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Chemo Stories.... how bad is it?

Patrusha
Posts: 488
Joined: Jun 2006

I am still resisting the idea of treating my Stage II colon cancer with chemo. The surgery was fun enough. But, OK, I agreed to meet with an oncologist on August 4. I know what the literature says about the side effects and we all know what they are. What I want to know, from those who have lived it, is how you fared with chemo?

It's all so confusing to me, too. What is a "round?" How many rounds do you need? If you have six months of chemo, what exactly does that mean? How do you live, work, etc. while taking chemo?

Anybody like to share their stories? Thanks!

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

I understand your questions but can't answer them until you tell us the drugs they want you to do. There are several different chemos for our cancer and each one has different side effects and round definitions.

Lisa P.

Patrusha
Posts: 488
Joined: Jun 2006

Lisa,

I guess I won't know what they recommend until after my meeting on August 4. I'll have to get back to you then on the cocktail they are proposing.

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

Hi Pat,
I was stage 3 with six bad nodes so they strongly suggested that chemo was my only chance of survival. I started out on 5Fu and leucovorin for the first week of the month. It nearly killed me with renal failure,my body was drawing fluid out thru my bowel trying to put the fire out. I was changed to 5fu and levamisole(look up the history books) I had 48 sessions of that over a year. The levamisole was one of the old time sickening drugs ,basically it is a cattle drench for intestinal worms. Since chemo I have had pancreatitis ,lost my gallbladder and have had several lots of peptic and duodenal ulcers... On the plus side I have been cancer free for over 81/2 years and am now considered cured. It is your choice ,chemo is awful stuff,I don't know whether I would have survived without it. At the time I decided to take every option offered. Whatever you decide there can be no regrets and no what ifs later on , what will be will be. Ron.

Patrusha
Posts: 488
Joined: Jun 2006

Ron,

That renal failure thingy is really scary. I'm glad you came through it and are here to tell about it 8+ years later! I've already lost my gall bladder and suffer from reflux disease... hope that won't complicate things. Maybe it's a plus? Anyway, thanks for your two cents.

IzzieCat
Posts: 56
Joined: Jun 2006

I am stage 3. with 3 positive lymph nodes. I have been on chemo since April, 5FU/Leucovorin. I am on a six week on, two week off schedule, for a total of 24 weeks, (I get a chemo infusion once a week) I guess the "round" is the six weeks of weekly infusions. So. I'll have 4 rounds of chemo before it's over. I'm at the half-way point right now. As far as side effects, it's different for everyone, and it depends on which chemo drugs you are on. For me, 5FU hasn't been too bad. A bit of an upset tummy, I have not thrown up or anything yet. Some people get diarreah (I never know how to spell that!) but so far, I have not experienced it. My hair is thinning, but they say that 5FU doesn't cause total hair loss. The worst side effect for me yet has been fatigue. It's very common while going through chemo. I can tell you that before my chemo started, I was terrified, thinking that it was going to be horrible. But, it's actually been a managable thing. Meet with your oncologist and see what he has to say. I don't work at the moment, but I know that there are people on chemo that manage to keep working. Try not to think the worst, I know I did, and I now know that it's not nearly as awful as I thought it was going to be....Keep us posted.

Mary ;-)

