Beating Cancer

“Hey Bear - kudos to you, Leukemia/Lymphoma Society and SEIU.

Thanks for asking about me: I had more blood drawn and some Chest XRays done (I was due anyways since that's #1 target for metastasis and I am supposed to have them regularly for life). I wait to hear for a week to 10 days. I did get to see the Labs. The combination of high Calcium and high PTH (Parathyroid hormone) would be the most ominous news. What I had was high PTH (out of the normal range) and Calcium smack in the middle. PTH works to get more calcium in the blood... so, there is still some worry that there is some out of control Parathyroid tissue (either Metastasis or one of my remaining glands going bad). Since high calcium levels are supposed to shut off the PTH - even calcium levels in the high normal range would have scared the crap out of me. As it is, there is lots of reason to worry - but also plenty reason to hope.

Full results are supposed to be back within about 10 days.”

“Ped, I hope (and pray) good news is heading your way!!”

“What I believe to be true about cancer....unless you can cut it out it will probably always return in some form at sometime...maybe take 20 years or more but it will come back. Treatments, when they are successfull, kill developed cancer cells..the immature ones aren't affected unless they are able to be physically removed...and, as yet, they are undetectable...there is no medical proof to this..it's just what my body tells me...that didn't stop me from taking chemo and radiation and I don't regret my decision...it was an interesting trip...

I truly wish all presently suffering through the medical labyrinth strength...you'll be surprised at what you can do, what you'll be able to put up with and how wonderful the backpacking world is in regards to a support system...truly, you guys ROCK!”

“Waiting for results sucks so bad. Good luck! can you drink for 10 days?

Matahar - My lymphoma, like most, is caused by a single cell line gone bad. It's lost it's Growth Inhibition and Mortality. If I can recall my molecular bio studies correctly - There are no immature cells. The line was produced in the bone marrow but matured in the lymphatic system. No more development going on for that line. Chemo is administered for an extended period of time and in excess. Kind of like a "normal" antibiotic.”

“looking at a case under the scope now. widespread ovarian cancer, after chemo, chemo KICKED ASS!”

“glad to hear it, bearmagnet...squamous cell cancer is more insidious although less deadly..I think I had level IV and yes, Chemo kicks ass! As my docs in Mayo said, we come close to killing you hoping you live and the cancer dies..in my case, it worked , so far...

My chemo was introduced in an experimental fashion...I had catheters inserted simultaneously through the femorial arteries on both sides of my groin and pushed up to my neck...they then injected enough chemo to kill me while, at the same time, injecting a neutralizer into the big vein in my elbow so I wouldn't die and the chemo would not travel throughout the body...they wanted it focused on the throat..they did this 3 times over a period of 4 weeks while I received radiation daily for a month then twice a day for 2 weeks....

There were 20 patients in this study which was closed as 2 died. A 10% failure rate in unacceptable in proposed treatment when, if they just cut out the tumor, no one usually dies...in my case my tongue, larnyx and part of my esophagous would have been removed. I would have spent the rest of my life eating and breathing through tubes and lost my voice...

Like I told the docs, that sure as hell would put a crimp in backpacking and no one who's met me can imagine me not talking...

Yep, Chemo rocks...”

“Matahari, that's awesome that the treatment worked and that you were able to keep your larnyx intact.

Cancer destroyed too much of my larnyx and spread into the lymph nodes and muscles in my neck so I lost half of my larnyx, the left side of my throat and part of my neck. At least they were able to preserve my voice. It's not the same voice it was, but it's better than nothing.”

“Having half a voice is better than no voice at all, for sure...for reasons no one knows, one side of my vocal chords shut down a couple years after treatment and I can no longer speak loudly or, more unhappily, sing...I miss it as I've been singing and playing the guitar since I was 12...almost 47 years...I also can no longer cry for help as I would not be heard by anyone 20 feet away...I carry a whistle now...LOL...you sound like you also went through the wringer, RichB...did you lose your saliva glands like I did...that was, and is, the hardest thing I've had to deal with and it's a permanent loss...”

“Well, put it this way, I won't be singing in the opera anytime soon. My voice has a time limit on how much I can use it and it isn't getting better with time, but getting worse. Same here with the saliva glands and I don't have much saliva production at all from radiation damage. Swallowing is difficult and between a dry mouth and missing structures it's not easy trying to keep food and water out of my lungs. If creeps into the lungs it causes big problems. I had a drug infused everyday before radiation treatments that was developed for the military to protect soldiers from radiation exposure. It's called Amifostine and was supposed to help with the side effects from radiation. I don't know if it worked or not because my side effects from radiation are severe, but I'm more sensitive to radiation damage than other people would be so maybe it would have been even worse without it. I recently lost part of my tongue on top of all that and I'm still feeling the pain from it over 2 months out.”

