The Colon Club

My situation was similar to yours, 3 kids, diagnosed at 39, and ignored symptoms that I didn't realize were symptoms.
I know it's overwhelming in the beginning, how you go from being fine one day to being a cancer patient the next. My kids have been very understanding, but it has been a rollercoaster for them. The initial diagnosis was easy for them because they believed me when I said I wasn't going to die. They had a harder time seeing the "proof" that I was sick - first the PICC line and the pump, then being in the hospital, and then seeing me get sick from the chemo. Each time I had to reassure them that the cancer was better (or gone), but it was the medicine making me sick, and that it was temporary.

One of my daughters is a worrier. On occasion, she would start to stress about my condition, so we took her to see a friend of mine who is a therapist. She recommended the following things to help her cope with me being sick:
1. Getting a "Mommy pillow" for her to help her at nighttime, when her anxiety is especially strong. We ordered a pillow with a picture of us together on it. You can even spray it with your perfume if you wear any.
2. Give her a list of things she can do to make you feel better. It helps feel empowered. My list includes making me a smoothie and reading a story to her brother.
3. Journal her feelings, or draw pictures of what she pictures in her head when she gets worried.

Hope this helps.

I was diagnosed with Stage 4 Rectal Cancer at the end of March 2012. My tumor was high up in my rectum.

According to the colorectal surgeons at Dana-Farber/Brigham & Women's Hospital in Boston, for Rectal cancer they have found that chemotherapy first followed by surgery yields a longer survival rate.

I had 15 rounds of chemo (10 FOLFOX, 5 with no oxi, 12 with Avastin). The chemo shrunk the main tumor & liver tumors (I have at least 8 spread all around my liver) about 30% and got rid of the small tumors in one of my lungs. Then I had 5 days of high dose radiation (which gave me the worst diarrhea I've ever had). Then surgery to remove the main tumor and a bunch of lymph nodes. I had a temporary ileostomy. I then got an infection and ended up with 2 more surgeries. The first surgery they gave me a temporary colostomy, but the infection wouldn't go away. The last one they had to remove the rest of my rectum to get rid of the infection and I now I have permanent colostomy. I much prefer a colostomy to an ileostomy.

Once the infection was gone I was able to start back up on chemo, this time FOLFIRI + Avastin. In all I've had 22 chemo treatments. #23 is tomorrow. I'll get the results of my latest CT Scan (from last week) tomorrow when I meet with my oncologist.

As for FOLFOX, I hated the side effects. First bite pain and cold intolerance sucked. It got worse as the treatments went on. I couldn't touch anything from the freezer and even stuff from the fridge would bother me. It felt like bad pins and needles. And forget about drinking anything cold. That felt like I was drinking razors. I quickly got used to drinking room temp water and green tea. Even now I still drink mostly room temp drinks. These side effects over the first few treatments would last a few days after. By my 10th treatment with Oxi the side effects lasted 10 days. I also developed neuropathy in my hands and feet. It got to the point that it made it difficult to type and write, though now (11 1/2 months removed from my last oxi dose) my hands are back to normal. I still have neuropathy in my feet. It doesn't stop me from walking, but I wont bother running. Even doing a quick jog to get across the street is uncomfortable. Be sure to keep a close eye on how your hands and feet are feeling and tell your oncologist at each appointment how it is. Most people go only about 8-10 teatments with Oxaliplatin (Oxi). I went 10. A co-worker who also got oxi for his esophagus cancer went 14. Some people only go a few. Everyone is different. Just watch it and tell your onc everything.

For me, the first 6 treatments were pretty easy, then treatments 7,8 & 9 were awful. Really bad diarrhea, that God awful chemo poison feeling lasted up to 3 days. I was more tired. Then with treatment 10 (my last with oxi, which was reduced to 75%) they went back to being pretty easy. Go figure.

The week after my first treatment I started juicing. I had seen 2 different segments on 2 different news stations over 2 days about cancer patients (one a stage 4 and one a stage 2) who started juicing after their diagnosis and were doing great. The stage 4 patient (I don't remember what kind of cancer she had) was 9 years past diagnosis. So after seeing that I started looking things up on the internet and found tons of info. So I started. I've pretty much been doing it ever since (I started the last week of April 2012). Also when I went to my 2nd treatment at Dana-Farber, I had a previously scheduled consult with one of their nutritionists. When I told her what I was doing and about one of the documentary movies I watched on juicing, she said "Do you recognize me?". She was the nutritional consultant and appeared in the documentary I found online.

Anyway, listen to your body. Everyone reacts differently. Try to eat as many fruits and veggies as your body can handle. Some people it doesn't bother them, others have a hard time.

