Any thoughts on Patupilone chemo drug?

[alanpvegas]

Was just told today that mom got approved for the Novartis companie's "Patupilone" ovarian cancer chemo drug.

Here is a link to their site about it:   http://www.novartisoncology.com/page/patupilone.jsp

Not too much info there or even in the document they gave her, but supposedly it works better than Taxol and prevents cells from diving or something like that.

The document says it "belongs to a new class of agents that works by preventing the growth of cancer cells.  Patupilone kills cancer cells by attacking cell structures called microtubules.  Microtubules have many functions in cells, including forming the internal skeleton of cells".

Anyways just wondering if this is the right course to go.  She is in the Phase 2 trial so it is open label and she will get it.  She was on carbo-p for the last 4 chemos and she went down to about 125 but now they say she is platinum resistant.

Thanks!

[Cindy809]

Could you ladies please start another thread.  I am very interested about this.  The people who posted above you have passed and one of them (Helmar) was a dear friend of mine.  I know you didn't know that.  It is hard to see names when the person is no longer here.  At the same time I do not want to stop this discussion.  Thank you, Cindy

[Flightsocks]

thanks everyone.
aghhhh! I really don't want to take any more chemo. my hair is growing back and looking real chic and I don't want to lose it. I don't want to go through chemo if it won't cure me. my oncologists told me carbo/taxol would probably cure me as I was stage II. So I took it, otherwise I would have used hyperthermia or vit c or something else.  My CT scans,bloodtests were normal a month ago. two months on from chemo and its gone mad! lots of little nodules stuck on my bowels and now they say the chemo didn't work. this is a hard decision to make. I'll stay in touch. Thinking of going to see john of god in brazil...
bless you all x

[Mags711]

Hi, I am Janet's 'other woman' (smile) -  I would be happy to share my experience with your regarding patupilone.  The packet I received at the beginning of the trial laid out the potential side effects.  

I have experienced problems mostly with diarrhea, fatigue and neuropathy.  I receive my infusions on Wednesdays.  By day 7 I am usually experiencing the diarrhea and I am usually feeling a bit better by day 14-17. I didn't really feel consistent side effects until this past infusion (number 7) and find I am having a general disinterest in food.  It isn't hard to eat, but rather hard to feel hungry.

I am hoping for the patupilone to keep my tumors from growing, my CA125 initially went down after the third or fouth infusion but has been back up again since.  I don't think the CA125 is necessarily a good marker for me though.  The CTscan has showed little change in the tumor size since I began the trial.  I hope this information is helpful.  My thoughts and prayers are with you.
Maggie

[Janet535]

Hi there,

I'm on the phase lll Patupilone trial. I've been on it for 42 weeks so far and there is another lady from the forum who is also on it, she's been on it for 21 weeks (or there abouts). We keep in contact with each other and compare side effects and progress etc.

If there is anything we can help you with or if you have any questions regarding the drug we would be only to happy to pass on what we know.

Wishing you all the best..Kind regards....Janet

[alanpvegas]

Mixed...not sure if it actually did anything as ca-125 and radiology was pretty much the same after 4 courses of carbo, but after adding maitake d-fraction her ca-125 did go down to it's lowest.  however after her j-tube was removed she stopped taking it and ca-125 went back up after she had colitis and could not be on it for one cycle...they subsequently took her off the trial due to 'disease progression'.

When I was reviewing it...some critics said it's iffy if this is anything spectacular or will even make it to market, but I now see it's in phase III trials...

[Flightsocks]

hi,
how did the trial go?
They've offered it to me. phase III. taxol/carboplatin never worked.

[SimplyStar]

Usually for SSI you have a disability that prevents you from working, if Alans Mother is old enough for medicare then SSI does not pertain, For Medicaid  Title 19 , that goes by  income guidelines also.  What we use for some of our clients is called medical needs hardship funds.  These are applied for through the social service offices. Ours is called Services to Adults with Ddisabilities. Those guidelines are still based on incomes but are looked at for the cost factors invovled in the needed health services.  These services all had hugh cut backs the past few years and are hard to get, but  can still be of some help. Along with the medical needs comes food stamps, energy assistance,  transportation costs and medications and a few other ways to save money.  Each state is different because of the funding they receive.  Here in Iowa we do have emergency funds that they use when they consider it to be life saving.

[YvonneS]

Alan, Can your Mom get disability?  It maybe worth getting a lawyer.  My daughter works for the SS Appeals court and there is a huge backlog, but she says if you get a good lawyer, they can get your disability quicker and you qualify for Medicare sooner.  Also, they will pay back pay from the time she was disabled.   I hope this new rug will work.  God bless.  Yvonne

[clmtkel]

Thanks for your information.  I will ask my mom for her informational packet.  I know that my mom has been on taxol and carboplatium.  They stopped working.  She was diagnosed about Easter time 2006.  She had an operation that may.  She received chemo pre-surgery and post.  Her CA 125 count was 1035 last I saw.  She does have the fluid build up in her tum. (ascities) I want to know the progression of this type of cancer.  Seems like nobody wanted to tell you the uglys.  I know everyone different.  I want to know what to expect.  I take care of her.  I know it's harsh.  What are the side effects of the patupilone?  Have you had a negative experience with the patupilone?  We are always in that "HOPE" mode.

