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Question about maintenance therapy

PamRav's picture
PamRav
Posts: 282
Joined: Jan 2017

Has anyone ever been offered or have used Strivarga as a maintenance drug??

im not doing well on xeloda; hand and foot really bad. We’re currently lowering the dose to see how it goes. 

If my condition doesnt improve my options are to go back on the pump for 5 FU. 

Strivarga was also suggested, but honestly i thought that was a drug you used when nothing else was working. I had mets to liver and lung lastest scans show no activity and no new lesions.  

Any thoughts greatly appreciated

thanks . 

P

Butt's picture
Butt
Posts: 355
Joined: May 2018

Stivagra is no good. Maintance according to MD Anderson FU5 plus Avastion every took weeks. No good I know. Where are your mets? Butt.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Some kinds of supplements may be useful for fewer side effects.  I'd look around some of the alternative medicine and naturopathic places. IV vitamin C has probably helped a majority (>51%) of 5FU patients reduce their side effects and increase their cancer inhibition.   Also folic acid, the synthetic vitamin B9, definitely can aggravate 5FU side effects due to increased toxicity to healthy cells, rather than cancer.   We used liver for its natural folate, natural vitamin B9, content to improve chemo side effects.  

There are fewer Xeloda specific examples, but one might talk to Riordan Clinic about IV vitamin C and xeloda, they definitely mentioned it in a previous paper.   We used IV vitamin C with another oral 5FU drug to reduce side effects and increase cancerf kill.  One member here had IV vitamin C and K3 to help their Folfiri side effects and cancer inibition for several years after when they were going to quit. We used menaquinone-4 pills, the human form of vitamin K2, instead of vitamin K3, with better results.  Ditto high dose vitamin D3 with vitamin K2.

PamRav's picture
PamRav
Posts: 282
Joined: Jan 2017

for the input.   I will look into the vit c and ck out supplements   

Butt,   My mets were smal lesion in lung, a couple lymph nodes there. and one lesion in liver.  Nothing lihting up on last scan.  Next scan in late April, fingers crossed. 

 

Butt's picture
Butt
Posts: 355
Joined: May 2018

My understanding  that vitamin c and some other supplements Can be contra productive to chemo treatments. 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

The (anti) vitamin debates are a sad, long running story.  Mayo Clinic anti vitamin C papers of the 80s were largely biased hit jobs and the pro C papers were inadequate.  More recent papers in the 2000s focused on IV strength vitamin C and KRAS/BRAF mutations as major success factors.  KRAS/BRAF mutations were usually hopeleness factors.  Anti vitamin papers continue to list stupid ways to fail rather than smarter ways to succeed; only the first report of a failure mode is likely to be useful at all.  If you were shopping for a car mechanic for a race car, who would you hire?  

IV vitamin C can't help every kind of CRC biology, but I do think it is a majority of advanced CRCs when targeted by markers and tests, used intelligently. Some papers report that (IV) vitamin C and some natural compounds re-sensitize cancer cells to 5FU.  IV vitamin C, etc are not standalone treatments for CRC, rather they are additive adjuncts, and they added very well to daily 5FU (plus cimetidine, celecoxib, aspirin, and surgeries) for us.

We adapted these and many papers to oral 5FU as additive adjuncts, along with a number of other adjuncts, step by step, that held more promise than the standard adjuncts.  Most people like my wife died in the early years after dx. In 2011 her situation was still considered 99%-100% fatal in 2 years from dx, based on stats from before Avastin.  We never needed to buy Avastin, iri- or oxi-, or deal with their side effects. 

We focused on various tests from the very start to accumulate good treatment components.  As it turned out, her biology was in commonly described areas, and we could also get many test results ourselves from laboratories. Some tests indicated we could do better than standard with our adjuncts added to 5FU. Everything worked very well for my wife, who otherwise had a very dismal future.  After 8 years of chemo, she is off immunochemo for now for over 9 months.    

Again we took a much more technical route, so we used many personal tests, measurements, assessments, and even design, rather than just blindly rely on statistics from biologically unstratified crowds.  The other important aspect is that my wife didn't suffer much in the way of side effects, most items made her feel better, like IV vitamin C, but even her particular chemo.

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Have you asked your onc about Avastin only?  I did that for exactly 2 years - no side effects other than severe nasal congestion which is mostly (but have to admit not completely) resolved.

I did have a very minor and unlocatable GI bleed after 2 years - probably a perfect storm combined with my arthritis NSAID.  Stopped the Avastin as a result to be safe.

Bottom line is that when i went in for 30 min Avastin infusions every 3 weeks, I did not even feel like I was going for chemo.  Just a relaxing rest in the chair (seriously).

 

Take care,

 

 

abita's picture
abita
Posts: 830
Joined: Dec 2017

One of avastin's side effects is bleeds. 

PamRav's picture
PamRav
Posts: 282
Joined: Jan 2017

On changing oncologists Asap   This fella was new to me, first visit.  My lovely compassionate oncologist left for greener pastures.  This guy ( i dont even want to call him a doctor) was a jerk  

I’ll definitely be having a big discussion about maintenance with the new doc.   

