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Author Topic:   Living with Cancer (from Cancer Survivors)
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


Message 1 of 221 (672977)
09-10-2012 7:31 AM


This is proposed as an extension to the thread Cancer Survivors, which is currently being closed due to length, yet there is still much to say.

My previous opening post said:

quote:
My name is Paul Smith
I'm 59
I have Follicular Lymphoma
and I'm a survivor

Here's an update for my 'icon' self:

Links:
http://www.lymphomation.org/type-follicular.htm
http://www.cancerbackup.org.uk/.../TypesofNHL/Follicular
http://pleiad.umdnj.edu/hemepath/follicular/follicular.html
http://www.lymphomainfo.net/nhl/follicular.html
http://www.lymphomasurvival.com/

lymph -noun
1. Anatomy, Physiology. a clear yellowish, slightly alkaline, coagulable fluid, containing white blood cells in a liquid resembling blood plasma, that is derived from the tissues of the body and conveyed to the bloodstream by the lymphatic vessels.

I was first diagnosed in September 2005, and underwent chemo-therapy for 4 months, 6 sessions every 3 weeks. This reduced the lymphoma to baseline levels and I was declared in remission.


The correspondence on that thread have been very therapeutic for me, and I would like to thank again all those that have posted there.

There are a couple of things I would like to correct\update there:

I am now 65, and I am not really a survivor ... yet.

I'm back in treatment once again, and it is a rather intense\invasive\whelming, with one week in hospital, one week of continued effects of the chemo and one week to recover strength and blood counts etc before starting again. This is now the 3rd of 6 rounds of treatment, and it won't really cure me, just knock it back into relative remission for an indeterminate amount of time.

My form of cancer is incurable at this stage of medical knowledge, so in reality I am living with cancer as part of my life. This has been going on for 7 years now, and with treatment can go on for many more years. Hopefully a cure can be found before too long, or I die of natural causes due to other body function loss, many years down the road (dad lived to 91, gramp to 96, it's potentially in the genes ... ).

But there are also other people that are living with cancer, not just those of us (especially those that have posted on the other thread about their cancer) currently undergoing treatment, but caregivers, family and friends that live with the effects of cancer on their lives and demands on their time.

So I've expanded the coverage to include all these people.

Enjoy and 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 2 by RAZD, posted 09-10-2012 7:37 AM RAZD has responded
 Message 57 by mike the wiz, posted 05-11-2014 6:22 AM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


Message 2 of 221 (672978)
09-10-2012 7:37 AM
Reply to: Message 1 by RAZD
09-10-2012 7:31 AM


Latest to the list - onifre
From the other thread, just before closing:

Message 300: Hey RAZD,

So you should be well inoculated eh?

I'm fighting cancer as we speak.

- Oni

Damn onifre. Another one. What kind? What treatments?

Let us know your progress -- we care.

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 1 by RAZD, posted 09-10-2012 7:31 AM RAZD has responded

Replies to this message:
 Message 3 by RAZD, posted 09-10-2012 7:41 AM RAZD has responded
 Message 9 by onifre, posted 09-13-2012 9:25 AM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(1)
Message 3 of 221 (672979)
09-10-2012 7:41 AM
Reply to: Message 2 by RAZD
09-10-2012 7:37 AM


Asgara -- any updates?
Message 271 previous thread: Can I join your cancer survivor's club? I don't have the time/experience you have but I do plan on gaining it.

I was just (two weeks ago) diagnosed with stage IV colon cancer. I've had a colon resection, spent a week in hospital and just today got my Power Port installed. I start chemo next week.

Looking forward to matching you year for year.

Message 295: Great to hear RAZD.

Today was start of my second treatment. My WBC and RBC were low so they reduced my oxaliplatin dose and got permission to get me a shot of Neulasta after my treatment is done. This will help my bone marrow to work a bit harder. Hope I don't get the bone aches they say can come with this shot.

I've had a few small side effects with this treatment. First bite syndrome and some cold sensitivity. All of my issues are due to the oxaliplatin so I'm not unhappy they reduced the dose. I also still off the Avastin as my incision is still not fully closed up on the surface..
Asgara
"I was so much older then, I'm younger than that now"

Curiously I've been humming that tune for a week now, and couldn't figure out why ...

Keep us posted eh?

