Avastin: your opinion for ovarian cancer (clinical trial now for papillary serous uterine cancer)

lindaprocopio

There are 4 of us on the CSN Discussion Boards that have UPSC (Uterine Papillary Serous Carcinoma), a rare type of aggressive high-reoccurance endometrial cancer that has much more in common with ovarian cancer than with the more common type of uterine cancer. We post under the "Gynecologic Cancers Other than Ovarian" Discussion Board, but all 4 of us lurk here often to read your posts, as our prognosis and treatment is so similar to yours. One of our 'UPSC-sisterhood-of-4' has been offered a clinical trail that includes Avastin in with her chemo regime. (They are trying to get Avastin FDA-apporval for UPSC treatment.) I was hoping some of you who have taken Avastin could comment on the side effects and efficacy of adding this drug to your chemo. It's being used for lung cancer, and I understand recently used for ovarian cancer. With UPSC, if you can make it a year without reoccurance, you have a good shot of getting out clean. But if it reoccurs even once, the prognosis is very poor. So we're pretty desparate to let them do just about anything to us to prevent reoccurance. Thanks for any input. Feel free to pop into the 'Gynecologic Cancers Other than Ovarian' and post on our UPSC thread we have going there. 3 of us are in current treatment (1 having radiation, 2 of us having chemo) and we have one 2-year survivor providing us with hope.

Kgirl

Avastin use
I have not used Avastin as I was not eligible for any open clinical trials. I do know that the gold standard of treatment for ovarian cancer, by 2011, will include Avastin along with carboplatin and taxol. The only delay is waiting for clinical trials to be concluded and then approval by the FDA. If I do have a reoccurance I will be asking to be included in a clinical trial which includes Avastin. There are some side effects to be considered and there are other women that can answer that question better than I. I do know that the most serious side effect is venous thromboembolisms (blood clots). There are drugs such as lovenox which can prevent this.

Kathy

BonnieR

avastin
Hi Linda, I was on Avastin/Oral Cytoxan back in 2006 ~ I asked to try it and my Doc said okay along with the insurance company. This was at a time when my cancer had spread throughout my abdomen again and grew no matter what chemo we tried.

Well as you can see I am still here, it starved off half of the tumor growths I had, proved by a pet scan. I did have terrible high blood pressure and excrutiating migraine like headaches(except not light senstive) I use imitrex all the time along with high doses of bp meds and made it through all 12 treatments. I am grateful my Doc was willing to try it, I was his the first patient he used it on, but not the last. I am glad to hear it will be FDA approved, but sad it is taking so long.

Good luck with your treatments. Hugs ♥ Prayers Bonnie

mopar

HELLO, LINDA
Once again, I'm so sorry to hear that there is another 'rare' form of cancer, but more sorry that you and the others must deal with this. And the fact that promising, important approaches are taking too long to be approved is difficult to understand. To me, this 'red tape' has no justification.

But more importantly at the moment is what CAN be done for you. I have no personal experience with Avastin, but I can see that you are getting, and will get, some helpful responses. I just wanted to let you know that I will be praying for you and the others, that whatever you need will be available. I also hope that you will all respond well and with great success. I have a friend who has been through IBC breast cancer, which is also rare. Sometimes she feels somewhat isolated, alone, in that it just doesn't get the research and attention it needs. Hopefully soon, that won't be the case with her or all of you.

Thank you for sharing with us. Please keep us posted.

(((HUGS)))
Monika

deanna14

BonnieR said:

avastin
Hi Linda, I was on Avastin/Oral Cytoxan back in 2006 ~ I asked to try it and my Doc said okay along with the insurance company. This was at a time when my cancer had spread throughout my abdomen again and grew no matter what chemo we tried.

Well as you can see I am still here, it starved off half of the tumor growths I had, proved by a pet scan. I did have terrible high blood pressure and excrutiating migraine like headaches(except not light senstive) I use imitrex all the time along with high doses of bp meds and made it through all 12 treatments. I am grateful my Doc was willing to try it, I was his the first patient he used it on, but not the last. I am glad to hear it will be FDA approved, but sad it is taking so long.

