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Anyone have this treatment ? Added Cimetidine question

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

I read some good things about Capecitabine-Avastin-5 fluorouracil as treatment for colorectal cancer that has spread . Anyone have this combo and have info on it like side effects caused how well it worked and for how long ? Just trying to read up on treatments for questions at next onc appointment.

 

Also reading alot about cimetidine anyone know if it's good to take for stage 4 rectal cancer ? Does anyone believe there is a beneifit to taking this ? 

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

I'm sorry I'm not able to help you.  There are some on this board that have more information on certain treatments, and mine was pretty standard protocol.

Kim

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Google the names, and get the names they are sold as and maybe others will know more about the treatment.

myAZmountain
Posts: 399
Joined: Apr 2018

Avastin is supposed to prevent formation of new blood vessels --I had it and it caused heart arrythmias, Hypertension. It was pulled off the market by FDA for use in breast cancer in 2011. 5Fu is the old tried and true chemo drug that has been around since early 1960--they just keep reinventing ways to deliver it (Iv, slow release capsule etcl) so they can repatent it.  Sounds like the standard treatment for advanced GI cancers. I would never take Avastin again, but that is completely my own opinion.

worriedson714's picture
worriedson714
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Joined: Dec 2019

This is good info all those problems and did it even work ? 

 

NewHere's picture
NewHere
Posts: 1332
Joined: Feb 2015

As myAZmountain mentioned it is pretty standard and that is what is does.  I had FOLFOX then FOLFORI with Avastin.  I was able to handle Avastin but it did raise my blood pressure and HR somewhat.  Nothing outrageous, my normal BP is 110-120/70-80.  It pushed my systolic up to 140 while on treatment, though it returned to normal.   It also increased my resting HR up, it has come back down, but not quite all the way. My resting rate is around 55-60, was lower.

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

I have read your story you have been threw alot so are there any other chemo drugs you have had work well ? My dad's rectal cancer seems to have spread to the abdominal lining there talking lifelong chemo . So just trying to pick your brain a little so I can ask questions to the onc if he does end up on lifelong chemo .

NewHere's picture
NewHere
Posts: 1332
Joined: Feb 2015

I have been on three chemos so far.  The following is a broad stroke overview.  There may/will be differences based on type of CRC, location, etc. 

 

The "first line" treaments are FOLFOX and FOLFORI.  They are usually used pre-op to srhink tumors or post-op to clean up any stray cancer cells that are out and about in an effort to prevent recurrance.  There are no guarantees about how well they will work.  Some people get lucky and never have cancer again.  Some (like me ;) )  not as lucky.  Each of these drugs have side effects.  Some people have them worse than others.  I have done pretty well overall with the side effects.  The FOL part is 5FU.  Which has been around awhile and in different forms.  The OX is Oxaliplatin (in FOLFOX) and Irinotecan (FOLFORI).  Other drugs, like Avastin, may be added.

While the first line treatments are used to hopefully cure/prevent recurrance, "second line" etc are used more to stabllize or slow the growth of cancer.  

Usually a chemo (first or second line) will have a limit for how long it works in the cases where things are slowed down or stopped growing, as compared to the situations where the chemo clears everything up.  The general rule of thumb is that the drugs work for about a year, though that is general and many people can have years and years and years of treatment where the cancer is controlled.  In other words it does not grow.

For me, the FOLFOX worked in that a  "thing" in my lungs looked to shrink during FOLFOX.  They were too small to tell if they were cancer at the time.  And the change in size was small (these were small growths, under a 1/2 centimeter at the time).  But when I finished the FOLFOX (which is 12 cycles normally, though 6 cycles may have the same effect), the check the FOLFOX had on the cancer stopped and the one item grew.

I then had lung surgery, no chemo.  The cancer came back in 2017.  At the time I asked my doctor, which chemo.  She said none.  Wait. Because of the chemo was going to work, it generally works a year.  I eveything in my body had a long way to grow before it would affect me/require chemo.  So if it was going to shrink things, better to wait.  Then I had FOLFORI without Avastin for a few months.  I could not have the Avastin originally because I had radiaiton on my spine and there are some risks associated with Avastin too close to radiation. 

