Hello. My wife had surgery over a year ago - complete hystorectomy and colonectomy. She went through regimens of first line chemo and was determined to be platinum resistant. Her CA 125 kept rising from a post surgery 75 to over 250. She is being treated at the Mayo and nothing has helped until the Doctor recommended Avastin/Cytoxan. He said it has shown remarkable results (actually seeing the tumors melt away) but has some serious side effects, especially for patients who have had multiple failed regimens of platinum based drugs.
We were told that this drug was not FDA approved for ovarian cancer and tried to get a benefit determination from our insurance provider. They stalled but, in the meanwhile, my wife's condition and quality of life were deteriorating rapidly. She lost over 60 pounds and has literally no energy with recurring naseau and abdominal pains. Knowing the risks, both financial and medically, she decided to try it.
After one treatment, her CA125 went from 256 to 131. After treatment two, it reduced further to 98.6. She needs to have 6 treatments before formal reassessment (CT scan). The Doctor feels that this is the result he was looking for. We are guardedly optimistic that this is finally working for her. She seems to be tolerating it much better than previous drugs.
Has anyone been on this regimen with similar or better results? Also, has anyone had success with either insurance or Medicare paying for the treatments?
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Avastin and Cytoxan
- By rschointuch
- Posted February 17, 2009 at 9:22 am · 10 replies
- In Financial and insurance issues
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Avastin Pancreatic cancer Ovarian cancer Hypertension Weakness Cytoxan Heart attack Lung cancer
10 replies
- Oldest first
- Newest first
- By dj
- Posted February 17, 2009 at 3:19 pm
- Report post
My heart goes out to you and your wife. I am also frustrated with our insurance BC/BSGA. I was taking avastin from 7/08-11/08(took a break from chemo/avastin to prepare for a surgery), insurance company denied claim. We have refiled several times on appeals but they still denied the claim. Saying it is not medically necessary, since it is not FDA approved for ovarian cancer. The cancer center I go to says Genentech(drug company) has a program to allow patients to receive the avastin. To qualify you have to have an income of less than $100,000. So we are going to try this route. Maybe this is something you can look into. Everyone seems to think avastin is the new wonder drug, hope so.
- By rschointuch
- Posted February 18, 2009 at 7:47 am
- Report post
The Avastin could be the new wonder drug. A similar product, also a monoclonal antibody, was used successfully on a collegue of mine who had terminal pancreatic cancer (they told him he had three months left). Now he is in full remission. Miracles do happen and that's what we are hoping for here - so far, it seems to be working.
I'm trying to convince the insurance company that these are special circumstances: My wife has tried all the conventional FDA-approved treatment regimens for OC with no positive results - her cancer is extremely aggressive and platinum resistant. The oncologist said her bone marrow desperately needed a rest from the chemo poison and he wanted to try this as a viable alternative. We looked at it as her last shot. And it seems to be working! We at last have some hope! But the blasted insurance company doesn't seem to care about that. It is so incredibly frustrating. We're hoping the doctors at Mayo can help us get through this financial thing.
- By Momschampion
- Posted February 18, 2009 at 9:35 am
- Report post
I've heard positive things about Avastin also but unfortunately my Mom's oncologist said she isn't a great candidate b/c a side effect could be bowel perforation and she has many bowel issues from the disease. With that said, my sister found an article dated Nov. 2008 from either the NY Times or Wall Street Journal I can't remember which said that Medicare is now covering Avastin. My Mom's oncologist said there hasn't been a Rep from the Co. in yet and she feels that would be the case once it's approved. Good luck!