Good luck with your treatments. Hugs ♥ Prayers Bonnie

Can I ask?
Did you have high blood pressure prior to taking the Avastin? Also, once you completed the Avastin did your blood pressure go down? I have UPSC and have been offered a clinical trial that is being done to try to get FDA approval for my cell type. It is randomized, so I might not even get the Avastin if I decide to do it. I just like to hear from people who have been there before. I am hearing a lot of good things about Avastin. I think I will probably tell them to include me in the trial. I hope I get the Avastin and that my BP stays down. Do you know at what point they would discontinue the Avastin because of BP? Thanks for sharing your experience, it really helps.

Good thoughts and prayers to you. Stay strong.
Deanna

MichaelaMarie

mopar said:

HELLO, LINDA
Once again, I'm so sorry to hear that there is another 'rare' form of cancer, but more sorry that you and the others must deal with this. And the fact that promising, important approaches are taking too long to be approved is difficult to understand. To me, this 'red tape' has no justification.

But more importantly at the moment is what CAN be done for you. I have no personal experience with Avastin, but I can see that you are getting, and will get, some helpful responses. I just wanted to let you know that I will be praying for you and the others, that whatever you need will be available. I also hope that you will all respond well and with great success. I have a friend who has been through IBC breast cancer, which is also rare. Sometimes she feels somewhat isolated, alone, in that it just doesn't get the research and attention it needs. Hopefully soon, that won't be the case with her or all of you.

Thank you for sharing with us. Please keep us posted.

(((HUGS)))
Monika

Avastin
Hello, Linda. I did have Avastin with Taxotere for a total of eight months, ending about July 1st of this year. Basically I had no problems at all with it. I've had Taxotere before, and did have quite a few side effects from it, like severe tearing and eye problems. I would say that in my case, I only got a "holding back" result, as my CA-125 was basically the same at the end as at the start. I think it really helps with some, and I think that I would jump at the chance to use it. I've had several recurrences, so my case might not be as helpful as someone that hasn't had as many chemotherapies as I have had. Unlike the severe headaches that Bonnie got with it, I had none. I've had high blood pressure long before my cancer diagnosis and take medication for it. While on Avastin, I didn't have any change from my normal numbers. I hope this helps some. I hope that you all do well and hang in there. We're all in this same "nightmare", aren't we? With lots of hugs, MM

carol2dogs

Avastin use
Linda,
I am sorry you are going through a rough journey, and I am glad you found this discussion board. Like MichaelaMarie, I have had the Taxotere/Avastin combination, and I too have found that my CA125 numbers have not gone down as much as I had hoped. I was taking Carboplatin and Taxotere, but had an allergic reaction to the carbo (second round of treatments with the carbo). My recent chemo was my 10th and my fourth with the Avastin. My CA125 only went down 2 points this time.
On the plus side, I have had few if any problems with the Avastin. My eyes tear up a lot, but I wear contacts and have dry eyes, so this is hardly a bad thing for me.
We are all different, so maybe this will work well for you. It is certainly worth a try.
Good luck to you.

BonnieR

deanna14 said:

Can I ask?
Did you have high blood pressure prior to taking the Avastin? Also, once you completed the Avastin did your blood pressure go down? I have UPSC and have been offered a clinical trial that is being done to try to get FDA approval for my cell type. It is randomized, so I might not even get the Avastin if I decide to do it. I just like to hear from people who have been there before. I am hearing a lot of good things about Avastin. I think I will probably tell them to include me in the trial. I hope I get the Avastin and that my BP stays down. Do you know at what point they would discontinue the Avastin because of BP? Thanks for sharing your experience, it really helps.

