Help! Newly diagnosed.

KathiG

My husband Bob had a "routine" colonoscopy 2/28 and on 3/3 he had 1/2 his colon removed due to a large malignant tumor. The surgeon took two cancerous areas off his liver and 6 out of 24 lymph nodes were cancerous. We are trying to be positive, but we know this is not good news. We have an excellent oncologist and my hubby is young--only 44. Bob is scheduled on Tuesday for a PET scan and will probably start chemo in a couple of weeks. Any recommendations? He is in pretty good spirits, except every once in a while he gets a little nervous. His mouth still hurts and he is not really eating a lot, but what he does eat is very nutritious. I am giving him supplements as well. What should I be doing to give him the best chance to beat this? KathiG

pattieb

Before and during his chemo treatment make sure he drinks a lot of water, it will help to keep his veins open. good luck

Eddie50

Kathi;
I too was diagnosed back in September, 2002 with a tumor in my lower intestines...I was in surgery ten days later and had 12 inches of my colon removed as well as some lymph nodes. It was also found that the cancer had traveled in the blood stream and there was four small nodules in my lungs...The cancer was removed from my colon and I have just finished my 12th chemo treatment and the nodules in my lungs are shrinking...What has got me through this is keeping a very positive attitude and being confident that I am in good hands with God and my Doctors....I also requested an anti-depressant from my Doctor and he prescribed Zoloft. It helps you get through those occasional down days and it really works!!...Your Husband is a young man and can beat his illness...Tell him to stay fit, watch his diet and to keep the faith......God bless and our prayers are with you....
Eddie

joe08536

Kathi/Bob,

My name is Joe and I'm 35, I was diagnosed as an T3,N1,Mx about 2 1/2 years ago.

I can certainly let you in on some pointers and hopefully helpful hints. I will apologize however, as I tend to ramble but do get where I'm going eventually.

First let me say you have my sympathies regarding your recent news. Hopefully this forum and others can provide you with needed help.

My experience was at least initially not terribly different albeit a little earlier on than Bob's diagnosis.

It sounds like Bob's tumor was in either the right transverse colon or the ascending colon, but it also sounds like it got out but not too far. With some luck, the liver is an extremely resilient organ and can regrow large portions of itself.

Personally, I found chemo to be the most challenging part of my diagnosis. For better or worse. Given Bob's age and the possibility of remote metastases I would strongly recommend the most aggressive therapies available.

For me, my therapy involved 5FU, Leukovorin and a medication called Camptosar. In combination these medications are not fun and it is likely unless they have another regimine in the last two years this is what he'll be given.

I'll describe my experience to some extent and hopefully you'll find some useful information here and there.

Some definite DO's and DON'T's.

1. Drink extra fluids the day or two before your Chemo. A hydrated chemo patient is a happy chemo patient - if such a person exists. A dehydrated chemo patient is an excellent candidate for pincushion of the month club. Basically the higher your blood volume the puffier your veins and this is good for two reasons.

A. The nurse can more easily find and stick you with the needle for your chemo.

B. The chemo will not damage your veins as much if you are hydrated vs. dehydrated (more on this later).

C. If you get dehydrated - via vomiting or diarhea, you need to replace the electrolytes and fluid your body needs, Gatorate and Pedialyte are good choices but to each their own. (I prefer Gatorade fruit punch - which can help with weight gain if this was lost before diagnosis).

2. You and Bob should remember this acronym BRATS, basically these are Bob's new favorite foods , Bananas, Rice (puffed or steamed), Apples/Applesauce, Toast and Soup. These foods all promote bulk in his bowels and reduce diarhea symptoms.

3. Have a small meal before chemo - preferable something as easy on the way up as it is on the way down (my personal recommendation is applesause or puffed rice and banana's).

4. Reduce/eliminate hard alcohol from Bob's diet. It might seem that if ever there was a time for booze - this was it. While wine with dinner might not be too bad, Bob's liver and kidneys have got better things to do over the course of his chemotherapy than worry about dealing with a double vodka or gin and tonic.

5. Try to get chemo scheduled for Friday's - preferably in the mornings or Saturday's in the morning. I personally found I was good for exactly one thing keeping my pillows under my head for about 24 hours after my chemotherapy.

You may want to consider a 4 day work week if possible, it worked for me and sometimes you need more time to recover and recouporate so the weekends are naturally a good time to do this.

