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Wife newly diagnosed

andyc56
Posts: 42
Joined: Oct 2004

Hi. My wife (age 45) has been diagnosed with colorectal cancer (her father diagnosed at age 53; still alive and doing well). Malignant polyp removed by colonoscopy, and colon resection performed Oct. 12. She is now home and recovering nicely. No cancer in the colon wall or tissue, but 10 of 14 lymph nodes removed were positive for cancer. CT scan and visual inspection by surgeon indicate no further metastasis, but she will have a PET scan soon.

We are still trying to pick up the pieces and I am trying to get educated in a hurry. The oncologist is recommending a six month chemo regimen of 5-FU, leucovorin, and oxaliplatin. Sounds appropriate but we will seek a second opinion. We live in the Nashville, TN area which is blessed with a number of great docs and medical centers.

If there are particularly helpful resources you are aware of for a "newbie," I'd love to hear about them. Looking forward to your comments and support. Despite the news on the lymph nodes, we are optimistic and pray for healing and guidance. Regards,

Andy

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Andy,
Sorry that you have to be here, and that your wife has to go through this, but welcome to you both. What good news that her dad is doing well. Have you tried the information part of the ACS site? Lots of good info there.
I'm not familiar with all the chemo drugs used in stage III with multiple nodes, but I'm sure others here can pitch in with more info. It sure is great to be close to medical resources, and it sounds like your attitude is great, too.
Good luck to you both and keep us posted. Judy

andreae
Posts: 238
Joined: Sep 2003

Hi Andy,

I'm sorry about the diagnosis, cancer really sucks (and that's an understatement!). I am a stage IV survivor that has done some research (my initial oncologist did not want to treat me when the scan picked up the mets.). I think the FOLFOX treatment is the way to go for Stage III. The side effects are normally tolerable (although the neuropathy can be annoying). I found oxali/5FU/leucovorin much more tolerable than the FOLFIRI protocol that I am currently on. If you really wanted to go aggressive, you could maybe ask about Erbitux and Avastin (two monoclonal antibodies).

I just wanted to congratulate you on the positive attitude and rational approach. I firmly believe that educating yourself about the cancer is crucial. Good spirits are just as important as any treatment - but I also believe that cry fests and the occasional pity party are also healing. If you have any questions about side effects or if you want to vent, don't hesitate to post. The people here are fabulous!

Good luck,
Andrea

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, Andy -

Let me add my "Welcoe, sorry you're here" to those of my friends. We call ourselves the "semicolons" (for obvious reasons if you're familiar with the resection procedure).

Sounds like your wife is getting the industry standard chemo regime. Judy makes a good point about this website's info section - lots of great information there. One thing the ACS doesn't seem to be as strong on is naturopathic treatment regimes. We have our own resident granola munching, Birkenstock wearing, blueberry smoothie sipping expert in the form of Emily. She is a plethora of knowledge about "alternative" treatments and resources.

If I may recommend a book for you and your wife to read (yes, BOTH of you): Chicken Soup for the Surviving Soul. I'm not big into the "It's All Small Stuff" mindset, but I found the book uplifting and I recommend it to caregivers for the glimpse it allows you into the mind of the survivor.

This is a great place - we draw strength from each other... well, everyone but Andrea (above) - she just doles it out and stands there as our hero and role model.

Keep that good attitude ('tude as we refer to it here) - it is the most potent tool you have in your arsenal as you battle the dragon.

Any time you or your wife need to vent, have a question, want to gab, etc. we'll be here... Just watch out for the guy called "Kanga", he likes to wear thong swimsuits and brag about it...

Keeping you & your wife in my thoughts & prayers.

- SpongeBob

Lisa Rose's picture
Lisa Rose
Posts: 589
Joined: Mar 2003

Hi Andy,

Just wanted to welcome you and your wife to the " Semi- Colon Club ". I'm sorry you both had to come here but you are now in good company...
My name is Lisa and I had surgery March 20,2002 for a stage 3 rectal cancer at the age of 40. Like your wife I also had 10 positive lymph nodes out of 14 and no metastasis. My treatment consisted of 23 infusions of 5-FU only and 28 radiation treatments. If I could have been treated a little more aggresive I would have, but it was not a option to me here in Canada.
So far everything is going fine and I am greatful for that.

