newcomer

[lohidoc]

Well, yet another newly diagnosed victim.... I am a 56 year old male, physician actually, always been healthy and like most doctors ignored my own symptoms for what may have been years! Diagnosed with stage 3c colon ca, involving coecum and ascending colon. Had my surgery on July 25, 7 out of 23 nodes positive, complete resection with clear margins, tumour grade poorly differentiated to undifferentiated, no evidence of distant spread according to CT, normal CEA levels.
Recovered well from surgery, went home after 48 hours and once my bile salt diarrhea was under control with cholestyramine recovered well. So, 2 1/2 weeks after surgery am recovering well, eating like a horse and pretty much back to normal activity although I still tire easily.
Meeting my oncologist tomorrow, obviously will need chemo but not sure what he will recommend. Questions at this time: the chemo and its side effects. Obviously will be gruelling but no choice but to go through it. I'm a pretty eccentric type of individual (not your usual MD by any means!) and am considering cannabis as a way to mitigate Rx side effects - anyone have any experience? Also concerned about nutritional supplements - they took part of my ileum as well.
Great forum btw, I will likely become a regular participant!

[KarMel]

Hello, and a bittersweet welcome to our club. No one really wants to be here, but after a while, this started to feel like another family for me.

There is tons of very good information here...what the doctors dont tell you

My guess is you'll probably be offered Folfox and Avastin. Folfox is combo of oxalplatin, 5 FU, and leukovorin. I have not tried Cannabis, though I imagine some of the members who have tried will speak up. I did Zofran, either tablet or ODT. Occassionally used Phenergan, but after a few months, I was getting some extrapyramidal symptoms from that, so I quit. Pre-treatment with IV Decadron helped also, with nausea.

Your biggest concern, besides the nausea and fatigue which last about 5-7 days, will be neuropathy. I had to quit one round early because of that. I still have a small amount of residual neuropathy in my finger tips. Depending on your specialty, if you do a lot of procedures, like surgeries, IV's, taps,then the neuropathy can be an issue. Sometimes, even holding a pen or pencil was an issue. Or trying to pick up something small, like a paper clip. You'll know as you progress.

If you have more questions after seeing your onc, please come back. This whole experience can seem surreal some days. It's so reassuring to talk to others who are on this same journey.


Peace

[Surroundedbylove]

A welcome to the board - sorry you have to be here but it is a great resource of others going through the same thing or those of us who have been through it already.

Your onc will probably suggest either FOLFOX or XELOX. I doubt that they will suggest Avastin for stage 3 - usually it is reserved for stage 4 and from what I understand the testing didn't show any improvement when used with stage 3 disease and it does have its risks. In terms of FOLFOX and XELOX the side effects can be similar but not always the same. For example, my white counts dropped dramatically on the 5FU but on Xeloda I had slow declines so it was much better for me. The hand/foot syndrome can be worse with the Xeloda though. If Xeloda is recommended/offered and you are interested in it rather than the 5FU, you may want to look into the Georgetown University protocols - some innovative dosing to minimize side effects without reducing efficacy. I also had innovative dosing of my oxaliplatin - weekly to minimize side effects but still be able to get maximum dosage to tackle the cancer.

In terms of nutrition, I worked with a registered dietician. My onc did NOT want me to take supplements of any kind during chemo because of the interaction with the chemo. I had a temporary ileostomy so did have some concern about nutritional absorption but came through it fine. For about one year post chemo I needed monthly B-12 shots but that was all.

If they haven't tested your tumor sample for MSI you may want to ask for that - and also KRAS status - just to have the information in case anything ever happened to your tumor sample.

In terms of nausea - others on the board have had good results from cannabis and I know people who have been treated for pancreatic cancer who have used cannabis successfully for an anti-nausea treatment. My friend who used it found the brownies with it baked in as the most effective method. I was able to manage the nausea in the end with a combo of compazine, ativan, zofran, and Emend. Some use Kytril successfully. Ginger chews also were very helpful as was mint herbal tea.

Just some preliminary thoughts - welcome and keep asking questions - this is a wonderful group to share information.

