Any advice appreciated..... please

[Marylandmaniac]

I take supplements and work out (except for my infusion day and the following 3 days). I take vitamin D3 (6k iu's), turkey tail mushroom (order it off Amazon.....NIH has done studies on it that show promise), modified citrus pectin (also Amazon and I love the lime flavor) and Cimetidine (supposedly helps prevent mets). I cleared these with my doctors and I get blood work each week.

I would just add that the dose used to gain favorable results with the turkey tail mushroom supliment (Coriolus Versicolor (PSK)) is 2600 to 3000 mg per day. The capsules come in 500 mg from JDS Naturals, I take 3 in the morning and 3 at night. There's some good research on this available. It's also called Krestin in Japan. I've seen no side effects. Like Maryland Maniac said, you will need to check with your oncologist before taking any vitamin or supliments because there could be interactions or it could interfere with the mechanism of your chemotherapy drug.

Great point KElizabeth. I know NIH did a study that found up to 10 g a day was safe but I don't go that high. I wish more American doctors would look into this. I am going to a seminar at Georgetown on December 1st called "Curing Gastrointestinal Cancer: Research, Treatment and Collaboration. I am hoping they talk about new treatments and ways to fight this. I will post what I learn on here.

[Marylandmaniac]

MarylandManiac,

No surgery date yet. I go for my 19th chemo on Tuesday and I see the onc so I will be bugging him about it . I am currently waiting for them to schedule my next MRI. Once that is done I will get an appointment with the surgeons to start planning. My surgeon said it would take some time to get the surgery set because they have to get a heart lung team for me in addition to the liver surgeons I will have since they will be putting me on bypass. I'm hoping it doesn't take too long, the surgery is my chance to be NED. I would be on the operating table tomorrow if they told me to.[/quote]


Wow that is such great news!!! It sounds like your move was a huge blessing because it sounds like these doctors are doing a better job. Hopefully 2017 is our chance to be NED for many years to come!!!

[ebv60]

Welcome, a lot of good advise on this site , through out your treatment you are going to get a lot of "paper work "from the Dr. (blood work, scans, reports etc.) Set up some way to file this information , either on the computer or some type of a notebook so as you have it available for you to refer back to as needed

[BeansMama]

MarylandManiac,

No surgery date yet. I go for my 19th chemo on Tuesday and I see the onc so I will be bugging him about it . I am currently waiting for them to schedule my next MRI. Once that is done I will get an appointment with the surgeons to start planning. My surgeon said it would take some time to get the surgery set because they have to get a heart lung team for me in addition to the liver surgeons I will have since they will be putting me on bypass. I'm hoping it doesn't take too long, the surgery is my chance to be NED. I would be on the operating table tomorrow if they told me to.

Wow that is such great news!!! It sounds like your move was a huge blessing because it sounds like these doctors are doing a better job. Hopefully 2017 is our chance to be NED for many years to come!!![/quote]

I hope so for both of us! The move was definitely a blessing, my new team is amazing!

[skipdow]

Thank you all for so many helpful suggestions.
I'm just getting started on trying to understand what I'm going thru and am determined to do whatever that is in my power to improve my odds of beating this.
I had my meeting with my onc and he said the pathology on my removed piece of colon showed it to be slow growing BUT cautioned me to not put too much faith in that until my second CT scan to show any changes between them. He said THAT will be a more accurate indication of how fast it is.
Monday I get a port put in and then my second CT scan a few days after that.
My chemo will be Irinotecan, fluorouracil(5fu), leucovorin and bevacizumab given by IV on first day with a 46hr infusor of fluorouracil.
They are omitting the bevacizumab for the first two cycles because of my recent (5 weeks ago) lap surgery
This diagnosis has focused my concentration like never before and finally put some of my college chemistry and biology to use (tho it is limited)
I have buried myself in researching best ways to get thru the chemo and am so far determined to do a short term fast. 48hrs before-during chemo-and 24hrs after total 5 days
At this point my weight is in a healthy area so I have the reserves and strongly feel committed enough that I KNOW I will do this at least the first cycle and then reassess after each one to decide if I should continue. Obviously if my weight plunges or blood numbers tank then that will also veto it continuing.
My onc prescribed three meds I believe for side effects and after reading up on one (dexamethasone) I am concerned it will totally defeat my benefit of fasting by raising my blood sugar plus it increases appetite which I don't need while fasting.
I will talk to my onc and pharmacist monday to see if they feel its necessary .
I also found some research and patents for using meds to keep glucose levels low while not fasting and building weight back up that may continue to strangle my cancers growth.
sorry if this is too long but figured there may be someone here who has bumped into some of this info and may know more than me.
Also I am clearing everything that I plan to do or put into my body with my healthcare team first.

Thank you again for your help and a massive thank you to whoever started this site. It gives me Hope

[BUD2016]

Hello skipdow,

can you please forward any information you have on fasting during/before/after chemo? I have also heard and read in the past that fasting helps with delaying mets progression. If you could kindly share your experience with fasting over your chemo, it will be very much appreciated.

