Clinical Trial E5103

Hi Brena:

Glad your daughter's ultrasound was clear. I didn't want to worry my  mom until over a month after my dx in Sept.--until I got results from my second biopsy after the MRI that showed +node and 2 other tumors that didn't show on June mammo! But she's 84 (and NEvER had a mammo--unfair). I'd hope that my own daughters would say something!

Have 3 kids--boy (21) and daughters (19 and 14).

Got a handout on Taxol SEs today--hope my wbc improves enough to have 1st tx on Thurs. They upped the dosage on my 4th Neupogen shot today. Shots really worked before--I guess I'm just crashing from AC.

Tahnks for all the advise!

Brenda--sorry to hear you've been knocked down. I hope the transfusion gets you through the Taxol txs. But you've finished the AC--Hooray!! My WBC went down to 1--they put me on antibiotics til it went back up. They increased my last neupogen dosage, and it went to 10, and I'm hoping it won't drop so low.

 A cruise sounds so great. Maybe next year!!! Maybe then I'll feel more like a survivor.

Brena--I'm interested in hearing what's causing your ringing. I have it in my right ear too. I've been referred to a hearing test, and I guess I should do it. It drives me nuts sometimes. Had ear wax flushed out in early Dec., which seemed to help a little bit for a little while.

I have been unblinded and I did get the Avastin and found out I'm group C I have to keep  going every third week till July. Long time can't have reconstruction till I'm done, its gonna be a long year with the expanders ugh! I do have a runny nose that sometimes had a little blood, my gums bleed and I get runny eyes also had slight horce voice.

Bettylou,

I am glad to hear you are doing well.  Sounds like you are keeping busy.  I haven't gone on the cruise yet.  Scheduled to head out on April 15th to the 21st.  Thank goodness it wasn't today since we got all this snow!  My husband is in San Diego til this Friday so I was stuck w/plowing.  The kids did help w/shoveling though.  My hubby has to go to a conference in Hawaii at the end of the month and all the other guys are bringing their wives. So he asked me to go and I just booked my flight.  So I will be heading to Oahu before I head on the cruise.  Hope to start a nice little tan going. 

In regards to the avastin, you can opt out at anytime.  You can stop today if you felt like it.  That's the reason I did it.  I didn't think I would go thru the whole arm d but I did and time flew.    I think you are doing great w/being so active. I was not that active during my treatments.  Do you know when you will be unblinded?  April or May?

Brena & Teresa,

 I am getting very excited for the trip.  I am waiting on my passport since it had expired!  I also got my kids thier passports so we can go visit my family in England sometime this or next year. I went to the spa the other day w/my sister in law and had a European facial and swedish massage. I think the facial helped my sinuis's due to the hot steam she shot at my face.  I guess I should just heat up a pot of water and put my face over it w/a towel and it would be the same.

Things are busy at my house.  My son's soccer team won the championship on Saturday.  It was a very exciting game.  The coach decided to move the kids up to the next level due to them beating all the teams by tooo much.  It should be an interesting next session.  My daughter started AAU Basketball and I am waiting on the schedule for that.  So my weekends will be quite busy til May.  I head out to Hawaii on the 25th of this month til April 2nd.  I need to contact my cousin so I can stay at her place for a couple of days before my husband arrives.  My kids aren't too impressed w/us traveling w/out them.  I will start planning a vacation to Europe when I get back.  My uncle is not doing so well (he's 94).  I would like my kids to meet him due to him being a whipper snapper kind of guy.  Well, got to run.  My youngest wants to play on the computer.

Hi there, all.  I am also part of this study.  I started chemo October 3, 2008 and my last round of Taxol will be March 12.  I was unblinded last Thursday and found out I was not receiving Avastin. I am attaching what I posted on the triple negative breast cancer foundation web site after my unblinding (my patient # is 51089).  I wish I was aware of this thread sooner.  Brena found me at the tnbcfoundation site and refered me here. I started with page one and read this whole thread.  I feel like I have been here from the begining!  Thank you, Brena for making me aware of this supportive group. 

I found out yesterday that I am in the placebo arm of the ECOG 5103 (AC x4. Tx12 plus avastin or placebo) trial.  This will explain why I have not experienced any avastin side effects .   I knew going in that I had an 80% chance of receiving avastin and a 20 % chance of placebo.  I am fine that I received the placebo.  What does bother me, however, is how poorly the U of Miami administrators explained some of the details of what it ment to be in the trial. 

