Just started Topotekan/Avastin chemo

Haven't been here for awhile, and now that 2nd shoe has dropped. DXed stage 3c OVCA Jan.'06; finished Platinum drug chemo in Aug. '06. Was in remission until about Jan. '07 when began to have symptoms again, now CT scans and rising CA-125, as well as Gyn.Onc.'s exam, show small implants in and around my liver. Chose the Topotekan/Avastin chemo protocol because my Gyn. Onc. feels that since I had such a hard time with the Platinum drugs, and my recurrence is early, I may be Platinum drug resistant now. Had my first Topo/Avastin treatment the day after i was told my cancer is recurring. Possible side effects and general information on these drugs is very scary, but my Gyn. Onc., who is tops in her field, assures me she believes this protocol will work very well for me. Now I have questions.
Have any of you had this chemo? The schedule for me is: 1st rnd, Topo/Avastin; 2nd rnd, 2nd week, Topt only; 3rd week off, then repeating. What is your experience with this regemin. Does it seem to kill the cancer? Have you had any of the terrible possible side affects listed? Since this is my 2nd line treatment, I guess I am feeling that is the treatment may be worse than the cure, maybe it is time for me to opt for another treatment, or even _no_ treatment; I want the best quality of life I can have in the time left me. Admittedly, so far the effects of this first Topt/Avastin chemo are not nearly so severe as the Cicplatin/Taxol was, but I feel sick and gloomy and exhausted and ill.
Any input from anyone with experience with this chemo would be greatly appreciated! Thank you all so much.

[SimplyStar]

Daughter dx  June 2006,   had c/p first line   finished Nov,  recur Feb 2007  topotecan/tykerb {trial} didn't work 2 full months, April, May, lesions grew,  now on Doxil, trying to get Avastain added,   didn't have serious side affects with the trial,  I am going to suggest to her that she ask for the heated treatment, it will mean surgery again,  will have to get this past Mayo, but she needs to find something that works soon.  Researched the heated chemo, sounds very promising.  Only receives the Doxil q4 weeks , have to get at the minimum of 4 treatments before results show up.  Let me know how the topotecan/avastin works for you please.

[freshair]

Let's stay positive all together on this forum. Know that years ago we didn't have all these options. We'll bear the sometimes awful symptoms together. But it may not be as bad as it seems. Rent funny movies on your down days.

The drugs that you are taking sound like a very good combination.

Quality of life is not quality when the cancer takes over. Quality is controlling it.

I look forward to hearing of your success with this combination of drugs.

Stay strong and be well,
Helen

[Helmar]

Hello...This is one lousy disease, and it's always sad to hear of recurrence, but that seems to be the nature of this beast, so I'm very sorry to hear that you have got to face this now. Iv'e had Topotecan... but only a couple of cycles, as it splits the cells,and it seems like you have more cancer to deal with, but my Oncol. put me on Taxotere/Carbo immediately, and that brought my numbers tumbling down from 7500 to 290 after 7 treatments.
Unlike you in wanting quality for your time left... I want quantity, and I'm looking at being around for lots more years. I just have this thought in my head, and no Oncol. or anyone else will make me change my ideas on this. Iv'e been doing chemo for just on 3 years now, (Stage 4) as I recurred after only 9 months back in Feb'04, but I'm feeling well, eating well, and have a good quality of life, with no pain or discomfort, and I still do what I like, eat what I like, so I'm happy. I don't care about this cancer.. it will do what it wants even if I worry, so I don't. I take each day as it rolls out, and enjoy it all.
I hope the new chemo combo will work well for you, and you will soon be feeling much better, and hopefully have a good remission. We all hope and pray for that.
Have nice weekend... and try not to 'stew' about this.
Hugs....Helen...

[dian07]

I wish Helen was an elixer we could all ingest.....I would certainly down a few shots!
Peace.
dian

[katditty]

Thanks for your input and for keeping me looking on the upside of things.  I know that Avastin has not actually been approved yet by the FDA for OVCA treatment but has been approved and widely used in other CAs including colon.  I guess I would really like to hear from anyone whose OVCA has recurred early and who has had the Avastin treatment, and hear about what your experience has been with the side affects.  So far (3 days out from first chemo) I feel much less devastated than I did when I was having the Cisplatin/Taxol, but still do not feel very well.  At least right now I am able to sit up, walk around, do some light chores, and whit the Cisplatin/Taxol I was flat out in bed or on the couch, sick as a dog all the time.  Anyway, please, if you have had the Avastin, let me know what you think of it, okay?  Thanks a million, everyone!

