Anyone Managing Stage IV with Avastin Only?

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Mattie
Posts: 65
Joined: Fri Mar 07, 2014 1:06 am

Anyone Managing Stage IV with Avastin Only?

Postby Mattie » Sun Apr 14, 2019 11:10 am

Hi all,

I've been on maintenance Avastin for awhile. Is anyone else doing it? It seems to control my disease, but wondering if anyone stopped and what the outcome was?
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 reached NED, sticking with Xeloda/Avastin
8/17 maintaining NED Dropping Xeloda. Avastin only.
4/19 still NED Avastin only.

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betsydoglover
Posts: 964
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Anyone Managing Stage IV with Avastin Only?

Postby betsydoglover » Sun Apr 14, 2019 1:09 pm

As you can see from my signature, I did Avastin only for nearly 2 years. We discontinued it in May 2011 because I had a very minor GI bleed (over almost before it started and in spite of EGD, small intestine capsule camera study and colonoscopy the location was never found). I was on strong arthritis med at the time, so we had no way of knowing which drug had caused it or if it was just a perfect storm of the 2 drugs. In any event I discontinued both - 8 years later I am still NED.

When you are NED, of course, it is not possible to tell if the Avastin has helped, but I am glad that I did it.

Hope this helps,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Mattie
Posts: 65
Joined: Fri Mar 07, 2014 1:06 am

Re: Anyone Managing Stage IV with Avastin Only?

Postby Mattie » Sun Apr 14, 2019 2:18 pm

Thanks Betsy,

Onc tells me it will come back if I quit. Just starting to get wierd side-effects, like choking. Worried about long term use. Agree it is impossible to tell if it is working, but the longest I've gone without a recurrance is about 3 years.

Thanks for your response.
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 reached NED, sticking with Xeloda/Avastin
8/17 maintaining NED Dropping Xeloda. Avastin only.
4/19 still NED Avastin only.

Pyro70
Posts: 38
Joined: Mon Jan 21, 2019 4:25 pm

Re: Anyone Managing Stage IV with Avastin Only?

Postby Pyro70 » Sun Apr 14, 2019 5:01 pm

Mattie wrote:Hi all,

I've been on maintenance Avastin for awhile. Is anyone else doing it? It seems to control my disease, but wondering if anyone stopped and what the outcome was?


Maitenance Avastin only? If so, I’m not sure why since this is not a recommended therapy. See below:

The other very important point, that is very important to remind our colleagues, is that bevacizumab on its own should not be used for maintenance. It does not work. It does not help. If you want to maintain patients, it’s a fluoropyrimidine plus bevacizumab. Do not use the monoclonal antibody on its own.


https://www.onclive.com/peer-exchange/advanced-crc-evolving-strategies/maintenance-strategies-for-patients-with-mcrc
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

Pyro
Posts: 153
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Anyone Managing Stage IV with Avastin Only?

Postby Pyro » Sun Apr 14, 2019 7:49 pm

Huh, I did Xeloda pills plus Avastin for maintenance, it didn’t work for me BTW
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @30, shit still here

Milk Tea
Posts: 24
Joined: Wed Feb 13, 2019 1:14 pm

Re: Anyone Managing Stage IV with Avastin Only?

Postby Milk Tea » Sun Apr 14, 2019 8:22 pm

Hi Mattie,
My husband is on Xeloda plus Avanstin maintenance for about two years. We are also so scared for the recurrence if quit or drop one of them.

Can you share why you dropped Xeloda? And how often you get Avanstin infusion currently? My husband gets Avanstin every 3 weeks now but his oncologist thinks he can move to every 4 weeks so we only need to go to infusion center once a month.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

User avatar
betsydoglover
Posts: 964
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Anyone Managing Stage IV with Avastin Only?

Postby betsydoglover » Mon Apr 15, 2019 5:12 pm

Regarding the comment that Avastin only "does not work" - I am skeptical of any statement that is so definitive. Given how Avastin works, it makes sense that it alone could prevent recurrence in a person who is NED. Might be different in a person who is on "maintenance" in order to stabilize disease - they may well need Xeloda also.

