CSN Login
Members Online: 18

New Diagnosis

Betsydoglover's picture
Betsydoglover
Posts: 1211
Joined: Jul 2005

Hi all - my name is Betsy. I've been reading this board the last couple of weeks and thought I would announce myself and ask for any thoughts you all have.

I was diagnosed on 5/23 following a colonoscopy. Turns out I am stage 4 - 1 "very tiny" met to the liver. I had colon surgery on 6/7 and just started back to work this week. I'm still tired although this is improving. I'm doing a much better job maintaining the proverbial "positive attitude" than I ever would have imagined. Both my surgeon and my oncologist are very positive about the potential for a good outcome (and for now I am going to concentrate on that and now "borrow trouble" - as my mother says).

My chemo will begin on 7/18 and I am curious to hear from others on the same protocol.

I'll be on oxaliplatin (every 21 days), Avastin (every 21 days) and oral Xeloda (twice a day for two weeks followed by 1 week off). Anyone else on this same protocol? I've read things here about the individual drugs but would love to hear from anyone on this combination. And if on this combination, is your cycle 21 days? Or 14?

Thanks all. You sound like a great group and - given the circumstances - I am glad I found you.

P.S. Have you all found that surgery significantly suppressed your appetite? One of my symptoms prior to diagnosis was a somewhat reduced appetite, but since surgery it has been really significant - noticeable by anyone, not just by me. Thx again.

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

Hiya Betsy and welcome to our family. For some it takes a bit of courage for them to post but as you will see....there are no taboo topics here with our disease. Never be bashfull..always ask exactly what is on your mind. I am sorry that cancer has brought you here but I am ure we can all help and support you. I can't comment on your chemo..I only did 5fu/leucovorin...but there are others here who will help. As for the eating. I pretty much found that the amount I could eat did also become smaller.Also I found it much better to keep meals small and rather than 3 main meals a day I ate small aounts but more often.
You will probably find that what you eat and how much will determine how regular your bowel movements are. As you have only recently had surgery it will take some time for things to settle. You may like to post more info on what surgery was actually performed and what part of your bowel was resected.
Chers for now....look after yourself, kanga n Jen

Betsydoglover's picture
Betsydoglover
Posts: 1211
Joined: Jul 2005

Hi kanga / jen (forgive me if I haven't figured out your name(s) properly) -

Thanks for the reply.

The (brief) specifics of my surgery are as follows:

I had a laparoscopic colectomy - tumor was located in the lower descending colon / sigmoid colon. Not sure "how many inches" were removed (I'll ask Monday when I see the surgeon.). I'm sure laparoscopic surgery make recovery better, but they still cut things up inside and there is also an approximately 2.5-3" incision in addition to the little "bandaid" incisions, so recovery was (and still is) definitely noticeable!

First surgery of my life, so all things considered I think I am doing pretty well. "Only" 4.5 weeks post-op, so while I think I am doing well, I SURE know this has happened!

HowardJ
Posts: 484
Joined: Jan 2005

Hi Betsy,
Welcome to the site. Most chemotherapy is given as combinations of drugs. Each has a different mechanism of action and the combinations help improve response rates. There are folks on this site who've been on just about everything so I'll let them describe their experience (I 'got away'with just surgery). I, too, had laprascopic surgery. Don't forget to walk as much as you can...it really helps with the recovery. I'm guessing your appetite will return.
Good luck and welcome again!
Howard

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

Hi Betsy,

Welcome to the "Semi-Colons". We are a great group of folks, if I must say so myself.

I was on Oxaliplatin and Xeloda and can tell you that with the Oxaliplatin you MUST avoid cold stuff. I always wore gloves when getting into the refrigerator - do NOT drink cold drinks - order everything without ice.

The Xeloda is another matter altogether. After about 2 months I got the "hand and foot syndrome" which produces rough scaly and peeling skin. The doctor reduced my dose, but I now have bad nails on my toes which are coming up from the nail beds.

Please don't let me scare you about this. It is a symptom some people get, but not all, so you may not.

I did not receive Avastin, so cannot help you there. I have heard from others though, that they have had few side effects.

Take all the anti-nausea drugs they give you. The Oxaliplatin may cause some nausea.

About your appetite - you will find lots of us Chemo Tubbies who found significant weight gain. It must be the steriods or some other drug involved that causes an appetite increase. Again that is varied in each person.

Betsy, I wish you the very best. Please let us know how you are doing.

Also, we are having a "Semi-Colon" reunion in Las Vegas in October. You are invited. You will meet lots of people who can give you lots of information. Email me if you want more information

Take care and God Bless

Kerry

CAMaura
Posts: 719
Joined: Feb 2005

Hiya Betsy!!