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 2 by RAZD, posted 09-10-2012 7:37 AM RAZD has responded

Replies to this message:
 Message 4 by RAZD, posted 09-11-2012 5:42 PM RAZD has acknowledged this reply
 Message 5 by Asgara, posted 09-11-2012 9:09 PM RAZD has responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


Message 4 of 221 (672980)
09-11-2012 5:42 PM
Reply to: Message 3 by RAZD
09-10-2012 7:41 AM


update and bump for admin?
Well I just had an interesting time ... my port started leaking blood all down my right side, and a small panic with the nurses and interns over the cause. Seems they were a little over concerned about blood clots and had thinned my blood too much - I was also bleeding back out of a needle location. That is all cleared up now, and I am back on schedule to get out of hospital on Thursday, starting the recovery process at home.

Overall I am in better shape than the last round, having learned how to control some of the side effects to minimize them, and I look forward to seeing how this affects next week as well.

This is the third round of six, and it looks like my biggest concern at this point is not having the last round interfere with voting in November.

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 3 by RAZD, posted 09-10-2012 7:41 AM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


Message 6 of 221 (672982)
09-12-2012 10:33 AM
Reply to: Message 5 by Asgara
09-11-2012 9:09 PM


Re: Asgara -- any updates?
Good to know Asgara,

ps -- what about promoting this? We now have a new member, omnifre, who might like to comment ...

Keep strong and rest when you can. Cat naps at work can do wonders.

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 5 by Asgara, posted 09-11-2012 9:09 PM Asgara has responded

Replies to this message:
 Message 8 by Asgara, posted 09-12-2012 10:45 PM RAZD has acknowledged this reply
 Message 21 by Asgara, posted 09-19-2012 11:21 PM RAZD has responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(3)
Message 31 of 221 (678786)
11-10-2012 11:06 AM
Reply to: Message 10 by hooah212002
09-13-2012 10:50 AM


Hi hooah212002,

I know it's hardly a serious cancer of the type RAZD has, ...

Untreated skin cancer can kill.

... Well, it came back.

So now you need a biopsy to determine if it is cancer.

The good news is that Obama was reelected and so Obamacare is here to stay, and possibly improve.

Message 13: ... I can't decide if I feel like people have a given right to be healthy if it comes at the (financial) expense of others. ...

Universal health care is a social contract issue, imho, because you do not cause your illness, but are a random victim. This is the kind of thing that insurance is supposed to cover, but what makes it a social issue to me is that insurance companies make profits (big ones) off the misery of individuals.

Message 16: It's not because I got a general.

Again, my personal opinion is that veterans should have lifetime government provided health care insurance in return for their service, regardless of reasons for termination.

Enjoy.

Edited by RAZD, : added


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 10 by hooah212002, posted 09-13-2012 10:50 AM hooah212002 has not yet responded

Replies to this message:
 Message 32 by Omnivorous, posted 11-10-2012 11:31 AM RAZD has acknowledged this reply
 Message 34 by Asgara, posted 11-10-2012 11:46 AM RAZD has responded
 Message 35 by CosmicChimp, posted 11-10-2012 11:50 AM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(4)
Message 33 of 221 (678791)
11-10-2012 11:44 AM
Reply to: Message 21 by Asgara
09-19-2012 11:21 PM


Re: Calling RAZD
Hi Asgara,

RAZD, how are you doing, haven't seen you post since this message.

As my brother reports, I am doing well. The chemo has left me weaker than previous sessions, more on the order of when I had the autogenic transplant. It also left me susceptible to the fall colds, which had me in bed for a while. My energy level is low, so I restricted my activities to the simpler things in life.

Here are some pictures:


... the mini as bought (at auction) ... originally built in Italy in 1967, she now has a windshield, and we are working on the clutch and brakes, hoping to have it running by xmas.


... the tandem, "daisy", also as bought (at same auction) -- been able to ride it for ~5 blocks ... with some assistance.


... kayaking on my street during Sandy (and obeying traffic signs): lunar high tide plus 4-6 ft storm surge made out home temporarily waterfront property (no damage fortunately), so I launched directly from my driveway.

Message 26: ... With my clear PET/CT scan pre-chemo and my normal CEA, I am officially NED, No Evidence of Disease. ...

Excellent news, thanks. I am currently NED as well, and just working on recovering my strength and energy.

Enjoy.

Edited by RAZD, : ...