Lisa

PS, My husbands name is also Andy...

Btrcup's picture
Btrcup
Posts: 287
Joined: Jun 2004

Hi Andy, so sorry to hear about your wife's diagnosis, but welcome to the boards. There are some great people here who have answered several questions I had when my husband was diagnosed. He just celebrated his 42nd birthday when diagnosed with Stage IV (colon resection had mets to omentum and 13/21 lymph nodes). He started chemo regimen (5FU, Leukovorin, Oxiliaplatin & Avastin) on Apr. 1st. In July, his PET and CT scans showed no evidence of disease (NED). Aside from diarhea and tingling & numbing of feet and hands, he tolerated chemo pretty well.

He just finished his 6 mos. of chemo and is doing well. Still has the numbness in hands and feet, but onc says it may take up to a year for that to go away. He will get more scans soon (probably next month) and hopefully will still be NED. (fingers crossed).

We will keep your wife in our prayers.

Linda (Baltimore)

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Andy,

So sorry about your wife's diagnosis - but you have come to the right place for information, advise, great stories of survivorship and lots of prayer.

I was diagnosed 2 years ago (in Dec.) with Stage 3 colon cancer, was resectioned and had 6 months of chemo with 5FU, Leucorvoroin, and CPT11. Two nodes positive. Today I am feeling great.

This will be a new journey for the two of you, some days will be better than others but you can and will get through it. And remember, the semi-colons will be here for you and your wife, so don't fail to take advantage of our "expertise".

As SpongeBob said, attitude or "tude" is a big part of the battle. We all have our stories and it might be interesting for you and your wife to visit some of our personal web pages. There we post pictures (which makes us real people)and tell our stories about fighting this disease.

We'll look forward to hearing from you and your wife about her progress.

Regards,

Kerry

P.S. As Andrea said, venting and pity parties are also welcome here. It is good therapy and we have all been there.

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Andy,

"Welcome" and others have said so well, you have come to a wonderful place.

Your wife's diagnosis and treatment is exactly the same as mine. My polyp was removed by colonoscopy with no tissue or bowel involvement. I had 3 out of 31 nodes positive.

I am exactly a year ahead of your wife, having my resection on October 15, 2003. I did fine with the chemo, only having to have a couple of treatments postponed due to low white blood counts. That happened toward the end of the treatments due to the build up of the chemo. For the last three treatments, I had to have my oxaliplatin administered over three hours rather than two. This was due to my getting toxic hepatitis due to the large dose of Oxaliplatin I was receiving. (130 mg.) Oxal. is a pretty strong drug with the main side affect being neuropathy.

Please know that you and your wife are not alone, and you both will be in all of our prayers and thoughts. Feel free to email me with any questions or concerns.

Kay

littlejulie's picture
littlejulie
Posts: 311
Joined: Mar 2004

Hi there,
As you can see you came to the right place. This network is a great place for support. My mom was diagnosed with stage 3 (node involment) in March. She is currently on a rest during her chemo treatment. Day by Day - It will get better. Your wife will have her ups and downs but everything will be just fine. Check out the personal web page - there are A LOT of great stories!

julie

all the best,
julie

andyc56
Posts: 42
Joined: Oct 2004

Thanks, everyone, for the warm welcome! When my wife (Kim) feels better I will send her to this board and you can repeat the process with her! We will keep you posted on our progress.

Andy

bsrules
Posts: 296
Joined: Mar 2004

Hello There!!!! Sorry to hear of your wife's diagnosis. The people here are GREAT!!!!! My husband was diagnosised A year ago in Sept. and I don't know what I would of done if I hadn't found such super friends here!!!!! This is a GREAT source for info and support!!!!! Hang in there and posted whenever you feel you need to talk or have a question no matter how small we will be here!!!! Keep a positive attitude and take one day at a time and don't forget to take care of yourself!!!!!!

