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Author Topic:   Living with Cancer (from Cancer Survivors)
Asgara
Member
Posts: 1779
From: Wisconsin, USA
Joined: 05-10-2003


(5)
Message 121 of 133 (758081)
05-19-2015 10:36 AM


incredible
Wow! I don't even know what to say. Any way I could conceivably say thanks will never be enough, but I will say it... THANK YOU ALL!

I've been here in one form or another for 12 years. I've seen posters come and go. I've seen them pitch a tent in the corner and settle in for the long haul. This group has been like family.

I'm currently sitting at another crossroads in my cancer journey. I'm in recovery from my second thoracotomy in less than a year. I'm due to start my third group of chemo treatments on the 1st of June.

I was at my one month post-op follow up at Mayo last week and got some not great news. I now have several good sized mets in my peritoneal cavity. The team at Mayo is now saying that the plan has changed from hitting this aggressively with chemo and surgery in an attempt to get rid of it... to taking it softer with chemo hoping for maintenance...a balancing act between keeping the cancer at bay and not wearing me out with the chemo.

I see my local team tomorrow to discuss options and make a plan. The nurses there say that Mayo doesn't know me and they do. They know what I can handle and how hard I fight. My favorite nurse insists that they will get me through this.

So, If anyone is interested I'll update when I know more.

Oh, Perdition didn't mention this but one of the life events that keep him a lurker now is my almost 3 year old first grandchild, Moira. She is plenty reason enough for this Gaga to stick around.

Love you all!
~~Asgara

Edited by Asgara, : typo


Replies to this message:
 Message 122 by NoNukes, posted 05-19-2015 10:56 AM Asgara has not yet responded
 Message 123 by Phat, posted 05-19-2015 11:56 AM Asgara has not yet responded

    
NoNukes
Member
Posts: 9529
From: Central NC USA
Joined: 08-13-2010
Member Rating: 3.2


(1)
Message 122 of 133 (758082)
05-19-2015 10:56 AM
Reply to: Message 121 by Asgara
05-19-2015 10:36 AM


Re: incredible
Of course we want updates!

I just learned that you and your son both post here. Just how cool is that!!


Je Suis Charlie

Under a government which imprisons any unjustly, the true place for a just man is also in prison. Thoreau: Civil Disobedience (1846)

If there is no struggle, there is no progress. Those who profess to favor freedom, and deprecate agitation, are men who want crops without plowing up the ground, they want rain without thunder and lightning. Frederick Douglass

The only thing I suggest is that genes died as a result of all those people and animals dying in the Flood, whose traits were lost to the species and therefore the alleles for those traits, so the genes just died and remain in the genome as corpses. Faith


This message is a reply to:
 Message 121 by Asgara, posted 05-19-2015 10:36 AM Asgara has not yet responded

    
Phat
Member
Posts: 9307
From: Denver,Colorado USA
Joined: 12-30-2003
Member Rating: 2.6


Message 123 of 133 (758086)
05-19-2015 11:56 AM
Reply to: Message 121 by Asgara
05-19-2015 10:36 AM


Re: incredible
Thanks to you for being alive and part of our extended family as well. I cannot imagine how it is to battle cancer. My father left us at age 59 when I was but 17 years old. He lives on in my thoughts and memories---and my faith promises me that he is still alive in one form or another.
Asgara writes:

I've been here in one form or another for 12 years.

Indeed you have. I have seen your name up on that list even though rarely hearing from you. Family is like that. We often take each other for granted, but we do cherish the presence of one another in this life and, hopefully for all eternity. Though our hope lives on eternally through our children, grandchildren, and extended family, we each have hope for ourselves, our legacy and purpose in the life we live now. So...to get personal if i may, what is it within you that causes you to fight, even when you are weary and longing for sleep and inner peace? Is it more than family and extended family?
I'm currently sitting at another crossroads in my cancer journey.
Do you see it as a cancer journey or do you see it as an overall journey that transcends cancer, pain, and struggle....I was never really impressed to bring you up in my prayers until now...after seeing your sweet picture and realizing just how alive and valuable you are!

Any way I could conceivably say thanks will never be enough, but I will say it... THANK YOU ALL!
It is we who also thank you! Thank you for being alive! Thank you for being among us...we also thank the amazing people who care for you professionally and who also live their lives to the fullest and the utmost. You represent the triumph of life...you represent hope...and I am grateful to be able to talk with you---even on an anonymous internet...which suddenly seems more personal than it has been previously.

add by edit: I am off work today...watching movies...I just watched Lincoln with Danial day Lewis...it was a well done flick. Also bought Cowboys & Aliens...an odd one but I love watching actors and actresses celebrate human life through their craft and art!

Edited by Phat, : No reason given.