Patrusha
Posts: 488
Joined: Jun 2006

That's encourging, Mary, that you've fared so well during your therapy. I worry about the fatigue you speak of and being unable to work because of it. My salary is cut down to 60% while I am off, and it is really taxing the family. But I guess it is an individual thing, like everything is with chemo. You can't really tell how you will react until you get into the middle of it. Maybe I would be one of those who could still work in between naps and running to the bathroom! Sigh.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi there again,
I don't know if you remember, but I had chemo two separate times. I was originally diagnosed in 2002 Stage III w/ 4 nodes involved (i think? not sure....) Anyway, I did 5FU and Leukovorin. Unlike Ron I fortunately did not have such a hard time. I do however, still have a watery eye from the 5-FU which can cause scar tissue in the tear ducts. Many people experience this which then resolves, but in my case it never did. It is very annoying, but other than that I did not have serious side effects. If memory serves me I had a problem with constipation and stomach cramping. I worked the entire time. I am a forest ranger and I hiked 10-15 miles/day on extended backpacking trips and so forth. HOWEVER, in your case, with no nodes involved I WOULD NOT do it as I feel it would be unnecessary.
I went through that for 6 months and at my very next checkup, a couple of months after the chemo ended they discovered a met to my liver which they said/believed had been there the entire time, just too small to see on a scan. So then I had a liver resection and chemo again the following summer. That time I had Xeloda and Camptosar. The Camptosar made me very nauseated and wiped out for a day or two but then I was able to shake it off. I did not have the runs or anything. Xeloda (oral 5-FU) caused my feet to become severely blistered and I was not able to bear the weight of my overnight backpack. I could still do "day hikes" though, and I worked the whole time. Camptosar made my hair fall out.....
I finished that in August and then in February they discovered 2 mets in my lung. Once again, they think they had spread there since the beginning, not a recurrence per se, but I then had them removed surgically and DID NOT have chemo again.
That was 2 years ago.
The bottom line: I don't feel the chemo helped me. The surgery on the other hand did.....
JMO, of course the decision is up to you. Like I said, I tolerated the chemo well, but why put yourself through that if you do not really need to? It is like poisoning yourself. However, if you decide not to do it you have to feel you're making the right decision and stick with it. Do not doubt your decision.
I think the most important thing you can do is change your diet, eat right, don't eat sugar or refined foods, exercise and go on down the road.
Good luck with your decision,
Susan

Patrusha
Posts: 488
Joined: Jun 2006

Susan,

Yes, I remember your story. I worry a lot about the two "cysts" they said the MRI showed on my liver. I mean, what if it really is cancer? Can they be wrong? (Don't answer that! Of course they can be wrong....)

What you say echoes in my head... you don't feel the chemo helped, just the surgery. That is why I am leaning toward no chemo. I'd love to be one of those who can say "they cut it out and I was done with it." I don't want the chemo to get any possible credit, ya know?

And I have to wonder if the chemo weakens us to make us more susceptible to new tumors. Surgery alone sounds good to me, but I know the oncologist is going to put on a huge press to do chemo. I have to have my thoughts in order, listen to what he has to say, and then make my decision. This sucks.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi Patrusha,

I think that you are right that you are resisting chemo for treating your stage II cancer.

I might have already wrote about my mother's story with chemotherapy. I also resisted it for her but then decided to try it. My 68 years old mother took Xeloda - 2 pills in the morning and 2 at night. There were supposed to be 6 months of it - 2 weeks to take and then 1 week off.

I am my mother's conservator and so make all decisions for her.

After 1st round (round means 2 weeks) her liver functions were elevated, and she had to stop and wait. CT scan showed a couple millimeters nodules in her liver and lungs which were there before the surgery and appeared to be stable and per oncologist are not concern.
When liver functions normalized, she went on 2nd round and after it liver functions went up again. I was very concerned about her liver. It seemed to me that if this drug would cause liver failure, it is not worth it. They told me that this drug has the side effect of affecting liver. So, I thought about stopping the drug.

And then turned out that she has got severe pneumonia. Per doctor - chemotherapy causes the immune system to fail which caused pneumonia. It was so severe that she almost died from it. She has recovered now from pneumonia. There was also renal failure because of low blood pressure at the beginning of pneumonia. It could also be from chemotherapy.

After this there was no more Xeloda for my mother.

Many people on this board took Xeloda with no or minimal side effects. But my mother almost died from pneumonia caused by weakening of immune system by Xeloda. She did not take any other drug as chemotherapy.

Look into alternative methods. I have copied postings from 2bhealed (Emily) about what she did. She had stage III and refused chemotherapy. She did all alternative methods and already few years cured. I can send you her postings if you like.
Good luck with whatever you decide.

God Bless,
Eleonora

Patrusha
Posts: 488
Joined: Jun 2006

Yes, I remember about your mom, eleonora. I realize the elderly are more apt to have serious reactions to chemo, but you can't help think about those risks, even if you're young and relatively healthy.

I'd love it if you could send me Emily's postings. I am reading about alternatives and would be very interested in what she has to say. Thanks!

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

After an operation for stage II colon cancer, I had 10 injections of 5fu and leucovorin in Jan/Feb of this year. It was hardly a problem. After the fourth injection, I was nauseous for a day. I kept working while doing the chemo and also 34 or so radiation treatments.

