Beating Cancer

“I think about you guys often and hope that you will find some peace today.”

“Thanks for the good wishes.

Matahari, I'm glad to hear you are feeling better in the hospital and getting the care you need. I hope they can get your feeding tube installed soon and you have a speedy recovery.

What I'm hoping to accomplish is the elimination or at least shrinkage of two cancerous nodules in my right lung. It isn't lung cancer because it came from my throat and spread to my lung either in 2006 or 2007, so technically what I have is metastatic throat cancer that spread to my lung. Squamous cell cancer to be exact. I had 4 nodules total and two were removed last summer. Two small ones that the surgeon couldn't find because at that time were about 4mm in diameter are the ones there now. On my last CT scan in Feb. the smaller nodule on my lower right lung wasn't seen by the reviewer so I don't know if it's still there or he just didn't see it. The upper one was about half the size of a walnut, still not very big. Anyway, yesterday I just finished my 31st Erbitux treatment and 12th Taxol treatment. I get one treatment per week so this has been going on since last October. For each infusion, I get Benadryl first, Eribitux, Aloxi and Cemetedine (anti-nausea drugs), Decedron(a steroid), and then the Taxol chemotherapy drug. It takes about 5 hours to do all this so I'm there for a good part of the day and it can get boring. The Erbitux can go on indefinitely if it's working since it a monoclonal antibody not chemotherapy, but it has some nasty side effects in the form of cracking, dry skin and an acne like rash that can show up just about anywhere and does, mostly on the face, torso and legs on me. It does other things too that aren't too nice. The Decedron has some weird side effects too mostly insomnia and acid reflux. I had an access port installed in my chest last winter because with all the needle sticks I didn't have any good veins left in my hands or arms. The nurses were having to stick me several times just to get a line started. The port makes things easier for me and everyone else. I had the surgeon put it in an area where a backpack shoulder strap wouldn't contact it.

The Taxol at the higher dose I'm getting now combined with the side effects of the Erbitux is harsh. Once the steroid wears off the bleeding begins mostly by Saturday morning. My airway starts bleeding and I cough up blood at least through the weekend, although this week it lingered into Monday. Wounds start opening up mostly on my face, lips, head, inside my mouth and inside and outside of my nose so that bleeds too. They can appear anywhere and have. While that bleeding is uncomfortable and messy, I'm not too thrilled about the bleeding in my airway because I can't always see where it's coming from. I check it with a flashlight and it'll drip from my trachea into my lungs and eventually stop, but sometimes it'll bleed down deeper where I can't see. At least my platelet count is high enough that it clots fast enough. Besides the sores inside my mouth and on my tongue that makes eating painful, I've spit up pieces of flesh that have peeled off somewhere inside my throat or maybe on the tongue base. I can't always see where they come from. Before I had my esophagus dilation, they'd all get stuck in my throat because I didn't have much room in there. That's how I found out this was going on. Now since I have some more room I probably just swallow them and don't know it and just the bigger pieces get stuck. The chemo therapy causes a breakdown of the tissues. I'm not too worried about it as long as it doesn't cause a fistula in my throat like it did last fall and blows a hole in my neck.

Besides all that, the other side effects are fatigue, aches and pains in the joints, dizziness, numbness, dry eyes, dry skin and just general malaise. I feel sick about every day from toxicity building up. My hair has started falling out last week. Next week, I'm think I'll be taking a break for one week to recover a bit and then resume a week later for my last 4 Taxol treatments. I'm just hoping it works after going through this. There's no way of knowing until I get another chest CT scan 5 weeks from now. I'll have some decisions to make by late June. If any nodules are still there or worse new ones developed, there will still be options, but I don't think it'll be a choice I'm going to like.”

“Praying for you RichB, praying hard.”

“Me too. Also praying that soon there will be a cancer treatment that isn't so barbaric. Or better yet, a cure.
I wish you two lived closer. I'd come and visit .”

“:(
you are so brave....
hugs & prayers...”