Saying, "I don't know," is the same as saying, "Maybe."~ZombieRingo
It's easy to see the speck in somebody else's ideas - unless it's blocked by the beam in your own.~Ringo
If a savage stops believing in his wooden god, it does not mean that there is no God only that God is not wooden.(Leo Tolstoy)

This message is a reply to:
 Message 121 by Asgara, posted 05-19-2015 10:36 AM Asgara has not yet responded

  
Theodoric
Member
Posts: 5765
From: Northwest, WI, USA
Joined: 08-15-2005
Member Rating: 3.5


Message 124 of 133 (758116)
05-19-2015 6:21 PM
Reply to: Message 119 by NosyNed
05-18-2015 11:38 PM


Re: No PayPal
Well then get an address from Perdition and send a check. Or find out if either he or Asqara have a paypal account and send money that way.

Edited by Theodoric, : No reason given.

Edited by Theodoric, : No reason given.


Facts don't lie or have an agenda. Facts are just facts

"God did it" is not an argument. It is an excuse for intellectual laziness.


This message is a reply to:
 Message 119 by NosyNed, posted 05-18-2015 11:38 PM NosyNed has not yet responded

    
Asgara
Member
Posts: 1779
From: Wisconsin, USA
Joined: 05-10-2003


(5)
Message 125 of 133 (758526)
05-27-2015 11:40 PM


update
Ok, just going to copy my last Facebook post. Easier than composing a new message. Facebook friends, feel free to ignore this.

Many of you know that I was back at Mayo the beginning of May for my 30 day post-op appointment. The news I got was not what I was expecting or what I wanted to hear.

The plan had been to go back on chemo then probably zap the two remaining lung mets with radio frequency ablation, finish out the chemo and then see what happens.

What I was told instead is that there are now several tumors in my abdominal cavity, what are called peritoneal mets. They aren't part of an organ per se but are attached to the peritoneum; the 'sack' that holds the abdominal organs. These tumors did not show up in scans the end of January.

Plan has warped from "hit it hard and aggressive with chemo and surgery to try and clear it all out' to 'go softer and just try and maintain status or hope for some shrinkage with chemo.'

I do have an appointment with my original surgeon this Friday just to see if he has any opinion on my future course. The surgeon does offer a very intense form of surgery/chemo combo that you used to have to travel to the big names to even discuss. Unfortunately, right now, I am not eligible for this surgery as I still have involvement elsewhere, namely the lungs. This could change in the future and it is nice to know that option is available locally from a surgeon I know and trust.

As it stands right now, I start back on the original chemo again on Monday the 1st. If we see that this chemo works on my tumors we'll stay on this while carefully monitoring the neuropathy that is a side effect. I still have issues with my feet from the chemo 2 and a half years ago. I do not want it permanently in my hands too. If the side effects get too hard we will take off the heavy hitter in the chemo cocktail and I will try just going on maintenance chemo and see if it continues to work.

Fortunately, I am still on first line chemo for colon cancer and there are still several other options waiting for me if needed. Believe me also, I am keeping a close eye on trials coming down the road. Keeping a VERY close eye on the vaccine we got from Cuba. Roswell Park in NY is starting work on it. The hope is that it can be fast tracked through trials as there are many years of records that came with it from Cuba.


Replies to this message:
 Message 126 by GDR, posted 05-29-2015 12:18 AM Asgara has not yet responded
 Message 127 by RAZD, posted 05-29-2015 10:55 AM Asgara has not yet responded

    
GDR
Member
Posts: 4240
From: Sidney, BC, Canada
Joined: 05-22-2005


(3)
Message 126 of 133 (758597)
05-29-2015 12:18 AM
Reply to: Message 125 by Asgara
05-27-2015 11:40 PM


Re: update
Hi Asgara

I'm so sorry to hear that the result was not what you hoped for. Where I live in Victoria there is a world class cancer centre. They also have a program called POG which is a last ditch effort to get rid of cancer.

It might be worth looking into for you.

Here is a link.

Personalized Onco-Genomics

All the best in your journey.

Greg


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 125 by Asgara, posted 05-27-2015 11:40 PM Asgara has not yet responded

    
RAZD
Member
Posts: 18453
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


Message 127 of 133 (758602)
05-29-2015 10:55 AM
Reply to: Message 125 by Asgara
05-27-2015 11:40 PM


Re: update
... Keeping a VERY close eye on the vaccine we got from Cuba. Roswell Park in NY is starting work on it. The hope is that it can be fast tracked through trials as there are many years of records that came with it from Cuba.

As I said on facebook, there is the option of taking a vaccine vacation to cuba.

You should also look into the (non-halucinogenic) oils from canabis in shrinking tumors.

And I'm sure you have heard more than enough about diet ... but stay away from sugars (they feed tumors) and sugar precursors (starches).


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 125 by Asgara, posted 05-27-2015 11:40 PM Asgara has not yet responded

Replies to this message:
 Message 128 by AZPaul3, posted 05-30-2015 10:43 PM RAZD has responded

  
AZPaul3
Member
Posts: 3427
From: Phoenix
Joined: 11-06-2006
Member Rating: 7.4


Message 128 of 133 (758689)
05-30-2015 10:43 PM
Reply to: Message 127 by RAZD
05-29-2015 10:55 AM


Re: update
(non-halucinogenic) oils from canabis

Isn't that like what Dave Letterman called decaf coffee; useless warm brown water?