I stopped by the hospital on my way to work, got weighed, had my nurse connect up to a vein and inject me. Took 20 minutes or so each day. Very little pain involved.

I'm very conventional in my thinking about whether to do the adjuvant therapy. I was told I'd be improving my odds of survival, and I never hesitated to do it.

Patrusha
Posts: 488
Joined: Jun 2006

You're the other little voice sitting on my other shoulder, Greg. The practical one that says chemo is just something you to do beat the beast. Some days it just makes sense and I think I'll go for it. Other days I am dead set against it at all costs. Most of the time I am just muddle-headed. Thanks for your input.

AuthorUnknown
Posts: 1564
Joined: May 2006

Patrusha,
I was stage III with 6 bad lymnodes. I had 12 two-week cycle treatment that took me 6 months to complete. I would suggest you to go on American Cancer Society website to get the information about types of treament and questions to ask doctors. Those information helped a lot to communicate with my oncologist and the trust in him. Keep positive thinking and attitude is the best way to fight againg chemo. What can be worse than this?
I was one week on and one week off. The first day, I went for CBC (Complete Blood Check) to make sure I was able to get treatment the next day; the second day, I stayed 2 hours in the clinic office to start treament and I took medicine with a device home for 22 hours; and then went back to the offcie for another 2 hours treatment, and replaced the device and carried home with another dose of medicine for another 22 hours; and finally, going back to remove everything. Side effects usually hit me on the 2nd day. I would lost few pounds during the 5-6 days, and gained weight back once the side effects faded away. Once the side effects was gone, I tried to eat whatever I could and to gain weight back. Strong faith in God, praying, and positive thinking and sense of humor helped through that difficult time of period. I believe you can make it too. Be brave and strong. I will pray for you...
Rosa from the Big Apple.

Patrusha
Posts: 488
Joined: Jun 2006

Hi Rosa. I'll check out the ACS website for more information. Your regimen sounds like it was tough though you made it through OK. That is helpful to know... Thanks for the prayers.

Betsydoglover's picture
Betsydoglover
Posts: 1210
Joined: Jul 2005

Hi Patrusha -

Like Scouty says, it is not really possible to comment until you have a proposed regimen. Since I was Stage IV, doing chemo was not really an issue. Just so you know, I did 6 cycles and have been no evidence of disease for 11 months.

What's a cycle (or round)? It depends upon the regimen. In my case a "cycle" was chemo every 3 weeks. And, only 6 of them. Folks at earlier stages often have more treatments (but usually with lower doses), so they may have what they think of as 12+ cycles - just making something up - but the oncologist may actually think of it as 6 cycles.

When you have a proposed treatment plan, let us know and also quiz the oncologist.

Take care,
Betsy

Patrusha
Posts: 488
Joined: Jun 2006

I will surely let you know what the oncologist proposes, Betsy and get more input then. Until then I will keep researching....

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi Patrusha,

The big reason why oncologists want people to do chemotherapy is that they make a lot of money on it. There was a posting here on this board that someone overheard a nurse or a doctor mentioning about this. Chemotherapy can save life but it can take it away too. Secondary cancers can result from chemotherapy. You could search for all 2bhealed postings as far as why she decided to refuse chemotherapy. Go to search field on the top of the page and enter 2bhealed.

Here is what Emily (2bhealed) posted about her alternative methods. I hope it helps.

God Bless.