Best Wishes and Prayers coming your way!!!!

Sue

taraHK
Posts: 1961
Joined: Aug 2003

Hi Andy.
I was diagnosed age 44 with rectal cancer. My treatment was somewhat different from your wife's -- but the proposed tx for your wife certainly sounds in line with what I hear about other's in similar circumstances.

Wishing you both all the best, and welcome to this great group.

Tara

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Andy and welcome from us here in OZ. Sad to hear your wife has joined us semi-colons but as you can see the people here are a great mob. If you have any trouble with my ozzie slang just ask SpongeBob--he has ways and means of deciphering my lingo--lol
Oh and Bob is just jealous that I wear a g-string outa choice. Bob has to wear his speedo's 'cos the navy says so-company policy!. It sure ain't 'cos he has nice butts--lol.
Hey Andy, here's a hypo for an ozzie site--you other guys might take a look too. It gives some good info on medications used in chemo.
http://www.virtualcancercentre.com/
Come here often Andy and will sure look f/ward to talkin to yah "better arf". Give her our love n chin up mate.
Btw--look at my webpage for my stats. under "kangatoo"
b safe--b well and keep us informed mate,
luv n huggs---kanga n Jen

steved
Posts: 836
Joined: Apr 2004

Welcome Andy from the UK- yes we are spread wide and far but with the same aim in common: to support eeach other through what is a difficult but not impossible journey.

My story is similar again- age 31, stage 3 with 2 nodes adn am 2 months into my six month chemo regime. It really isn't that bad (although I am not having oxaliplatin- a difference between Uk and US). I work full time and get a bit more tired and some nausea during the week I have chemo (I have it one week a month although the other common regime is a day each week) but the rest of the month feel fairly normal.

I would encourage you to educate yourself but be cautious about info that isn't from a reliable source- cancer is one of those things where there is a huge range in the qulaity of info available- any doubts or queries are often best checked here- usually somebody knows the answer

Hope things are going well and your wife is recovering from the op well- it does take time and patience and if she has a stoma it does take some getting used to.
Let us know how things progress and feel free to email people for more specific info.
Best of luck, Steve

MJay's picture
MJay
Posts: 132
Joined: Aug 2004

Hi Andy-
Lots of good advice and support to be found here. Another site to look at re: APR and the resulting colostomy.... uoa.org. Check out the discussion boards. Both sites are invaluable to me.

MJay

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi andy,

Welcome to the boards. What a wonderful husband you are to come here on your wife's behalf. She has half the battle won with you as her support!! BRAVO!

I was Stage 3 lymph pos zero mets colon cancer. I was told to do the 5-FU/leucovorin protocol.

I declined.

That's right. I said NO to chemo. I had my reasons....and they were many....the first and foremost being that I watched my sister die of this 9 years before my dx and I was not going to go her route.

Secondly the use of chemo does not line up with my belief system on how the body heals. It did not make sense to me to poison the body in order to heal it. Where in medicine do they do that? (except in vaccinations maybe) (which I do not do either).

It made more sense to me to heal the body rather than decimate it. Heal it by finding the root cause of my cancer be it emotional, physical, spiritual....nutritional imbalances etc.

80% of colon cancers are dietary related so I started there. I changed my diet. in my research a couple things kept repeating themselves....DETOXING and LIVE ENZYMES.

I started juicing organic veggies, adding protein powders and a green powder full of wheat and barley grasses and other live foods. I cut out all animal products. Cancer feeds on sugar so I even quit honey (I hadn't had white sugar or refined sugars for 20 years).

I found a Traditional Chinese Medicine practioner who advocated a holistic approach to healing and went for my "treatments" weekly for 6 months. She did acupuncture, massage, lymphatic drainage, herbs etc. It was fabulous.

