Anyone Managing Stage IV with Avastin Only?

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Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: Anyone Managing Stage IV with Avastin Only?

Postby Mattie » Fri Apr 19, 2019 9:44 pm

rp1954 wrote: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.



Agree rp1954, This is exactly what I want.
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
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 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met

Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: Anyone Managing Stage IV with Avastin Only?

Postby Mattie » Fri Apr 19, 2019 9:57 pm

Thank you all for your posts. I appreciated the different sides presented to my question. I am out here on the tail of that curve and looking for others. Would love to join Betsydoglover--drop the Avastin and have 14 more years. I think in my case it will be unlikely....but can't imagine doing avastin for the rest of my life....Waiting, as we all are, for that next breakthrough.
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
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 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: Anyone Managing Stage IV with Avastin Only?

Postby rp1954 » Sat Apr 20, 2019 10:12 pm

Mattie wrote:I am out here on the tail of that curve and looking for others. Would love to join Betsydoglover--drop the Avastin and have 14 more years. I think in my case it will be unlikely....but can't imagine doing avastin for the rest of my life....Waiting, as we all are, for that next breakthrough.

I'm more optimistic, but it is a participatory blood sport...
What if some of the "future breakthroughs" were already here ... and almost no one noticed or did anything productive?
What if many futures were possible?
And why wait?

That was our view based on various pools of knowledge and experience. So we had to fill in some gaps. We had to make budgets for cash, do homework, carefully marshall free resources (limited supply), get and find information, be very realistic, calculating, and resolute enough to at least plod along.

Step #1 for us, was to prepare a comprehensive spreadsheet - all the blood work values, treatments, and scan dates. In our case, that was me; our kids would do some work, even some major search projects, and make various in kind contributions over the years too. That spreadsheet is a great conversation piece, investigative resource, medical summary, decision tool, door opener, and hammer.
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 no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements


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