Eleonora

Well, the list is long but I built my foundation for keeping cancer away on juicing fresh organic veggie juices and eating macrobiotically. I detoxed my life as much as my diet. During my diet detox I was a vegan and had NO animal products whatsoever. I took many many supplements that my Naturopathic doctor had me take and I went to a Traditional Chinese Medicine practitioner for 6 months weekly having acupuncture, massage, lymphatic drainage, and counseling.
I exercised daily and restarted a yoga practice that I had given up. I avoided toxic people and cut down stress in my life.
I worked very very very hard at everything. I researched like crazy and believed in everything I did. I didn't believe that chemo would help me, only harm me. That would have been counterproductive for me to do something that I didn't believe in FOR ME.
Juicing is about eating LIVE ENZYMES. Every single organ in our body needs live enzymes in order to function properly and when our diets revolve around too much "dead food" (meat, junk foods, sugary foods, fatty foods) then our bodies have to draw out enzymes from our organs and then they start to disease and fall apart.
This is true with your pH level also. Disease such as cancer lives in an acid environment but NOT in an alkaline one. Fresh veggie juices help to correct your blood pH alkalizing it. It's a fast easy way to pack a highly nutrient-dense punch. It is easy to digest for a system that is fighting disease.
GREEN = LIFE
The more greens the better. I add green powder to my veggie juices. I add it to my blueberry smoothies. You can get green powders at coops and natural foods stores. I use Barleans Greens but there's Kyo-Green, Green Magma, Perfect Food, among others.
I use a Champion Juicer but Omega 8000 is supposed to be good. The BEST on the market, so I am told, is the Norwalk. But it's pricey. I really like my Champion.
www.discountjuicers.com
So that's the basic protocol that I have done. I did lots of other stuff too like coffee enemas (as part of my detoxing), Essiac Tea, Liver cleanses, Parasite Cleanses....you name it I tried it! :-) Well almost all....I never did Noni Juice. But there are some that drink some wonderful antioxidant drink....I forget what it is....
Like I said, at the world renowned Mayo Clinic in Rochester, MN Stage 2 or lower cc patients do not get chemo. So maybe a second opinion is needed? I was told that surgery is curative for Stage II and lower.
This was a big decision b/c I am not the norm. I had a lot of pressure to do the chemo. But I knew in my heart there was a different path for me. And basically, the chemo scared me more than the cancer! I saw what it did to my sister, my grandfather, my aunt. Some people thought I was nuts. Some have called me brave. Some have come to the same conclusions as I.
Chemotherapy.....a cytotoxic drug therapy just doesn't make sense for my situation. It was a crap shoot. I was told there COULD be some renigade cancer cells in my body so " Just In Case" let's dump all these dangerous chemicals (cuz that's what they are) into your system (5-FU) and take you to the brink of death and bring you back with leucovorin ( a vit B "rescue remedy") and completely obliterate your immune system and leave you open to luekemia, secondary cancers among a host of other potentially nasty problems....like kidney and/or heart damage.....and see if we can prolong your life by a small percent.
It just didn't seem worth the trouble.
I wanted to treat the ROOT problem of cancer---cancer is a SYMPTOM of a deeper problem. I wanted to dig up that root and cure it.
If someone gets colon cancer the diet seems to be a great place to start changing since colon cancer is 80 % dietary related.
Do our oncologists even go there with us? Not in my experience. In fact....the chemo clinic where I consulted with a local onc, they served their chemo patients DONUTS! Sugar and fat laden cancer FEEDING foods!!
Cancer feeds on sugar!! And they were serving it up on a platter. Do you think for a moment I could trust this doctor with my LIFE???
I don't think so!!
Now, my Mayo onc I LOVE, but HE told me that JUICING WORKS!!!
So two key ingredients about juicing to remember:
LIVE ENZYMES & ALKALIZING THE BLOOD
So while my "treatments" were not Western Medicine condoned, my path has kept me healthy and cancer free for almost 5 years.
There are NO guarantees in life. But as scouty says, "I'm making it really hard to allow those cancer buggers to live in my body!!"
I hope this helps. Feel free to ask any specific questions you may have.
peace, emily who is never afraid to say NO!
I opted to not do the chemo and used Traditional Chinese Medicine, Macrobiotic diet, JUICING fresh veggie juices, oodles of supplements, vitamins and herbs among other things.