Anyway, the FOLFORI w/Avastin worked for about a year.  Slowed it down.  Then had a couple of scans with no growth.  But then the lung tumors increaesed in amount and size.  (My lymph nodes were shrinking still.  Spine stable).  I really wanted to stay on to see if something would improve.  But my oncologist was good about explaining things.  Not put me through extra chemo for no reason.

The Lonsurf, a second line (3rd or 4th really) actually kicked in.  Normally it just slows things down or stops growth for a bit.  I had a decrease in the size of the tumors in my lungs.  Last scan is open.  Some stuff is still shrinking, a couple may be growing.  It is such a small amount that I am hoping next scan shows no growth/shrinkage.  When a tumor goes from 2.7cM to 2.8 cM (as an example) it is such a small change that it could be just measurement, timing of contrast or other things.  But when a tumor goes from 4.2cM to 5.4cM  (another example) it is probably growing. 

So basically all the drugs worked for me to some degree.  Kept things in check or actually improved things a bit.  But the first two ran their course and waiting to see on Lonsurf.  Again, many people here have had drugs work for years, or completely made them NED.  So to the extent that my particular circumstance is far from ideal, please do not let it upset you.  I have had some less than good luck on some things along the way, but by the same token some real good luck.  Including the Lonsurf knocking things down a bit.  Maybe 10-15% of people have that happen.

Also, from where I am sitting now and how I was able to handle chemo overall, lifelong chemo is not bad.  Not perfect, but not bad.  I had FOLFORI every three weeks.  So I would have one week of being tired and feeling less than idea, but there is worse things in the world than resting on the couch and watching TV between naps.  Then I would have close to two weeks of feeling good..

Hang in there.  If there is anything that I was not clear about (I know I wrote broadly) or you have any other questions, please let me know.

 

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Have they ever told you that your on " lifelong " chemo ? My dad has only foci cells in his abdominal lining and they just jumped to that I'm wondering if it was kind of fast. Also whats your diet like and do you think thats a factor in fighting cancer ? The onc seems to not think so but my dad loves sugar drinking pepsi and stuff and it's a concern to me . 

 

Thanks for all your help someone who has been threw alot like you has so much vaulable insight and information . 

abita's picture
abita
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Joined: Dec 2017

Foci cells grow. My tumors were reduced to foci cells, then when the chemo stopped working, the foci cells grew back to tumors. Technically they multiply, and become larger growths. And I would guess there is also the concern that the cancer cells, regardless of how few there are, could spread without chemo.

worriedson714's picture
worriedson714
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But aren't foci cells easier to kill then they will be when they become tumors ? So to me it seems like they should be able to get rid of them with chemo but the onc doesn't think so . 

abita's picture
abita
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The standard thought, as I have come to see it, is that the only way to get "rid" of the cancer is to cut it out, so that translates to, if not surgical candidate, then lieftime chemo. That has not been said to me directly, so, take with a grain of salt that it is my understanding. That being said, I was close to death when I was diagnosed. The short version is, my surgeon was able to cut out all the tumors, so we thought my prognosis was "cured", but I had a recurrence with my first post mop up chemo scan, so hear I am, chemo for 3 years at this point. All that being said, I truly feel in my heart that there will be a "cure" discovered for me before all chemos stop working or before my organs can no longer handle chemo. Or that I will be that one in million who somehow chemo does get rid of the cancer. I have no basis to believe this other than optimism. 