 For example, I started the trial on Oct 3, 2008.  I knew that the Holidays would fall during my 6 month protocol.  I sat down with the PA assigned to my case and went over my treatment dates through the first of the year BEFORE I started.  One of my treament dates fell on Christmas.  I had plans to travel out of town for that week and did not want to have to travel back for treatment.  This could easily be arranged as this was during my AC phase or treatment once every 3 weeks ( I did not do dose dense).    My PA advised me, no problem.  Because your date falls on Christmas and the Chemo unit will be closed on Christmas,a Thursday, you can come in the following Monday when you return.  As Christmas approached and I confirmed this advice with the nurse in charge of the trial at U of Miami, she said OH NO!  You MUST have infusion with in two days of your scheduled day.  Which meant I had to have it either before Christmas or Friday, the day after as they are closed on Saturdays.  BOY WAS I MAD.  I had to pay to cancel plane tickets for me and my husband and fly back on CHRISTMAS DAY!!!!  All this for sugar water.

  In addition, I drove a much further distance to receive treatment at this facility (an additional hour, two hours total) than I would have needed just to receive ACx4, Tx12, one of the most common chemo regimines around for BC.  Again, the drive inconvenience decision I made knowing my chances of placebo.  

 So, just thought I would let those of you who may be considering doing a blind clinical trial know that this is the potential down side of participating.     I am fine that I did not receive avastin.  Avastin is not without side effects. It is also a controversial drug regarding early stage breast cancers, hence the clinical trial.  Many people are not convinced of its true benefits in the metestatic setting.  It bairly passed FDA approval for that poplulation.  With all that being said, it did prolong life by weeks.  That is significant when it is your life. 

  We are all looking for any little thing that may make that difference in our personal journeys.  I have no regrets that I participated in the trial.  I just wish I received the drug given the sacrifices I made to be in the trial.  But, I am OK that I did not.

Hi Ladies,

I got unblinded today and am in arm C and will go on to arm D.I am kinda torn about it I think I just want to be done with the txs but, I know this is very important to the future of breast ca research and me so I will continue. 

I am just tired of not feeling well!!!!!  My onc said in 4-6 wks after the taxol stopped I will feel alot better so I will keep that in my mind, I am really very tired of the sinus stuff too!!!!! But, I amsure that will contiune with the avastin. The Dr said it might ease up when the taxol stops also,

Brena I did not see this email til this evening I will ask next week for the seq #  sorry. 

I hope you are all well and I am off to the lazyboy as it was a long day. Left the house at 8:45 and got home at 6:15 with the dr appt, blood work,  taxol and avastin tx and 2hours drive each way.

have a great SE evening & week every one,  Deb

Brena:

Not sure if you saw my patient #51089.  Have you learned anything from the patient #'s reported so far? 

This Thursday is my last round of chemo.  I am so excited and ready to be done with Taxol.  My toes hurt so bad!!!

Hi everyone. Keryl here. Just reporting in to say my my sinus stuff is better, but right side is still irritable - my membranes inside nose & sinus burn on that side periodically, but much less of the icky stuff to blow.  My headaches are pretty much gone. Hair is sprouting, my nails still look like heck (taxol)  My last avastin was 1/22 - anyone report when the sinus thing moves on? 

I rec'd my post treatment echo cardio and all is normal.  3 weeks of radiation left. Skin doing fine, but I get so exhausted and today I fell asleep so soundly -- that today I barked at one of my son's friends who called  - I said do you know what time it is ? They said, yeah 6:00 - I said, well its way to early to call here. Then I realized that it was 6 pm and I had thought it was 6 a.m. !! Thats how out of it I was.

Is anyone doing this trial on the dose dense schedule? 

hi Bettylou,

I think the Taxol was easier on the stomache than A/C.  I didn't much care for the Neulasta shots.  The first time I had some joint pain.  Before I got the next shot I would take Ibuprofen which helped.  I think w/the Taxol it was more fingernail/toenail pains.  I never lost any but my nailbeds were tender here and there.  After I was done Taxol, about 3 months later i got an ugly toenail.  Nothing major but it looked ugly.  That is all gone now.  The nails can actually raise up off the nailbed.  I would recommend not doing dishes by hand or keeping your hands in water for prolong periods.  My husband and kids did the dishes so I didnt have to worry about that.  On the other hand Brena lost some of her nails while going thru Taxol.  We are all different.  I guess the one thing I would say is just be good to your hands and feet!  Buy some saline solution for your sinuis's incase you start getting that problem.  Keep them moist.  I still dont know if it was all taxol or combination of taxol/avastin that wreaked havoc on my nose.  It gets better all the time.  I am looking forward to the cruise but am leaving in a week in a half for Hawaii.  Want to start the warmth of the sun earlier since my hubby has to go out there for work.  I decided to join him.  Well, I have more house work to do.

C