“Matahari, thanks for firing up the thread. You are in my thoughts and prayers. You've been such a good supporter of the folks who have come here to discuss their struggles and losses. I'll be watching this thread for news, hoping and praying it is good.”

“Rich. It really does svck that you have to go through this. You are an amazing guy with awesome courage and have been such a positive person as far as I've ever seen. If there was justice in this world, this would all go away and you'd have decades of good health and lots of time on the trails.

You're in my thoughts and prayers. I'll be saying a special prayer for you each time I'm in the mountains.”

“Rich and Matahari, my thoughts are with you and the other TTers fighting this battle. I haven't been to the board in some time and reading of your situations comes on the heels of having lost a very dear friend of my wife to cancer just a few days ago. Hang tough and know your TT family, even those of us who don't call or visit much, are hanging in there with you.
last edited: 5/15/08 9:42:31 AM”

“Cancer sucks. I hope and pray that things get better for both of you.”

“Prayers and compassion for all. I have been going down this Breast Cancer Road holding the hand of my youngest daughter for the last year and have not been allowing myself to stay in touch, here. It was naive of me on my understanding of the amount of people that Cancer has touched. Everyday I see another new face at Sarah Cannon Cancer Center and that causes me to pray that much harder. I have crossed several lines with my immediate family...you know the tough love kinda thing.. no pity ,200 percent positive energy and outlook on life...WE CAN BEAT THIS ... ransacking the private domain and challenging the amount of narcotics (usage) to just get by. Not letting her give up, nor become a zombie in the process ... there is light at the end of the road and our journey has reminded me of the hell of my own youth. . It is not entirely an enemy that I can fight alone. I wish those here peace and good health.”

“you are in my prayers. all of ya. we alll need prayer.”

“I'll be riding again, and each time I ride for RichB, Matahari, Bearmagnet, Le Subtil...
This year I am going to Austin, and have formed team LIVESTRONG Cy-anon (Cyclists Anonymous myspace profile)

Join Team LIVESTRONG Cy-Anon!:
http://austin08.livestrong.org/livestrong_cy_anon

Donate to the Lance Armstrong Foundation here: http://austin08.livestrong.org/pathman


Pick a Fight: Do the LIVESTRONG Challenge
Cancer is defiant. So we're going to defy it. It's persistent. So we have to persevere. It's discouraging. So we must have courage. We are the LIVESTRONG Challenge - uniting people to pick a fight with cancer and to stand up for the nearly 12 million Americans living with cancer today.

Cancer doesn't discriminate, and neither do we. Whether you walk, run, ride, volunteer or donate, your participation is one more powerful weapon in the crucial fight against cancer.”

“Rock on, Pathman!”

“Ride like the wind Pathman...”

“I appreciate both the thought and the effort...makes me feel all warm and fuzzy...nice!”

“Your dedication to this is great Pathman.

Here's to the memory of Bearmagnet. May Rich, Matahari and Le subtil live strong and live long.”

“Awesome Pathman, I really appreciate the effort, thanks!”

“I second what Ped said!!!”

“I don't have much info but RichB is in the hospital...there's a thread over on Latta about him...increase your prayers, folks...”

“Amen.”

“Will do.”

“Thanks for the heads up Matahari.”

“Posted by: twigeater
Date: June 18, 2008 10:18AM

He has a staph infection in his blood. He had blood transfusions last night, and an injection to boost his red blood cell production. His count was very low, around 8 I think he said.
Unfortunately, the chemo hasn't eliminated all the nodules in his lungs.”

“...prayers & hugs for RichB......”

“Here's wishing RichB the best.”

“RichB - I'm praying and pulling for you.”

“Sending lots of good thoughts your way, RichB.”

“Postive vibes for Rich B.

Another one of the great people I met at Masten.”

“Lots of prayers & hugs!!!!”