And speaking of updates, how getting on, Big Guy?


This message is a reply to:
 Message 127 by RAZD, posted 05-29-2015 10:55 AM RAZD has responded

Replies to this message:
 Message 129 by RAZD, posted 05-31-2015 3:35 PM AZPaul3 has acknowledged this reply

  
RAZD
Member
Posts: 18453
From: the other end of the sidewalk
Joined: 03-14-2004
Member Rating: 3.9


(9)
Message 129 of 133 (758722)
05-31-2015 3:35 PM
Reply to: Message 128 by AZPaul3
05-30-2015 10:43 PM


Re: update
And speaking of updates, how getting on, Big Guy?

My cancer is still in remission -- over 3 years now, so that is good.

But my energy is low, and I have had trouble with allergies this year. Didn't used to have allergies, but my rebuilt immune system thinks they are enemies now.

Hope to get the outside of the house done this summer and get my 67 mini on the road.

Being retired helps.

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 128 by AZPaul3, posted 05-30-2015 10:43 PM AZPaul3 has acknowledged this reply

  
Asgara
Member
Posts: 1779
From: Wisconsin, USA
Joined: 05-10-2003


(13)
Message 130 of 133 (787373)
07-11-2016 6:37 PM


Thought I'd give you all an update.

I have been on chemo since I healed up from last thoracotomy last April. Chemo was hitting me very hard before Oct of last year. I was too fatigued to even drive so my posse took care of me. . Had one point I was just begging them to put me in hospital and let me sleep it out.

I had a long break over the holidays and felt well enough to take a road trip with Perdition, his wife, and my fabulous granddaughter Moira.

Started back on the chemo after Xmas and have been doing much better. I had a CT scan in March and then just last week. I'm just copying my FB post here....

...scan came back good.... a couple of little nodules on right lung are a tiny bit bigger... small nodules on left lung are unchanged but the peritoneal nodules have all decreased...
a 15 mm that used to be 18.....
an 18 that used to be 29......
a 16 that used to be 20....
a 13 that used to be 17.....
and a 15 that used to be 24.
blood work is starting to get to the stage where I might be skipping some chemos and I will be getting Neulasta on wed. I'll find out then if my CEA is still coming down.... Chemo is starting to catch up to me again so, again, might be having some breaks.

Any questions feel free to ask. Feel free to friend me on FB too... just pm me so I know who it is. https://www.facebook.com/gayla.ross


Replies to this message:
 Message 131 by GDR, posted 07-12-2016 4:01 PM Asgara has not yet responded
 Message 132 by Minnemooseus, posted 07-16-2016 5:27 AM Asgara has not yet responded

    
GDR
Member
Posts: 4240
From: Sidney, BC, Canada
Joined: 05-22-2005


(9)
Message 131 of 133 (787407)
07-12-2016 4:01 PM
Reply to: Message 130 by Asgara
07-11-2016 6:37 PM


That's great Asgara. Mine has gone well as well. The type of cancer I had, (olfactory neuroblastoma), often recurs I have been ok so far. I had the surgery in May 2015 and finished radiation Jult 2015. (No chemo.)

The 10 hr surgery I had with both an ENT surgeon and a neurosurgeon went really well and the margins were negative. I have had 2 MRI's since then and they have both shown clear. I continue to see the ENT surgeon every 3 months and that will likley go on indefinitely.

With all of the renovation done in my sinuses and in the cribriform plate below the brain I have not had many issues.

The radiation brought on some problems of which most have cleared up, but I still need surgery for a Zenker's Diverticulitum which will happen some time later this year which was likely caused indirectly by the radiation.

However life is really good and it is better to be looking down at the grass than up at the roots.

The future for cancer treatment keeps looking brighter all the time so I think we can still make 100 eh.


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 130 by Asgara, posted 07-11-2016 6:37 PM Asgara has not yet responded

    
Minnemooseus
Member
Posts: 3500
From: Duluth, Minnesota, U.S. (West end of Lake Superior)
Joined: 11-11-2001
Member Rating: 3.7


(1)
Message 132 of 133 (787506)
07-16-2016 5:27 AM
Reply to: Message 130 by Asgara
07-11-2016 6:37 PM


Wonderful news, and there's also that member rating growth side effect
Congratulations in both areas.

Moose


This message is a reply to:
 Message 130 by Asgara, posted 07-11-2016 6:37 PM Asgara has not yet responded

    
anglagard
Member
Posts: 2158
From: Big Spring, TX, USA
Joined: 03-18-2006


(5)
Message 133 of 133 (787524)
07-16-2016 5:01 PM


Simply Happy
To Asgara, RAZD, and GDR, I am so glad for the good news. You may not realize just how important our conversations are to me, for I live in a desert, both literally and intellectually.

Even though we have never met, I consider you my friends.

Edited by anglagard, : better grammar


Read not to contradict and confute, not to believe and take for granted, not to find talk and discourse, but to weigh and consider. - Francis Bacon

    
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