“I have the same eating/swallowing problems... ..you don't realize how much digestion takes place in your mouth until it no longer happens...I pretty much only chew food to make it smaller then wash it down with something hot...I'm big on hot water...trying to get enough calories backpacking is tough as I get full of water before I get enough nutrition...

Then there's that little problem with tooth decay as saliva protects the teeth...I used to drink bottled water but now go for the fluoridated city water...I also have to worry about aspirating food and water but the docs say I have a "smart" larnyx...I've been told that anyone who saw an X-ray of me swallowing barium would be amazed I can eat and drink at all...

That sucks about your tongue...mine hurt like a sonofa#&%!$ for months...morphine was my friend...I think I lucked out all and all as I had nothing cut out...

You're really going through the ringer, RichB...I wish you well...it is no fun although I can get the nasty, thick, useless saliva to form a strand up to 3 feet long if I wait long enough....
last edited: 1/21/06 8:35:49 PM”

“This is something reading about these kinds of experiences here, but I'm glad for it.

I also had some throat trauma, but not because of cancer of chemo - but when I was burned. Between smoke inhalation and intubation one of my vocal cords shut down and I developed sever dysphagia (swallowing problems). For a while I had to have everything I ate finely chopped and everything I drank had to be thickened to the point it was pretty loathesome. Fortunately I recovered to the point where the dysphagia is mild and my vocal cords are close to normal.

After the Parathyroid surgery I also had vocal changes. I worried that they might be permanent because nerves for speech travel right by the Parathyroids and loss of speech was one of the things I was warned about on the informed consent agreement. Fortunately, I recovered - except that I never could make a certain squeaky voice I used to do.”

“I really appreciate the courage Matahari and RichB have shown and shared - and admire Bear Magnet's attitude as well. It really does me good to see it and share in the conversation.”

“I have to eat like that too, but be sure to hold my breath long enough until the food passes my vocal chords so it doesn't get to my lungs. Some of it sits on top of them so I have to cough it away before the next swallow. It takes longer to eat and you have to think about what you are doing because one mistake sends food in the wrong place.

I use fluoride treatments morning and night to help prevent tooth decay and see a dentist every 3 months. So far I haven't had many tooth problems. The problem is if I do get tooth problems after radiation to the jaw I've got big problems because the jawbone is now dead. The tooth has to be saved and if it can't be and needs extraction the wound will not heal without hyperbaric oxygen. Then skin graft surgery would come next and more hyperbaric oxygen to heal that wound. That's good enough reason to protect your teeth.

I use supplements for hiking because without them, I'd have a hard time getting enough calories. My metabolism is sky high and that doesn't help things.

I'm disappointed that I got this tongue cancer now and it's a bad place to get cancer. My fear is that it will keep coming back and I'll start losing more and more of my mouth losing my ability to eat at all. It sucks and your right and surgery hurt like hell.”

“Ped, sorry to hear you had swallowing problems. Swallowing isn't something anyone thinks about until there's a problem and it's a big problem when it happens.”

“RichB - I'm sorry to hear about the tongue. I'm not happy that this thing has taken more from you.

Your way of swallowing is pretty much what I was dealing with for a while. It was very tense and anxious for me while I was there. I was also coming off all kinds of medication - so I was really prone to intense anxiety. I had something very close to a panic attack when I first really realized I couldn't swallow right - that there were muscles in my throat I just couldn't contact.

My metabolism was sky high, too for a while - about double the normal so I was drinking heavy supplements. My metabolism is back to normal now - and I gained weight because my apetite didn't drop to keep up with the metabolism.

I hope to walk a ways with you some day.”

“Rich, we share many fears and take the same, cautionary precautions...I also use the fluoride treatments (love those blue teeth) and hit the dentist every 3 months..and, like you, I know any problems with teeth could lead to much further complications...

I told my docs that I've learned it's safest for me to eat alone...that way, I am not distracted from concentrating on swallowing..otherwise it's almost a constant cough cough until I can get the food off of my vocal chords...I get tired messing with it before I get enough food...I've lost 60 pounds...I fight to keep my weight at 120lbs and it's taken me 3 months to gain 3 pounds...I could lose it in a day...do you know about Scandia shakes, Rich? 600 liquid calories is nothing to sneeze at...saved me a few times when I just can't get myself to eat...

peddypie, thank you for the kind words...I'm sorry you even had a taste of what we live with...
last edited: 1/21/06 9:37:03 PM”

“Ped, thanks, I'm still trying to gain weight and managed to put some back on in the last few weeks. I feel better with more weight on. From now on I'm going to try not to get too thin just in case of another illness.”