With Stage 4 in particular, there are not really any standard protocols - more like different things that are typically tried with good oncs and researchers having varying ideas about what might work in a particular situation. Cancer treatment involves some art as well as science and is not necessarily 1 size fits all.

Did Avastin only "not work" for me? If it didn't "work", then something in the Universe did, but I'm glad to have done it and happily take being NED 14 years post Stage 4 diagnosis.

My thoughts,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Pyro70
Posts: 38
Joined: Mon Jan 21, 2019 4:25 pm

Re: Anyone Managing Stage IV with Avastin Only?

Postby Pyro70 » Wed Apr 17, 2019 4:16 am

One has to remember that no conclusions about efficacy can be drawn from any single experience. Some people will do well, some will do poorly, with or without intervention. The only way to be certain of a drug efficacy is with high quality statistically significant data (ideally in a double blind, placebo controlled trial - but that’s not always feasible)

https://www.ncbi.nlm.nih.gov/m/pubmed/29346040/
This trial looked at avastin only as a maintenance regime versus observation only (no drug in maintenance). It found no statistically significant differences between the control and experimental arm. It’s fairly compelling evidence that Avastin only does not work.

If you’re on or considering avastin only maintenance, I’d suggest discussing this trial with your oncologist and ask why they are suggesting going against the result.

Best
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

rp1954
Posts: 1478
Joined: Mon Jun 13, 2011 1:13 am

Re: Anyone Managing Stage IV with Avastin Only?

Postby rp1954 » Wed Apr 17, 2019 8:35 am

One of the problems that individual mCRC survivors have is the difficulty of their oncologists to lift the hood, so to speak, to work an individual's problems, and then reconcile these treatment actions with rather crude statistical recommendations often meted out today. A lot of veterans here know how deadly hamfisted the reigning medical statistical paradigm and average or standard practices can be.

Two early incidents with oncologists and pharmas in 2010, over their abuse of then allowed Avastin marketing (CRC stage 3s and paid breast cancer promotions), jaded my views of their intuitive analytical insight, independent judgement and reliability. Since then Avastin has demonstrated substantial efficacy in mCRC to extend lives, despite some Faustian bargain aspects. We went a different path and avoided Avastin despite a "favorable" molecular indictation on my wife's cancer biology.

Mattie's problem is that she has reached a degree of success and survival by a series of treatments that include Avastin, after a stage 4 diagnosis and several recurs. Each recur is dangerous even if discovered early and likely an increasingly difficult roll of the dice. However, we know that Avastin carries its own risks and side effects that may overbalance its benefits. She wants a better offer, a means off the ledge taking fewer risks - a protocol, a treatment or even an analytical improvement, rather than that simple leap of faith based on some crude statistics with a lot of people not enough like her.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

User avatar
betsydoglover
Posts: 964
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Anyone Managing Stage IV with Avastin Only?

Postby betsydoglover » Wed Apr 17, 2019 4:44 pm

I really do not want to sound like an Avastin advocate - no axe to grind - other than my survival. Obviously there are no truths to be found in individual experiences - but this board is pretty much about individual experiences.

Pyro70 referenced an interesting trial comparing Avastin only to monitoring. https://www.ncbi.nlm.nih.gov/m/pubmed/29346040/ That trial involved patients who still had "tumor burden". Fine trial, but it is not necessarily the case that the results would be the same in NED patients. So different kinds of "maintenance" - that for folks who still show evidence of disease and that for those who do not.

Do NED patients need followup chemo? Who knows? I had none after my initial treatment. When 3 years later, we decided to do it following lung surgery, it just seemed prudent, especially given the relative lack of side effects.