Good thoughts and prayers to you. Stay strong.
Deanna

blood pressure
My blood pressure was always low, never runs high or rarely. It did go back down after I was off the drug for awhile. Mine was sky high and I still got to stay on avastin. Hope that helps and best of luck with the study. I heard by 2011 avastin will be fda approved for ovarian cancer... or so they say. Hugs bonnie

saundra

Welcome and ask all you want
Thanks for your post. I have ovarian papillary serous carcinoma cells as diagnosed by needle biopsy prior to surgery (debulking). I am waiting to see what chemo they want to do on me as I am non responsive to Taxol after 20 months of it, eight with carboplatin. My CA-125 blood marker is on the rise so I am now taking the anti estrogen pill, Femara to see if it will bring it down. Do you UPSC gals get this blood marker test also? I'll check out your discussion group. Saundra

lindaprocopio

saundra said:

Welcome and ask all you want
Thanks for your post. I have ovarian papillary serous carcinoma cells as diagnosed by needle biopsy prior to surgery (debulking). I am waiting to see what chemo they want to do on me as I am non responsive to Taxol after 20 months of it, eight with carboplatin. My CA-125 blood marker is on the rise so I am now taking the anti estrogen pill, Femara to see if it will bring it down. Do you UPSC gals get this blood marker test also? I'll check out your discussion group. Saundra

Yes, CA-125 is a better marker for UPSC than CT-scans.
UPSC is so similar to ovarian cancer, treated almost exactly the same way, with debulking surgery, aggressive chemo of Taxol and Carboplatinum, vaginal cuff radiation, and external pelvic radiation. We, too, face high reoccurance rates. I think all of the UPSC girls have had CT-scans that show 'no evidence of disease', but no one pays any attention to that when planning treatment. UPSC is sneaky and travels microscopically, hiding from CT-scans. Even those FEW lucky enough to be diagnosed before Stage 3 or 4 are encouraged to undergo the same aggressive surgery, chemo, and radiation regime as those of us diagnosed in later stages. My CA-125, taken before my 1st chemo treatment last Monday, was 96 1/2. I will be holding my breath until I learn whether the chemo had any effect when I have my blood drawn Dec. 8th (prior to my 2nd round of chemo.) I hate to put so much stock in such an imperfect tool as CA-125's, but that's the only marker we really have to use. (Example: My pre-surgery CA-125 was 50. After surgery it was 190. 2 weeks after that it was 96.5. Obviously other things going on in my body are playing with my CA-125 numbers.) What a blessing you all are to us! We may not be Ovarian Cancer SISTERS, but we're at least first COUSINS! Thank you so much for welcoming us.

1 new question: I am entering the middle-week of my first chemo round, the week I was told my white count would be at its lowest and I would be most susceptible to infection. Other than hand-washing and a new toothbruch and antibacterial wipes, did/do any of you take extra precautions during this 'vulnerable' time? Any strategies to share with Marge and me, who are both undergoing chemo right now?

saundra

White count
I have been very fortunate and have only had one bladder infection since I started this chemo road.
My blood counts have always bounced back to normal. I wash my hands often, carry hand sanitizer but don't do anything else. I do not purposely expose myself to sick friends but do go to movies, church and other crowded places. I pray that God will protect me from dangerous germs. I have traveled to Costa Rica and other US destinations. Saundra

saundra

lindaprocopio said:

Yes, CA-125 is a better marker for UPSC than CT-scans.
UPSC is so similar to ovarian cancer, treated almost exactly the same way, with debulking surgery, aggressive chemo of Taxol and Carboplatinum, vaginal cuff radiation, and external pelvic radiation. We, too, face high reoccurance rates. I think all of the UPSC girls have had CT-scans that show 'no evidence of disease', but no one pays any attention to that when planning treatment. UPSC is sneaky and travels microscopically, hiding from CT-scans. Even those FEW lucky enough to be diagnosed before Stage 3 or 4 are encouraged to undergo the same aggressive surgery, chemo, and radiation regime as those of us diagnosed in later stages. My CA-125, taken before my 1st chemo treatment last Monday, was 96 1/2. I will be holding my breath until I learn whether the chemo had any effect when I have my blood drawn Dec. 8th (prior to my 2nd round of chemo.) I hate to put so much stock in such an imperfect tool as CA-125's, but that's the only marker we really have to use. (Example: My pre-surgery CA-125 was 50. After surgery it was 190. 2 weeks after that it was 96.5. Obviously other things going on in my body are playing with my CA-125 numbers.) What a blessing you all are to us! We may not be Ovarian Cancer SISTERS, but we're at least first COUSINS! Thank you so much for welcoming us.

