Just signed up for clinical trial at MD Anderson

VickiReed

I just signed up for a Phase 1 clinical trial, this one includes Doxil, Avastin and
Torisel. They said it has had some real good results so far with other cancers and is
close to going into Phase 2. I hope it works for me. I don't look forward to giving up some
of my favorite things, fresh tomatoes (that are riping in my garden), peppers, salsa, oranges & OJ, blueberries, strawberries, wine, hot foods, spicy foods, crunchy foods, etc...
Do you know anyone that has tried the Torisel? Avastin? Doxil?
I would appreciate any hints, tips and input on how to handle taking these drugs. They said to use ice chips when taking the Doxil and washing your mouth out with baking soda and water at least 4x a day. They also said any mouth sores that you do get won't heal very fast due to using Avastin.
I am going to try to keep working while taking chemo this time. Try is the key word. They told me I could go off on short term dis. but I don't know what lies ahead for me and figure I better hang in there as long as I can. I think with the tumors coming back is
taking it's toll. I feel so tired everyday. I have been on vacation this last week and
had to take a nap everyday. I am not a nap person. Ok, so I wasn't a nap person, now I am.
Have a great day and keep smiling!
Vicki

survivingovca

Avastin and Doxil
I have had Doxil and Avastin - but each as a single treatment agent and not in combination with other drugs. Both were easy for me, when compared to taxol/carbo. My main issues with Doxil were skin issues (bra straps and any constricting clothing caused skin irritations). My feet also swelled up because I did too much walking while on Doxil. I had a mouth sore after my fourth Doxil treatment, that was painful. The baking soda as a precaution is a great recommendation!

With Avastin, I had an increase in blood pressure, and headaches (because of the blood pressure). I didn't have any other side effects.

I was lucky that I was able to work throughout all of my treatments (with days off as needed - I work for an understanding company). It helped me feel 'normal', and kept me from obsessing about my situation.

Good luck with this trial! I look forward to hearing great results from it!

Rookerbird

Doxil/Torisel Trial
Vicki -

I am very, very interested in following your progress. LaundryQueen mentioned Torisel to me as a promising chemo for clear cell. What type of ovca do you have?

I am on Doxil now (as a single agent), and have completed five infusions. During the actual infusion, you should wrap ice packs around your wrists and ankles. This constricts the blood vessels, and prevents the chemo from moving into your hands and feet, which is where the redness and blisters often appear. Also keep ice chips in your mouth non-stop during the infusion. I did this in January when the Dallas temps were below freezing and there was snow on the ground...brrr!! Everyone in the chemo area got a big chuckle at how crazy I looked.

I have avoided tomatoes, peppers, salsa, oranges & OJ, hot foods, spicy foods, crunchy foods. I've used the baking soda/salt rinse as suggested, and feel that helps. Also, my doctor told me to use baking soda toothpaste and a soft toothbrush.

I missed the warnings about blueberries and strawberries, and have eaten lots of those in fruit salads and smoothies. I've experienced mouth sores several times. They seem to appear 2-3 weeks after the infusion. Magic mouthwash helps with the discomfort.

Vicki, I can really relate to the tired feeling. I'm still working, and need to continue working as long as I can in order to keep paying my $475/mo medical insurance. I try to do something fun or goofy every day in between work and rest. Today, I dressed my Australian cattle dog in a wedding veil for the royal wedding! She looks oh-so-chic, in a cattle dog kind of way.

Do you live in Houston? I would sign up for a trial at MDA more readily if it did not involve travel to/from MDA. How often do you have to go to MDA?

When you moved into the MDA trial, did that sever the treatment relationship with your oncologist? The way I understood it, moving into a Phase I trial moved you into the care of the research investigator and research nurse.

Oh so many questions! I hope this is a successful combo and a great experience for you!!

-Kathy

VickiReed

Rookerbird said:

Doxil/Torisel Trial
Vicki -

I am very, very interested in following your progress. LaundryQueen mentioned Torisel to me as a promising chemo for clear cell. What type of ovca do you have?