Edited by RAZD, : splng

Edited by RAZD, : pic links


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 21 by Asgara, posted 09-19-2012 11:21 PM Asgara has not yet responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(1)
Message 36 of 221 (678795)
11-10-2012 11:56 AM
Reply to: Message 34 by Asgara
11-10-2012 11:46 AM


Re: Happy To See RAZD
Hi again Asgara

In the news.... new chemo deliver method

Cool stuff.

I was dropped from the study that I had joined when I did not show any positive results and started have lymphodemic swelling in my legs. The large nodes in my groin were radiated and then I started a new program that had me in hospital for a week with 24/7 treatment for 5 days, going back every three weeks. Barely had I recovered from previous sessions before starting the next.

and my hair is now growing back.

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 34 by Asgara, posted 11-10-2012 11:46 AM Asgara has not yet responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(7)
Message 37 of 221 (679411)
11-13-2012 7:31 PM


One that didn't get away ...
from In Memorium

quote:
Longtime EvC Biblical Creationist Buzsaw has died, according to his wife whom I talked with today. He was one day shy of his 77th birthday and had advanced cancer of an unknown type.

Some of the joy of my recovery is now diminished, wishing I could share my fortune with Buz.

Pax vobiscum old friend


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 38 by Rahvin, posted 11-13-2012 7:51 PM RAZD has acknowledged this reply
 Message 39 by Asgara, posted 11-13-2012 8:16 PM RAZD has acknowledged this reply

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(5)
Message 41 of 221 (682147)
11-30-2012 8:28 AM


well said
Hi folks

Love the kayaking ...

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 42 by Asgara, posted 12-22-2012 11:41 AM RAZD has responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(2)
Message 44 of 221 (685444)
12-22-2012 8:32 PM
Reply to: Message 42 by Asgara
12-22-2012 11:41 AM


Re: update
glad to hear it Asgara.

don't worry about looking over your shoulder though to see if it is coming back -- we are much more aware of it now and it's pretty hard to sneak up twice.

I am still slowly getting my energy back. The white hair that came in is slowly being replaced by gray (looks like I need another dye job, as the roots are showing).

Had enough energy to get the new heating system working for the kitchen and diningroom -- radiant floor heat with hot water tubing between the joists in the basement. It is a real pleasure to sit with bare feet on a warm floor while reading a book.

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 42 by Asgara, posted 12-22-2012 11:41 AM Asgara has not yet responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(1)
Message 49 of 221 (719408)
02-13-2014 11:06 PM
Reply to: Message 47 by nwr
02-13-2014 10:53 PM


Re: update
... made it until Dec 2013 until things weren’t looking quite so great ...

Hope that doesn't mean what I think it means.

?


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 47 by nwr, posted 02-13-2014 10:53 PM nwr has acknowledged this reply

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


Message 51 of 221 (726639)
05-10-2014 4:02 PM
Reply to: Message 50 by AdminAsgara
05-10-2014 3:18 PM


♥♥♥
Sounds like good news. I was thinking of you just yesterday and wondering how you were. I'm currently still in remission since last chemo -- going on 18 months now, about the longest I've made it previously before the little buggers came back, so I'm hopin ...

Got the bike out and ready to start another 1000 mile year if all goes well. My bike buddy will be 66 this year, so that will be a good ride.

Is there a chance that if the chemo works real well that you can avoid the surgery? I expect ti will be done with one of those little robotic snaky arm devices to minimize intrusion trauma.

Let us know

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 50 by AdminAsgara, posted 05-10-2014 3:18 PM AdminAsgara has responded

Replies to this message:
 Message 52 by AdminAsgara, posted 05-10-2014 4:10 PM RAZD has responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(2)
Message 53 of 221 (726643)
05-10-2014 4:20 PM
Reply to: Message 52 by AdminAsgara
05-10-2014 4:10 PM


Re: ♥♥♥
Puppy walks a are good.

... but surgeon said he likes to actually feel through the lung tissue ...

hmmm a touchy feely guy eh?

Yep still dancin ... and ya gotta dance like no one is lookin


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 52 by AdminAsgara, posted 05-10-2014 4:10 PM AdminAsgara has not yet responded

  
RAZD
Member
Posts: 19981
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(8)
Message 64 of 221 (744649)
12-13-2014 8:11 PM
Reply to: Message 63 by Asgara
12-13-2014 4:11 PM


Re: General Update
we be the everready bunnies ... they can't get rid of us that easily.


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 63 by Asgara, posted 12-13-2014 4:11 PM Asgara has not yet responded

  
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