Who knows if Avastin only helped stave off any recurrence for me or others who have done that? Doubt there is any way to determine the efficacy in the NED patients overall- you'd have to find a lot of subjects (many of whom may have gone on with their lives) and then follow them for a long period of time. This kind of study would likely not have a short "time to disease progression" - thus needing much longer study term. Just saying that there is lots to discuss with our oncologists depending on our specific stage 4 situations, and, especially in the NED case, there don't seem to be any absolutes.

Again, my 2 cents,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Pyro70
Posts: 38
Joined: Mon Jan 21, 2019 4:25 pm

Re: Anyone Managing Stage IV with Avastin Only?

Postby Pyro70 » Wed Apr 17, 2019 6:32 pm

betsydoglover wrote:I really do not want to sound like an Avastin advocate - no axe to grind - other than my survival. Obviously there are no truths to be found in individual experiences - but this board is pretty much about individual experiences.

Pyro70 referenced an interesting trial comparing Avastin only to monitoring. https://www.ncbi.nlm.nih.gov/m/pubmed/29346040/ That trial involved patients who still had "tumor burden". Fine trial, but it is not necessarily the case that the results would be the same in NED patients. So different kinds of "maintenance" - that for folks who still show evidence of disease and that for those who do not.

Do NED patients need followup chemo? Who knows? I had none after my initial treatment. When 3 years later, we decided to do it following lung surgery, it just seemed prudent, especially given the relative lack of side effects.

Who knows if Avastin only helped stave off any recurrence for me or others who have done that? Doubt there is any way to determine the efficacy in the NED patients overall- you'd have to find a lot of subjects (many of whom may have gone on with their lives) and then follow them for a long period of time. This kind of study would likely not have a short "time to disease progression" - thus needing much longer study term. Just saying that there is lots to discuss with our oncologists depending on our specific stage 4 situations, and, especially in the NED case, there don't seem to be any absolutes.

Again, my 2 cents,



Use of Avastin for NED Status maintenance is likely more frought than in the metastatic setting. I agree that few studies have looked into the optimal adjuvant treatment after stage IV. Technically one would have to likely look at stage IV after liver met resection separately from, lung, or other stage IV NEDs. However, stage III adjuvant (ie NED) chemo has been looked at extensively. From this we know that the addition of bevacizumab to 5FU actually led to WORSE outcomes (MSS only) than not adding bev. See below:

These negative results reinforce that bevacizumab should not be used in the adjuvant treatment of patients with stage III CRC. A

https://www.jwatch.org/na42900/2016/11/22/adjuvant-bevacizumab-colorectal-cancer

I know that previously Up-to-Date’s guidelines for adjuvant treatment after hepa metasectomy (is stage IV, NED) also said avastin is not an acceptable drug based on the results of stage III adjuvant. However, I just looked over this article again and the reference to avastin in adjuvant seems to have been removed in the latest update - I’m not sure why...

Yes, no data is “perfect”, but we can draw some conclusions from some of the trials in this space. Again, If you’re using Avastin only as maintenance, I suggest a discussion with your oncologist to ensure they are following the latest evidence/guidelines.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

Pyro70
Posts: 38
Joined: Mon Jan 21, 2019 4:25 pm

Re: Anyone Managing Stage IV with Avastin Only?

Postby Pyro70 » Wed Apr 17, 2019 6:37 pm

rp1954 wrote: She wants a better offer, a means off the ledge taking fewer risks - a protocol, a treatment or even an analytical improvement, rather than that simple leap of faith based on some crude statistics with a lot of people not enough like her.


This speaks volumes. You suggest following evidence based medicine is too big of a “leap of faith” because the data isn’t “perfect”, but instead you suggest some other (undefined/unknown) protocol without ANY evidence of efficacy. I don’t have more to say you, people can be their own judge, adieu...
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

rp1954
Posts: 1478
Joined: Mon Jun 13, 2011 1:13 am

Re: Anyone Managing Stage IV with Avastin Only?

Postby rp1954 » Thu Apr 18, 2019 11:51 am

Pyro70 wrote:
rp1954 wrote: She wants a better offer, a means off the ledge taking fewer risks - a protocol, a treatment or even an analytical improvement, rather than that simple leap of faith based on some crude statistics with a lot of people not enough like her.