“

Trail Talk Volunteer to Raise Funds for the Lance Armstrong Foundation LIVESTRONG® Challenge Austin

Pathman Joins Lance Armstrong Foundation to Pick a Fight with Cancer

WHAT: LIVESTRONG Challenge 2008: Run/Walk/Ride Austin, TX - October 25-26

WHO: YOU! Austin, Philly or San Jose. RUN/WALK/RIDE. JUST DO IT!
ME: I’m going to Austin to ride 90 miles!
Support Me:
http://austin08.livestrong.org/pathman
Join Team “LIVESTRONG Cy-Anon” in Austin!:
http://austin08.livestrong.org/livestrong_cy_anon


Why: I am a pathologist and I see cancer at work every day. I am touched by cancer when it touches my friends and family. LIVESTRONG Challenge reminds me why I am dedicated to pathology and inspires me through the strength and hope of Cancer Survivors. This will be my fourth LIVESTRONG event! Austin is the home of LIVESTRONG!

Cancer is revolting. So we’re going to revolt. It’s defiant. So we’re going to defy it. It’s destructive. So we’re going to destroy it. We are the LIVESTRONG Challenge - uniting people to pick a fight with cancer and to stand up for the nearly 12 million Americans whose lives it affects. Go ahead. Pick a fight.

The LIVESTRONG Challenge is the Lance Armstrong Foundation's signature fundraising event, taking place in cities across the country to unite people to fight cancer. In 2008 the LIVESTRONG Challenge will take place in:
• Portland, OR – June 29 (Raised over $1 million)
• San Jose, CA – July 13
• Philadelphia, PA - August 24
• Austin, TX - October 25-26

Funds raised through the LIVESTRONG Challenge support the Lance Armstrong Foundation. Through the dollars and awareness that we raise, we inspire and empower individuals, and we make life better for the more than 12 million Americans affected by cancer. Since its inception, the LIVESTRONG Challenge has raised more than $40 million for the Lance Armstrong Foundation’s fight against cancer.


About the Lance Armstrong Foundation
The Lance Armstrong Foundation (LAF) unites people through programs and experiences to empower cancer survivors to live life on their own terms and to raise awareness and funds for the fight against cancer. The LAF focuses on cancer prevention, access to screening and care, research and quality of life for cancer survivors. Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the LAF has raised more than $250 million for the fight against cancer. Join 60 million LIVESTRONG wristband wearers and help make cancer a national priority. Unite and fight cancer at www.LIVESTRONG.org .

To register or to learn more about the 2007 LIVESTRONG Challenge, call 888.4.CHALLENGE (888.424.2553) or visit www.livestrongchallenge.org.

For additional information, contact: Pathman at pathman@schaffnerfamily.com

”

“my heart has been beating over 170 for almost a day now...they're calling in a cardiologist...

Pet scan showed two glowing places...throat and liver...here is my take on those...

I thought I'd clarify how I look at the results from the PET scan. This hospital has no knowledge of my past history and I, obviously, do. They also do not seem to hear things I tell them, as is the way of doctors everywhere...especially young, know best, ones.

First, let's talk about the "mass" in my neck. I will give you my take on the situation.

This "mass" showed up overnight, about a week to 10 days after all the problems with the feeding tube. Naturally, I assumed they had nicked my esophagus and I had an inflammation. After all, cancer doesn't appear overnight then stop growing. The inflammation never really changed size but my breathing became harder and harder over time. I know know it is because the inflammation pressed on a nerve which stopped the left vocal chord from operating making breathing difficult.



They cannot get a proper biopsy of the inflammation because of it's position in the neck...lots of very important blood vessels around there. It lit up on the PET scan because, being inflamed, it is active and metabolizes glucose faster than the surrounding tissues. That was expected.

What concerned them here were the spots or spot, on my liver. The docs here feel what they believe to be cancer in my neck metabolized to my liver. I know my past history. Spots showed up at Mayo a few years ago and caused concern. They didn't biopsy them but did something with ultra-sound and determined that the odds of it being cancer were small if not non-existent. I believe these are the same spots concerning the docs here and do not feel the necessity for a biopsy. Besides, as I've mentioned to you before, I would not do chemo or radiation again...I just don't have the strength.

