Update on my phase 1 trial--Doxil, Avastin, Torisel

Today I received CT results after 18 weeks of treatment with Doxil, Avastin & Torisel in a phase 1 trial at MDAnderson. I am happy to say that I have continued decrease in measurable disease. Several lymph nodes are now considered normal in size; the liver mets have continued to decrease and no new cancer has been found.

I will say, though, that it really has been kicking my butt. I had to skip a full cycle because of skin issues--my toes look like they have third degree burns ( and feel like it); lots of generalized skin sores; and fatigue truly hitting me. I actually had to use the electric cart in Walmart as I could not make the walk. This is significant for me as I have driven myself to every Dr and chemo appointment for the past year.

My CA125 is rising as are the other cancer markers they check. I suspect something is going on but it isnt showing on the scans. However I will be pleased if I can get and keep stabilization.

I am way behind on private correspondence as I have felt like crap. This perked me up.

Teri

By blacksea_turtle
Posted November 2, 2009 at 10:05 pm
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Dear Teri,

I am glad you got positive results. I am sorry you have to deal with very bad side effects. Hopefully this will bring you a long period of stabilization.

Dont worry about the Walmart episode, you will get back on your feet soon.

Best wishes, Elmira

By Shearaw
Posted November 3, 2009 at 7:15 am
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Teri, This is terrific news.. You will keep kicking this. The good news on both the fatigue and skin side effects is that they do ease quickly when the. Doxil dose is reduced. Perhaps you can discuss whether your trial protocol allows for Doxil reductions due to toxicities. My trial has that provision, and my feet are finally healing while treatment continues. Keep hanging in there, girlfriend!

By FavoriteAunt
Posted November 3, 2009 at 8:03 am
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Congrats on showing good results from your trial. I was on Doxil for 8 months earlier this year and that can really make you miserable if it flares up. I'm not familiar with Torisel, but am on Avastin & Cytoxan myself.

You just keep fighting and keep your spirits up. Once some effects have calmed down, you'll be jogging around Walmart! All the best.

By kennebec
Posted November 3, 2009 at 8:18 am
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I am in awe of your driving to chemo yourself! I was such a wuss during that time.

Bless you as you go forward and may you continue to have decrease in measurable disease.

By SONGBIRD49
Posted November 3, 2009 at 10:15 am
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Dear TealOak: Congratulations on a great Scan! Mine was saturday and won't know the results until tomorrow after only 10 weeks on Avastin/Taxol but so hoping I will have news similar to yours. Could be the weakness, sores are coming from the Doxil. I only had 2 treatments w/Doxil but they were ENOUGH for me with unbearable pain and the kicker was the acietes coming back to move me off it. My CA did go up 50 instead of coming down after my second month on Avastin so my oncologist is "thinking" of changing the taxol. I prefer to wait for another CA reading as I have heard that with Avastin, your CA is known to "spike". Sharing your hopes of getting stabilized soon, Ellen

By MinnieM
Posted November 3, 2009 at 12:07 pm
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Congratulations! I have been worried about you, but it sounds like the regimen is working.

I don't know what to say about the CA-125 as mine has always been somewhat recalcitrant (rising after surgery and initial chemo, then finally going down.) My doctor is now sure what to blame -- inflammation, disease he couldn't see.) I'm also clear cell.

My daughter did some research, and some suspect that as the cancer dies, it expresses excess amounts of the protein.

What other markers are they using for you.

I'm sorry it's been such a rough ride, but here's hoping there regimen keeps working until their is NED.

By TealOak
Posted November 3, 2009 at 3:17 pm
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Thanks for all the kind words and thoughts.

I am pretty sure the main culprit for my skin problems is actually the Torisel. Although I have a bit of hand-foot syndrome for the Doxil, I am not on a full dose of Doxil. Torisel has a tendency to make skin very delicate. My feet, for instance, would get all sorts of blisters which fluid under the first layer of skin. Then if you open it up or leave it alone the skin peels off leaving open wound. Only it is doing it ALL over my feet and toes. Then both the Torisel and Avastin keep it from healing.