1 new question: I am entering the middle-week of my first chemo round, the week I was told my white count would be at its lowest and I would be most susceptible to infection. Other than hand-washing and a new toothbruch and antibacterial wipes, did/do any of you take extra precautions during this 'vulnerable' time? Any strategies to share with Marge and me, who are both undergoing chemo right now?

Extra protection on side effects
My oncology nurse told me to get and take L-lysine, an amino acid you can buy in the Vit. section of most drug stores to take daily to avoid mouth sores. I have not had one mouth sore.
I also learned on this site that Vit. B-6 and L-glucosamine were good for hand and foot numbness and pain (neuropathy) and I take them daily and have had minimum of those side effects. Mainly extremely hot feet which I also go to bed with a bag of rice that I keep in the freezer to cool them down. Although I am 70 I have had what I call minimum problems from Taxol/carboplatin, the main problem is constipation the week of the chemo. I handle that ahead of time by taking a stool softener the night before and start a mild laxative as soon as I get home from the infusion. The main thing is to keep things moving. You will not lose your hair for 3 weeks..it will start itching when it is ready to come out. The loss of hair includes you eye lashes and brows and all over your body. I chose to shave mine when the mess got so bad and I had short hair. I order wigs from a company on the internet (Paula Young) and have had good results with this company. I have 6 as they are around $50 and look much better than the one I got from the Feel Good shop at my cancer center. I found the short light weight ones the best but I have lots of hot flashes.
Cotton bandanas are comfortable for "at home" and I like a sleep cap for cold nights. Saundra

deanna14

saundra said:

White count
I have been very fortunate and have only had one bladder infection since I started this chemo road.
My blood counts have always bounced back to normal. I wash my hands often, carry hand sanitizer but don't do anything else. I do not purposely expose myself to sick friends but do go to movies, church and other crowded places. I pray that God will protect me from dangerous germs. I have traveled to Costa Rica and other US destinations. Saundra

Looking for Bonnie
Hi Bonnie,
I hope today finds you feeling well. I have another couple of questions about the Avastin. Did they take you off of it when your blood pressure went up? Did your blood pressure go back down after you went off of the Avastin? Did you have high blood pressure prior to taking Avastin?
Thank you for sharing your experience. Stay strong.... Hugs, Deanna

Please disregard these questions. I just found your post answering these above. Sorry!

LPack

lindaprocopio said:

Yes, CA-125 is a better marker for UPSC than CT-scans.
UPSC is so similar to ovarian cancer, treated almost exactly the same way, with debulking surgery, aggressive chemo of Taxol and Carboplatinum, vaginal cuff radiation, and external pelvic radiation. We, too, face high reoccurance rates. I think all of the UPSC girls have had CT-scans that show 'no evidence of disease', but no one pays any attention to that when planning treatment. UPSC is sneaky and travels microscopically, hiding from CT-scans. Even those FEW lucky enough to be diagnosed before Stage 3 or 4 are encouraged to undergo the same aggressive surgery, chemo, and radiation regime as those of us diagnosed in later stages. My CA-125, taken before my 1st chemo treatment last Monday, was 96 1/2. I will be holding my breath until I learn whether the chemo had any effect when I have my blood drawn Dec. 8th (prior to my 2nd round of chemo.) I hate to put so much stock in such an imperfect tool as CA-125's, but that's the only marker we really have to use. (Example: My pre-surgery CA-125 was 50. After surgery it was 190. 2 weeks after that it was 96.5. Obviously other things going on in my body are playing with my CA-125 numbers.) What a blessing you all are to us! We may not be Ovarian Cancer SISTERS, but we're at least first COUSINS! Thank you so much for welcoming us.

