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Author Topic:   Cancer Survivors
RAZD
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Posts: 20548
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.9


(2)
Message 301 of 311 (672602)
09-09-2012 8:38 PM


Summary
Damn onifre. Another one. What kind?

Summary is simple: obviously we need to have another thread to continue this.

Thanks all for your support.


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.


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RAZD
Member
Posts: 20548
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.9


(6)
Message 302 of 311 (740144)
11-01-2014 2:18 PM


NOT A SUMMARY BUT AN UPDATE
It has been almost 2 whole years since my last post on my condition (Message 297), and that is because the news has been good.

Yesterday my oncologist said the latest cat-scan did not show evidence of lymphoma.

This cancer is not considered curable, but we can get periods of remission ... and this is the longest period since I was first diagnosed.

Part of it may be diet -- cutting out foods of questionable value, going with local fresh organic food, cutting out sugars and starches as much as possible.

Now all I need are some good results for the elections ...

Enjoy


we are limited in our ability to understand
by our ability to understand
RebelAmerican☆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 304 by RAZD, posted 05-24-2017 7:21 AM RAZD has acknowledged this reply

  
Adminnemooseus
Director
Posts: 3913
Joined: 09-26-2002


(1)
Message 303 of 311 (810010)
05-22-2017 8:44 PM


Topic taken out of summation mode
It had been closed, I presume because of the 300 messages per topic that was the standard at the time. It was that if topics got too many messages long, they were liable to self-destruct.

Adminnemooseus


Or something like that©.

  
RAZD
Member
Posts: 20548
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.9


(5)
Message 304 of 311 (810141)
05-24-2017 7:21 AM
Reply to: Message 302 by RAZD
11-01-2014 2:18 PM


Another UPDATE -- Ned
Now that we are out of summary mode I can provide an update.

Good news is I am still in remission, going on for 5 years now, out of the 12 years I've been living with it.

Bad news is that we have a new member:

A new road trip, Message 29: I am told I have "low grade" (i.e., slow growing) colon cancer. I complained that I deserved to have a better quality than that but my doc laughed at me.

I'll lose the first half of the large intestine but I'm told it should have no consequences after a few months of recovery.

Since it is slow growing there was any attempt to rush it particularly but for cancers they do move things up a bit. I did have to have my doc hurry things to get the colonoscopy in about a 2 week wait.

The good news is that the surgery should mean permanent cure.

enjoy


we are limited in our ability to understand
by our ability to understand
RebelAmerican☆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 302 by RAZD, posted 11-01-2014 2:18 PM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 20548
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.9


(1)
Message 305 of 311 (870421)
01-19-2020 11:28 AM


Welcome new member marc9000
From The Right Side of the News (renamed) Message 4330 by marc9000

quote:
RAZD writes:

During the Bush 43 (Schrubbia) administration there was no requirement to insure those of us with pre-existing conditions. This meant that I could no leave my then current employment without losing my insurance (I was diagnosed with cancer while there) and then paying exorbitant fees (plus high deductibles and co-pays) to cover my cancer ... if I could get anyone to take me. Curiously I call that an extreme increase in healthcare fees AND an infraction on my right to work where I want to.

My cancer story is different - yes I've been there too. A lousy 50/50 insurance plan, and no money. I was diagnosed in late 2012, I remember Buzsaw's death being on my mind at that time. 8 hours of surgery in November, and chemo and radiation all through the first half of 2013. Unable to work my regular (self employed) job, but was able to do some side work in my garage during that time, to help hold down the credit card hemorrhaging somewhat. Applied for some of the social security that I'd been paying into for the previous 40 years, but was told since I wasn't projected to be disabled for a full year, that I couldn't get a dime of it. So I often worked when I was quite sick, re-structured the remaining debt with my good credit, and paid / am paying it. No complaints.

RAZD writes:

Then I retired and got on medicare, and then the ACA was passed ... and my fees didn't change. That's what would have happened with the public option or with universal single payer medicare4all, but that was blocked by the republicans. ie -- you need to blame the republicans for your high fees, not the ACA or Obama. Sorry not sorry.

I don't know / remember just what stage the ACA was at when I was going through all that. But I was treated quickly and efficiently. Don't think I would have been in another country with its wonderful health care for all.


