The Colon Club

Hi jep,

The original plan was to have colon surgery, liver surgery, then chemo. However, there were a couple detours along the way. A secondary colon tumor was found after he had a left hemicolectomy. He went to Mass General for a combined sub-total colectomy and liver resection but the liver portion of the procedure was aborted while he was on the operating table when the liver surgeon saw that one of his two liver tumors was too close to a blood vessel to be done laparoscopically. The subtotal colectomy was completed (to do both under a converted open surgery would have been too much). So the plan was revised to do 4 rounds of chemo (6 weeks post subtotal colectomy), and then do the liver surgery. If the problematic tumor shrinks enough to do done laparoscopically, then that's how it will be done. Otherwise, he'll have open surgery. This will be a month or so after his 4th round of chemo which is scheduled for December 13.

On a side note, interestingly, the original tumor taken out in May (descending left colon) was the primary tumor. It had spread to 9 out of 54 nodes. The other tumor (T1) removed six weeks ago, at the juncture of the right and transverse colon, had not even become a T2 tumor, hadn't invaded through the colon wall, and no lymph nodes were cancerous. This means that his cancer essentially was/is a LEFT side cancer, which has different properties from RIGHT sided colon cancers.

mpbser wrote:On a side note, interestingly, the original tumor taken out in May (descending left colon) was the primary tumor. It had spread to 9 out of 54 nodes. The other tumor (T1) removed six weeks ago, at the juncture of the right and transverse colon, had not even become a T2 tumor, hadn't invaded through the colon wall, and no lymph nodes were cancerous. This means that his cancer essentially was/is a LEFT side cancer, which has different properties from RIGHT sided colon cancers.

Hi Mpbser,
I hope your husband responds well to chemo and his surgery scheduled for December goes smoothly too. I can't comment much on Oxi because I only received two treatments of FOLFOX back in January. My onc believes that I am allergic to one or more of the components since I ended up in the hospital after both treatments (the second one without pump, just 14 days of oral Xeloda)

My primary tumor is left descending colon at the splenic juncture and I have liver mets too. I had no idea that left and right side colon cancers had different properties. Would be interested in learning more about that. My tumor is still intact, I was advised not to have surgery prior to chemo shrinking tumors so I have no idea about node involvement which is kind of scary based on what I have read. I recently asked about removal and resection possibilities and was told that it wasn't advised unless I could shrink the liver mets enough to remove them. Tomorrow is my 10th infusion of Irinotecan which was added to Erbitux at the end of July 2017 and my last scan in September showed good results. I just wish I had a goal date to reach but so far it seems to be an endless road which I guess is okay too since that means treatment is working.

Best of luck and good wishes to you and your husband,
Shana

mpbser wrote:I didn't see half of these messages yesterday for some reason.

Tupelo honey, what supplements did you take? I saw your comments a while back on the What Supplements Do You Take? thread but I would really appreciate it if you could repeat here. Thanks!

I know it's been officially discounted for a long time but to try and address neuropathy, I did the old school magnesium and calcium before each chemo session: 1 gram each orally 1 hour before. I was already taking magnesium anyway so the calcium was an easy add, good for women of my age anyhow.

More modern, I did 1-2 grams of l-carnitine (viewtopic.php?f=1&t=53232&p=422426&hilit=Carnitine#p422426) and 15-30 grams of glutamine starting 2-3 days before the Oxi infusion and continuing for several days after (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385273/) ( http://www.livestrong.com/article/54231 ... europathy/). I also took 100 mg of B-6 daily to try to address hand foot syndrome from Xeloda.

I never had any hand foot syndrome at all. And, while I did experience cold sensitivity, first bite syndrome, twitchy eyelids, and burning arm pain (no port) for a few days after each session, and did develop numb finger pads and crampy toes appx 2 months after finishing the last dose (which faded over the next 3 months) I have no residual side effects now. I can't say whether the supplements were contributory or whether I was just lucky. Sometimes, I worry that something that minimizes side effects may also be minimizing effectiveness but I'd probably do it the same way again, since the outcome was good.

First bite for me too. If I wait even an hour since last eating anything, it comes back. Mine is very painful but I've learned how to not create so much pain. I let the food rest on the back of my tongue for a bit. Only creates a little first bite pain. I move it from one side to the other and it helps to ease into actually biting down. After that first one is down, I can continue as normal. If I forget and just bite down...Oh My Lord!

Totally did the same to lessen pain from first bite.... I kept telling my Onc about it and he kept saying he has never heard of it. So my mom kept cooking food in various temperature (cold, less cold, room temperature, warm, hot) nothing would work So I did what you did eventually... it worked just fine, just let the food stay there without chewing and then chew very slowly would do the trick.