1 new question: I am entering the middle-week of my first chemo round, the week I was told my white count would be at its lowest and I would be most susceptible to infection. Other than hand-washing and a new toothbruch and antibacterial wipes, did/do any of you take extra precautions during this 'vulnerable' time? Any strategies to share with Marge and me, who are both undergoing chemo right now?

Precaution
Linda,

I too believe God created us all different. No two of us are alike. When I had my surgery January 28th and found out I was stage 3C (shocker) and then started chemo 3 weeks later, I stayed mostly indoors as I had to recup from the hysterectomy. I did wash my hands frequently, had antibacterial wipes for my hands and also laying by our commode. I did go to church once my time was up from surgery. Now here we are again into the winter weather (already in November) and I should be more cautious. I pray God's protection over me when I go out, but I realize I too need to do my part. I also have a low white count and am on a break from Hexalen until those counts go back up.

I really believe drinking lots of water will help a lot of the side effects we can get. I take calcium, complete multivitamin, B100 complex & slow release iron daily. No other meds praise the Lord!

First cousins are wonderful to have.

Love,
Libby

Dreamdove

lindaprocopio said:

Yes, CA-125 is a better marker for UPSC than CT-scans.
UPSC is so similar to ovarian cancer, treated almost exactly the same way, with debulking surgery, aggressive chemo of Taxol and Carboplatinum, vaginal cuff radiation, and external pelvic radiation. We, too, face high reoccurance rates. I think all of the UPSC girls have had CT-scans that show 'no evidence of disease', but no one pays any attention to that when planning treatment. UPSC is sneaky and travels microscopically, hiding from CT-scans. Even those FEW lucky enough to be diagnosed before Stage 3 or 4 are encouraged to undergo the same aggressive surgery, chemo, and radiation regime as those of us diagnosed in later stages. My CA-125, taken before my 1st chemo treatment last Monday, was 96 1/2. I will be holding my breath until I learn whether the chemo had any effect when I have my blood drawn Dec. 8th (prior to my 2nd round of chemo.) I hate to put so much stock in such an imperfect tool as CA-125's, but that's the only marker we really have to use. (Example: My pre-surgery CA-125 was 50. After surgery it was 190. 2 weeks after that it was 96.5. Obviously other things going on in my body are playing with my CA-125 numbers.) What a blessing you all are to us! We may not be Ovarian Cancer SISTERS, but we're at least first COUSINS! Thank you so much for welcoming us.

1 new question: I am entering the middle-week of my first chemo round, the week I was told my white count would be at its lowest and I would be most susceptible to infection. Other than hand-washing and a new toothbruch and antibacterial wipes, did/do any of you take extra precautions during this 'vulnerable' time? Any strategies to share with Marge and me, who are both undergoing chemo right now?

Do they have anything to base it on besides CA-125?
Linda, how were they able to diagnose the type of cancer you have if the CT scan didn't show anything and your CA-125 was 50 pre-surgery? Anything 35 or less is considered normal. I had stage 3 ovarian. Something showed up on the CT-scan and my CA-125 was 1,800 pre-surgery. Mine went steadily down and stays down now at low numbers. Must be frustrating if you can't base the progression of your disease on much of anything. If my cancer is going to reoccur, hopefully it will be caught on my CA-125 tests or CT-scans. They also look at symptoms such as the same ones I had when first diagnosed such as bloating, pain, weight gain, trouble with digestion, constipation, etc. I always get asked those things at my checkups. Do you have physical symtoms as well? Are they very similar to ovarian?

I have to add that I did nothing to protect myself when going thru chemo. I worked 25 hours a week as a checker in a grocery store the whole time I went thru chemo. There is no temporary dissability so I had to. I still had a 12-year old daughter at home to take care of. I had little bottles of sanitizer but never used them. I kept forgetting. I didn't wash my hands any more than usual. I didn't get a new toothbrush either. Yet I never even got a single cold or anything the entire time. It's not that I recommend doing that but just to point out that you don't want to be paranoid so that you are afraid to interact with others. Plus it was winter. I started chemo in Jan. and ended in May. I walked over a mile each way to work each day, in snow and cold. Plus errands. I didn't take any vitamins. But I did get shots to boost my white cell count. It got low so I got shots the day after every chemo. I think that made a big difference. Will you be getting the shots?