Welcome to the club of EvC cancer survivors, marc9000. As you can see there are a number of us on this forum, some we've lost, and many that still survive.

The ACA would have been in place in 2012, it was passed in 2009, though some facets were still being phased in, with major provisions coming into force in 2014. I believe one of the first to take effect was the provision that companies could no longer exclude people with pre-existing conditions. Of course how much benefit you got depended on whether or not your state participated in the Medicaid expansion (and I don't believe Kentucky did).

Patient Protection and Affordable Care Act - Wikipedia

Am I right in assuming that you are in full remission at this point? Cured? I'm not that lucky -- my lymphoma is currently not curable so I have to go back for more treatments when it recurs. There is hope with new DNA targeting treatment (Dana Farber studies) showing some success with this cancer. I'm currently in remissions but keeping tabs on the studies and their successes.

... 8 hours of surgery in November, and chemo and radiation all through the first half of 2013. Unable to work my regular (self employed) job, but was able to do some side work in my garage during that time, to help hold down the credit card hemorrhaging somewhat. Applied for some of the social security that I'd been paying into for the previous 40 years, but was told since I wasn't projected to be disabled for a full year, that I couldn't get a dime of it. So I often worked when I was quite sick, re-structured the remaining debt with my good credit, and paid / am paying it. No complaints.

Sounds like it was rough track for you. Lucky you weren't forced into bankruptcy like many Americans have been by the medical bills. I was lucky -- RI is one of two states that provide income assistance for temporary disability, and that paid for my rent and bills while I was in intensive care and post care when I had a stem cell transplant . I was able to return to work 6 months later, mostly recovered, but still weak and easy to tire. Lucky it was mostly a desk job and other took over the outside work for me. Very understanding company.

Temporary Disability / Caregivers Insurance, Rhode Island Dept. of Labor and Training

... But I was treated quickly and efficiently. Don't think I would have been in another country with its wonderful health care for all.

Curious why you would think that. Life threatening disease would be high priority treatment in any country. My experience in Canada was efficient and professional. There were no delays in treatment.

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 306 by marc9000, posted 01-20-2020 8:15 PM RAZD has responded

  
marc9000
Member
Posts: 1103
From: Ky U.S.
Joined: 12-25-2009
Member Rating: 1.4


(1)
Message 306 of 311 (870487)
01-20-2020 8:15 PM
Reply to: Message 305 by RAZD
01-19-2020 11:28 AM


Re: Welcome new member marc9000
Welcome to the club of EvC cancer survivors, marc9000. As you can see there are a number of us on this forum, some we've lost, and many that still survive.

Thank you - I noticed this thread several years ago and thought about jumping in, but I just never got to it and forgot it. I'll have to do some more reading up here as I get time.

Am I right in assuming that you are in full remission at this point? Cured?

I guess I can say I'm cured, but I'd also say I have a slightly better chance than most people, of it returning. My chemo doctor told me, just after the surgery, that if I didn't take the chemo / radiation treatments that it would be about a 50/50 chance of it returning, and with those treatments it would cut it down to only about a 20% to 25% chance. He told me that after 5 years, by the summer of 2018, that I'd be pretty much in the clear, and they'd "kick me out" haha. So I was kicked out, but I don't take anything for granted, I appreciate every day. I see my family doctor every 6 months, my biggest concern now is type 2 diabetes. (diagnosed during the cancer stuff)

Sounds like it was rough track for you.

It was tough, but could have been worse. It was an interesting time too, and I'll never forget some of the more pleasant memories. Here's the main one; The colonoscopy doctor, (yes, I had THAT kind of cancer, you know, the part of my body that most posters here think constitutes my entire being hahahaha) was the one that gave me the news, "you need surgery, and you need it soon", and he was obviously feeling me out as to what my attitude was. I said "you're the boss", and he quickly found out that I was determined to do exactly what I was told, and not make waves, or even ask too many questions. "Let's find you a surgeon" and he came back in the room in about 10 minutes with a name, and told me their office would contact me in a day or two for the first appointment. I quickly went home and looked him up - 3 reviews, 2 positive and 1 negative. No picture, but he was 72 years old!! I thought, oh no, they give patients with lousy insurance to the old shaky hand guys. But I couldn't believe it when I went to see him for the first time - after about 2 minutes, I thought "I don't want anybody BUT this guy!!" He didn't look a day over 62, was easygoing and friendly, and seemed to really know his stuff, he clearly loved his work. And he didn't disappoint! He was as likely to do hospital visits at 2 am as at 2 pm. He did retire a couple of years later, but I'll never forget him.