“Yep, talking and eating at the same time doesn't work and increases the chances of choking. I don't like to be distracted either.

It has been a while since I've had a Scandia shake drink, but I remember that they were pretty high in calories.”

“Hey y'all. Reading your posts was difficult, to say the least. I have the "Common Cold" of Cancers. I deal with symptoms that will most likely go away after time. An incovenience to me. That's all.

Y'all are the courageous ones. Keep strong & keep fighting.”

“I fell the same way Bear, like the news reporter who spends a week with soldiers on the front line. Still Bear, I have a heck of a lot of respect to your attitude in all this.

I am, of course, afraid of getting drafted. After 7 weeks in a coma and months of hospitalization, I really want to feel I am headed away from all that and that there will be a few decades at least before I have to face all that again.”

“You know bearmagnet and pedxing, anyone who comes fact to face with cancer and meets it head on gets my respect...each of you is going through their own test of character and it reads like both of you have great attitudes. There is no such thing as a casual cancer experience and those experiences cannot be compared...basically, they all are not something you would wish on your worst enemy...hope to meet you both around a campfire someday so we can horrify others as we swap cancer treatment stories....LOL...”

“I am in awe of all of you.”

“I ran into an old friend who had heard about my burns, but not seen me since. She asked me about it and the time in the hospital. She said "I was freaked when I read about it in the papers, being in a fire and getting cancer are my two biggest fears!" --- I broke out laughing and said, "Oh, I did that, too!"”

“LMAO!

I too, hope to never get caught in a fire. But never really thought about it.”

“Neither would have been on my biggest fear list, but they weren't on my to do list either.”

“Any cancer experience is scary. Once you get cancer, even if the disease itself is eradicated it's not easy to forget about it. The follow up exams will always remind you of where you were and keep you wondering if it's back.

The treatment for lymphatic and bone marrow cancer although not the maiming type where you lose body parts and function is still potent.”

“Researchers have identified a new and unusual tumor suppressor gene that may be important in cancers of the lung and head and neck. The study shows that restoring the inactivated gene can slow the growth of tumor cells.



http://www.sciencedaily.com/releases/2006/01/060119233405.htm”

“RichB - I will think of the "follow up" exams as "preventitive" exams, exclusively.

I will not worry about future health issues in that way.

As far as I'm concerned, once I'm in remission it will be like I never had Cancer.”

“My sister just found a breast lump. They don't think its cancerous, she's gotta go through all the tests. She's 36. Kinda scary, since there is a very, very, very large history of cancer in both sides of the family. She had a melanoma at age 26. Keep your fingers crossed its just a cyst.”

“Bear, I think it's great that you can deal with it in that way. I think everyone has to find their own way to to beat this.

I'm just at too high a risk to forget anything and fall into any trap that might mean me making a mistake and the result costing me my life or another surgery.

After having 4 different cancers since 1998 and a precancerous lesion that cost me one third of the roof of my mouth to a CO2 laser, I'm constantly on guard anymore because I have to be. I've been burned 3 times thinking this can't happen again when it did happen again.

I kept a journal for years so I don't forget anything and I write everything down and keep good records. I'm still learning, but I did learn one thing and it's that I have to be a good manager of this disease it I want to stay alive. My doctors are good, but they are very busy and can't do it all so it's up to me to notice problems and get moving when something is wrong.

Ped has it right when he called this a war and the bottom line for me this is a war that will never be over.
last edited: 1/23/06 7:37:33 PM”

“See RichB, that's what I'm saying. Mine & my experience is nothing and I really believe that and will continue to unless something else happens.

The dread I felt being told I had "Lymphoma" was indescribable.

The elation I felt 3 days later when told it was Hodgkins was indescribable.”

“Those feelings of dread are terrible, but glad you eventually got positive news. I know you'll beat this.”

“Put me on the list of those who got positive news. Test results came back and everything was back in the normal range. So, we'll be watching a little closer than before - but this is wonderful news. Thanks so much for all who offered support, hope, prayers etc.”

“hell yea!”

“Wonderful!”

“Great news, ped! I get my CT Scan results back on Thursday and will complete my 3rd cycle (6th treatment) of Chemo.”

“Ped, that is awesome. My mom was just asking if you had heard anything (she's a prayer warrior prt time). She'll be pleased. I too am really happy for you.

