Avastin only for maintenance?

MMMT SURVIVOR

I have consulted this board since December 2010 when diagnosed with MMMT.  I've seen topics on Avastin along with another chemo for treatment but not much on Avastin alone for maintenance.  Are any of you on such a routine?  I just completed my 11th infusion yesterday and the onc said it's difficult how long to keep me on it.  He said that you can't stop and take a break - Medicare only gives you one shot at the treatment.  Also he said that Medicare can refuse to cover further treatment should they choose.  Having been through chemo/radiation 3x now it's been wonderful to feel like I have my life back again.  My ca-125 has stayed level since starting treatment in October.  That said, sometimes I still feel like a ticking time bomb as this drug retards healing and who knows what lies ahead.  But all in all, I'm blessed to be living a wonderful life.  Should Medicare kick me off, does anyone have an idea of how much this drug would cost out-of-pocket?  I know that my cancer center, Siteman in St. Louis, bills $23k a pop although I believe Medicare approves the full amount and pays about 15% of that figure.  any experience that you have had with this drug, treatment, cost, etc. is appreciated.

 

Mary Ann

1/2011 - TAH/carbo/taxol/brachytherapy

1/2013 - Bilateral lung wedge resection 2 lung nodules followed by chemo

8/2015 - Stereotactic radiation for one lung nodule

12/2017 - 9/2018 - Radiation for pelvic tumor followed by chemo

10/2018 - Avastin only for maintenance

SF73

At the beginning of my chemo

At the beginning of my chemo treatment, my oncologist thought I would benefit from Avastin in addition to Carbo/Taxol. My insurance company denied coverage. So I investigated how much it would cost to cover the expenses out of pocket. If I remember it right, the dosage was something like 850 mg/ infusion. And the price they quoted was $14K per session. Not sure if that was inclusive of the service or just the medication. Not affordable for us at all. I really hope Medicare will continue covering it. You can also reach out to genentech (the manufacturer) and see if they have a compassionate drug usage policies. I ended up taking only carbo/taxol and Metformin. Metformin does have some anti-angiogenesis qualities (like Avastin) so hoped that it would be sufficient.

You can also have a diet rich in food with anti-angiogenesis qualities. William Li has a famous TED talk about this topic. Here is the link. At around the 13 min mark he talks about how some food items have more anti-angiogenesis qualities than some cancer drugs in the market. Hope this helps. 

pinky104

SF73 said:

At the beginning of my chemo

At the beginning of my chemo treatment, my oncologist thought I would benefit from Avastin in addition to Carbo/Taxol. My insurance company denied coverage. So I investigated how much it would cost to cover the expenses out of pocket. If I remember it right, the dosage was something like 850 mg/ infusion. And the price they quoted was $14K per session. Not sure if that was inclusive of the service or just the medication. Not affordable for us at all. I really hope Medicare will continue covering it. You can also reach out to genentech (the manufacturer) and see if they have a compassionate drug usage policies. I ended up taking only carbo/taxol and Metformin. Metformin does have some anti-angiogenesis qualities (like Avastin) so hoped that it would be sufficient.

You can also have a diet rich in food with anti-angiogenesis qualities. William Li has a famous TED talk about this topic. Here is the link. At around the 13 min mark he talks about how some food items have more anti-angiogenesis qualities than some cancer drugs in the market. Hope this helps. 

Angiogenesis

I found this very interesting.  I wish the list of foods was left up longer so  I could have jotted them down.  I found it interesting that strawberries were on the list because strawberries are on the dirty dozen list for foods that can't have the pesticides washed off of them no matter how much you wash them.  At the hospital where I had my surgery, one of the GYN/oncs gave a speech at a cancer survivors' dinner telling us to avoid foods on that list.  Dr. Li should have suggested buying them organically grown.

I also found it interesting that statins were supposed to be helpful in preventing angiogenesis.  I've been on statins for years for hyperlipidemia and I eat a number of foods on the list, but my cancer still came back.  Maybe I should be eating nothing but those foods. 

NoTimeForCancer

Thank you for the video, SF73

Thank you for the video, SF73.  It was very interesting.  I saw the artery that grew from my mother's breast cancer tumor, which had a 'heart beat' different than her heart  Tumors do grow their own blood supply to feed and live.  In my opinion, the real world - you ladies and others and the good doctor himself show - what works for some doesn't work for others.  We should do what we need to do for ourselves and be our own advocates.  Again, thank you for posting this - I am headed for that glass of red wine with some dark chocolate covered strawberries

Pinky - here is the list for you:  Green Tea, Strawberries, Blackberries, Raspberries, Blueberries, Oranges, Grapefruit, Lemons, Apples, Pineapple, Cherries, Red Grapes, Red Wine, Bok Choy, Kale, Soy beans, Ginseng, Maitake mushrooms, Licorie, Tumeric, Nutmeg, Artichokes, Lavendar, Pumpkin, Sea cucumber, Tuna, Parsley, Garlic, Tomato, Olive Oil, Grape seed oil, and Dark chocolate 

cindy0519

I am on Avastin only as

I am on Avastin only as maintenance. I had cycle #12 in March and my Onco wanted to scan and talk about stopping Avastin if the scan was clear. She said there was proof that doing more would have any benefit. My argument was that we started Avastin not knowing if it would have benefit either but we started it anyway. I had a scan in April that showed slight enlargement (just under 2cm) in two tph modes. The Onco attributed this to the difference between two radiologist reading each scan and not true progression. She doidnt want to stop Avastin however and said we would scan again in Sept/Oct to check the two nodes. In late April the lower back pain I have had for a couple years escalated to the point that I couldn’t walk without screaming in pain. A CT showed what at first was believed to be a met on my spine but when looked at closer with an MEI was a benign cyst that was impinging the nerve bundle in my low back and severely narrowing the spinal column  Long story short I had to take a break from Avastin to have a PLIF surgery to remove the cyst and fuse L4, L5, and the tailbone in early May.  I am starting Avastin infusions again on the 29th of June. I am not on Medicare but my insurance has already been denying just the Avastin drug and after aomemfighting and additional aperwoek they approve it but it takes a few months. Each infusion for Avastin (just the drug) is billed at $38k before any discounts. I hope I don’t have any issues with insurance as we begin treatment again. 

Jacjac2

I am currently on Avastin now

I am currently on Avastin now for maintenance.  I have been taking it every three months since March 2018.  I am a teacher with United Health care.  My insurance did approve it and yes, it is expensive.  As part of my insurance,  there is a nurse that calls me from time to time to see how things are, they have a cancer support group.  The company that makes Avastin realizes the cost and while I have not pursued it,, there is a one time grant that helps with the co pay part.  My oncologist hopes the avastin will continue working at least a year but has been honest that it will stop or that effects will begin to kick in.  Where we will go from there we dont know but for now it seems to be working.