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coming to the end of my dense dose taxol

kayandok
Posts: 1223
Joined: Jun 2008

Hi everyone, I have not updated in a while, so thought I would check in. I started dense dose taxol and carbo in September after flunking doxil, and then taking the summer off. My CA125 immediately dived to 22 after a couple months, but neuropathy, a cardio issue, and fatigue drove me to plead for a break over Christmas. My doctor gladly granted that. It was wonderful memory making holiday with my son back from college for the first time after leaving.

When I went back on chemo in Janurary the CA was up to 60. I was not surprised. Then after being on it another month, it went up to 80. I was a bit surprised. I will be continuing my 6 month regime through the end of March (maybe April?) providing I don't have any more cardio or other issues. My neuropathy is getting worse in my feet, and although I have never had it my hands, I am beginning to get side effects there too. I can still walk but am very clumsy. I just want to sit in my chair all day with my feet up, it is so much work to move now. The very cold weather doesn't help that either.

The only chemo I have left to use is topotecan. I don't know much about it, and have never read about anyone getting very good results on it, but probably will go that route after a short break. When I did a chemo essay a few years ago, topo did NOT score well. Avastin did, however, and I really wish/hope/pray I could get that. It has not been approved in Japan for ovca and insurance doesn't cover. If I pay ut of pocket for it, it would be $5000/month. OUCH!

I am not depressed, but a bit discouraged, and weary of the fight. In June it will be 4 years since dx. I did have an 8 month remission after initial treatment (compltete cycto-reductive surgery and carbo/taxol for 8 cycles). I have been on chemo (gem/cis, doxil and now dense dose taxol/carbo) off and on ever since, and although I have tolerated it pretty well (never any blood boosters) and am able to plow forward even after being knocked off my feet for a few days, it is getting OLD.

Meanwhile, I am headed to the States to check in with one of my second opinion docs in Seattle (I am not holding out for any big huge miraculous solution from him, but Hey!!! you never know.) I will be asking about trials (I don't qualify here in Japan for them) and Avastin for sure. I don't have insurace in the US, so it complicates all of my issues for getting treatment there. All my surgeries have been in the US, and I payed cash for them.

The positive news is that I am going to surprise my mom and dad for their 79th birthdays (they have no idea i am going, and fortunately don't have a computer so don't read cancer boards or do FB:) hang out with my son, see friends (I will hopefully meet up with Britany Ching from this board too) and enjoy life!!!

Thanks for letting me share.

Hugs all around,
kathleen

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Kathleen....

Have you contacted Genentech about giving you Avastin for free? It's worth a shot....the worst they can do is say "No." I'm guessing you might have to pay for the actual infusions, but that's got to be a LOT less costly than 5K a month.

Carlene

kayandok
Posts: 1223
Joined: Jun 2008

Carlene for the suggestion. Yes, I was planning on doing that, and also discussing with my Seattle doc if he would administer it, in a situation like that without insurance etc.
I am as bull-headed as ever inside, just need to get the ol' body movin' I think....
k

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

You and I have been battling this almost the same amount of time. I have also had many combinations of treatment with very few breaks (dx 8/06). My neuropathy issues are almost like arthristis but no tingling. I am alo very clumsy and I don't think I'll ever get rid of that. I tolerated the Avastin well as far as the side effects. Unfortunatley, my blood pressure was not able to be controlled with meds and I had too much protien in the urine so they cancelled my last treatment. Now on Topotecan and so far no issues. I hope you can get the Avastin issue resolved and Carlene has a good idea. I was wondering if you have ever had IP treatments? I have had many of those too. I wish all the luck with your trip to Seattle to see your doc. That is one of the beutiful places in the US.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Good luck with the ongoing Taxol. I hope it continues to work despite the rise. You've been fortunate to have such great success. How long was your longest break from Taxol? I had no idea it makes you 'clumsy'. Is that from foot pain?

Contacting Genetech is a great idea!! I wish you much luck.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I hope you can get the Avastin approved. I've only had 2 Avastin infusions so far (plus a daily 50 mg tablet of Cytoxan oral chemo) but feel WONDERFUL on it so far. GREAT energy level (certainly MUCH better compared to taxol!) and no skin or neuropathy or blood count issues yet. It's almost like being on a chemo break for me.

I was heart-broken when the dense dose taxol stopped working for me, since it got me into remission twice (the only thing that did that). I did 17 rounds of weekly taxol after my initial 6 carbo/taxols. Topotecan is probably next for me, too, and I also couldn't find any success stories anywhere online, although I also didn't find anyone posting that it DIDN'T work for them.

Did you have Gemzar yet? I did a bunch of research on what else might be out there for me, and I'll post it here for you to ask your oncologist about:

* Avastin + Tykerb may be the first clinically-exploitable antivascular drug combination. High dose, intermittent 'bolus' scedules of Tykerb to coincide with Avastin administration. Tykerb enhancing the antivascular activity of Avastin was presented at an ASCO Breast Cancer Symposium on September 5, 2008.

* A Phase II trial showed promise in a new formulation of an old drug, irinotecan, as a potential treatment for women with platinum resistant or refractory ovarian cancer. Response rates were at the high end of what is expected for ovarian cancer therapies – remarkable because all of the women had resistant or refractory disease. The drug showed response in one-fifth of women whose tumors were not responsive to platinum based therapies, as well as in some women whose tumors were not responsive to pegylated liposomal doxorubicin (Doxil). Additionally, in this study, toxicity was less than one would predict from previous trials of similar drugs and. women had an average progression free survival of 18 weeks. The drug showed response in one-fifth of women whose tumors were not responsive to platinum based therapies, as well as in some women whose tumors were not responsive to pegylated liposomal doxorubicin (Doxil).