Im doing 2000 zeloda a day. 7 days on. 7 days off. The hand and foot is much better.  Hopefully i can continue with it. 

Thanks tanstaafl for all you great input 

Abita... are you on maintenance?   from your posts  i think we seem to be on similar paths. 

abita's picture
abita
Posts: 830
Joined: Dec 2017

I am not on maintenance. Tomorrow, I have a scan results appt. First, hoping that I had enough folfox to make there no loger be cancer cells in my liver that have uptake. Second, there was a nodule that grew a bit on my lung. It has been there since I first getting scans with no uptake, but recently went from 4 mm to 8 mm. They gave me a plethora of reasons they do not think it is cancer, but they cannot tell. If it is cancer, then we have to have a new plan, because it grew on folfox. I ask a lot about maintenance chemo because I want to be prepared if I have to get on it. I was originally "curable" but my mop up chemo was switched from folfox to folfiri, and when I finished I had two new small tumors in liver. These are what the last 6 months of chemo was for. I had two chemos left, but since I am allergic to oxaliplatin, the stopping for reactions each time got worse, and this last time we stopped 4 times, 3 hives, red, and itchy, the 4th rigors. he said maybe I just can't handle it anymore, so let's get a scan and see where I am.

Benjaminmi's picture
Benjaminmi
Posts: 2
Joined: Apr 2019

I have been on Maintenance chemo over a year and a half.   Also have 8 nodules in lungs.  Folfox did not stop them ; as of last week biggest one is now 1 cm.  Doc says not to worry about lungs.   My problem is tumors in peritonium.  Started Folfiri plus Axvastin today.   Back at MDACC in 8 weeks

abita's picture
abita
Posts: 830
Joined: Dec 2017

Got my results. We are in the same boat. The two lung nodules are cancer. And still have a bit of cells in my liver. He wants to test my tumor to see which treatment is best for me. And he said that he thinks I will be lifetime chemo. I am not sure if I should change doctors. He is great sometimes, but he can also be very harsh when giving bad news. And I sometimes wonder if he thought my case was easy when started, and didn't do all he needed to stop it from getting to where I am now.

Kazenmax's picture
Kazenmax
Posts: 424
Joined: Feb 2016

I did not bother testing the nodules in my lungs. They lit up on a PET scan and I decided to see a thoracic surgeon right away. rather than mess with any biopsy, I did the VATS surgery and just got them out. I’m very leery of doing biopsies. I say cut it out and do testing after. 

Did they say that this is not an option for you?

k

abita's picture
abita
Posts: 830
Joined: Dec 2017

Treatment has not been discussed.  My oncologist wants me to go to MSK 

suzycruise76's picture
suzycruise76
Posts: 132
Joined: Mar 2019

What is MSK?

abita's picture
abita
Posts: 830
Joined: Dec 2017

Memorial Sloan Kettering

suzycruise76's picture
suzycruise76
Posts: 132
Joined: Mar 2019

Thank you,I am learning....

Suzy

PamRav's picture
PamRav
Posts: 282
Joined: Jan 2017

to hear on your scan results.  I hope that they will find a chemo that will work well without givng you bad side effects.  

Im a “lifer”. When. Asked m new oncologist how long i would be on chemo his answer was “ till it stops working”. Ok well thanks for that positivity’s.  What a butthead   

Even with maintenance you can have reoccurrence so dont spend a lot of time thinking sbout what treatment you might have had but missed.  

I wish you well. 

abita's picture
abita
Posts: 830
Joined: Dec 2017

Thank you! And hoping the best for you as well. I am praying that one day the discover a cure so you and I aren't lifers. I don't think I am at maintenance yet as we have to find something to halt what we see on pet scan. I wonder if maintenance chemo is easier to deal with than folfox.

Butt's picture
Butt
Posts: 355
Joined: May 2018

With folfiri they remove irinetecan with folfox Oxy. I doubt it is easier to deal with. I do believe they eventually will find a cure or some new options will arrive. It may be way too late for us who are stage 4. I am not aware that something is cooking in the kitchen in terms of clinical trails that is going to be approved shortly. Someone who worked in clinical trails told me that only about 5 percent of meds eventually get approved. Butt.

abita's picture
abita
Posts: 830
Joined: Dec 2017

Can you please stop with the dire comments about being stage 4? I am trying to have hope and your comments are very rough. I am not sure where your mets are or what your situation is, but your blanket statements about being stage 4 are not helpful.

PamRav's picture
PamRav
Posts: 282
Joined: Jan 2017

is definitely easier than full on chemo, but it does come with its own set of problems.   Butt is incorrect in that they remove the most lethal of your chemos give youthe rest and call it maintenance 

i had an easier time with the 5FU pump than with the oral version , Xeloda 

Erica2016's picture
Erica2016
Posts: 17
Joined: Oct 2016

I was declared stage four a week ago and the comments really brought me down as well. 

abita's picture
abita
Posts: 830
Joined: Dec 2017

Sorry to hear that. Where did it spread too.

Butt's picture
Butt
Posts: 355
Joined: May 2018

I was brought down, too when I learnt I am stage 4. It is a different game.

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