6. Kathi, You need to realise that Bob will probably have very little energy during his chemo and so may not be able to be very helpful - if however Bob was not very helpful around the house in the first place you may not notice very much change.

Bob's iron and white blood cell counts will both go right down the tubes. Sometimes chemo may not be possible so eating properly is important, lot's of green leafy veggies - spinach and - broccoli are good choices as they are both high in iron content. If needed the Dr can give Bob
Procrit which will help him produce larger red blood cells.

When you are getting chemo, you will probably get a blood test at the beginning to make sure your bloodwork is ok. If you want, you can ask for copies of your bloodwork if you want to keep track of these things but some people don't worry about these things.

Your medications, Aside from your chemo medications, you will probably need a couple of other medications.

7. Immodium AD - This is good - and cheap stuff, it will stop Montezuma's Revenge AND reduce if not prevent the powerful diarhea associated with the standard chemotherapy. This is also where hydration is key as well. In combination with the BRATS diet mentioned above Bob's bowel movements will be loose or very mildly diarhetic but not so bad that fluids are lost too rapidly.

8. Kytril - This stuff is very expensive but it's also very good, it's first rate anti-nausea medication working on seratonin levels in the brain rather than affecting your gut. It works wonders but it also costs about 60 bucks a pill.

Vitamin E - Bob's body will not heal wounds or cuts as readily during his chemotherapy - because that's what the chemo drugs do - prevent cells from replicating or repairing effectively. Vitamin E is an anti-cancer drug - although my personal opinion is that - it's a little too late for that - but it can't hurt - in mild dosage and will improve skin health and help Bob's scar(s) become less noticable sooner.

I'm sure there are about a million other things I have forgotten but if you would like, please write again and I'll be checking back in this forum from time to time.

Best of luck,

Joe G.

pricemom

There are books by a cancer surgeon named Bernie Siegel which I found extremely helpful. He focuses on the mind/body connection and visualization to fight cancer. As for chemo, when I was first diagnosed in 2000 (age 39, 16 of 22 nodes positive), they gave me a combo of 3 chemo drugs: 5 FU, Leukovorin, & Camptasar (also called CPT-11). At the time they thought that was the best available; I had a hard time with nausea & fatigue. Unfortunately, I have had a recurrence and am now taking 5FU+Leukovorin+Oxaliplatin, which was recently approved by the FDA. Best of luck to you both. Michelle

StacyGleaso

Hi Kathi...
I hope my contribution will help Bob with his new diagnosis. I am a 35 year old female. I was diagnosed in October 2001, at age 33. I had no obvious symptoms, and was originally diagnosed with some sort of hemorrhoid gone crazy. My only symptom was a sore tailbone. It simply felt like I fell down, landing on my rear. Due to the location of the pain, I was in no hurry to humiliate myself by running to the doctor. Finally, when the pain just got unbearable, I saw the doctor.

The original thought was that I had a blood clot on a hemorrhoid. That was removed within the confines of the doc's office. After a week off work, per the doc's orders, the pain remained. Lucky it did, or I would have figured the blood clot was the end of the condition. I had a flex sig done on October 3, 2001. The doctor said it was nothing he had ever seen before, and for me to wait a day for the pathology report.

I called the doc to get the results, and his nurse wanted me to come into the office. I explained I was one tough female, who could handle anything they needed to say. After 10 minutes of realizing I was not coming into the office, the doctor got on the phone and told me I had a malignant rectal tumor. I boldly asked him what the next plan of action was, and he said surgery on October 8, 2001. At that point, my mom just showed up at my home to get the news. Her maternal instincts kicked in, and said that we would search for another doctor's action plan.

I went to the University of Chicago on Friday, October 5, 2001. I met with one of the top physicians in the country. He suggested 6 weeks of pre-surgery radiation and chemotherapy. This was to shrink the size of the tumor, which was about 2 inches long. October 29, 2001, I had a port-a cath implanted near my left collarbone. This is how I would receive the chemotherapy.

I got my butt tattooed with tiny dots by the radiology team, in order for them to know where to "shoot" me.

I wore the chemo pack like a fanny pack as the drugs fed right into my system. Each week I went back to get a new pack, and have the blood levels checked. I did have a blood transfusion prior to treatment as my hemoglobin was down to a 6. The doctor asked me if I felt tired due to the blood level, and I simply answered that "Isn't everyone who works full time tired?!?!?"