[freshair]

Hi,
There aren't many women on this forum that have done Avastin. We have heard that it is very good. I think so far on this forum one person.

Jatoo's wife is using it. Maybe he will be on the forum and see your post. Then he can tell you of his wife's symptoms. It is supposed to be very good for getting ride of ascites also. You can also go though previous posts and see what Jatoo has posted. It is working for his wife.

Can I ask you what hospital/doctor is giving you this? I am really curious because most don't do it (I think for insurance reasons). I would really like to know. Good doctor you have.

Take care and I hope this works wonders,
Helen

[katditty]

Thank you, Helen, I will look for Jattoo's input. My Gyn. Onc. is Dr. Barbara Goff and she is at the Seattle Cancer Care Alliance, affiliated with University of Washington Medical Center in Seattle.  My Gyn. Onc. is tops in her field and is confident about this treatment; she also assures me that they are treating other women with OVCA using the Topotekan/Avastin protocol. There just doesn't seem to much information out there about it, aside from what the hospital printouts give, and I would like to know as much as I can.
Thanks for your kind words and for your support.  Right now I kind of feel like I am hanging out there in the wind all by myself with this new treatment, and I have so many questions...
Bless all here!
Katherine

[Jatoo]

Dear Katherine:

This option was offered to us. We had to choose between Topotecan or Gemzar with Avastin. We chose Gemzar because she just finished one(1) cycle of Topotecan alone and it didn't work. So we chose Gemzar (with Avastin)  since her cancer has not seen it. The rest is a long story. You can go to the archives and see several posts re this regimen.

The bottom line is since January of 2007 when we had our first treatment, it reduced her CA 125 from ~500 to now 44. Her tumors have remained stable except for an isolated fluids in the abdomen which are not scattered. It is a relatively easy treatment - Avastin seems to increase platelets and Gemzar reduces them so it complements each other. With this kind of disease it is the closest you can get towards remission. Don't let the cancer go haywire, stabilize it.

The Gemzar is a reduced dosage and you may have to do that with Topotecan since Avastin has been tested with lose dose chemo drug, Cytoxan or Cyclophosphamide. Now if your Onc is really tops in her field, ask her if she can add a hormonal drug, like Tamoxifen, Femara, or Arimidex ( please see archives on Hormonal Drugs under the Recurrence Forum for explanation).
Femara has been added to her treatment around April 2007. The sooner you get a hormonal drug the better (it takes like 30 days to have its effect).

My wife (today is her two(2) year anniversary) is also Platinum-resistant recurring after 3 - 4 months after CarboTaxol. So she just can't go back to those drugs. I hope this combo works for you. And if it don't, retain Avastin and change Topotecan to Cytoxan, Gemzar or Doxil.

I hope this helps and please keep in touch.

Jatoo

[Jatoo]

Besides Post a Question (the one you clicked when you posted this question) is Browse Archives, click that and then click Ovarian Cancer Chemotherapy, there you will find Recurrence Forum, Hormonal Drugs additional weapon to fight... posted on May 25, 2007.

[SimplyStar]

How can a person get the onc to order avastin  they tell Leslee it is not approved and so they cannot give it    all she is getting right now is the doxil  

[Jatoo]

Hello. I gave a number of Genentech (Maker of Avastin) to Diane B. She called and she got approved. When you call the manufacturer, ask customer service and be referred to a department that can approve Avastin based on humanitarian reasons.

Let's pray that they grant it.