So thrilled to hear a new voice here. Welcome. Well, I didn't have quite the same situation as you, but a few similarities. I had a laparospic surgery as well...I amsure that it made healing time easier. I love my scar. Well, actually, I am still amazed that my surgeon could do so much with such a little incision....
I agree with Kerry about side effects from Oxaliplatin. The sensitivity to cold is crazy at first, but it does wear off. I had the IV mix of your Xeloda...so I am not sure what you will experience. You know, side effects vary within people....but post what you are experiencing and I am sure that someone will be able to help.
This site is really wonderful. So glad you joined.
You'll have to fill me in about your love of dogs....I grew up going to dog shows, but I love mutts too. Let me know what type of dogs you have or would like to have.

Take care.
Cheers,
Maura

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

Hey guys,
I forgot to mention my Maggie Mae. A black Lab that helped me get through all my cancer stuff. She is a wonder. So I am a dog lover too.

Kerry

Reini
Posts: 22
Joined: Jun 2005

Hi Betsy,
My husband, reini, lost his appetite after he had his operation last Nov,the way he got around it was to eat small meals often as you can and small walks too that not only gets everything moving but gets your body to require more energy. We also put protein powders in fruit drinks he liked to get a bit more energy. Strangely the main thing he remembers was looking up cook books with pics of food that looked really good and we would try to make them so it was more a hobby than a hunger necessity. I know it sounds a bit strange but it helped him!He didnt have the same chemo as you but he did have fresh juices that seemed to help him with his energy levels
GOd Bless
Belinda

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

Hi Betsy. I am getting a similar treatment to yours. Actually, I am writing from a hospital bed right now, getting chemo infusion number two. Every two weeks I am admitted to the hospital for a two day infusion of 5FU, Luecovorin, Oxaliplatin, and Avastin. Plus, the supply me with a growth hormone that prevents me from sleeeping at all on the first night, and a blood thinner for my port, and anti-nausea medication via IV.

I am stage four colon cancer but my colon is now gone. They took it out, but I have five liver mets and 7 out of 25 lymmph nodes tested positive after surgery. My regimen is aggressive, but my oncologist is encouraged by my age (35) and thinks I'll handle it well. So far, so good. I have experienced few dramatic side effects: insomnia due to the steroid administered before chemo, some loss of appetite, one day of horrible diahhrea, some acid reflux and recenlty a slightly nauseaous feeling but nothing came up. I understand that the effects accumulate and may get worse during treatment. Just something to look forward to, I guess.

As for surgery, my entire colon was resected. I've met NO ONE else who has had this! I have discovered, and this may well apply to partial colon resectees, that in the recovery process the small intestines will pass bile salts through to the anus, and the feeling of passing this feels like passing hot coals, or razor blades, or maybe broken glass. No one warned me about this before my surgery. I have found that fiber supplements (i.e.Metamucil) are a great, great help in this regard. I take fiber supplements with every meal now, and my new digestive system works much better! Of course, you don't want to start doing that until the doctor says you can abondon the low residue diet that you are limited to just after surgery.

Best of luck and please let me know if you've any other questions.

What kind of dog do you have?

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

Glad you announced yourself Betsy...but you could have done it under better circumstances gal! Welcome to our family. Hey...where do you gals get off having laparoscopic surgery...who did you bribe???? lol! I got a scar from breast to pubic bone...Bruce Willis would be proud to have it!
.
Jen is my lovely wife Betsy(and carer). I am Ross but the kanga thingy evolved to kangathong so you can take your choice.
Ok..nuph humour.
You will get all the help you need here Betsy....n then some.
Glad you came on board,
cheers, Ross n Jen

HisJoy's picture
HisJoy
Posts: 115
Joined: Feb 2005

Helllloooo, Betsy! Life is such an adventure, isn't it? I was diagnosed with stage 3 colon cancer (right, ascending colon) in January, had my hemicolectomy Jan.13 and began chemo Feb. 15. I have had 9 treatments so far, with three to go. I get Avastin, a calcium/magnesium drip (which mitigates the reaction to cold caused by the oxaliplatin), then my mix of Leucovorin, Decadron, Oxaliplatin, then another drip of calciuim/magnesium and finally a 5-FU push and pump. The infusion pump keeps the 5-FU going for another 46 hours, then I have to have a shot of Neulasta on Fridays after treatment in order to keep my white count up.

Side effects are manageable, although that reaction to cold got BAD before my oncologist added the calcium/magnesium drip. I couldn't even walk down the aisle at the grocery store where there was frozen food without MAJOR tingling and numbness and FORGET drinking anything that is the least chilled! I couldn't pick up a metal spoon or wire coat hangar without a lot of neuropahty, but I must say that this side effect is VERY minimal now. Just use a glove when you reach into the fridge and warm up your milk a bit (20-30 seconds in the microwave) before you drink it or put it on your cereal.

