Avastin Maintenance - when to stop - 1263470

rondede2
Posts:4

I have been on Avastin maintenance since February of this year - only three infusions so far. I just had a scan and there is some very slight progression. Radiologist says stable but when I see precarinal node changes from 0.9 x 1.6 to 1.0 x 1.8 (Mediastinum/hila). There are other millimeter changes some good, some bad. I have been very over treated (see my bio). I have sought second and third options, have been called a miracle patient as I have handled everything very well. I still work full time. I tried for an PDL-1 trial in my area and was told to come back if/when there was progression . His decision might have been influenced by his call to my onc, not sure.

I do have an appointment with my oncologist next week to go over my results. I just wanted to get some general opinions of when to say enough with Avastin. To me it seems very expensive and the results are questionable at this point.

Thank you,
Ronda

ps. I had to create a new account because I lost all my login information from my old one.

Ronda's bio
Been fighting since September 2011 - NSCL Adenocarcinoma Pancoast Turmor, right apex of the lung, Horners Syndrome. Mutation testing done - none found. Had a total of 16 platin based chemo cycles (yes 16 - not a typo) starting with Cisplatin/Etoposide - 6cycles, Carbo/Taxol/Alimta - 2 cycles, Carbo/Taxol/Avastin total of 8 cycles. . Had six weeks radiation in conjunction with the original chemo cycles. Most recent chemo was Carbo/Taxol/Avastin, last infusion was in Dec 2013. Had two different Cyber knife sessions (sub pectoral met, rib met) done is 2013. Avastin maintenance since February 2014.

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Reply # - April 28, 2014, 12:50 PM

catdander
Posts:

Hi Ronda, It's wonderful to know you doing so well!
I edited your post with your bio so doctors would have it for context. I thought it would be clearer than adding it to my post. My signature and bio disappeared a couple of days ago...My husband too is an outlier who is NED well over a year off treatment after being dx twice with mets.

The mm differences could easily be the person reading the scans or the difference in the cut of the ct so most docs prob wouldn't call it progression. (a study showed a group of doctors reading a scan then rereading it a short time later and calling the same tumors several mm difference) I'll ask one of our oncs to respond to your post and maybe a member or 2 will have some advise about getting into trials.

All best to you,
Janine

Reply # - April 28, 2014, 12:57 PM

catdander
Posts:

I'm sure these will be helpful in understanding what the trialists are looking for and maybe help you get where you want.

http://cancergrace.org/cancer-101/2013/01/06/clin-trials-ramalingam-pt-…
http://cancergrace.org/cancer-101/2013/01/18/how-are-clin-trials-develo…
http://cancergrace.org/cancer-101/2013/01/27/ramalingam-clin-trials-pt-…
http://cancergrace.org/cancer-101/2013/02/02/qa-with-ram-on-clin-trials/

Reply # - April 28, 2014, 01:50 PM

rondede2
Posts: 4

Thank you for the help. I thought the bio magically appeared in my post LOL.

I agree with your logic about different people reading the scans however, it was the same person comparing scans (there were no sizes noted on the last scan and they were told they need to include them). That said, the differences noted were done based on one set of eyes reviewing the the two scans at the same time.

As for clinical trials - I very much wanted to get into the PDL-1 trial but the problem was I didn't have progression at the time and hence nothing to biopsy. I don't think that has changed much with such small progression - If I can even call it progression.

My main concern is should I continue with Avastin.

Thanks again,
Ronda

Reply # - April 28, 2014, 04:35 PM

catdander
Posts:

Ronda, My husband was on treatment starting with surgery, then 4 weeks later chemo doublet/radiation (only 6 cycles thankfully) then 2 other treatments. I always whined about a break (I wholeheartedly believe D and his onc make the decisions and I've never had reason to put my slipper down) but my husband and onc wanted to "keep a good thing going" until finely 3 years into all this he went off treatment NED and still ned. He's gone scan to scan since. As I've said D's an outlier because he's done so well but he didn't waste anytime enjoying not being on any treatment at all.

Often an onc or patient puts taking a break on the treatment options table. Here's what Dr. West says again and again on the subject, "As for taking a break from chemo, I and most other experts feel that, if the cancer is relatively indolent and has been well controlled, taking a break with close, attentive follow-up is very feasible. There is always a chance that the cancer will progress off of treatment, but taking limited time off and repeating a scan after something like a 6-8 week interval is very feasible and can usually provide an appreciated and often helpful break without the patient experiencing significant, worrisome progression. We sometimes favor even having patients continue to enjoy a break until a follow-up scan demonstrates some evidence of clinically meaningful progression. If we can follow someone well, we generally feel that a break is very feasible." http://cancergrace.org/forums/index.php?topic=9469.0

Reply # - April 28, 2014, 07:29 PM

Dr West
Posts: 4735

We really don't know how much Avastin (bevacizumab) as a single agent adds...and many specialists think it's relatively little. But there are no trials done that directly answer that question.

I think that Janine's point about a treatment break is a fair one, as I think the most relevant question is whether your cancer would demonstrate the same pattern of very slight progression over a very long time if you're on Avastin, chemotherapy, some other targeted therapy, or no treatment at all. These treatments have very real cumulative side effects, so it is very appropriate to at least question how much they're really needed and not reflexively treating without end, just for the sake of doing more and more treatment.

Good luck.

-Dr. West

Reply # - April 29, 2014, 12:01 PM

rondede2
Posts: 4

Thank you so much. These decisions could literally be life and death. It's so incredible to have a place to come to get feedback.

I will let you all know what my oncologist suggests and what I end up doing.

Thanks,
Ronda

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