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I have a Dilemma, any one else been there?

mjrnow1's picture
mjrnow1
Posts: 9
Joined: Jan 2011

Hello Friends,
I have a dilemma and would like some feedback please. Maybe some of you have been in the situation I now find myself. This is going to ramble a bit, please bear with me.

April 29th I was told I had cancer & needed surgery right away, that great tasting stuff they have you drink (bowel prep) before you get scoped did not pass, needless to say I was “bloated” sorry don't remember the medical term. Anyway I live a 31/2 hour drive from the hospital & the surgeon was afraid
my intestine would burst from the pressure so I had surgery on April 30th to remove the tumor

When I woke up the doc said he couldn't remove the tumor then because it was to large and my blood count was way to low 5.5 / 5.7. So he gave me a bag and said he would make arrangements in my town to have radiation and chemo treatments start in prox 2 months, then prox after that was done have another surgery to remove the tumor and he would remove the bag I had now, give me another bag on the other side (my right side) and then we would go from there. At the time he said he thought if things went well & I responded well that he could re-attach my bowel to my rectum and remove the bag.

So on May 6th or 7th (can't remember) he told me I could go home & that he had made arrangements for chemo & radiation and for a home health nurse to come to my house & change my dressings and to teach my wife how to do it.

The ride home was a whole another story, but we made it home & I went to bed. It must have been the 6th because the next day the nurse called & came out to change my bandages & set up a schedule to return.

My poor loving wife, I felt so sorry for her, she was terrified of changing my bandages, I could tell by the look on her face when the nurse told her she had to learn because she wasn't coming by every day & the wound needed to be cleaned every day, she also needed to help me change the bag... appliance, I could empty it, but I could not change it out. She stepped up & did a wonderful job both changing out my bag & cleaning my wounds and she has never complained, not one time and I know this past year has been tough on her.

I had a Dignity port a catheter implanted on June 9th and started radiation & chemo on the 10th had 2 treatments then on Monday the 14th my onc hooked me up with a pump that I had with me 24/7 and every Tuesday I went back to my onc & they took blood and refilled my pump, this continued for six weeks. I also was getting radiation during the same time. After the treatments was over a couple months later September I had my 2nd surgery.

When I woke up from surgery the Doc told me that the tumor had almost gone away completely so he decided to hook up my plumbing right then, not to give me the other bag. He said he was very confident that my bowels would start to work again & I would not have to have the bag. He removed over a foot of my bowel & 14 nodules and told me he would let me know the results when they came back from pathology. The day he discharged me from the hospital he told me the path results came back “ALL NEG”. There was no cancer found.. Woo Hoo was I happy.

Back at my onc, he went on to tell me about all the studies that were done I had 3 choices,
1.do nothing and hope for the best,
2.take this treatment and have a 50% chance for full recovery
3.take this treatment and have a 85% chance for full recovery
Man talk about a kick in the gut! Here I was thinking all along I was good to to, start getting my life back together & here this Doc is telling me no, no, no even though you path came back clean, and nothing showed up on your pet scan, you really need to have chemo again because we don't know if there are a bunch of cancer cells heading for another place to grow or not... BUT... all the studies show that you have a better chance of recovery if you have treatment. He told me to go home & think about it & come back in a week and we would go from there. Well I decided if I was necessary I would opt for the treatment that would give me a 85% chance of full recovery. So I have had 6 weeks of treatment, leading up to my Dilemma.

New year new deductibles and co-pay. I don't have the money to continue treatment. I talked to the doc & we put off the treatment for a week to see if I could find the money, well it isn't there so I did as much research as I could and I'm comfortable stopping treatment. Every test including the blood test came back neg. no sign of cancer. My cen was 0.4 and the doc said he wasn't worried unless it was over 4.0. Of course I'm getting a lot of pressure from a lot of family to continue treatment, but because every test came back neg. I am confident that with good nutrition, supplements and let me body get to a condition that it can fight the bad bugs. God made us in a fear inspiring way.

Anyway thanks for listening. Any thoughts or comments are welcome

Jerry

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

So glad that you are clean/Ned. I don't have any ideas on the money, you may want to contact your local cancer society and see if there is any help out there Somone mentioned that Avastin helps you to meet deductibles. I would google Avastin.com. Meanwhile I would eat healthy. Limit your beef and processed deli meat. Eat fresh, eat green and eat red.