I am on Doxil now (as a single agent), and have completed five infusions. During the actual infusion, you should wrap ice packs around your wrists and ankles. This constricts the blood vessels, and prevents the chemo from moving into your hands and feet, which is where the redness and blisters often appear. Also keep ice chips in your mouth non-stop during the infusion. I did this in January when the Dallas temps were below freezing and there was snow on the ground...brrr!! Everyone in the chemo area got a big chuckle at how crazy I looked.

I have avoided tomatoes, peppers, salsa, oranges & OJ, hot foods, spicy foods, crunchy foods. I've used the baking soda/salt rinse as suggested, and feel that helps. Also, my doctor told me to use baking soda toothpaste and a soft toothbrush.

I missed the warnings about blueberries and strawberries, and have eaten lots of those in fruit salads and smoothies. I've experienced mouth sores several times. They seem to appear 2-3 weeks after the infusion. Magic mouthwash helps with the discomfort.

Vicki, I can really relate to the tired feeling. I'm still working, and need to continue working as long as I can in order to keep paying my $475/mo medical insurance. I try to do something fun or goofy every day in between work and rest. Today, I dressed my Australian cattle dog in a wedding veil for the royal wedding! She looks oh-so-chic, in a cattle dog kind of way.

Do you live in Houston? I would sign up for a trial at MDA more readily if it did not involve travel to/from MDA. How often do you have to go to MDA?

When you moved into the MDA trial, did that sever the treatment relationship with your oncologist? The way I understood it, moving into a Phase I trial moved you into the care of the research investigator and research nurse.

Oh so many questions! I hope this is a successful combo and a great experience for you!!

-Kathy

Thanks Kathy, you made my day..
I would love to see a picture of your dog. Did she enjoy dressing up? lol

I have stage IV Peritoneal Cancer. We have to travel little over 250 miles round trip
to go to Houston. Wish it were a bit closer but glad to be within driving distance.
Last year I had over 4,000 miles of travel for medical. This year I am starting to keep track as I go for the income tax deduction.(I didn't know that last year)
I will be going every week for infusions. Day 1 I get Doxil and the inhibitors and also have to see the doctor. Day 8 and 15 I just go and have the Torisel and Avastin.
Now that I have entered the clinical trial I no longer will have Dr. Bevers, he said I could come back anytime if I wanted, and if I ever had complications that required surgery, he would still be my surgeon. I really like the research nurse that I have. She
is easily accessible. I needed to communicate with her (I can call or email), she
answered the email with the first 15 minutes of the day. Gotta love that.
Thanks for the tips on Doxil, I'll ask for the magic mouthwash and get the baking soda
toothpaste.
Vicki

Rookerbird

VickiReed said:

Thanks Kathy, you made my day..
I would love to see a picture of your dog. Did she enjoy dressing up? lol

I have stage IV Peritoneal Cancer. We have to travel little over 250 miles round trip
to go to Houston. Wish it were a bit closer but glad to be within driving distance.
Last year I had over 4,000 miles of travel for medical. This year I am starting to keep track as I go for the income tax deduction.(I didn't know that last year)
I will be going every week for infusions. Day 1 I get Doxil and the inhibitors and also have to see the doctor. Day 8 and 15 I just go and have the Torisel and Avastin.
Now that I have entered the clinical trial I no longer will have Dr. Bevers, he said I could come back anytime if I wanted, and if I ever had complications that required surgery, he would still be my surgeon. I really like the research nurse that I have. She
is easily accessible. I needed to communicate with her (I can call or email), she
answered the email with the first 15 minutes of the day. Gotta love that.
Thanks for the tips on Doxil, I'll ask for the magic mouthwash and get the baking soda
toothpaste.
Vicki

My Dog Was Not a Happy Bride
Vicki, I've sent you a message, and will email you a photo. The veil was too long...she kept trying to shake it off and getting it all tangled, and then stepping on it. She wore it perhaps three minutes total. It was fun making it, though.

Thanks for sharing your chemo schedule. Glad you like the research nurse...a good nurse makes life soooo much better.

Safe travels to/from Houston!

- Kathy