Jattoo and Helmar/please read recurrence forum

[plady]

Please my response to your posts under my recurrence forum.  I wanted to make sure you both saw it.

thanks,
plady

[Helmar]

Hello plady... sorry I'm a little slow in replying to your Recurrence post, but it's been ' all go' here. When contemplating which is the best way to go re further treatment, it's always a hard call. There are many drugs and combinations to consider, and so I can only say what I've personally experienced. I've heard that Avastin is very good, but I suppose one doesn't know how it will go, until it's tried.I've not had Avastin, so don't have any input from experience. I've just gone directly from Topotecan to Taxotere/Carbo now, and it's working really, really well for me after only two treatments, so my thoughts are along those lines....for me, anyhow. Jatoo is a wealth of knowledge and has some really good suggestions. Doxil was good for me too, but the side affect being large, sore mouth ulcers, wasn't the best...still it worked.
Wishing you well, and I look forward to hearing what you decide on.   hugs....Helmar.

[plady]

Jatoo:

I was also wonder what kind of side effects your wife has had on Avastin.  How is her treatment progressing.?

plady

[Jatoo]

Dear Plady:

1. What about Taxol/Carbo? Can you refresh me again as to when your surgery was and what was given afterwards?

2. I saw your question to vfc. Our Onc won't also give us Avastin because it is not FDA approved and I understand because then she will be on malpractice. Our GynOnc from the same hospital who happens to be the Chief GynOnc recommended it and thus was able to get Avastin. He supported his recommendation by GOG (Gyne Onc Group) studies that showed Avastin works.

3. If you are seeing an Onc, ask a second opinion from a Gynonc of your hospital or within your system. A good GynOnc will seek for a cure outside of the box, study clinical trials and recommend non FDA approved drugs and can recommend them off-label. Insist on what can cure you.
What is better: standard drugs which is not promising or promising drugs which are not standard?

Jatoo

[plady]

Jatoo:

My initial diagnosis and surgery was June,2005.  I received gemzar/carbo until November2005.  My ca125 came back up in January 2006.  Recieved Taxol.  They tried taxol and Cisplatin by ip but would not distribute.  Started Doxil in September 2006.

I guess I'm confused.  Are you saying to go and see a regular gynocologist instead of a oncologist/gynocologist?  I don't understand.

plady

[plady]

I just re-read your post.  I do go to a Gyn/onc.  How did you manage to get treatment from your gyn/onc locally?  My gyn/onc mentioned one time that he can't give me any treatment that is not FDA approved.  I am trying to find a way to get the treatment without going to Arizona.  Of course, I will do what I think I need to do, if I can just figure out what that is.

plady

[plady]

Jatoo:

I was on Carbo/gemzar my first go round of chemo.  It took my ca125 down fast and down to 5.  Then reoccurred 3 months later.

plady

[plady]

Jatoo:

My mind is swarming with questions, and as you can tell by now I am very upset so I keep forgetting to ask all the questions I need to ask.  What did you mean when you said that Avastin was non chemo?

plady

[Jatoo]

Dear Plady:

Here's what I will do:

1. Ask your GynOnc if they can give you Avastin plus Topotecan. (This was also recommended by our GynOnc). Your cancer has not seen Topotecan yet so who knows plus the fact that you will have Avastin which can work on its own. If not ask for a letter allowing for a second opinion from another GynOnc from another hospital or from the same hospital until you will reach the chief who can overrule standard therapies. Getting an insurance company to pay for Avastin is a tough call. I saw a bill as much as $70,000. So we were really fortunate that we got it for free and not on a clinical trial. I think this is where prayer really works altho it works always. This is also the reason why Oncs will recommend that you go on a clinical trial so you can get Avastin for free.

2. Call MD Anderson. It's much closer to you.

3. Avastin/Tarceva looks really promising. Given the choice I would prefer it to Topotecan alone.

I hope this helps on your decision-making.

Jatoo

[plady]

Thank you for  your advice.  I will think and pray this weekend that I make the right decision.  Right now I am so upset I need to sit back and collect my thoughts.

thank you again for your time, it is greatly appreciated.

plady

[vfc]

plady,

I would listen to Jatoo's opinion. It is very wise.

In my case, the Chief GynOnc at M.D. Anderson International Espa

[Jatoo]

Dear Plady:

1. Try to read vfc notes below on your post. She somehow is in th medical/pharmacology field and knows how chemo/drugs work. Plus the fact that she has tried many combinations herself. She has also microscopic cancer cells like yours which makes her invaluable.

2. Have you tried Gemzar/Carbo before? How did it work?

3. I saw the University of Arizona clinical trial of Avastin/Tarceva and says that this combination has synergistic effect. While Avastin is an antiangiogenesis drug (meaning it stops pathways from feeding tumors) Erlotinib(Tarceva) is an EGFR (Epidermal Growth Factor Inhibitor) receptor inhibitor. EGFR is activated in approx. 30% of all solid tumors. Tarceva alone had a clinical trial on OvCa in 2001 and it had a 59% positive response rate (partial plus stabilization). My wife was willing to go phase I on Avastin with another antiangiogenesis drug before and yours is phase II and not random. Which means your study is much better.

4. Have you check with MD Anderson in Texas about their clinical trials. I won't be surprised if you can find at least 10 on Avastin or antiangiogenesis drugs alone. We actually wanted to go to MD Anderson.

5. Plady with microscopic cells, I don't know how two(2) biologic drugs (Avastin plus Tarceva) will work compared with biologic and chemo (Abraxane, Carbo, Gemzar, etc.) Ask your gynonc not just onc about that. I definitely would choose Avastin plus Tarceva or another combination(like chemo drug) versus Topotecan alone. Avastin definitely shrinks tumors and removes ascites in many cases.  

6. You definitely will help a lot of platinum-resistant patients as you are undergoing this process. I will pray that you will find your cure.

7. Lastly just keep on posting anytime you need another opinion.

Jatoo