Its been amazing for me to read through all the struggles you folks have been through here. I am impressed by your courage, strength and composure. I would be a wreck, I now have a few more folks to look up to and aspire to be like.”

“Ped, that's excellent and I hope things continue to go well for you.”

“Great news! Now you may begin breathing again...LOL...”

“Thanks all, I was researching up and getting pretty depressed over the prognosis for someone with a re-occurence. I am thrilled and grateful.

I think I learned something during this tense period. Hopefully I can hold on to it without the threat of immediate immersion in a near hopeless battle for life.

Please extend my greetings and thanks to your Mom, Birch. Rightly or wrongly, I thought I really felt the love, prayer and blessings offered on my behalf back in 2001. It's a real act of love and compassion and is a gift indeed.”

“Yeah Ped!”

“Finished my 3rd cycle (6th treatment) Today. My CT Scan showed "remarkable reduction" in Tumor masses. I have a CT/PET Scan after my 4th cycle and may be done after 6 cycles, not 8. So "ill be done any where between April 27th & June 22nd. ;)

On another note - why are Cancer patients such #&%!$heads? A #&%!$ tried to change the order in which bloods were taken. She signed in 4th and tried to get in first. What The #&%!$ is up with that?

Dani and I debated the #&%!$es problem loud enough for her to here while I "corrected the order".

Then we had to go to the Infusion unit instead of The Bone Marrow Transplant (BMTx) Floor.

We went to the Infusion waiting room and as we were ready to sit down in this tiny cramped room I hear: "That seat is for my Mother" from behind. I turn around to see the living dead staring at me. I just grab my stuff and head out into the hallway and sulk. She comes out to say there are other seats but I'll have none of it.

I'm in rare form

All this comes after the 3 mile drive to the hospital took 50 minutes cause of traffic.

In BMTx you're immediately put in a private room with cable. In Infusion your crammed into tiny sections of a big room with curtains to separate out all the people who are in way worse shape then me. Its about a 7'x7' "room" and no cable!!!!! For 4.5hrs!

Spoiled by BMTx and in rare form.

Honestly, it was rough. Dani got upset a couple of times because of some patients and their condition. It was heart breaking. I blocked out everyone else.

We went to Whole Foods afterwards. it's a tradition and I try to blow off steam. Unfortunately, it was not to be. No one got near us. Wonder if they could sense it this time?

So here I sit. My irritation level higher than ever. Sensitive like never before.

On another note - I had 2 cavaties filled last tuesday. The dentist couldn't numb a particular nerve. She gave me all the Novocaine she could and the work wasn't anywhere near a nerve. But I could still feel it.

Increased sensitivity all around? I have to brush 3/wk and use fluroide mouth wash b/c chemo does a number on teeth.

Done #&%!$in so I'll end with a smiley thought.........

I may be half way done!!!!!!!!!!!!!!! Have a drink for me!

:D”

“Thanks, I would love to have a drink for you. Send me one of your credit card numbers and expiration date. Hope you don't mind, if I include a lap dance with the drink.”

“i've been using SS's card.

Edit - I meant to say brush 3x/day. LOL!”

“Here's to Bear Magnet! (Raising a glass of red wine).
last edited: 2/02/06 9:27:01 PM”

“Bear, good news about the tumors shrinking.

Sorry to hear about the rough day, but these things happen now and then, especially dealing with sick people and the stress they are under. A-holes are everywhere in the general population and sometimes you just run into them and there's nothing you can do about it. I had one cancer patient walk by when I was having an infusion in a small section and the guy tripped over my IV line and ripped it right out of my arm. That sucked and I wasn't happy about having it reinstalled.

In a specialized unit like BMT you'll get the best nurses and generally the best care compared to other units of the hospital and you can get spoiled by that. When I went into the ENT hospital unit and compared the care to BMT it wasn't even close to the same. You must have been in the BMT clinic instead of the hospital unit because in the unit patients are isolated in air filtered rooms because they have no immune system. Contact with other people is limited to family and hospital staff. While some people look very sick the good news is lots of them will get better.

Bad days happen, but I hope you have plenty of good ones ahead.
last edited: 2/02/06 9:40:16 PM”

“Congrats on the good news, bearmagnet!

I already had one for ya.”

“Thanks, y'all!

Rich - the BMT unit takes on Cancer Inpatient Infusion overload. I've been lucky enough to be there 4 out of 6 times.

Amazing care. And the nurses loooooove upbeat patient patients. I imagine they don't see that much. In fact, Dani & I are often laughing and I've never ever heard any other patients laugh.

;)”

“Inpatient=outpatient.

brain not work so good,”