- By adarsa3
- Posted February 19, 2009 at 9:05 am
- Report post
Hi Momschampion. I'm not sure if you saw the other thread I started about Avastin but it may not be the drug for your mom if she has had bowel involvement with the disease. My mom has been in the hospital now for 3 weeks due to a bowel perforation from the avastin. When they operated to repair her bowel, the surgeon said that the bowel had perforated at the same site where the bowel was resectioned during her original debulking surgery over 2 years ago. This is not a coincidence - there was obviously a weakness at that spot and the avastin was able to weaken it more. The bowel perforation is very serious and can be fatal. Fortunately my mom did not develop sepsis, which is the main concern with this. She did however have a heart attack after her surgery from the trauma to her body and ended up in ICU on a respirator because her lungs were filling with water. She is doing better now and will probably be released from the hospital within a few days but will need rehab to come back from this trauma. I know avastin has shown some very promising results but please be careful, especially if you have had previous bowel involvement with your disease. Best wishes to all who are undergoing treatment.
- By Georgi
- Posted February 19, 2009 at 4:40 pm
- Report post
Hi,
I have both ovarian and lung cancer and am in my third recurrence in less than 3 years. I started Avastin with Cytoxan 2 weeks ago (once every 3 weeks) and so far only mild headache and fatique. I am very aware of the possible side effects of Avastin, but figure that I have absolutely nothing to lose.
I am a Kaiser patient and they are paying the full costs of treatment with no hassle at all (I'm in So. Cal). I'm 71 years old and was diagnosed in May 2006.
I also went thru the Molecular Profiling (Kaiser paid some and a local Foundation paid the rest).
My thoughts and prayers are with you.
Georgi
- By Gia
- Posted February 20, 2009 at 6:24 am
- Report post
Georgi, Could you explain molecular profiling?
I am on Avastin every other week and oral cytoxan---just had my second dose. So far so good as far as side effects go. I am stage III with 3rd recurrence. Best to all, Gia
- By PLE
- Posted February 20, 2009 at 10:28 am
- Report post
I was diagnosed with Stage IIIc in July of 2007. I started chemo and Avastin immediately and finished Avastin in November of 2008. I have been in remission since November of 2007. My CA 125 was 3,000 before surgery and is now 16. My Medicare/Anthem paid everything.
The only side effects I experienced were my constantly stuffy or runny nose, some abdominal spasms, achy joints, and hypertension. None of these interfered with my day-to-day life.
I would recommend going on all clinical trials that are offered...it will help not only you but all women in the future!
Everyone hang in there!
- By LindaK
- Posted February 20, 2009 at 2:23 pm
- Report post
I am taking Avastin and Doxil every 3 weeks. Have completed 6 treatments. So far only mild side effects and my CA125 has gone from 31 to 16.This is a stage 2 study at New York University by Dr. Franco Muggia.
- By Georgi
- Posted February 20, 2009 at 6:41 pm
- Report post
Gia,
Wow, sounds like we are really on the same track. As I mentioned, I had gotten in touch with a Scientific researcher (Dr Laura Shawver). She has had Ovarian Cancer, and she set up a Foundation ( Clearity Foundation) to help OVC patients pay to have the molecular profiling done ($1,000). The testing uses cells from you initial surgery (in CA hospitals are required to keep these for 10 years). Then they use the various cells to determine which type of Chemo they are most sensitive to. In my case the sensitivity was different to the cells from the right ovary and from the left.
These results are then sent to your ONC with suggestions as to which meds to use.
Laura's Foundation website is www.clearityfoundation.org
Her phone number is 1-858-229-9270 (San Diego). If you do contact her, please tell her that I (Georgiana Coray) suggested that you call. She is truly an angel!
You can also use the internet to google "molecular profiling" or "clearity foundation".
By the way, I am a Nurse Practitioner and my hubby is a Physician. A very good friend who is a Pathologist in Philadelphia is extremely supportive.
Yes, I do know the possible complications of Avastin, but what have I got to lose. PLEASE stay in touch.
Georgi
- By Georgi
- Posted February 20, 2009 at 9:24 pm
- Report post
Gia,
This is Georgi again. If you'd like, feel free to contact me on regular e-mail: georgic@cox.net or on the
telephone (1-619-464-3988) or whatever works for you.
Hope to hear from you.
Georgi
Add to the discussion