The part that bothered me was when Xeloda brought me nausea and made me vomit, that's when first bite really kicked my butt. All fine now, no issue. If I have the choice to choose again now, I'd choose Oxi again.

I had first bite as well when I was on folfox and found that as long as I remembered to take the first bite slowly and lightly it wasn’t too bad at all. The first few times I would forget and it would be painful but after a couple treatments I would remember all the time and not have too much issue.

Thanks for these comments. Husband's appointment is in three hours. I have a meeting with a client and will be joining him a couple of hours after he arrives. He gets nervous as hell at every doctor appointment and his BP spikes to hypertensive crisis levels. (It was insanely high on Friday before the port placement.) I hope that he is ok today and doesn't have a heart attack or stroke as a result of the stress. :/

So far, the only issues he has had with the Oxi infusion are some very slight jaw pain and extremely high blood pressure (some reads were in the hypertensive crisis range, over 200/100). They gave him IV steroids among other meds so he could just be experiencing high BP as a side effect to those (very common side effect of steroids). His nurse called his cardiologist and got a prescription for an additional BP med which he took when we got home. He has to see his cardiologist on Friday.

Day 1 of Xeloda beings tomorrow.......

Just to chime in .....
I was in fact ... de facto .... Stage IVa as my lung met was nicely incubating while we dealt with the primary

I chose neoadjuvant chemoradiation with Xeloda, resection, then adjuvant Xeloda ... as a presumed Stage IIIC with pCR

When the "lung met" was discovered 2+ years later, I threw everything at the wall and did 12 cycles = the dirty dozen of FOLFOX in 2010
So far = so good

BTDT so I would say :

THROW everything you can at the beast
and nuke its ugly ass back to the last millenium !!!!!!

JMO

Cheers and Harmony
CRguy

Thanks, CRguy.

Tupelo honey,

Did you speak to your oncologist about the l-carnitine supplements? I am wondering because I am reading about Acetyl l-carnitine (this appears to be the recommended form for neuropathy, not the l-carnitine form) and it's an antioxidant that increases ADP production. I've read that antioxidants may interfere/counteract chemo and they should be avoided while having treatment. What did your oncologist think about this?

mpbser wrote:Thanks, CRguy.

Tupelo honey,

Did you speak to your oncologist about the l-carnitine supplements? I am wondering because I am reading about Acetyl l-carnitine (this appears to be the recommended form for neuropathy, not the l-carnitine form) and it's an antioxidant that increases ADP production. I've read that antioxidants may interfere/counteract chemo and they should be avoided while having treatment. What did your oncologist think about this?

It was Acetyl l-carnitine I used - I checked amazon order history.

My oncologist was pretty laissez faire about all of my supplements. He was aware of all of them (we went over the whole list at every appointment) and he did not speak against any of them (UTSW-DALLAS) I was told to avoid curcumin simultaneous with xeloda by the pharmacist- to make sure the doses were separated by a couple of hours. I did avoid other antioxidants as a general rule during chemo and I usually took lower than the recommended amounts and not for the full time of treatment....- as mentioned< I used the carnitine and glutamine for appx 5 days surrounding the actual infusion session - partly cause the glutamine was kinda gross, I'll admit . And did not use it at all for the next two plus weeks till the next session. I also used curcumin for just first three months of chemo and dropped it entirely the last half, as it is a reputed antioxidant too.

It is SO hard to know the right thing to do, esp with the supplements. I just tried to cover my bases by reading, reading reading, analyzing the best I could and splitting the differences and crossing my fingers and praying

Thank you very much for the reply, TH.

I didn't consider that for the curcumin, spacing it out from Xeloda dose. I will definitely make sure husband does that.

His oncologist never spoke to us about supplements, only his nurse did. The only thing she said was to avoid CoQ10 if his RBC counts drop. She also was a bit skeptical about any herbal supplements, only said that there hasn't been sufficient research on the combination of chemo with them.

We've stopped graviola, milk thistle, and his extra vitamin C (just taking a multi vit daily now so that's where he gets C) but continued everything from before. I will be buying glutamine and acetyl l-carnitine for him to start taking soon (2nd round, too late for this week) and a wonderful product I used many moons ago to do my own healing: Liver Cleanse by Nature's Secret, for when he is done with his pre-liver resection chemo. I have plenty of b6 and b12 lying around which I think I will add for his 2nd round, too.

I did not recall Acetyl L Carnitine being an antioxidant; and just checked. I do not find that it is.... Alpha lipoic acid is, which I did not take.