Regarding tumor makers, they are using CA125; CA19-9; CEA; CA27-29. I will clarify that at MDAnderson essentially all phase 1 trials are conducted at the Center for Targeted Research, so I am not currently seeing my Gyn-Onc but instead the Dr managing my case is actually a MD/PhD specializing in Leukemia. However they do keep my Gyn-Onc updated and if any Gyn issues arise I will be referred back to them. The Phase 1 group also tested my tumor initially for various mutations in order to find what they thought the best trial would be for me.

My CA125 has shown itself to be a good indicator of what my disease is doing although it was a rotten indicator for initial disease screening. I had a high of 350 with cancer truly everywhere; had a low of 5 and then it started creeping up and at 11 a PET showed cancer. Currently it went from 40 to 66, but since I do not expect to ever have a meaningful remission ( doubt I will ever have ANY remission) I force myself to be happy with stable disease ( it sure beats the alternative).

Now if I could just get my sores to heal--I hate being bedridden for something so stupid.

Cheers

Teri

By mixy
Posted November 3, 2009 at 8:42 pm
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Hi Teri,
I am on the same trial at M.D.Anderson . Who is your doctor? I have only had it three times and already landed up in the hospital for five days because of such terrible mouth sores and feel like I have been run down by a truck. I am used to working,execising,and taking care of my six year old;it isreally hard. I wonder if it is worth feeling so bad all the time. You could always email me at ekugler@sbcglobal.net. I would really like to talk to someone who is going through the same thing.
Congratulations on your great results,keep it up.
Love,
Lauren

By TealOak
Posted November 3, 2009 at 8:57 pm
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Lauren,

I will email you privately, too. My Gyn-Onc is Dr. Ramondetta and in phase 1 Dr. Apostolia Tsimberidou MD PhD.

I had awful mouth sores, too. I lost about 15 pounds! ( course I had gained 40 on carbo/taxol). I am still very careful with what I eat and drink but for the past month or so they have been tolerable. The fatigue did not really hit me until 12 weeks or so but it has definitely kicked my butt. I am normally very active and self-reliant.

I will drop you a private note.

Teri

By Patricia123
Posted November 4, 2009 at 7:41 am
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I am in awe of you ladies onthis trial.

i hope I have your determintion and resilience and courage. This sounds so hard.

Keep it up for all of us as well as yourselves.

By GEPI
Posted November 4, 2009 at 8:04 am
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Hi,

Well done and good to hear some positive news. Interesting about the CA rising (is that CA-125? ), because mine went down a bit and now up (I am on Doxil only) and as you may have seen from a separate post my doctor is considering to switch to Gemzar/Cisplatin/Avastin.

By the way though I am on Doxil only I also got feet sores full of liquid, drained earlier this week. Luckily they are on the side of my feet but I still need open shoes just when the weather is turning cold.

Also,in Greece they gave me mensulid an anti-iflamatory medicine (not good for the liver) but within days the mouth sores nearly disappeared.

All the best and hope you get your strength back.

Regards
GEPI

By lifeisgrand
Posted November 4, 2009 at 9:10 am
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I'm sorry to hear about the side effects but hope that the positive scan results make it at least feel that it's worth enduring. I see you as a real butt kicker :). You give me a lot of inspiration, not only for fighting this disease but also for taking life and enjoying it. Thank you for letting us know how you're doing as I want to keep you in my thoughts and send all the positive energy I can your way.

I also want to say a big THANK YOU. Doing a phase I trial will do so much to help others. We all need to say our thanks to those who have endured new treatment options for the good of all our futures. God bless you!

By Shearaw
Posted November 5, 2009 at 11:04 am
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GEPI, I had the same worry about keeping my feet comfortable with the winter coming on. I bought some "fur" lined Merrill's with no heal backs. They are very comfortable to wear without socks, and have kept my feet cozy here in the chilly northeastern US. I also can slip them off and on easily to let my feet stay cool as needed. I know that there are many other manufacturers of such shoes.

By froedtertgal
Posted November 8, 2009 at 10:28 pm
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I've found two footwear items that are quite comfortable for/on sore feet - Adidas makes a padded slide sandal. (I don't care if I sometimes need to wear socks with them!) and Crocs makes a lightweight shoe with a removable, washable lambswool lining.

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