This speaks volumes.

Yes, it does. At best, you're not reading carefully. Often you're hot on the trigger, ready to blast and disparage anyone or anything "nonstandard".

My first post, at 4/17/19 835 am, above, I went out of my way to acknowledge Avastin's hazards and adjuvant (post-op stage 3) contraindications:
... in 2010, over their abuse... Avastin marketing (CRC stage 3s... jaded my views of their [onc's/pharmas'] ... analytical insight,... judgement and reliability.... some Faustian bargain aspects. We ... avoided Avastin...
...However, we know that Avastin carries its own risks and side effects that may overbalance its benefits.


What part of that did you not understand?

You suggest following evidence based medicine is too big of a “leap of faith” because...

Because, I re-stated Mattie's question and voiced it as any sentient, 3x recurrent patient's doubts might be, call it the "Patient's de-escalation dilemma".
Also, even your own reference suggested that there might be a potential window of exception for about 5% of patients, with MSI.
Further, Mattie's posts show that her oncologist arrived at this treatment through a process of elimination, over three recurs, somewhat beyond the scope of the trials.

In any case, a worried, cautious patient attempting to move forward on de-escalation, wants real reassurance that nothing is overlooked, that a good plan with extra chances is already in place - that scrupulous attention with supercompetent, careful thought is guarding their life. Of course, this is far more consideration than most patients will get, without their own great effort and self-advocacy. Here, we try to help each other.

...the data isn’t “perfect”, but instead you suggest some other (undefined/unknown) protocol without ANY evidence of efficacy.

No, we haven't discussed ways and means, extra strategies yet. At this board, rejected, hopeless mCRC's have been known to grind the literature or their options finer, to seek out better answers, or the best experts in the world, or go to the other end of the f'g planet. Successfully in a number of cases, way beyond NCCN.
And whatever the outcomes, share them here, in a nonhostile environment.

I don’t have more to say [to, for or about?] you, people can be their own judge, adieu...

Well...bye, thank you for your participation. In fact, I acknowledge that amongst a number of PhD, MD, researchers, JD, medical, STEM, professors, and bright bodies doing mCRC-stage 4 posts here, that you have succinctly, most notably represented ASCO-NCCN's positions, of any poster in the last 14 years. With facility and ease.
So you're welcome, but puh-lease, lose the attitude.
Last edited by rp1954 on Thu Apr 18, 2019 11:37 pm, edited 1 time in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

Butt
Posts: 10
Joined: Mon Mar 11, 2019 10:48 pm

Re: Anyone Managing Stage IV with Avastin Only?

Postby Butt » Thu Apr 18, 2019 7:32 pm

My local oncologist and MD Anderson doc said that Maintance with Avastin is done with FU5 or Xeloda pill. Butt.

Mattie
Posts: 65
Joined: Fri Mar 07, 2014 1:06 am

Re: Anyone Managing Stage IV with Avastin Only?

Postby Mattie » Fri Apr 19, 2019 9:35 pm

Milk Tea wrote:Hi Mattie,
My husband is on Xeloda plus Avanstin maintenance for about two years. We are also so scared for the recurrence if quit or drop one of them.

Can you share why you dropped Xeloda? And how often you get Avanstin infusion currently? My husband gets Avanstin every 3 weeks now but his oncologist thinks he can move to every 4 weeks so we only need to go to infusion center once a month.



Hi Milk Tea,

I dropped xeloda because I had been on it for about a year without a recurrence. Discussed with my onc and he agreed to just try avastin only since I tolerate it pretty well. The mets in my abdomen will come back but I think if they do, I will go back to xeloda again as it still appears to work. I get a 30 min infusion once every three weeks.
Best wishes to you and hubby.
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 reached NED, sticking with Xeloda/Avastin
8/17 maintaining NED Dropping Xeloda. Avastin only.
4/19 still NED Avastin only.


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