I never puked, lost my hair, was hospitalized for dehydration, I am not sensitive to hot and cold things, I am not fearful of secondary cancers due to chemo or radiation, I did not suffer from chronic diarrhea, and my heart and kidneys have suffered no chemo damage. I cannot claim "chemo brain".

i have never been healthier feeling in my life. I am 43.

I have survived for three years now. For me this has worked.

If you would like to research more on your options (the ones your onc does not want you to know about) I suggest the following:

Questioning Chemo by Dr. Ralph Moss (former researcher with Memorial Sloan-Kettering) quit after the laetrile cover-up.

A Cancer Battle Plan by anne Frahm she was on her death bed sent home to get her affairs in order and she discovered juicing and diet changes. She lived to tell of her healing.

A Cancer Battle Plan Sourcebook by David Frahm.....husband who continues the mission after she died of a liver disease contracted by too many blood transfusions due to her chemo.

The Makers Diet by Dr. Jordan Rubin he healed his "incurable" Crohn's Disease by eating this way and taking HSO's (live food) (Crohns is an intestinal disease)

Prescription for Nutritional Healing by Balch and Balch

When Hope Never Dies by Marlene McKenna

and my personal favorite:

Beating Cancer with Nutrition by Dr. Patrick Quillin

This last one is a must for any cancer survivor's library. It doesn't matter which route you decide to go--it helps you navigate the nutritional supplements that can help either way.

www.drday.com
www.gardenoflifeusa.com
www.hacres.com
www.curezone.com

This is but a fraction of what there is out there!

i know this is totally against the tide here but as blood letting has fallen into disgrace I hope shall go chemo some day.

peace, emily who has to speak her mind

andyc56
Posts: 42
Joined: Oct 2004

Thanks everyone for your wonderful support and useful information! Kim continues to recover well from surgery and we have started obtaining second opinions from oncologists. It looks like one of the FOLFOX variations will be the recommended course.

I am keenly interested in the dietary changes and supplements that some have recommended. Any additional information and personal success stories in this regard would be appreciated. I am in the process of locating several of the books mentioned above. Thanks again, you guys and gals are super!

Andy

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi andy,

I send anyone who wants my protocol---my list of supplements etc of what I did.

Quillin's book helped me alot in this dept.

The Sourcebook by Frahm is a "how-to" resource.

Anne's and Marlene's books will give you the personal testimonies.

There is another book (but not sure how easy to get tho I have a few copies) "Your Child Does Not Have to Die by LeAnne Sorteberg (sp) whose child was sent home to die from Mayo and they put a tube in his stomacha nd just pumped carrot juice and supplements and he is still alive today (over 10 years I think). She was in my former homeschool group so I know her personally. She and I have both since moved. her son had tumors entangled in his major organs that could not be removed. They had these octopus like tentacles that wrapped around his heart. After they started juicing the tenticles retracted and the tumors died. They are encapsulated and not removable but they are dead. Isn't that AWESOME??

It's worth looking into don't you think?

peace, emily who is here to help

Niki6
Posts: 2
Joined: Nov 2004

Dear Andy
Sorry to hear of your situation. 3 weeks after we were married I was diagnosed with Rectal Cancer. I have had the chemo treatment your wife is going through. Ask the doctors for Emend. It is a newer anti-nausea medication and it worked great for me. I was able to eat after and during chemo treatments. She will probably experience a reaction to cold liquids and her fingertips may tingle after touching cold items, especially ones removed from the freezer. The good news I have is that those symptoms go away. The best advise I can give you is talk to your wife or listen when she talks. My husband has been one of the greatest supports I have.
I wish you both well in your fight. Keep up the great attitude!

Good luck,
Niki

retiretofish
Posts: 5
Joined: Feb 2004

Andy, I am two years survivor of stage 2 colorectal cancer, was resectioned in June of this year. I went back to work full time and fell pretty good most of the time. Keep the faith and follow the Dr. If you don't like what the Dr. said, then get another opinion.

Check out www.gacoloncancer.org, it is an new organization that I am working with in Atlanta to help folks.

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