[SkiFletch]

Welcome to the board, sorry you have to be here. Having had the same surgery as you initially, I can say that nutritional concerns should be non-issues for you. Not a lot of nutrients are absorbed by the last few inches of your cecum and I haven't had any trouble in that regard post-surgery. In fact, my bowels function pretty normally provided I get enough soluble fiber

[jgall]

Welcome to the club no one wants to have to join

I can tell you from my husband's experience, he wouldn't be able to get through chemo anymore if it weren't for accupuncture and cannibis. He tries to schedule the accupuncture within a day or two of chemo. Lately he'd been getting it on the same afternoon. The accupuncture really took care of most of the nausea and side effects, but when it "wore off" he'd go for the cannibis. Incidentally, he found the side effects quite tolerable until about round 4 or 5 and then started seeking out ways to help.

He also tried massage therapy, but in his words he said it was a nice diversion but he didn't think it gave him any long lasting results so he stopped going. He also did some aromatherapy which consisted of some aromas on a little cotton ball in a plastic baggy. One was ginger, the other was mint. It would give him a bit of immediate relief if he felt like he was going to hurl, but it wasn't long acting. Once he found accupuncture, he gave up pretty much everything else except the cannibis, and occassional ativan for the anticipatory nausea that came the day before chemo.

Good luck, and we look forward to hearing from you more.
Julia

[Bev G]

Hello and welcome to the board. I'm sorry you needed to find us, but glad you did and expect you will be, too. If you are the type of doc that depends on fine motor skills I would strongly encourage you to talk with your onc about going on FOLFIRI (Irinotecan and 5FU/Xeloda) instead of FOLFOX (oxi and 5FU). The side effects are different (more GI stuff and a little hairloss with FOLFIRI, but not neuropathy that inevitably accompanies FOLFOX). When I was diagnosed my onc said she absolutely would not give me FOLFOX because I had very minimal diabetes-related neuropathy, and she said it would significantly worsen, permanently on the oxi. So, only you know how neuropathy would influence your practice, but FOLFIRI is a perfecty acceptable 1st line chemo, so maybe you'll want to think about it.

I had terrible, chronic nausea, even before the chemo. The only oral med that helped was Zofran. I also got Emend with each round. I did NOT take Decadron because it messed with my glucose levels too much. Ultimately, the thing that helped most was cannabis. Within one minute of inhaling it just a couple of times I had excellent relief of the nausea. While the relief only lasted for about an hour, if you're really nauseated, even an hour of relief is wonderful.

Good luck to you. We're always here if you need support, encouragement, advice or a joke.

Best wishes, Bev

[lohidoc]

Thanks all for replying. Saw my oncologist this morning. Will be starting folfox next week, less than 4 weeks after surgery, through a pict line. I sure am living in a different country now.
Thanks all for info on marihuana, sounds this may be worth a try. I am originally Dutch, so no stranger to this although I haven't smoked any pot for 25 years. But symptom relief seems to be well documented in at least a number of patients on chemo, and if I am going to feel miserable I may as well be stoned and miserable. Only problem is where to get the stuff, I guess I'm going to have to hang around the rough side of town.
And yes, I do work in a surgical speciality which requires dexterity so the neuropathy will be an issue. However, I have a good disability insurance and quite frankly work takes a back seat at this point.
Thanks again everyone, stay in touch!

[Russian27]

Welcome Doc and sorry you had to join us. I had 6 months of chemo (12rounds) FOLFOX plus Avastin (Avastin because I am stage IV ). I experienced minimum side effects. Couple times I was very tired and slept for three hours during the day, couple times had bronchoconstriction after physical exercise (oxaliplatin side effect). Otherwise it was not very hard. I hope you will have even better experience than me.

[BrownBagger]

Welcome.

I had Xelox, which is oxi and Xeloda. I also had radiation and Xeloda and Xeloda all by itself. In all three instances, I used a combination of exercise, ginger (tea, mostly) and cannabis to control nausea, stimulate my appetite, make my music sound better, etc. They gave me a script for Compazine but after taking it twice, I decided it was worse than the chemo. It just cut me off at the knees and I had no energy.

As Bev said, pot is very effective and has no negative side effects, other than perhaps a little paranoia from time to time. I recommend that you get a vaporizer, which uses an electrical heating element to vaporize the drug out of the dried plant residue. It's a cleaner high, and there are no carcinogens because there is no smoke. Plus, your stash will last longer; you can use it in a hotel room, no stinky pipes or roaches to deal with, etc. You can research and buy vaporizers of varying quality and cost online, or at your local head shop. I bought the best one I could find for $180.