[alanpvegas]

what do you need to know?  Is it the same one from Novartis (they should have given your mom an informational packet).  Basically patupilone is from bacteria found in dirt.  In short, nobody in the oncology field even knows if it will gain momentum because it's been years now of way too long development and they can't find anyone to go into the phase II trials (except for the uninsured of course).  It's supposed to be similar action to Taxol (taxanes) but also good for taxane resistant ovca...however that's what is trying to be proven with phase ii studies.  stuff on the web says it's probablly going to be dumped eventually...but who knows, it may have some effect for your mom which would be good.

[clmtkel]

Please can you help me with any advice about clinical trials for patupilone? I read a few above however they are from FEB2007.  My mom has been approved for the clinical trial and she is going to receive the patupilone.  Where can I find out more information on this?  She was accepted here in San Diego @ UCSD  Moores Cancer Center.  I know there is also another medicine being made by a doctor at Baylor University in Texas.  It will be aval. in clinical trials.  We read an article about how it is a herpes virus that has been tweeked in a way where it wants to destroy the cancer cells even in advanced cases.  Not in humans just yet.  One to two years probably due to fricken "BUSH" in one way or another (sorry I vented)  My mom does not have insurance however, UCSD has an awesome team of doctors, nurses and office staff.  THEY care.  I want as much info as possible about this PATUPILONE.  My mom will start next friday oct 12th 2007. ahahah  KUDOS to all you women going through this keep your humor it helps my mom and I a lot.  BE STRONG!!!!!
kel

[alanpvegas]

Unfortunatley not...the sad truth is if you don't have insurance, nobody wants to deal with you at all.  So her Gyn Onc (surgeon) is the only one who has actually done anything for her since then.  I'm watching this one closely and if it is not working, I'm seriously going to have her request Doxil or something (thank you for mentioning that!).

I doubt this one will even do anything 'major' as what I can find on the internet (mostly some studies) show either a partial response or stabalization.  

[Helmar]

Is there nothing that you can do re getting another opinion if you want one? Unfortunately with Ovarian cancer, many of us don't have a lot of time to wait and see, and I would hate to think that your Mum needs to be patient until April, when she could be having something that's 'tried and true'... if you know what I mean. I don't want to throw cold water on what she is doing, but I just feel that there's got to be other options for your Mum at this time. Just keep close watch on how she is doing, and if the tests say it's not the best for her, then get her off it quickly... and try one of the others. My Oncol. had me on Topotecan just before the Taxotere/Carboplatin, and my numbers went up to 7500 in a very short time. His theory was that it 'pings' the cells, so it looks like more cancer is there, than what actually is. I had only two treatments of the Topotecan, and then have had 2 of the Tax/Carb and my CA.125 has come down very rapidly to 3533, after only the two treatments so my Oncol. theory seems to be right.
I feel for your Mum as I didn't have any knowledge on ovarian cancer either... but one soon learns.
The Forums are great for that... everyone helps and supports each other, so you've come to the right place.
Wishing you all the best... and your Mum is lucky having such a caring son.....Helmar...

[alanpvegas]

Oh I forgot to add, they do have a phase 3 study as well as this phase 2 study.  The phase 3 has doxil in it (I think) so it's either that or patupilone you get (double blind).  The phase 2 guarantees patupilone.

[alanpvegas]

it's an open label study so she will get the drug.  supposedly it works on the same principal as taxol type drugs but has less side effects and is more effective even against taxol type resistance.

I feel the same way and read the other posts about doxil and such and I'm figuring if mom is ok with it we can give it a try and if it doesn't work we can drop out of the trial and go from there.  The big problem is she has no insurance (and our state/county is too hard to qualify for medicaid or county assistance) and NO oncologist in town will even talk to her...so it's basically a waiting game until April 1st when she gets medicare :(

[Helmar]

I don't want to be a 'wet blanket' re what they have your Mum on now, but I just personally feel that there must be other proven drugs 'out there' that she could have tried first. This one is only Phase 2, you say... so they haven't even got to Phase 3 and then onto the market, so to me it's a little dicey. Have they guaranteed that she will get the actual drug, as quite often with trials, some participants get the drug, while others get Placebo and maybe something else like Carboplatin? My thoughts are, that maybe your Mum should have sort a second opinion from another Oncol. first. *just my thoughts*..
Anyhow, I hope this will help her, but if it looks like it's not doing the job, then have her change to something else fairly soon. Has she had Doxil? Some of us have had great success with that.
Best wishes...Helmar.