I do understand where you are at now. 2 years ago, when he told me of the recurrence, I fell into such deep despair sitting there, that I closed my eyes, and cried and cried and then got up and left without saying one word. I had to make an appt so sat in the waiting room waiting for his secretary to get to me, got a call from a friend, went into the hall to tell her, started crying so loudly, and collapsed against the wall, and some people came and got me, and sat me at the secretary's desk. I guess my point is, I was where y'all are. The strength comes when you know how to fight, and then you start fighting. Does it suck, yeah, but I am very happy for each day I have, and in my heart, I plan for a long future even though I do at times, think about the bad possibilities. There will be bad days, the hope is you have many good days.

worriedson714's picture
worriedson714
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Joined: Dec 2019

           My dad has had two surgeries both failed to get all the cancer out so I don't see it as the only way to cure cancer but that would explain why the onc went straight to lifelong chemo . It's for sure the best way and the fastest most safe way no doubt but I also believe the other treatments can cure it to well least I am hoping so for my dad's sake . That's the problem with " lifelong chemo " it's so vague idk what it even means . Can someone stay on chemo for years and years ? Can the chemo work so good that " lifelong chemo " changes as more options come into view ? I asked the onc this cause first he said my dad could make it a few years on chemo . I asked what if it works really good and he just strugged it off maybe he doesn't know but " lifelong chemo " is just to vague I just don't like thinking it or that the onc said it .

I been trying to follow your lead on the attitude to help keep my dad positive I tell him a cure could happen and that the chemo could work really good things could change I hope it makes him feel better . He seems depressed sometimes and just kind of accepts there is no hope of beating the cancer . Which I firmly believe there is always hope I just wish the onc would try the other treatments like radiation , pouring chemo directly into abdomial wall and at least talk to surgeon and find out why surgery is not a option maybe I just scared to admit my dad needs lifelong chemo idk . 

NewHere's picture
NewHere
Posts: 1332
Joined: Feb 2015

As of right now, barring any breakthrough, I will be on chemo the rest of my life.  In the bizarro world of cancer, it sounds fine to me until they have a cure.  The Lonsurf makes me tired, but two so-so weeks and two good weeks between cycles of pills) is fine.

As to diet, there is many things out there.  There is also a lot of discussion about sugar and cancer - Warburg etc..  (Putting cancer aside as an issue, high sugar things are not a great idea in general. I also avoid salt in my diet. We don't use it much at home.) 

I think a healthy diet will generally make you feel better.  Stacks the odds in your favor. And there are some foods that are probably helpful - green leafy vegtables, fish selection (for Omega).  All no-risk, high reward foods.  As compared to having a Pepsi.  Not sure there is any health benefit associated with that ;)  

I was never a big sugar eater, desserts usually are only a "treat" when I go out to dinner.  I did not totally cut all sweets out, but do not binge.  The only time I have sugared sodas in the last three years is Coke or Ginger Ale which I keep for if I am quesy.  Usually it is seltzer, water with lemon or herbal iced tea.  It seems to help.  I have cut down on fast food.  Again, nothing I overly did, but I may get McDonald's or Burger King once a year now. And that has happened when I was out and about and got hungry (low blood sugar) and it happened to be available. When on Lonsurf for the two weeks I will not have beer, wine, etc.  And I try to limit weeks I am not on the pills.  

I do not eat red meat often.  I love fruits and salads.  I also do 16:8 fasting now and again.  Meaning - not eating anything for 16 hours, then having an 8 hour window where I will eat.  Considering there is 8 hours (or more ) of sleep it is not as hard as it sounds.  My morning tea or coffee will hold me and often I am not hungry.  I am not going to not eat, however, if I am hungry.

I am okay to have my ice cream or dessert now and again.  It does not trigger something where I have to keep on eating "bad things," and I enjoy it.  So I am lucky in that I do not have to cut things totally out.  If I was told I could never have those things ever again, I think it would be tough.  It is easier for me to make a decision.  With the training I do, these selections also become "Hey wait, I got to run another 2 miles to burn off those calories?  Hmmm.  Maybe I will put that down" Laughing  

SandiaBuddy's picture
SandiaBuddy
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worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

It's good to know the things the onc won't say my dad's onc won't even tell him to cut down on sugar . 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

For cimetidine its most useful if ca19-9 is high.  But I do know someone who is on it as of the other day per her dr to help initiate tumor infiltering lymphocytes.  So, there's that too.  I am interested to know if it works and let you know when I know.

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