I did also have insominia two nights during treatment week, but I have Ambien now and that helps me get SOME sleep. Acid reflux is controllable by Pepcid - if I wake up "urppy," I just grab a Pepcid right then, and I'm ok. Immodium takes care of most of the diarrhea, although that IS an ongoing problem and can cause dehydration if you're not careful. Nausea has been minimal and well controlled by Phenergan. I also get "chemo headaches" about three days each treatment cycle on the week after treatment, but I take Tylenol and rest a lot, so it's not awful.

As for the appetite - I lost about 15 pounds in the hospital during and after surgery, which made me pretty scrawny. I didn't feel like eating much for a month or so, but then my appetite returned, and I've gained 10 pounds back and look a lot healthier. The one thing I used to LOVE that isn't working out for me now is ICE-CREAM!! The oxaliplatin makes it impossible to eat ice-cream for a week or so after treatment, but even then, the texture and taste of something that cold is affected somehow - it all tastes grainy - and so it just isn't the SAME! I CAN, however, take small sips of MILKSHAKES after the oxaliplatin effects have worn off (within a week of treatment). *yum*

I'd LOVE to hear back from you or any other of the "semi-colons" out there. Let me know how you're doing! I think you'll find that the chemo for colon cancer isn't all that bad and we can get through this with flying colors!
Bbuffing@earthlink.net
Bonny

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

Bonnie,

Thanks for the explanation of side effects from Oxaliplatin. As I am wrapping up my second treatment now, I have not yet suffered the sensitivity to cold. I live in Atlanta, where it gets hot and we like cold drinks. I particularly dread not being able to drink cold drinks, but like I said, so far so good. You are the second person I have seen recommend calcium/magnesium to counter, or prevent, that side effect. I must mention this to my oncologist.

Generally, your treatment and side effects sound much like mine aside from my not experiencing this cold sensitivity. But I'm not a semi-colon, I'm a no-colon.

Thanks,
Rodney

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

As the others have said, sorry you have to be here but I hope you find this place to be as wonderful as I have.

I too am a animal lover, 1 dog and 2 cats. My boxer is a hoot.

Again welcome!!!

Lisa P.

madu
Posts: 53
Joined: Mar 2005

Hey Betsy,

Just wanted to chime in - sounds like your cancer was similar to mine - my tumor was lemon sized in the rectal sigmoid area with a met to the liver (about 3 cm - has to be 2 cm to be considered cancer). I had the "big" surgery - no laproscopic avail when I went through- and had a resection of liver and colon. I went throught 8 months of 5FU and leucovorin (that was all that was avail. then - the other drugs were in trials) and 28 days of radiation. I was diagnosed 8/98 at age 31 - so I'm very close to my 7 year anniversary - not bad for a stage IV, huh?

As to the appetite, I didn't notice any reduction. I was told to keep my weight up so as to tolerate chemo better. Maybe you could try more frequent, smaller "snack" meals?

While I was going through treatment, my mom's dog (also a Maggie) had a litter of puppies and, though I'm a cat person, I ended up with one of the those puppies - guess my defenses were down. But I've always thought she helped during treatment. Since then I've added another dog (Mandy, MacGilly's full sister but from another litter - both mini. schnauzers) and a cat (and now my boyfriend's crazy cat) so I have a housefull of pets - keeps things lively! Give that dog of yours a big hug - best thing about them is they don't treat you any different after cancer.

Heidi

jana11
Posts: 708
Joined: May 2004

Hi and welcome. I had all your chemo, except the avastin. I am interested though, because I didn't get avastin when I had a single lung met because my docs said it wasn't necessary for me... hmmmmm. BUT... I have been NED (no evidence of disease) for 14 months.

After my surgery my appetite went WAY down!! I think after colectomy - there is inflammation and your body can't handle lots of food. I simply ate Lots of little meals. My family would frequently come to visit and cook up lots of food with healthy fats.

Good and bad, it took about 2 years total, my weight is up. After I completed my last chemo round of xeloda and oxaliplatin, my weight increased within 2 wks to my heaviest. All my docs said I finally looked healthy, I just felt chubby. I have been trying to exercise lots and loose some pounds, the healthy way.

I had to keep snacks in my pockets and try to eat all the time. I had diarrhea, so I couldn't eat nuts or high fiber foods - difficult for me.

Stay well. Hope all the stories help you. YOU ARE NOT ALONE!!!!!!! jana

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network