Drink LOTS AND LOTS AND LOTS of water. Especially on chemo days. Electrolyte enhanced is even better (SmartWater for example, or Whole Foods also has some that is a little less expensive than SmartWater).

I was diagnosed 3 weeks after my 42nd birthday. My kids at the time were 9, 7 & 5.

I actually feel better now than I did in the 6+ months leading up to my diagnosis. Even after I got out of the hospital after I was diagnosed I felt a ton better. My bowel movements got better and the bleeding stopped after my colonoscopy.

Good luck with everything. Stay strong and positive. It makes a difference.

kmv wrote:Update-
I finalized my treatment plan with Hopkins, and started FOLFOX yesterday. So far I feel ok, but know that the side effects will peak around day 3...

kmv - Thanks for the update. Please keep us informed about your experience with FOLFOX chemo. I was on a different regimen (XELOX), and it started out fine for the first three cycles, but on cycle 4 the oxaliplatin component kicked in really hard, hit me like a ton of bricks and I finally had to stop it. I think that there must be a cumulative effect that gets larger and larger with each successive cycle, but I'm not sure. Be sure to drink plenty of water to try to flush out whatever toxic material can be discarded.

I think that it would help to keep a daily log of your side effects and to alert the oncologist as soon as there starts to be a dramatic increase. The staff should be able to reduce the dose next time around so that at least you can continue on with the treatment. Also, be sure that they record your weight properly each time you go in. I think the dose for each cycle is calculated according to current body weight, and if you weigh in heavier than you really are (i.e., your pockets are full of cell-phones, keys, wallets, etc.), then you might be given a higher dose than you can tolerate.

kmv - Thanks for the update. Please keep us informed about your experience with FOLFOX chemo. I was on a different regimen (XELOX), and it started out fine for the first three cycles, but on cycle 4 the oxaliplatin component kicked in really hard, hit me like a ton of bricks and I finally had to stop it. I think that there must be a cumulative effect that gets larger and larger with each successive cycle, but I'm not sure. Be sure to drink plenty of water to try to flush out whatever toxic material can be discarded.[/quote]

There is a cumulative effect of the oxaliplatin. And to the best of my knowledge that effect is lifetime. Most people only take 8-12 rounds. I took 17 with the oxaliplatin cut to 80% doseage after round 2. I talked to someone here that had 40 rounds. I can't imagine that. I did quite well comparatively. Remarkably I got over the intolerance to drinking cold liquids for the last 3-4 rounds. Some forgo the oxaliplatin but since it does add slightly to overall survival I never considered that. I got the biggest bang during the first 3 months. Some tumors shrank in half. It's not easy but keep on fighting.

Thanks so much for the responses and the advice!

Renee, I appreciate the insight regarding the kids. They seem to be handling it ok now, but I know it will change. I also have sensitive one who may need some extra help coping, and I like your ideas. I wish you all the best with your treatment.

Handicap, I am glad you mentioned juicing. I have been hearing a lot about it lately and want to try it. Especially with the chemo, it makes chewing painful. Have been drinking lots of water and plan to continue!

Stoma, good advice to keep a symptom log. So much is happening every day that I can't rely on my memory. And it will only get worse, I am sure.

Regarding my side effects, I am also constipated (of course) and have some eye twitching. I don't recall that being mentioned before, has anyone experienced it? And my cheeks are all red, but I don't have a fever.

Well, the baby is asleep so now time for me to turn in!

kmv, I am a bit of late, didn't saw your post, I had RC also, very low - 6 cm from anocutaneous verge, doc told me that he is almost certain I will get permanent stoma, but when I woke up, I didn't get it. But when you wake up and see you are here, truth is that there is no problem if you have stoma, you are so glad you are without this damn thing in your colon/rectum and stoma is not something scary any more.
I had symptoms over decade, evryday bleeding, and last year and a half pain and feeling that I had to go to WC and push - all day long........and I didn't always have normal poop, sometimes blood and mucus only .....
I was fortunate to be T2, but I have signet ring cell carcinoma. I pray for your good response before surgery, and good results after surgery. My friends husband was stage IIIB or even IV, before 18 years, he is cancer free since, and he gets complete colon removed.

KMV - regarding the twitching...yes, everything twitched for me, eyes, hands, legs, feet you name it. It didn't last very long, but very annoying. Also something else that isn't mentioned a lot, but saw it here and it did happen to me, crying hurts. I don't know why, but the first few moments of tears don't feel so too. It also doesn't last all that long, but it's an odd side effect.

Good luck!