, the last visit about 40 years ago when meds left me in a 24 hr coma.

I've said the above to say that the only health problems I have at age 75 are times of heart defibrillation and sores that come on my face when I get careless on diet. I love carbohydrates and only consume good ones like fruits, whole grains, nuts etc.

What I do when a facial sore begins to form or heart skips is fast from nearly all fruits and whole grains and all dairy products except organic white yogurt and eat less, drinking about 8 glasses of water per day (smart water w/electrolytes good) . The only bread I eat is whole grain sprouted bread which I buy frozen. I eat organic farm eggs with dark yokes, cooking the whites and eating the yokes raw, nuts, some beans, brown rice and a little meat, mostly sardines, north seas salmon and some poultry. I also apply the above in hay fever season to avoid hay fever, being highly susceptible to it). It does wonders.

I also apply aloe leaf or dried comfrey (I chew up the dried comfrey until soft and make paddies) poultices over the sores while sleeping and remove in the morning. I take vitamin E which has D alpha tocopherols (not D1 or DL=synthetic) in it, vitamin C, magnesium, and some other vitamins, essential oils like flax, ground flax seed, etc.

As soon as I do avoiding sweets fast and go mostly raw vegies, nuts, etc the sores go away rather quickly. Going on a regime is not easy for one somewhat addicted to sweets, in whatever form.

Thankfully at 75 I can work right along with yunguns, climb the high roofs of my warehouses for roof repair and carrying heavy loads, etc.

For what it's worth to you. Perhaps it will inspire you that you needn't give up on other options. I pray for you when you come to mind. You're a long time valued member of EvC by all. May the one and only true god, Jehovah, be with you and enlighten you. Sincerely, Buz


BUZSAW B 4 U 2 C Y BUZ SAW.
The Immeasurable Present Eternally Extends the Infinite Past And Infinitely Consumes The Eternal Future.
Time Relates To What Is Temperal. What Is Eternal Is Timeless.
This message is a reply to:
 Message 222 by RAZD, posted 12-26-2010 12:26 PM RAZD has responded

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