Above all else, I credit vigorous exercise for helping me get though chemo with a minimum of problems. Heck, it's getting me through this whole ordeal--psychologically as much as physically. Endorphins are about the best all-around medicine I've used. Cannabis is probably a close second.

[tammylayne]

Welcome to our little group. Lots of geat tips posted...lots more to come...yours for the asking!

Ask anything and everything...you will soon see that nothing is taboo, we are a unique bunch!

Sending you lots of positive energy on your journey....

Tammylayne

[lohidoc]

Welcome.

I had Xelox, which is oxi and Xeloda. I also had radiation and Xeloda and Xeloda all by itself. In all three instances, I used a combination of exercise, ginger (tea, mostly) and cannabis to control nausea, stimulate my appetite, make my music sound better, etc. They gave me a script for Compazine but after taking it twice, I decided it was worse than the chemo. It just cut me off at the knees and I had no energy.

As Bev said, pot is very effective and has no negative side effects, other than perhaps a little paranoia from time to time. I recommend that you get a vaporizer, which uses an electrical heating element to vaporize the drug out of the dried plant residue. It's a cleaner high, and there are no carcinogens because there is no smoke. Plus, your stash will last longer; you can use it in a hotel room, no stinky pipes or roaches to deal with, etc. You can research and buy vaporizers of varying quality and cost online, or at your local head shop. I bought the best one I could find for $180.

Above all else, I credit vigorous exercise for helping me get though chemo with a minimum of problems. Heck, it's getting me through this whole ordeal--psychologically as much as physically. Endorphins are about the best all-around medicine I've used. Cannabis is probably a close second.

Thanks brownbagger and russian. I am a big exercise/outdoors person, live in the bush in Northern Ontario and am determined to keep up my physical activity. I'm just concerned about my cold intolerance when the temperature here drops to -30C!

[BrownBagger]

Well, at those temps, all bets are off.

Actually, I live in a pretty cold place and I really don't recall having big problems. Once you start to exercise, your body warms up and the cold sensitivity starts to go away. Just don't drink anything cold. A Camelback under your layers and near your skin is a good way to keep your hydration nice and warm. That helps a lot. I found that if you put your gloves and balaklava and other crap on before you go outside or hop into a cold car, you'll be OK. Once you let the cold "burn" your skin, though, it takes awhile even a room temps for it to recover. I have a 60-mile drive to work. If I didn't put my gloves on until after my hands were cold upon leaving the house and driving the car, they wouldn't warm back up until about Mile 50--and that's with the heater on full blast.

So, planning pays off.

[jens22]

Doctor..I'm sorry that you have to go through this. Now it's time to be a patient. We is health care know and read too much. Chemo was no where near as back as I ever thought it would be. They have meds for every side effect. you will learn so much moreof this journey. It will truelly influence you practice. Canibis???? I wish I had used it...but I don't think having the munchie is that good after a colon ressection. You will get through this. Positive energy coming your way.

[nicola smith]

Thanks all for replying. Saw my oncologist this morning. Will be starting folfox next week, less than 4 weeks after surgery, through a pict line.!

Hi Doc, I am going to welcome you with a longer reply later but I just wanted to comment on the fact that you are having a PICC line for chemo.

Here's my 2 cents. Don't!

I had a PICC for about 10 weeks and it was used for my first chemo (it had been inserted owing to an ileus post op). That darn thing itched like hell, was always getting in the way, and a source of comments and stares unless I wore sleeves all the time.

I think you will find that a port-a-cath is so much superior in terms of how it treats your body and sheer convenience. There's a long thread here on just that topic that will let you know how people here feel about the choices either way.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=24924&hilit=picc

Talk to you later

[BrownBagger]

I was given the option of a PICC line (the head infusion nurse strongly recommended it), but I did some research, including checking with people here on CC, and declined, electing instead to take 4 rounds of oxi in my arms. It hurt, but the prospect of walking around for 3 months with a hose hanging out of my body was not something I was interested in. If I do any more infusible chemo, I'll get a port. I don't want to risk damaging the veins in my arms again--they're actually still quite nice and they come in handy in the (ongoing) treatment environment.