lindaprocopio

Here's how they diagnosed my cancer...
You asked how they diagnosed my cancer, when I had a clean CT-scan and CA-125 of 50 before any treatment. It was a fluke really. I had absolutely NO symptoms, and was exercising at the gym every day and working 50 hours/week. Then in July I had a routine annual PAP test that showed 'highly suspicious abnormal cells'. So my gynecologist did a sonogram and found a pencil-point size polyp in my uterus, and did biopsies of my cervix and uterous: both 'non-diagnostic'. So she did a D&C, removing the polyp in the process. In the polyp (only) they found those same 'suspicious abnormal cells', and referred me to a gynecologic oncologist. The Gyn-Onc said uterine cancer isn't found with a PAP test, and did his own biopsies of my cervix and cervical canal. I was negative for cervical cancer & HPV. But when he got my D&C slides, he diagnosed the cells as Uterine Papillary Serous Carcinoma and scheduled me for a full hysterectomy, staging & debulking October 10th. The surgery pathology showed that the cancer had traveled into 1 fallopian tube and 1 of the 25 lymph nodes he removed. And I was then diagnosed as Stage III-c. The other 3 "UPSC sisters" that post here all found their cancer by accident also. UPSC doesn't really have symptoms like the more common uterine cancer, not until very late stages. So I'm hoping my CA-125 goes down with each round of chemo. I had Round One (Carboplatium & taxol) 8 days ago, and won't be re-tested for CA-125 for 2 more weeks. That's my story.

Dreamdove

lindaprocopio said:

Here's how they diagnosed my cancer...
You asked how they diagnosed my cancer, when I had a clean CT-scan and CA-125 of 50 before any treatment. It was a fluke really. I had absolutely NO symptoms, and was exercising at the gym every day and working 50 hours/week. Then in July I had a routine annual PAP test that showed 'highly suspicious abnormal cells'. So my gynecologist did a sonogram and found a pencil-point size polyp in my uterus, and did biopsies of my cervix and uterous: both 'non-diagnostic'. So she did a D&C, removing the polyp in the process. In the polyp (only) they found those same 'suspicious abnormal cells', and referred me to a gynecologic oncologist. The Gyn-Onc said uterine cancer isn't found with a PAP test, and did his own biopsies of my cervix and cervical canal. I was negative for cervical cancer & HPV. But when he got my D&C slides, he diagnosed the cells as Uterine Papillary Serous Carcinoma and scheduled me for a full hysterectomy, staging & debulking October 10th. The surgery pathology showed that the cancer had traveled into 1 fallopian tube and 1 of the 25 lymph nodes he removed. And I was then diagnosed as Stage III-c. The other 3 "UPSC sisters" that post here all found their cancer by accident also. UPSC doesn't really have symptoms like the more common uterine cancer, not until very late stages. So I'm hoping my CA-125 goes down with each round of chemo. I had Round One (Carboplatium & taxol) 8 days ago, and won't be re-tested for CA-125 for 2 more weeks. That's my story.

Thanks for your story
Hi Linda, thanks for describing how they diagnosed you. It's a good thing you had a persistent doctor. Sometimes pap tests come out abnormal and it's just a fluke or infection or whatever and clears up. My sister had a couple of those. For you to have absolutely no symptoms.....I definitely had symptoms but they only came up shortly before I was diagnosed. I regretted not having gone for regular checkups. But nothing might have been found anyway unless I had a very thorough doctor. At least with ovarian cancer there is so much material available. I can look at books in the library, read articles in women's magazines, look up as much as I want on the internet. Gilda Radner pretty much put ovarian cancer to the forefront. Is there much on your type of cancer? I always find it helpful to read as much as I can. This website helps alot. I think I've gotten more out of it than any other sources of info about cancer. I hope you find that's true. Those of us on here only have our own experiences but we can compare them and relate to others.

Unknown

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