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Author | Topic: Cancer Survivors | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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. 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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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:
Bendamustine - Wikipedia
quote: 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) • • •
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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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.
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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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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: 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 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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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 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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
thank you both.
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RAZD Member (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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 Bendamustine - Wikipedia 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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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. 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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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. 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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
... it's a long road, but each journey starts with one step.
xkcd: Lanes
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 goby 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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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From Tom Batiuk and "Funky Winkerbean"
Funky Winkerbean | Comics and Games - seattlepi.com FYI my last checkup was the best so far since the last chemo. Thanks.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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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Calamities of Nature: Archive
Calamities of Nature, by Tony Piro, 07Oct2011
Just a little bit of perspective, eh? (or should that be cognitive dissonance ... ) Enjoy.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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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.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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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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.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 (Idle past 1433 days) Posts: 20714 From: the other end of the sidewalk Joined:
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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, : .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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