Supplements

Am

Digestive enzymes
Probiotics 50 billion
All the bs to include niacin ( niacin when I go to bed because of flushing)
I eat oatmeal cereal and lots of berries Organic milk
Magnesia
Fish oil

I fronk supreme greens and red every mirning. Traders Joes powder form

Noon. Turmuric, Ginger, Grape extract, milk thistle

Evening

Vitamin d, 5000
Calcium, 1000
Vitamin c, 1000
Vitamin e, 400
niacin, 500

Ita a lot but I feel great!

Welcome and hang in there. At the starting line, You are better off then most.

Raquel
Selenium p, 200

mjrnow1's picture
mjrnow1
Posts: 9
Joined: Jan 2011

Thanks Raquel... Hugs

tr71068's picture
tr71068
Posts: 26
Joined: Dec 2010

Im a single mom and found out I had cancer very unexpectantly. I was also looking at new year new coinsurance, ded and my Oncologist had a list of places that I could apply to that would help me if I met the requirements they even filled out the paperwork all I had to do was bring in last years W2's. I was approved and the amount will cover my coinsurance and copays and deductibles I dont know what area you are in or if they can help you but the place that is helping me is HealthWell Foundation 800-675-8416 maybe they can assist you.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

What type were they and were they weekly daily, bi monthly ? Folfox, folfiri, ?

Buzz

mjrnow1's picture
mjrnow1
Posts: 9
Joined: Jan 2011

Hey Buz, they were weekly. First treatment was a cocktail of Eloxatin, 5fu, and a shot in the arm that I can't remember what it was, the next week just 5fu then back to the 1st again.
The first is about 5.5 hours and the 2nd is about 2.5 hours

Jerry

mjrnow1's picture
mjrnow1
Posts: 9
Joined: Jan 2011

Thanks for the info, I was told they were out of funds... hugs

AnneCan
Posts: 3692
Joined: Oct 2009

I don't have any advice for you; being from Canada I can't offer any perspectives on insurance. I just wanted to let you know my heart goes out to you with this dilemma.

mjrnow1's picture
mjrnow1
Posts: 9
Joined: Jan 2011

Thanks hugs...

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

When I was having treatment last year, I ended up paying 2 or 3 bills (surgeon, I believe, hospital, and maybe a scan) by setting up payment plans. I couldn't agree to the amount the hospital wanted to set up but I told them the amount I was going to pay and that I would pay more when I could. I know that this has its own problems but is it a possibility so that you could at least get your treatments done? And then hopefully recover (financially) later?
What kind of treatment are you having? It wouldn't hurt to talk to your doctor/oncologist. And if they don't "deal with the billing end of it," I would insist that they at least listen to you. You never know where it may lead...or who they may lead you to...or
Holding you in the Light for answers and healing, one way or the other.
~Aud

coloCan
Posts: 1956
Joined: Oct 2009

patientresource.net

click "Resource & survivorship" on home page and then

"Financial resources"

(Their free Cancer Guide is worth sending for (0r checking on internet); rather extensive listing of cancer centers by state at end of pub).......steve

mjrnow1's picture
mjrnow1
Posts: 9
Joined: Jan 2011

Thanks so much to all of you guys ( & Gals )... lol. I was able to get the funds to continue treatment, although 2 weeks late. It didn't take but 1/2 day for some of the side effects to return.

I have 5 more treatments than a 2 week break then the final 6 treatments & then WOO HOO I'm done with it.

Remember to always keep thinking positive & do not listen to any thing or any one neg. and never, never give up

Love & hugs to all

Jerry

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

First welcome to the board and second I am so sorry that you even have to be here. I went through patient advocate foundation and couldn't be happier. I have no insurance coverage so finding treatment was a very frustrating situation for me. They assigned a case manager to me who worked overtime to help me get what I needed to be able to start and receive treatment. Please check them out and give a call if you want to continue treatment. www.patientadvocate.org/

Otherwise, if you are comfortable with not continuing treatment please do ask for help with suppliments and alternatives that people here on the board are familiar with. There's a lot of great information stashed in our members heads. Just ask.

mjrnow1's picture
mjrnow1
Posts: 9
Joined: Jan 2011

Thanks Lori, I'll check it out. My family was able to come up with the funds to cover co-pay so I'm, back on treatment.
Hugs

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