Jatoo

[katditty]

Thank you, Jatoo, for your input.  Please, can you tell me why the addition of hormonal drugs is so important with this protocol?  I was still a bit in shock when discussing options with my Gyn.Onc. and I don't recall this being discussed at our meeting, and I had the first chemo with Topotecan/Avastin the very next morning.  My next chemo is next week with Topo only, plus a Neulasta shot, then a week off, then the process repeats with Topt/Avastin & a Darbo shot, then Topo only & Neulasta shot, then a week off...
How do I go about reviewing past posts on this site?  I have been away quite awhile and I have never looked at the archives before.  I'm in a bit of a dither right now from all this and can use all the guidance here that I can get.  Thank you again for reponding to my questions! katherine

[slubin]

Hello:
My mother was diagnosed with ovarian cancer 12/06...she had the carbo/taxol for several months..counts came down to 80 then started up again.  She went on Doxil for one tx & counts were still climbing (quite rapidly).. her onc recommended gemzar only after one tx of doxil..short lived results good results (total of 8 weeks counts going down) her onc wants her to start topo/avastin right away, 2 weeks topo & avastin -1 week topo only..one week off.  I will let you know how she does.  Susan

[Lasna]

Hello,

My mother started her treatment with Avastin and another chemo-substance the name of which I need to find out as yet. She was diagnosed stage IIIc in May 03 and has undergone many, many cycles of chemotherapy. After her first one she was in remission for one year and everything looked very promising. But after about one year she had a recurrence (lymph nodes). Again, chemos for many months. In the meantime she has metastases on her liver, in the peritoneum and lymph nodes. I don't know about her CA125, but I'll find out.

Avastin has not been approved in the EU either, but we are lucky to receive it at our local hospital in Austria. However, I'm very scared about the side effects (in particular perforation of intestines, as she suffers from severe constipation).

My Mum had her first infusion of Avastin yesterday. In the evening she had a strong headache and her blood pressure started rising. It has come done slightly today. Apart from that she says that she can manage and hopes that things will stabilise a bit. Her doctor also mentioned that her feet and hands would be starting to show inflammations.

I'd really appreciate if you - katditty, Jatoo's wife or Susan's mother - could report on the progress and possible side effects this treatment has shown so far.

I'm so glad I found someone to share my thoughts and worries with, as in Austria there is very little information on this treatment around.
All the best,
Ines

[Ruthmee]

How do you get Avastin approved by insurance, or who do you contact at Genetech to work out payment. My Oncologist would like to add it to topotecan, but Avastin is not approved.

by Ruthmee

[crecco]

Well I have been on Gemzar alone and Topotecan alone. On Gemzar from Aug 07 to Nov 07. I didn't last long but it worked while it lasted.Brought my CA down from over 600 to its lowest of 157. But thenny CA started rising again. We finally switched to the Topo in Nov. Getting ready to start round 3 tomorrow, but so far have not had any luck. At last check CA was still rising. Will check CA again tomorrow and if it is still going up. I think what he has planned is to finish this round of Topo then it is on to Avistan with either Taxotere or Abraxane.
So I am also interested on the effects of Avistan and how it works.
  The best of luck to you. LOL Chris

[Kimchi]

I remember reading a post on getting  Avastin approved by insurance...Think Jatoo contacted Genetech directly...If you have time you might want to research the archives..Unfortunately Jatoo is not blue (did not set up a profile) cause you would be able to find it easier...You might want to creat a new comment to his attention.  Good luck

[amusedeasily]

I will be starting Avastin with some chemo next week.  We have excellent insurance but as has been said, Avastin is not FDA approved for ovarian treatment and is not then covered by our insurance.

Our doctor's office participates in something called 'Single Point of Contact (SPOC)'.  You are enrolled in a program through the drug company while they simultaneously try to get approval by your insurance company.  It is almost 100% insurance denied for ovarian.  So they appeal and are usually denied again.  By this time you should be accepted into the drug's program and they provide you Avastin for free ( I suspect it helps them to get it FDA approved).  We have to put down a $4,000 deposit which we will be reimbursed by the insurance company maybe 6 months down the road.

We don't have to do a thing except pay the $4,000.  Our doctor's admin staff handles it all.  He is using Avastin routinely now for ovarian and has said he's had very good results.  I am on a very early recurrnce, less than 4 months, so carbo is out.  

The major side effects are perforated intestine but it seems to be associated with the woman who have had bowel/intestinal involvement.  Your blood pressure also goes high. And white counts/red counts low.

Good luck to anyone who reads this ... an ovarian vaccine just went into clinical trials.  The great thing about the vaccine (as well as the breast vaccine) is that it will be useful to current ovarian patients, unlike the cervical vaccine.  We just have to hang in there!

Janet (Frederick, Maryland)