I was a bit more concerned about the calcium magnesium combo, as it's been a little controversial. It used to be a standard part of treatment based on a study showing it reduced neuropathy but it's been pretty much discounted as being effective against neuropathy and one study then seemed to show it reduced chemo effectiveness. Then that study was discounted. Perhaps it really was a zero sum game as the general consensus (and my oncologist) has it nowadays but I'd been taking magnesium and calcium anyway so I upped it to the old doses of 1 gram (1000 mg) of each immediately prior to infusion on the day of chemo only.

Prob more effectively, I used the ALC and glutamine from a day or two before infusion to a few days after - prob 5-6 days each cycle. I usually took 15 grams of glutamine powder mixed in water twice a day and 2 - 500 mg pills of ALC twice a day. Plus 100 mg of B6 to protect against Hand Foot Syndrome, which I never got.

I do recall that I heard / read any antioxidants were counterproductive to chemo, as they may "protect" the bad cells from intentional damage by the chemotheraputic agents, whose job it is to damage the "bad" (cancer) cells. I did avoid vitamin C in supplementation form.

I don't know whether any of this truly makes a difference, or just helps give us a sense of control during a frightening time. I'll also say I 100% believe there is no 100% one-size-fits-all solution and everyone's causes, treatments and results are going to vary based their individual biology and genetics.

But so far, my outcome has been good and I'll take it. I'm not far enough out from treatment to comment about the overall effectiveness the other ones I took more for their "anti-cancer" (Curcumin, PSK, Celixicob) and "anti-metastatic" (cimetidine, modified citrus pectin) properties but for the above mentioned four I took specifically to address potential neuropathy, whether I was just lucky or not, I can state it 100% worked and I am one of the lucky ones with no lingering symptoms.

Just an FYI to those looking at alternative meds/supplements etc. :

mpbser:
the product Liver Cleanse by Nature's Secret has licorice (Glycyrrhiza) which has been long known to mess with cardiac function, promote hypokalemia and hypertension ... just to name a few concerns which would be relevent to your husband.

I would suggest those folks adding alternatives to their medical regimens ( either for selves or loved ones )
1. Find an Integrative cancer practitioner in either the MD realm or ND who is knowledgeable in true INTEGRATIVE MEDICINE
2. do your own research about possible and likely adverse issues from MANY independent sources ... not just suppliers
3. have a discussion with your medical team and keep them in the loop as to what you are taking while you are on other meds.
4. Be very cautious of online purchases from ANYWHERE ... including Amazon or supposedly legit "online" pharmacies

JMO.... been doing this for 36 years, and we've had this topic discussion many times in the past.
You are welcome to read my bio and rantings elsewhere on forum BUTT I offer a couple of references which I have used and do use

Natural Medicines Comprehensive Database
The Side Effects Bible: The Dietary Solution to Unwanted Side Effects of Common Medications
Herbal Contraindications and Drug Interactions: Plus Herbal Adjuncts with Medicines
Herb Toxicities & Drug Interactions: A Formula Approach

Additionally I check drug sources regularly for any listings/warnings at HC or FDA and get updates from Securingindustry.
I refuse to use anything sourced/produced/packaged in mainland China, whether it which purports to be "traditional medicine" or otherwise.

If I won't use it, I won't give it to my patients = WORD !

YMMV
Best wishes
CR

Thanks for the input, CRguy. We won't be doing the liver cleanse until he's finished with chemo. His congestive heart failure and cardiomyopathy has actually gone away per his last visit with his cardiologist a month or so ago, so his heart issues are not as critical as they once were.

I also eliminated green tea extract from his regime as of today now that I read https://www.mskcc.org/cancer-care/integ ... reenTeaCTA Unfortunately, I just saw that this morning. He did take it throughout his first cycle because the oncology nurse never said anything about stopping it and I did list it when we spoke.

He's in the middle of his week off between cycles right now and starts Cycle 2 on Wednesday. So far, the only side effects he has experienced has been some fatigue, some mild face swelling - nothing major like I saw on the day of his Ox infusion on Day 1/Cycle 1 - and some anal burning. The butt discomfort only came about in the last couple days of Cycle 1 and resolved with these days off. I think it's great that his body has some time to heal otherwise I can imagine that impact upon impact upon impact on that delicate, sensitive tissue would lead to worsening and perhaps worrisome burning.

I'll be updating when we get to Cycle 2.

I'm glad that your husband is doing better and clearing away the heart issues must be a big relief. I didn't read the Green Tea link but I guess I'll drop it from my regimen (my wife encourages and it generally has a good reputation).