* The monoclonal antibody farletuzumab was studied – one Phase II trial showing safety and efficacy of the drug as a single agent in platinum refractory/resistant ovarian cancer. Another study of the drug gave patients a remission equal or longer than the first remission and high response rates.

* Another study explored the use of Yondelis as a single agent in relapsed ovarian cancer, showing a 30 percent overall response rate and a median time to progression of 5.3 months. In 2009, a Food and Drug Administration (FDA) advisory panel recommended that the drug undergo further studies before approval. The drug is not FDA approved for any uses.

* The combination of Gemzar® and Platinol® appears to kill more cancer cells than each drug given alone. Doctors have reported that the combination has produced a partial or complete disappearance of cancer in 69% of patients. Gemzar® is another chemotherapy agent that has been reported to produce anti-cancer responses in 11%-28% of patients with recurrent ovarian cancer. Although single agent Gemzar® appears very active, combinations of other chemotherapy drugs and Gemzar® have even greater anti-cancer activity.

* Monoclonal Antibodies: Monoclonal antibodies can be produced in a laboratory and are able to identify specific proteins on the surface of certain cells and bind to them. This binding action stimulates the immune system to attack and kill the cells to which the monoclonal antibody is bound. OvaRex® is a monoclonal antibody that has been designed to identify and bind to CA 125, a protein found on the surface of most ovarian cancer cells. Researchers from the Vancouver Cancer Center recently conducted a clinical trial evaluating OvaRex® in 13 patients with advanced ovarian cancer who had failed multiple treatments. Over half of the patients in this study demonstrated a significant immune response to treatment. Following treatment with OvaRex®, one patient survived more than 18 months and two patients are still alive after almost two years.

* Hycamtin®: A number of clinical studies have evaluated the use of Hycamtin® in patients who are resistant to Platinol®. About 14% of Platinol®-resistant patients achieved remission following treatment with Hycamtin®, indicating that it might be an effective treatment option for these patients. In a clinical study conducted in Europe, Hycamtin® was directly compared with paclitaxel in patients who were resistant to Platinol®. Hycamtin® was at least as effective as paclitaxel for killing cancer cells and producing cancer shrinkage. Over half of the patients who received Hycamtin® survived at least one year from the start of the clinical trial.

kayandok
Posts: 1223
Joined: Jun 2008

I have not even heard of some of these, Linda. I would definitely hire you for an investigator! A few years ago, I used to spend hours reading and researching, and at one point, I had to take a break, because I became a bit obsessed. In reading what you have found, I just realized that, maybe it is time to step up my research activity again! Thank you for sharing this info, LInda, it is very helpful.

My understanding is that the irinotecan is basically the same as topotecan. Actually it has been available in Japan for awhile, although the topotecan just got approved for ovca, a few months ago. I had not been able to find much on the irinotecan being used for ovca before, and of the two, I thought that topo might be a better choice, based on the fact that it seems to be what most gyn/onc's are using for ovca. Your info has encourgaged me to do some more research on that.

I did have gemzar with cisplatin, and got good results (CA125 went down to 18) and I took a good 4 month break. I did not have any kind of side effects with gemzar, and it was easy to tolerate. (The cisplatin was a different story.) So, one option would be to do gemzar as a single agent too.

I certainly will look into all the options you mention, although seriously doubt if any of them are available here.

I'm so glad to hear you are feeling GREAT on the avastin, and pryaing this is the magic bullet for you!!!!

Joni, I was dx 2 months before you, in June! I have not had any IP treatments. Are you using anything for the neuropathy? B6 or L-Glutamine? I didn't notice much difference with it, but admit that I haven't bothered lately. I don't have any pain, my feet just feel quite heavy. I did take lyrica for a few months, and it really did help. I had to stop that because of dizziness. I am looking forward to hearing how the topo does for you.

hugs,
kathleen

kayandok
Posts: 1223
Joined: Jun 2008

I started the dense dose taxol in September and took 6 weeks off in December. Taking a break was not a good thing to do for the chemo working on the tumors, but I don't think I could have gone through the Christmas season without a mental or physical break down.

I am clumsy from the neuropathy. I have had permanent neuropathy since summer of 2009 after completing cisplatin/gemzar. I had no permanent symptoms during the first line (carbo/taxol) chemo and even second line (gem/cis) until a few months after I finished the second line. I have read about other people who experience a rebound neuropathy especially with the cisplatin. Even after taking 2009 summer off, the neuropathy stayed with me, and progressively gotten worse with each treatment. The balls of my feet and ankles feel like they are full of sand. Fortunatley, I have no pain yet, but if I don't think about picking up my feet for staris or to step over something, I will trip and fall. I have adjusted my thinking pretty well, and most people don't notice.

I feel it is something I have to and choose to live with to stay alive. But, I do wonder how much more nerve damage I can actually toerate. I have not been completely honest with my local doc, because i know that if he knew how bad it was, he would stop the chemo now. The taxotere is supposed to have less neuropathy and when I asked to switch to that, he said that there would not be much difference at this point in the game, and wasn't very willing to switch. If I can have a break (I need a good year I think!), and my neurpathy can get better then next time I definiely would choose taxotere.

Sorry for the ramble to your short "clumsy" question.

k

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

I bet you're tired....what a fight you've done.....$5000 a shot is worth it...do it girl...I'll pay for it....I hate that people cannot get access to life saving medicine because insurance won't pay...something seems very wrong with that....I hope you have a wonderful break...and can put this dastardly disease in it's place....at least for awhile....I hope you return rested and ready to keep on fighting......

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

I can't help you pay for the avastin buy if you need a place to stay while getting it in the States you can stay with me and my family. We have to do whatever we can to fight this disease !
Colleen

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