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Author Topic:   Living with Cancer (from Cancer Survivors)
RAZD
Member
Posts: 18478
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.8


Message 1 of 133 (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: 18478
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.8


Message 2 of 133 (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: 18478
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.8


(1)
Message 3 of 133 (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: 18478
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.8


Message 4 of 133 (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

  
Asgara
Member
Posts: 1780
From: Wisconsin, USA
Joined: 05-10-2003


(1)
Message 5 of 133 (672981)
09-11-2012 9:09 PM
Reply to: Message 3 by RAZD
09-10-2012 7:41 AM


Re: Asgara -- any updates?
Hi Razd and others,

Glad you started a new thread.

I am doing good. I had my third of 12 treatments last week and side effects are manageable. Some first bite pain cold sensitivity while actively on chemo and for a few days afterwards. Worst effect is the fatigue. I spend my unplug day and the day after (every other Fri and Sat) dozing on the couch9.

Best news is I'm back to work. I came back this past Monday and have had no problems putting in 9 hour days. I am totally ready for jammies and couch by the time I get home

The only reason I'm putting in longer days this week is to help cover some hours next week when I won't be able to work the whole week.

I'm still in the midst of some fear for the future and for my kids but it gets better every day. I believe the doc is going to check my CEA marker again next week, hoping it continues to go down.

~~ Asgara
http://apaininmyass.wordpress.com/

Edited by Asgara, : switch to non admin mode


This message is a reply to:
 Message 3 by RAZD, posted 09-10-2012 7:41 AM RAZD has responded

Replies to this message:
 Message 6 by RAZD, posted 09-12-2012 10:33 AM Asgara has responded

    
RAZD
Member
Posts: 18478
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.8


Message 6 of 133 (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

  
Admin
Director
Posts: 12504
From: EvC Forum
Joined: 06-14-2002
Member Rating: 3.4


Message 7 of 133 (672984)
09-12-2012 8:18 PM


Thread Copied from Proposed New Topics Forum
Thread copied here from the Living with Cancer (from Cancer Survivors) thread in the Proposed New Topics forum.
    
Asgara
Member
Posts: 1780
From: Wisconsin, USA
Joined: 05-10-2003


(1)
Message 8 of 133 (672998)
09-12-2012 10:45 PM
Reply to: Message 6 by RAZD
09-12-2012 10:33 AM


Re: Asgara -- any updates?
LOL, can I blame chemo brain for not noticing it was still in PNT? That does explain why I couldn't initially set it to being written in non-admin mode.

/sigh


Asgara
"I was so much older then, I'm younger than that now"

Save lives! Click here!
Join the World Community Grid with Team EvC!

http://apaininmyass.wordpress.com/


This message is a reply to:
 Message 6 by RAZD, posted 09-12-2012 10:33 AM RAZD has acknowledged this reply

    
onifre
Member (Idle past 365 days)
Posts: 4854
From: Dark Side of the Moon
Joined: 02-20-2008


(3)
Message 9 of 133 (673012)
09-13-2012 9:25 AM
Reply to: Message 2 by RAZD
09-10-2012 7:37 AM


Misunderstanding
Holy shit! I just saw this. I was misunderstood in my post and from that RAZD you've concluded I too have cancer. I'm sincerely sorry for the confusion, let me explain.

I meant that I was, at that moment, smoking pot. Since you made the joke that I was always "inoculating" myself with THC, I found it funny that at the moment I was doing just that. And since THC fights cancer, I made the further joke that I was fighting it since we all carry it in our genetics.

I'd like to sincerely apologize to anyone who may have misunderstood, and to RAZD who so kindly pomoted a thread to lift my spirits had I needed it.

I hope I have not in anyway cause any offense to anyone who is battling cancer. I have lost a great friend to it and both grandfather and grandmother on my mom's side had it, and died from it. My grandfather died at a very young age from it. My mom, to this day, luckily, has not had any signs of it. She is 70 years old.

I'm sure anyone of us has a cancer story they can tell of a loved one who suffered, so I hope the thread continues forward.

Sorry again for the confusion. And to RAZD and the others in the fight, good luck to you.

- Oni


This message is a reply to:
 Message 2 by RAZD, posted 09-10-2012 7:37 AM RAZD has acknowledged this reply

    
hooah212002
Member (Idle past 318 days)
Posts: 3180
Joined: 08-12-2009


Message 10 of 133 (673026)
09-13-2012 10:50 AM


I know it's hardly a serious cancer of the type RAZD has, but I am 99% certain I have skin cancer, but I can't afford to find out for sure, what with not being able to afford insurance and all. I have always had lots of moles and my birth mark on my back is just a giant mole. Well, late last year, I noticed what I think is a new one on my lower back and it had begun to itch. I finally had it looked at by my PCP and he felt the need to freeze it like you would a wart. He told me I need to see a dermatologist, but in the mean time, he said "if it just turns into a reddish/pink spot, it's fine, but if it comes back it's most likely cancerous.". Well, it came back.