About six months later, as I was engaged in some small talk with one of the chemo nurses, she asked who my surgeon was. I told her, and she said "whoa, how'd you rate that - you got the best!" I said I know I did, just got lucky!

More later.

I'm not that lucky -- my lymphoma is currently not curable so I have to go back for more treatments when it recurs. There is hope with new DNA targeting treatment (Dana Farber studies) showing some success with this cancer. I'm currently in remissions but keeping tabs on the studies and their successes.

Well, my sincere best wishes to you. I have opinions (surprise!) about the political state of medicine in the U.S., and I'll get around to stating them, then I'd like to see your responses, but I'll only acknowledge them and drop it. I don't want to participate in hostilities in this thread.

I'll do more reading here in the coming weeks.


This message is a reply to:
 Message 305 by RAZD, posted 01-19-2020 11:28 AM RAZD has responded

Replies to this message:
 Message 307 by Faith, posted 01-20-2020 8:56 PM marc9000 has not yet responded
 Message 309 by RAZD, posted 01-21-2020 12:24 PM marc9000 has not yet responded

  
Faith
Member
Posts: 34693
From: Nevada, USA
Joined: 10-06-2001
Member Rating: 1.2


(1)
Message 307 of 311 (870489)
01-20-2020 8:56 PM
Reply to: Message 306 by marc9000
01-20-2020 8:15 PM


Re: Welcome new member marc9000
Sorry to hear about all that, Marc, but certainly glad you've come through it so well. Best wishes from me.
Faith

This message is a reply to:
 Message 306 by marc9000, posted 01-20-2020 8:15 PM marc9000 has not yet responded

Replies to this message:
 Message 308 by GDR, posted 01-21-2020 2:01 AM Faith has not yet responded

  
GDR
Member
Posts: 5075
From: Sidney, BC, Canada
Joined: 05-22-2005
Member Rating: 2.2


(1)
Message 308 of 311 (870492)
01-21-2020 2:01 AM
Reply to: Message 307 by Faith
01-20-2020 8:56 PM


Re: Welcome new member marc9000
As I've said earlier in this thread I had 10 hours of surgery to remove my tumour with both an ENT and a neuro surgeon. I had 5 weeks of radiation which caused throat spasms which blew out a zenkers diverticulum in my throat requiring another surgery. I have had 3 stents put in as a had a blocked artery and have been having quarterly follow up visitations for the cancer for nearly 5 years.

The point of writing all that is that the cost was completely covered by our medicare system. I have probably had over a million dollars worth of medical care in the last 5 years. My politics lean towards the conservative side of things, (at least by Canadian standards), but I am grateful that we do have publicly funded health care in Canada even with all the warts in the system.

BTW way I feel great and and had a very small recurrence of the cancer last spring which was removed in 20 mins in the clinic.


He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.

Micah 6:8


This message is a reply to:
 Message 307 by Faith, posted 01-20-2020 8:56 PM Faith has not yet responded

  
RAZD
Member
Posts: 20548
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.9


(1)
Message 309 of 311 (870519)
01-21-2020 12:24 PM
Reply to: Message 306 by marc9000
01-20-2020 8:15 PM


Re: Welcome new member marc9000
Thank you - I noticed this thread several years ago and thought about jumping in, but I just never got to it and forgot it. I'll have to do some more reading up here as I get time.

Yes there are a number of survivors on this forum, each with their own story, some good and some sad.