My pre-surgery chemo ended on December 16th, 2001. Enough time to enjoy the holidays. I didn't have any side effects, and didn't miss a day of work. I also have three kids ages 3, 5, & 8 who never even knew I was sick.

My surgery was on January 22, 2002. After ten hours in the operating room, it was determined that two lymph nodes and 40% of my liver had to go. But hey, I still had 60%! I had a temporary ileostomy to "re-route" things until the surgery area healed. I had post-surgery chemo until July, 2002, when I made my oncologist a deal. If I could get a PET scan and it was within normal limits, I could be done with chemo. My only side effect was thinning hair. I never lost it all, and never got sick from the chemo. I was VERY lucky. I attribute that to a great family and support team, and drinking lots of water. Popsicles help if you ever get mouth sores. I had my ileostomy reversed on September 13, 2001. Yes, that was Friday the 13th. I didn't care. I was ready to fight head on. I just had a CT scan on Monday, March 10th, and everything is fine. I still have the port-a-cath implanted, and plan to keep it until I'm 5 years in the "clear." I hope this helps. Most importantly, tell Bob to keep his chin up and fight it all the way. Contact me anytime for support. A doctor or nurse can tell you they understand what you're going through, but unless they've been there, they have no idea.

Take Care,

Stacy

2bhealed

Kathi and Bob,
So sorry for your diagnosis. As you have quickly found out, your life will never be the same. My most important advice I can give you as one who has been there is to get off SUGAR!! It's what feeds cancer. Starve that cancer in any way you can so cut out sugar, white flour, white rice, alcohol, dairy (it's mucus forming and cancer also likes mucus), and meat. I liken colon cancer patients eating meat to a lung cancer patient smoking a ciggie. Increase his fiber with flax seeds and juice juice juice ( I recommend a Champion Juicer)(www.discountjuicers.com) carrots, spinach, parsley, ginger etc. Anything that is good for digestion and green. Enzymes are also important for colon cancer folks so are the EPA oils and calcium--but NOT from milk or cheese.

A very good book for chemo/nutrition is "Beating Cancer with Nutrition" by Dr. Patrick Quillin. He will explain what kind of supplements to use for what kind of cancer and what kind of treatment. I think it should be handed out to every cancer patient upon diagnosis.

I personally chose to not do the recommended chemo after watching my sister die of this cancer. Plus my tumor didn't give off markers so they wouldn't know if the adjuvant chemo (5FU leucovorin) was working. It wasn't a chance I was willing to take after seeing what it did to my sister.

I am solely doing alternative medicine and am feeling wonderful! 18 months cancer free so far. I also recommend researching detoxing especially since the liver was involved. You most likely would have to wait until after the chemo as you wouldn't want to burden the liver so much with dumping toxic chemicals into and toxic waste from his body at the same time. I have found the website www.curezone.com to be helpful in colon health articles. Check it out.

If you do anything for your hubby getting him off of sugar would be imperative...like I said STARVE the cancer. Please keep us posted on Bob's condition. Another website that I have found helpful is www.cancerdecisions.com. Dr. Ralph Moss was in cancer research at Memorial Sloan-Ketterling and has written many good books on the subject.

You would do your hubby a huge favor by researching on your own, reading books, and talking to folks who have been through this to see what worked for them. We are all different and will react differently. I am highly allergic to certain meds and just knew in my soul that taking chemo would not be good for me. I prayed about this fervently and knew what I needed to do. Unfortunately, the medical establishment was not helpful in my alternative pursuit. Oncology only knows chemicals not veggies. :-) So I have had to do this on my own and find alternative practioners--they are out there. Do you have a natural foods store or coop near you? There is a wealth of info at these places.

I hope this helps.

peace, emily

Dreamer57

Hi Kathi,
This September I will be a 7 year survivor of stage 3 colorectal cancer. The prognosis from my oncologist was for two good years with treatment. They try hard, but can only guess. I
endured all the chemo and radiation treatments - some days were better than others, but I'm glad I gave it my very best shot. My last seven years have been worth all of it. People who
don't know I went through cancer can't tell. My recommendations would be to offer lots of mild choices to eat. Rather than "What sounds good to you?" which could be NOTHING!!,
I would offer milkshakes, creamy soups, toast, maybe even hot cereal. Vitamins are important. I did best with mild chicken-type dishes, rather than tomato-type dishes. I would be
happy to answer any questions I can for you. I wish I would have had someone to tell me. The doctors mean well, but they haven't done it themselves. They tell you what the textbook
tells them. We don't all follow the textbook. Best wishes to you and your hubby. By the way, I was 38 when diagnosed. As I said, so much for textbooks!