So, I do not feel I have cancer...I think that I have a lot of issues, gaining weight, getting used to trach, things like that...cancer is just not in my agenda...

Meanwhile, I'm feeling OK...room faces a brick wall...TV channels are terrible, nurses are nice, doctors trying to do their best by me...it could be worse...

I can talk with the insert but I've been told it's very hard to understand over the phone, The insert I use to talk also limits my air which I don't like so I don't leave it in for a long time...I try and use it more and more each day to get used to it. I get light headed with it right now.

now they're going to shock my heart...first they'll try medication...if that doesn't work it's into the OR at 3pm...it never ends....”

“mata, thanks so much for the update. please let me know if there is anything i can do... a hollow offer but there it is. you are very dear to many of us on tt and we all care a great deal about your health and well being. i know you are in the thoughts and prayers of a great many people who wish you a speedy recovery.”

“could not have said it better! anything you need, let us know.

good vibes coming your way!”

“Big hugs to you Mata. Keep in touch with us. Get well soon.”

“If you aren't satisfied with the doctors there consider going to Mayo if you can. The University of Minnesota has an excellent Head and Neck program too.
last edited: 7/09/08 9:55:05 AM”

“Well, since the heart has been racing for over 24 hours I thought it time to find the root cause of the problem. Just finished talking to the cardiologist...what I have is atrial flutter...this is the easier to fix problem with a much higher success rate to permanently solve the problem than if I had atrail fillibration....

the procedure is called ablation and is done in the OR(3pm today) ...it is a bit like an angiogram only you don't use a probe. A wire is inserted into the groin and threaded up to the heart...it produces a temperature off 55C...not hot enough to be called cauterization but it still operates kinda the same way...I haven't looked it up online yet but am trying to remember what the doctor said. By the way, he is very nice, born in Shanghai, studied and worked at Mayo and has performed this operation over 3,000 times in the last 15 years he has been here. Regions is known for their excellent heart care. Anyway, this operation should permanently fix the problem...that would be nice...it's hard on the heart...the top chamber does not really beat but flutters...if my heartrate is 170, the top chamber flutters at a speed of 340....tough on the ole heart muscle...I had hoped not to add that to my ongoing medical list but it was not to be...just as well, get it fixed while I'm here..

Mayo is not in the network...our company changed providers this year which is why I am here and not down at Mayo....
last edited: 7/09/08 10:09:52 AM”

“Dittos to yogi.

I hope the ablation goes great and you recover well. You are in my thoughts and prayers.”

“Glad they found out the problem and can fix it. I hope it all goes well.”

“mataharihiker - I sure love your attitude!”

“just talked to the oncologist...seems some glands in the lymph system also lit up in the PET scan...I will talk more to him tomorrow...I've got enough to deal with on my plate today...#&%!$ty news...”

“I'm sorry mata - you get well soon!”

“Give 'em hell, Mata ----”

“i was going to say that if you get better soon i'll give you my down inner jacket as a reward to match those pants of yours that i covet... then i realized:

1. you have one already
2. it would fit you like a tent
3. it has holes in it from fire sparks
4. it stinks (badly)

i know... i'll make you a titanium poop shovel! Excalibur II ... :)

FEEL BETTER! that's an order. :)”

“Lots of prayers...good wishes & hugs for ya Mata...you are such an inspiration to all of us!!!!!!”

“Love ya Mata....I agree with Tilt....


KICK BUTT Girlie!!!!”

“heart op went well...one thing down....”

“GO MATA!”

“Glad to hear the heart operation went well. I hope the oncologist has some treatment options that will work.”

“The oncologist suggested, if it WAS cancer, that we use Erbitux. He says this is not chemo, does not affect the red blood cells and can be done at my local hospital.

Anyone know anything about this drug?”

“Cetuximab (marketed under the name Erbitux) costs $30,000 for eight weeks of treatment per patient.
http://en.wikipedia.org/wiki/Cetuximab”