I guess I can say I'm cured, but I'd also say I have a slightly better chance than most people, of it returning. My chemo doctor told me, just after the surgery, that if I didn't take the chemo / radiation treatments that it would be about a 50/50 chance of it returning, and with those treatments it would cut it down to only about a 20% to 25% chance. He told me that after 5 years, by the summer of 2018, that I'd be pretty much in the clear, and they'd "kick me out" haha. So I was kicked out, but I don't take anything for granted, I appreciate every day. I see my family doctor every 6 months, my biggest concern now is type 2 diabetes. (diagnosed during the cancer stuff)

Yeah, I was going on 5 years remission when it came back last year, with a vengeance: filled one lung cavity with lymph fluid to the point where I was out of breath walking down the block. They drained it, taking 4 litres out (think of having a gallon jug of fluid in your chest). After that was treated it happened in the other lung cavity. So I was in and out of hospital almost all of 2018. It gone now, but I apparently have some permanent scarring that restricts my lungs. I've worked up to 3.5 miles walking so far (fortunately our little town has a lot of interesting shops and sights to walk by, including the local bike shop that organizes friendly 10mi bike rides weekly, so I hope to get back to that in the spring). And the local Y had a free program for cancer survivors to regain muscle and balance, and I got in just after the medicare PT stopped.

My biggest problem at the moment is neuropathy in my hands that makes it difficult to hold things, and shaking hands is painful.

It was tough, but could have been worse. It was an interesting time too, and I'll never forget some of the more pleasant memories. Here's the main one; The colonoscopy doctor, (yes, I had THAT kind of cancer, you know, the part of my body that most posters here think constitutes my entire being hahahaha) was the one that gave me the news, "you need surgery, and you need it soon", and he was obviously feeling me out as to what my attitude was. I said "you're the boss", and he quickly found out that I was determined to do exactly what I was told, and not make waves, or even ask too many questions. "Let's find you a surgeon" and he came back in the room in about 10 minutes with a name, and told me their office would contact me in a day or two for the first appointment. ...

Yeah, my now retired GP told me after I saw him about swollen glands in my throat I thought was a cold. He referred me to an oncologist that has since moved to Duke Hospital, and I'm on my second one. But I have been dealing with this for 15 years now.

... I thought, oh no, they give patients with lousy insurance to the old shaky hand guys. But I couldn't believe it when I went to see him for the first time - after about 2 minutes, I thought "I don't want anybody BUT this guy!!" He didn't look a day over 62, was easygoing and friendly, and seemed to really know his stuff, he clearly loved his work. And he didn't disappoint! He was as likely to do hospital visits at 2 am as at 2 pm. He did retire a couple of years later, but I'll never forget him.

Or the nurses in the cancer ward. I would be in weekly for chemo infusions and they were/are the best.

About six months later, as I was engaged in some small talk with one of the chemo nurses, she asked who my surgeon was. I told her, and she said "whoa, how'd you rate that - you got the best!" I said I know I did, just got lucky!

That's what I've been told about my current oncologist. This one's younger than me so he should outlast me ...

Well, my sincere best wishes to you. I have opinions (surprise!) about the political state of medicine in the U.S., and I'll get around to stating them, then I'd like to see your responses, but I'll only acknowledge them and drop it. I don't want to participate in hostilities in this thread.

Well I don't want to turn this thread into a political fight either, but I am happy to share experiences and views on treatment.

To me the most exciting news is the new approach using DNA to target the person specific cancer. It has had some very positive results even with my type of lymphoma, so I'm waiting for FDA approval for general treatment.

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 306 by marc9000, posted 01-20-2020 8:15 PM marc9000 has not yet responded

  
RAZD
Member
Posts: 20548
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 2.9


Message 310 of 311 (872209)
02-22-2020 1:54 PM


status
Medication I am on make my joints ache, particularly finger joints. The medication I take to ease this makes me sleepy. Latest scan shows one evil lymph node swelling ... so the beast is wakening.

My posting is down because of pain and sleeping.

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)

Replies to this message:
 Message 311 by AZPaul3, posted 02-22-2020 4:43 PM RAZD has not yet responded

  
AZPaul3
Member
Posts: 4817
From: Phoenix
Joined: 11-06-2006
Member Rating: 4.7


(1)
Message 311 of 311 (872215)
02-22-2020 4:43 PM
Reply to: Message 310 by RAZD
02-22-2020 1:54 PM


Re: status
Remember Ninja proteins? Message 185

Everyone here has plenty more available for you!

Eschew obfuscation. Habituate elucidation.

This message is a reply to:
 Message 310 by RAZD, posted 02-22-2020 1:54 PM RAZD has not yet responded

  
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