"Science is interesting, and if you don't agree you can fuck off." -Dawkins

Replies to this message:
 Message 11 by Panda, posted 09-13-2012 11:34 AM hooah212002 has acknowledged this reply
 Message 12 by Tanypteryx, posted 09-13-2012 12:23 PM hooah212002 has responded
 Message 31 by RAZD, posted 11-10-2012 11:06 AM hooah212002 has not yet responded

    
Panda
Member (Idle past 1127 days)
Posts: 2688
From: UK
Joined: 10-04-2010


(1)
Message 11 of 133 (673033)
09-13-2012 11:34 AM
Reply to: Message 10 by hooah212002
09-13-2012 10:50 AM


hooah212002 writes:

but I can't afford to find out for sure...


I wish I could invite you over here for diagnosis and treatment.

Edited by Panda, : No reason given.


"There is no great invention, from fire to flying, which has not been hailed as an insult to some god." J. B. S. Haldane

This message is a reply to:
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Tanypteryx
Member
Posts: 1465
From: Oregon, USA
Joined: 08-27-2006
Member Rating: 5.1


(1)
Message 12 of 133 (673050)
09-13-2012 12:23 PM
Reply to: Message 10 by hooah212002
09-13-2012 10:50 AM


hooah212002 writes:

I am 99% certain I have skin cancer, but I can't afford to find out for sure

Man, you need to figure a way to scrape the money up and see a dermatologist now. Melanoma is nothing to wait on. Once it metastasizes it is hard to stop, but if you catch it early it is much simpler and cheaper.

Talk to the Dermatologist and work out a payment plan....you cannot afford to wait!!!!


What if Eleanor Roosevelt had wings? -- Monty Python

One important characteristic of a theory is that is has survived repeated attempts to falsify it. Contrary to your understanding, all available evidence confirms it. --Subbie

If evolution is shown to be false, it will be at the hands of things that are true, not made up. --percy


This message is a reply to:
 Message 10 by hooah212002, posted 09-13-2012 10:50 AM hooah212002 has responded

Replies to this message:
 Message 13 by hooah212002, posted 09-13-2012 1:00 PM Tanypteryx has responded

    
hooah212002
Member (Idle past 318 days)
Posts: 3180
Joined: 08-12-2009


Message 13 of 133 (673061)
09-13-2012 1:00 PM
Reply to: Message 12 by Tanypteryx
09-13-2012 12:23 PM


Easier to suggest than to put into action. So far, all the dermatologists I've spoken with want a hefty payment up front. Food, electricity and rent kinda come first. I can't afford to wait, but I can't afford to go either. I just had surgery for something HPV related and very close to turning cancerous, but I had to tell the doc that if I had to pay up front, I couldn't do it, no matter how imperative it was to get it removed. The difference here is that it made my day to day life miserable had I not gotten it done. My potential skin cancer is unnoticeable so far, save for some moles, but they don't bother me. My credit is fucked and I am at the point where it doesn't matter to me how many more medical bills that I have because the ONLY way I'll ever be able to pay them is if I win the lottery.

Judge me if you wish, call me a scumbag for getting a procedure even though I knew I couldn't afford it. It's cognitive dissonance that I can deal with. Do I deserve to get it treated if I can't afford it? Who can say. It's something I wrestle with daily. 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. Does the doctor get paid anyways? Like I said, I wrestle with this internally every time I feel like I need/should go see a doctor. For example: I fucked my hand up one time last year and only went to the doctor after it continued to hurt for like 3 months. Turns out I broke the bone between my wrist and pinky finger. I didn't feel like I deserved to be treated since I couldn't afford it.


"Science is interesting, and if you don't agree you can fuck off." -Dawkins

This message is a reply to:
 Message 12 by Tanypteryx, posted 09-13-2012 12:23 PM Tanypteryx has responded

Replies to this message:
 Message 14 by Tanypteryx, posted 09-13-2012 1:50 PM hooah212002 has acknowledged this reply
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Tanypteryx
Member
Posts: 1465
From: Oregon, USA
Joined: 08-27-2006
Member Rating: 5.1


(5)
Message 14 of 133 (673065)
09-13-2012 1:50 PM
Reply to: Message 13 by hooah212002
09-13-2012 1:00 PM


I'm really sorry for your situation. You do deserve to be treated as every single citizen in this country deserves health care. It is such an obvious and important right, easily as important as national defense.

The scumbags are the polititions who claim to be compassionate but refuse to provide health care for everyone. They don't deserve to be Americans!


What if Eleanor Roosevelt had wings? -- Monty Python

One important characteristic of a theory is that is has survived repeated attempts to falsify it. Contrary to your understanding, all available evidence confirms it. --Subbie

If evolution is shown to be false, it will be at the hands of things that are true, not made up. --percy


This message is a reply to:
 Message 13 by hooah212002, posted 09-13-2012 1:00 PM hooah212002 has acknowledged this reply

    
purpledawn
Member (Idle past 871 days)
Posts: 4453
From: Indiana
Joined: 04-25-2004


(1)
Message 15 of 133 (673122)
09-14-2012 5:30 AM
Reply to: Message 13 by hooah212002
09-13-2012 1:00 PM


Veterans Hospital
I thought you had mentioned serving in the military. If you were honorably discharged, you can go to a Veterans Hospital for medical care.

My sister and I used them when we didn't have insurance and my father used them when he was battling Non-Hodgkins lymphoma without insurance.

Sister was Army and Dad and I were USMC.

Hopefully that is an option for you.


This message is a reply to:
 Message 13 by hooah212002, posted 09-13-2012 1:00 PM hooah212002 has responded

Replies to this message:
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