JKB

Hi...I hope your husband is doing better and figures out what he is going to do. My husband age 59 was diagnosed 2/03 with stage 11 (T3 NO MO). He is being seen at USC Norris Cancer Center. They removed 18 '' of his large bowel and 13" of his small bowell. The lymph nodes were neg. The oncologist wants him to start chemo, but it is our understanding that chemo may not help at all for this stage, and that chemo is very hard on folks and they can even die or have long term health complications. My husband does not want to do the chemo. He wants to "wait and see what happens". Does anyone have any advice or similar circumstances? This is all new to us. My husband had no symptoms to speak of...fatigue, some abdominal pain, and 2 cranberry colored stools. His CEA before the surg. was .5. I am afraid to DO chemo if it isn't going to help anything, but then I am afraid to NOT do chemo just in case. Anyone else with this problem???

joe08536

JKB said:

Hi...I hope your husband is doing better and figures out what he is going to do. My husband age 59 was diagnosed 2/03 with stage 11 (T3 NO MO). He is being seen at USC Norris Cancer Center. They removed 18 '' of his large bowel and 13" of his small bowell. The lymph nodes were neg. The oncologist wants him to start chemo, but it is our understanding that chemo may not help at all for this stage, and that chemo is very hard on folks and they can even die or have long term health complications. My husband does not want to do the chemo. He wants to "wait and see what happens". Does anyone have any advice or similar circumstances? This is all new to us. My husband had no symptoms to speak of...fatigue, some abdominal pain, and 2 cranberry colored stools. His CEA before the surg. was .5. I am afraid to DO chemo if it isn't going to help anything, but then I am afraid to NOT do chemo just in case. Anyone else with this problem???

Well, I'm a 3 year survivor. I can say that your diagnosis of T3T0M0 is good - relatively speaking this means you got it nipped in the bud (no pun intended) - so to speak and it is very likely there are no remote cancer cells wandering about BUT if you wanted to be more sure, you can do the chemo regimine, It is generally not a fun thing and I don't want to come of sounding like a salesman but as a paitent you want to give yourself the best possible outcome. I don't regret my decision at all because should it come back - or heaven forbid come back in a remote-metastates situation, I can at least comfort myself with the knowledge that I did everything I could have the first time around.

Having said this - a normal sequence of 4-5 sessions of chemo are no picnic but it's helpful to have someone around to help and work with you for support.

For me, it was worth it and the long term effects were not too bad, for me I had some neuralgia and did have a nasty-bad reaction to some anti-nausea medication and of course the requisite hair-thinning but I got all my hair back within about 4 months of stopping my chemo and otherwise had good responses but I'm also very lucky, I had a T3N2M0 situation and my CEA was neglible.

In short, I hope this helps in your decision.

Regards,

Joe

spongebob

Good morning KathiG and Bob (and everyone else for that matter!

I'm new on the net here so it looks like I'm sort of joining the chat a bit late.

Anyway, I am 39 and a survivor. I was diagnosed about 18 months ago with colon cancer type 3 stage 3. I had approximately 26 inches of my colon removed and did 6 months of weekly chemotherapy. The first thing I want to say to you and Bob is that this thing can be beat. Secondly, as to your question about what should you be doing to give Bob the best chance of beating this: be there for him. Support him. Hold his hand while he does his chemo. My wife left me at the same time I was diagnosed and I went through my ordeal alone. Attitude is everything and anything you can do to keep Bob's attitude going strong will help him.

Short of that, I really can't offer any more advice than the great nuggets many of my survivor friends here have already given you. I would like to mention a study that Bob may qualify for...

I was (and still am) on active duty with the US Coast Guard. As a member of the Armed Services stationed in Washington, DC I received my treatment at Bethesda Naval Hospital (yep, the doc that did the President's scope did mine, too - talk about your standard of care!). Anyway, the Bethesda Oncology Clinic is in a joint program with the National Cancer Institute. As part of the Human Genome Mapping Project, NCI is looking at hereditary cancers. One of the most common type of hereditary cancer is NPHCC (Non-Polyposis Hereditary Colorectal Cancer). It tends to hit patients when they are young. Pathology on my tumors indicated that they had been with me since I was 33. Given my family history of CC, my age and the fact that my tumors were located in my ascending (right) colon (which tends to preclude "classic symptoms" of colon cancer), they felt I might have a hereditary form of cancer. I entered the study and (surprise!) I found out I do.

