Avastin Question - for short or long term use?

[Luci22]

Hello all,

I'm a newbie on here, on behalf of my mother. I'm seeking your thoughts and prior experience about Avastin. My mom has stage 3 high grade serous oc. She has had 3 chemo sessions with Avastin, then surgery which went quite well and now to finish 3 more chemo with Avastin sessions. I asked if she should continue the Avastin afterwards and he seemed unsure.

His thoughts were that she could do a few more Avastin rounds afterwards but maybe not all year (she will have to pay for it herself) He said maybe it could be saved for use in case of reocurrance.

So, I'm wondering if some of you have been prescribed Avastin and for how long? Did it seem much more worth it to stay on it longer term? I'm a bit confused by all the variability in treatment options, though I know there are differences in the types of ovarian cancer.

Thanks for any input!

[Cynthia18]

From what I've been told its most effective to kill the cancer cells after surgery.then stop and be monitored for any cells coming back.it sounds like your mom's been through a lot.my prayers go out to your mom and your family

[Luci22 in reply to Cynthia18]

How do they typically monitor for cells coming back?

Thanks for your feedback!

[Cynthia18 in reply to Luci22]

By her blood/cat scan

[ns5951]

Ovarian cancer is monitored by CA125 from a blood test plus PET or CAT scans. I would get a second opinion - I thought Avastin was for recurrence. I have high grade serous, stage 4, - started on carbo/TAXOL after surgery, then switched to Gemzar/cisplatin. Good luck to you.

[Jaimee]

My doc automatically puts stage 3 and 4 on avastin after surgery and chemo to prevent recurrence.

[Cjbloomq]

I have stage 3c ovarian cancer since 2013. I have gone through chemo,surgery,chemo on and off since then. I was put on Avastin for maintenance for about a year,back in 2016. Did well except side effects of high blood pressure and kidney issues. Ca125 went up and was put in trial for immune therapy. Did not work,so back on chemo. Doing great so far. Ca125 went from 583 to 54 since Nov. Doc always said the cancer will come back,so I live with a chronic disease. Attitude is the key ,and faith. Keep your chin up, there are many new treatments out there.

[Luci22]

Thanks for the replies so far. It sounds like there are different strategies available.

Being in Canada, Avastin is only covered by govrtnment health insurance for women who didn't have successful surgery "optimal debulking". They get a year Avastin paid following chemo. My mom had optimal debulking which is good so now Avastin doesn't get covered. She still got chemo and responded very well. When the doctor said to us that it may not be necessary now but maybe it for recurrence, I felt uneasy since isn't the goal to prevent recurrence as much as possible? We will need to pay out of pocket if we want to continue Avastin so we wonder if it's worth paying for it. It's expensive as you all may know.

Doc said the maintenance drugs come into play after a first recurrence so he thinks it could be good to save it for that point. I need to talk to him more about that next appointment.

Is maintenance treatment approached in a similar or different way in your area where you are treated?

Thanks again,

Lucia

[malka210]

I have been avastin for a year and recently started taken urine test and

Have very high levels so right now no more avastin. Make sure that they

Check urine every time your mom goes. Hang tight honey sending positives

Engery

Millie

[malka210 in reply to malka210]

Very high levels of protein in urine from avastin. Just making what I said clearer

Millie

[Durlydurl]

Maybe Avastin reacts differently with different people, but it killed my mother after the third treatment (dose). It caused the mucosal lining of her GI tract to slough off, then her bowel collapsed and became obstructed. She died weeks later and suffered greatly. I am not a fan of Avastin and I believe its use should be discontinued.

[Luci22 in reply to Durlydurl]

I am so sorry to hear about this, and for your loss. Were they tracking anything like her urine or blood throughout the use? Thanks for sharing this information , it may help others in deciding or consulting more with their oncologists about using Avastin. I knew there were risks from taking it, like internal bleeding, but this seems different. I'm sorry again, for your great loss.

Best wishes to you.

[Durlydurl in reply to Luci22]

Luvi22,

In May 2018, mom only had some remnant lesions on the peritoneal lining that had not metastasized and seemed to be under control with her anti-cancer regimen. She moved to the coast and got a new oncologist there who pressed her to do more chemo, although mom made it very clear that she was not willing to do more chemo. Avastin was presented as an alternative. Mom had 3+ years prognosis without any more treatment at all. After the third Avastin dose, the mucosal lining of mom's GI tract sloughed off and collapsed her bowel and she could not eat. Exponential growth of tumors also occurred after the Avastin treatment and caused bowel obstruction, then hospitalization, starvation, suffering and finally death on August 12. The Avastin took her down so quickly and we were not aware of the explosive growth (only small lesions before the treatment), so we did not suspect growth sufficient to block her bowel (which is the way ovarian cancer kills much of the time). She was complaining of constipation, and they kept giving her laxatives. They finally did a CT scan! I would have given her some LDN if I had any clue that this was happening. (lowdosenaltrexone.org/ldn_a...

I don't know how well this new oncologist was monitoring her labs. I had access online and reviewed all of her labs before she moved to the coast and changed doctors. The only thing the oncologist said in the end was "I guess the chemo didn't agree with her."