My mom starts chemo on Monday with 48 hour in patient observation in hospital due to age/prior conditions, etc

We had a bit of a crazy roller coster ride from T3N0 surgery pathology (2016/10/04 surgery) to 1 liver met to 6 liver mets over the course of 1 week (CT + PET/CT). FYI - in the signature.

Thank you

[CRguy]

My onc prescribed three meds I believe for side effects and after reading up on one (dexamethasone) I am concerned it will totally defeat my benefit of fasting by raising my blood sugar plus it increases appetite which I don't need while fasting.
I will talk to my onc and pharmacist monday to see if they feel its necessary .

the dex has an antiemetic effect and until you know how the chemo will affect you personally, you would do well to listen to your Onc and Onco Pharmacy experts ( I would not just go to the corner drug store for this chemo advice. You need someone who is an Oncologic Pharmacist i.e. at the cancer center. ) JMO

Once you have a baseline then by all means fine tune things with your Oncologist. It is likely that you also have 2 other antiemetic / antinausea medications as well.

Also I am clearing everything that I plan to do or put into my body with my healthcare team first.

See my prior comment ! ... excellent idea !!!!! ... just make sure that your Oncologist is one of them.

Thank you again for your help and a massive thank you to whoever started this site. It gives me Hope

Our history begins with Founder Molly's Welcome to The Colon Club!

One of our members here has compiled DK37 Science Posts List including one about fasting Citizen Science: Reporting of FASTING and Chemo Results which may be of interest to you as well.

See if there is anything in my first reply you wish to follow up on HERE
or my ongoing rant while on chemo a few years back : Hi I'm FOLFOX...how do you like me so far ?
which will go through my plan to decrease the dex to a minimal effective dose.

Cheers and best wishes
CRguy

[skipdow]

Thanks CRguy for all the info. I'm reading thru your Folfox post now(only on page 4 sofar) and already learning more than I ever got from my chemo class they gave me at Abbotsford cancer center.
And yes any changes/additions/subtractions to my treatment I am consulting with my onc and the pharmacist AT the cancer center.
I also went to an info meeting in vancouver at Inspire health BC that seemed really interesting.
They seem to be a great add on to the basic medical treatments with emphasis on nutrition , exercise , relaxation methods and can provide extra consulting with an MD and dieticians for answering some of the questions you may have not thought of while in your onc or md's office.
The other two meds I am suppossed to get are Ondansetron and Metoclopramide.
When I am released from my forum training wheels stage I may send you a few PM's to ask you a few questions or get your recommendations from a lower mainland BC perspective.
Thanks

[CRguy]

Yes, PM or post for more info anytime !

I also went thru the full Inspire Health 2 day LIFE program,
which may be semi-documented in the Colorectal Canucks topic I linked in my first reply.
They are a great addition to the regular medical care we get thru BCCA, have an online component and are funded thru BC Medical for the most part.
I think it is a great idea to be in contact with them.

I will send you a PM and let me know when you can reply ....
should be soon !

The main thing with the other 2 meds you mention may be a tendency towards constipation
SO always remember that doses can be modified and meds changed if you keep the Oncs in the loop about your side effects and problems

Sending best wishes for your Journey at the Abby Center
Cheers
CRguy

[NateA]

What Crissy said!

[Stewsbetty]

Thanks CRguy for all the info. I'm reading thru your Folfox post now(only on page 4 sofar) and already learning more than I ever got from my chemo class they gave me at Abbotsford cancer center.
And yes any changes/additions/subtractions to my treatment I am consulting with my onc and the pharmacist AT the cancer center.
I also went to an info meeting in vancouver at Inspire health BC that seemed really interesting.
They seem to be a great add on to the basic medical treatments with emphasis on nutrition , exercise , relaxation methods and can provide extra consulting with an MD and dieticians for answering some of the questions you may have not thought of while in your onc or md's office.
The other two meds I am suppossed to get are Ondansetron and Metoclopramide.
When I am released from my forum training wheels stage I may send you a few PM's to ask you a few questions or get your recommendations from a lower mainland BC perspective.
Thanks

Hi skipdow,
Fellow bc'er here though I hail from the north. I wrote you a note the other day but after it deleted 2x I gave up. I am interested to see how the fast thing goes for you so please keep us updated. I have the same 3 prescriptions as you were given. I used the metoclopramide during two cycles but I found that it made my diarrhea worse. I got a letter to use cannabis oil and now use that as needed for nausea. I tend to be constipated the 3 days on the dex and then enter the diarrhea phase for a few dAys. I take a multivitamin and calcium supplement those days to try and firm things up. Make sure that you are keeping up your fluids as it is so easy to get dehydrated especially if you have issues with diarrhea. 5fu side effect. Anyway, sorry for this journey that you have to take. I wouldn't wish this on anyone but it has definitely worked some good things into my life.
Best of luck.

[teri3]

Hi! I just wanted to say welcome to the group and sorry about your diagnosis. You have found the place to be. I have found so much good advice and encouragement on this site. There is a lot of hope to be found here. Good luck and hugs.
Teri