I mention this because of Bob's relatively young age. Most folks don't encounter colon cancer until they are into their 60s/70s. If you are interested in getting in touch with the study managers, drop me an e-mail through the system here and I'll provide you with a name and a phone number/e-mail address. The study won't really do anything to help cure Bob, but if you have children and Bob is a carrier of the gene, they will test your children (if they are old enough) so they can know if they carry the gene and should take certain preemptive actions.

In closing, I hope this has been helpful. One other thing I would suggest is a book "Chicken Soup for the Surviving Soul". It is loaded with lots of great anecdotes (including several by the Dr. Bernie Siegel that pricemom mentioned below). It is good not only for Bob, but it is good for you. The book will give you a window into Bob's head so you can see some of the emotions he is feeling as the patient.

Best wishes to you both. Be well.

pam

Kathi and Bob,
I think you have gotten plenty of good advice here already. I would just add that everyone has a different reaction to the chemo so just try to be flexible and go with what works for you.

I was 35 when I was diagnosed with stage IV colon cancer with liver mets in November 2000. I had 13 inches of my colon removed, half my liver removed, and 8 months of weekly chemo (5FU, leukovorin, and irinotecan). The chemo wasn't fun but it wasn't the end of the world either. It made me nauseous but I just ate what I wanted when I felt like it and didn't eat if I felt it would make me sick. I did not lose weight, have diarrhea, develop mouth sores, or lose my hair. I did get tired a lot and my doctor had me get Procrit shots a few times.

Take care and God bless.

Sakin

pam said:

Kathi and Bob,
I think you have gotten plenty of good advice here already. I would just add that everyone has a different reaction to the chemo so just try to be flexible and go with what works for you.

I was 35 when I was diagnosed with stage IV colon cancer with liver mets in November 2000. I had 13 inches of my colon removed, half my liver removed, and 8 months of weekly chemo (5FU, leukovorin, and irinotecan). The chemo wasn't fun but it wasn't the end of the world either. It made me nauseous but I just ate what I wanted when I felt like it and didn't eat if I felt it would make me sick. I did not lose weight, have diarrhea, develop mouth sores, or lose my hair. I did get tired a lot and my doctor had me get Procrit shots a few times.

Take care and God bless.

Pam,

This is all so new to me, I know very little about cancer.
My husband (35 years old) was recently diagnosed with colon cancer. The cancer spread to his liver and the doctor said he couldn't remove it from his liver because it was on both lobes. My husband has to start chemo and also go through radiofrequency to kill the cancer in the liver. The doctor said there are only about 2 doctors that do radiofrequency in our city.
We are going today to a consult with the doctor to discuss the treatments, how often he needs them.

Cancer runs in my husbands family, his mother died of breast cancer.

whitzw

Sakin said:

Pam,

This is all so new to me, I know very little about cancer.
My husband (35 years old) was recently diagnosed with colon cancer. The cancer spread to his liver and the doctor said he couldn't remove it from his liver because it was on both lobes. My husband has to start chemo and also go through radiofrequency to kill the cancer in the liver. The doctor said there are only about 2 doctors that do radiofrequency in our city.
We are going today to a consult with the doctor to discuss the treatments, how often he needs them.

Cancer runs in my husbands family, his mother died of breast cancer.

Pam, where do you live. If it's anywhere near Gainesville, Florida's Shands Hospital at University of Florida - go see Dr. Scott Shell. He does the RF and is excellent.

Whitzw

vixeny

Kathi,
I am a 39 year old single mom of an eight year old boy. I was diag. with colon cancer in Aug. 2002. I am in the middle of six months of Chemo. The best thing you can do is just be there for your husband. I have only a few freinds localy and I tell you a spouse would have been great.Let him know to ASK for help b/c it took me along time to ask and I should have done it sooner. He will be down and tierd at times just being there is sometimes all you can do. I know it feels overwhellming and it is. Get yourself some help and don't try to be superwoman. You can't help him if you are brunt out. Good luck

OpaRon

Tell Bob to have the nurse give him a small cup of ice chips before each chemo treatment. Have him keep ice in his mouth during the treatment itself. This slows the circulation of blood, and the chemicals, to the membranes of the mouth and throat. Really worked wonders for me in eliminating mouth and throat sores. I am an 8 year survivor. Keep a positive attitude and he will do fine.