Clinical Trial E5103

jenn3- I am cracking up at your description of the butt issues...only because I can totally relate!  Those were some very unpleasant days, that is for sure.

Tomorrow I will be 1 week PFC and still have the bloody nose issues. I haven't had any Avastin since mid July though. The Taxol can definitely cause that as well. My clinical trial nurse told me to use K-Y jelly on a q-tip in my nose to keep it moisturized. It does help and I also use a saline spray. I'm thinking I should drag out my humidifier. It's around here somewhere. I think.

littletower- I agree with Kari. The third one was the worst as I recall.

I will also add my hugs and support to anyone who is still on AC...or Taxol....or Avastin. It is so nice to be done and y'all will be here with us soon! Hang in there!!!

Mary

Onty, oh I was indeed the exception during chemo, the nurse had me using the suppositories and the pills for nausea!  

Mary, yeah, find the humidifier as I've found it really helps.  My last Avastin was Aug. 6th and my septum still kills me and the nose hasn't bled in a very long time but I still get those little gross clotty thingies, gross!!  But its when the air is dry when it really hurts.

Another day down ladies!  We are headed for the hump! 

I went outside Sloan for chemo because they had finished their quota for E 5103. If in spite of going to a community hospital I find out I got the arm that doesn't get Avastin, that would make me feel like short changed thats all. Feeling ok today except fatigue and GI issues.

Dear Michelle,

Smart of you to check with the cardiologist also before deciding to continue with the trial and potentially get another dose of Avastin. At 45% LVEF I'd be concerned but also know that sometimes a new technician or a new machine can skew the result.

You are ER/PR+ and have other bullets also. Avastin and Adriamycin are definitely cardio-toxic, Avastin much more so. I'd pull out of the study unless your onco gives you a really STRONG reason to continue.

Please let us know what you learn and decide. Hopefully others who have been in similar spots will offer some guidance.

Dear Kari,

I just noticed your nodes 16/16. My goodness that must have scared you big time no? How are you finding things now?

Michelle,

Usually when treatment stops the ejection fraction goes back up.  I wish you well

Teresa

Hi girls!  We're past the hump !! YAY!

Onty, OMG!!!!  My story is one of many, I'm the one who went to my GYN 3 mos after a clean mammogram...she said the hardened area I felt in my breast was just dense tissue and I was looking for a small pea size lump, so I thought OK, wow in my 40's I guess my breasts really change??  Well 2 years later and the area was getting larger and my breast was changing...went to a new GYN and she was like this isn't normal...Ultrasound, biopsies of 2 different areas of my small boob and hey you have ILC cancer!  terrific...my surgeon wasn't impressed by the mammogram either, he thought it was Stage 1, when I woke up from surgery my DH and DD were crying and the surgeon came by and said he was sorry, and that he took out the 'whole enchilada' and got it all he thought and that one of my nodes was about an inch big.  That's all I was ever told.  I never got my path report.  I asked my onc later and she told me Stage 3, but please don't define myself by a stage.  She said that they had changed the stages and in the old days mine would have been Stage 2, I said I like the sound of Stage 2 more!!  Anyway, she told me there is a 25% chance of this crap coming back....that's what made me do the Avastin, I almost chickened out because of the heart risk.  BUT, I am GLAD I did it, cause girl, I really believe it worked on me!  I HAVE to believe that!  

As I was going thru chemo, near the end, my clinical trials nurse who I just adore, said "Dr. Hersch (my onc) has a new patient we enrolled into the trial that has 26 nodes positive, more than you!  That made me feel weird.  Thank god my scans of the bones/organs were clear!!!!!!!!

Keryl, would love to meet you whenever you are passing through!  I work in Roseville M-F 7:30 to 4:30 and we love to hang out at the Fountains in Roseville, its a beautiful shopping center.  We can meet anywhere in the area.  Just let me know when you in town or PM me and I will give you contact info!!  Thanks for suggesting it!  Where do you live??

I received a letter in the mail from My Oncology Clinical Trials Dept.  It thanks me for my continued participated in the E5103 clinical trial.  Congrats for completing chemo and I'm now in the follow up phase of the study.  It goes on to list blood tests I need 3 mos after treatment end date and onc visits and MUGA, which I already did.  But they follow us every 6 mos from study entry for years 2-5 (history and physical exam) and annually from years 5-15 (history and physical exam) and mammograms are required every year from years 1-15.

I'm with you - as scared as I am about the Avastin, I'm glad to be in the study.  I'll find out if I am receiving it at the end of chemo in 9/10 more weeks.

Base line 65% and on the last scan run three weeks ago.  Although I have to admit I don't know what the numbers all mean, but realize after reading this thread I should look into it more.

My baseline was 57%. I had another one done after AC. I don't have a copy of that one, but as I recall, it didn't change at all. I am having another one on 10/20 now that chemo is done.

I also agree- even with the side effects that I had including the high blood pressure- if I had it to do over again, I would definitely do this study again. Even being taken off the drug after five doses because of the BP, I am glad that I was getting the Avastin. I don't get all hung up on the triple negative thing, but I'm glad I had this weapon.

Mary

I'm just getting back from Chemo - a little tired, but otherwise doing okay.  I was talking to the clinical trial nurse today and we are both curious to see how I do next week when I get the Avastin again.  With the Taxol I get the Avastin every 4th treatment.  I had Avastin with all of the AC and the first Taxol and my SE's were a little more intense - last week was Taxol only and I really did much better which is why we're curious to see how I do next week with Tx 4.

Unk - thanks for the info!

 HAVE A WONDERFUL FRIDAY!

Funny you mentioned neuropathy.  The soles of my feet have been very tender, like I over did it on a home pedicure and I've been getting some shooting pains.  The clinical trial nurse said it may be the early signs of neuropathy.  Ugh!!!  If I do end up with it, will it go away after chemo?

First, thanks Onty, Kari, and Teresa for calming words last week.

I saw my cardiologist today about decline from 53 to 49 to 45 LVEF. While she wouldn't tell me what to do - said I was between a rock and a hard place - she told me to push oncs for more data on Avastin before deciding to continue if I'm in Arm C. Kind of feel like I'm being pushed back and forth, but realize that no one has answers.

Onc and cardiologist both have said that Adriamycin is the known culprit, and likely the cause, but I'll never know for sure.  Anyway, I need to keep monitoring, and possibly meds down the line if it continues to drop. Still cardiologist said I can live a long healthy life, and even be running marathons, with a LVEF of 40. I'm still waivering, but I have a few days to decide about my last study treatment. Could be a moot point. if I'm in Arm B. And wouldn't it be ironic if I'm in the placebo group. At least I'm feeling less stressed about it.

BTW, my numb toes and now fingers are starting to drive me crazy. Reduced my dosage by 10 pct last week. Sure hope it goes away!

Michelle

Feeling a bit "pissy" today. Wondering whether I could change my oncologist and go some other place? Since I am enrolled in the trial I am guessing I have 3 options. I could start to see another oncologist:

1. In the same practice as my current oncologist.

2. In another practice who participated in this trial.

3. In another practice who does not participate in this trial.

Anyone know from experience the issues with option 2?

Dear Kari,

I am just feeling pissy - from chemo? or lupron?

I thought I saw in the consent form that your onco could ask for unblinding in the interest of your overall health. I'd say LVEF of 45 is a cause for concern. No?