My insurance doesn't cover an ND either. I consulted with one and paid out of pocket (can you say VISA?) and she helped me wade through much of the supplement/vitamin issues, but actually I did most of my work with a Traditional Chinese Medicine practitioner. (again, can you say VISA).
Getting a juicer is a bit of an initial investment of about $225 and then it's just what produce you buy. My 25# bag of juicing carrots run between $13-15 every couple of weeks and a bag of granny smith apples every few days--depending on how much juice per day (at the height I was juicing 3 quarts a day which is a healing protocol amount rather than a maintenance amount (now I am doing from 16-32 oz a day). And then green powder is about $35/week.
Ok, so that you can do without consulting an ND but just by doing some research on your own (Gerson Institute, www.hacres.com, www.curezone.com....etc).
Just some suggestions that are free! :-)
Health comes at a cost--but in the long run I think it is worth the investment!
I surely hope you're not on Avastin or Erbitux that long! Specially at $25,000 an injection!
What robbery! I think the pharmaceuticals (sp) are evil charging those kind of prices. Can you imagine if we were all given that kind of leeway with our insurance companies to cover nutritional supplements???
hey a girl can dream.....
peace, emily who dreams of a day when insurance companies realize that in the long run springing for good nutrition is cheaper and improves lives.....
I also am taking ammonium tetrathiomolybdate (TM) that curiously no one at this web site has heard of. It reduces the available copper in your body that the cancer needs to develop new blood supplies..... I learned about this at the Immune Recovery Foundation in Atlanta (alternative treatment clinic). I firmly believe this stuff keeps the cancer beat back... It is a long story, but if you are interested, you can read about it at coldcure.com (scroll down the left side of the home page for a thorough write-up)

At the beginning of my journey of cancer healing I was juicing up to three quarts of fresh carrot juice daily.
My recipe was designed for DIGESTIVE properties of the veggies and fruit.
Carrot (especially good for colon)
granny smith apple
celery
parsley
spinach
ginger
To this I added green powder (either Kyo-Green, Barleans Greens, Perfect Food, Green Magma etc), Flax Seeds (Forti-Flax by Barleans), and protein powder (this too I experimented with--soy, brown rice, whey, fermented soy).
Simple dishes would be steamed veggies (broccoli, kale, beets, garlic, onions etc) on brown rice. To this I splashed on some Braggs Amino Acids or lemon and Flax Oil.
At the time I was vegan and doing very very low fat....flax oil and some olive oil being the only fats at all.
I also had a lot of body work done....massage, acupuncture etc. It's good to get the lymph going as this moves out toxins from the system. You could dry brush her skin.
I use a Champion Juicer (www.discountjuicers.com). If you made her juice at home you'd want to make sure that she drinks it before 1/2 hour is up since the live enzymes start dying off then. It's the live enzymes that are key in juicing.
I am always so very surprised to hear of Stage II patients going through chemo. At the Mayo Clinic (world renowned for cancer) they do NOT prescribe any chemo for Stage II but do curative surgery.
You could find a massage therapist who would make a "house call" or an acupuncturist. I had mine make a house call for a friend who had broken his neck. So I know they're out there who will do this.
When my sister was very ill her neighbor would come over and give her foot massages which did a world of good for her.
Back to the simple meals---I would just lightly steam a veggie and put it on some brown rice spritzing it with the flax oil and lemon like I said. Sometimes I mixed a couple veggies. But back then I was keeping it very simple and allowing my body to detox, heal and rebalance.
I hope this helps.
Oh, and I did a ton of supplements too.
the skin brushing is dry brushing. You can find this kind of brush at a natural foods store. I am sure you can find them other places it's just that is where I found mine.
It will have bristles on one side and rubber bumps on the other. You "brush" the skin with the rubber bumps first working in upward strokes towards the heart. this is to move the lymph.
So legs, inner thighs, back of thighs, groin, belly, under breasts (not sure if you wanna do your mom there) around breasts, underarms, arms, neck, face.....anywhere you have lymph nodes.
Then take the bristle side and "flick" the skin as if you are brushing something off the surface. Do the same areas. I do this before showering.

ccpm1960
Posts: 11
Joined: Jul 2006

My father-inlaw so far doesnt seem to have any side effects while taking Xeloda as he is also taking a Chinese Mushroom pill extract - also known as Coriolus versicolor.

Read this link that I have pasted below - I hope it helps!

http://www.literaturesearch.net/Literature%20Search%20files/Coriolus.pdf

Love, Christina

gregsd
Posts: 1
Joined: Aug 2006

I have metastatic colon cancer. Just diagnosed this summer. It started in my appendix and they found a small nodule on my liver when they did a bowel resection. I started chemo this past week...a combination of 5-FU and Oxaliplaten. So far I feel great. That may change, but the antinausea drugs seem to be working very well. The only noticeable side-effect has been a heightened sensistivity to cold. I'll be having 12 rounds of chemo, one every 2 weeks for 6 months.

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