Clinical Trial E5103

Good morning ladies,

 Its been a while since i've posted. I have been reading the posts but have had tooo much going on and being at a computer all day does not add to going on at night.  I just had my 7th Avastin!! Only 3 more to go.  I am off Lorazapam too!! I weaned myself because I was tired of relying on something that wasn't working.  I have taken a melatonin pill 1x in the last 2 +/- weeks.  I sometimes sleep thru the night and other times wake and then have to get back to sleep.  I think my brain is relaxing more these days or maybe I am so tired from soccer and playing taxi?? I did go for Acupressure last week.  It was great.  I have another session scheduled in a couple of week. The BC support group raises money and gives a grant to the wellness center so they are free to BC patients.  I have had some body aches in the past 2 weeks. I am not sure if its from the PT i am doing or the way i am sleeping.  I do have inflammation in my left hand/thumb area.  Maybe contributed to chemo.  In regards to what happens after I finish the AVASTIN? Talked to my onc and he said that I need to keep doing BSE, having your regular mammo, and his appts.  NO MRI's, CATs, or ultrasounds unless I have something.  He told me not to hesitate if something isn't right to call him.  But he wants me to live life.  Don't be afraid.  Well, I need to drive a little boy to school and call the Dr's for my daughter.  I will try and post more later to catch up.

Brena,  My husband had a wonderful time on his trip.  They went up through Canada, around the great lakes into Michigan.  He said it was a kodak moment around every corner.  I've never been on the Canadian side let alone the US side.  It was very relaxing for him.  The kids are back at school.  All 3 are playing soccer.  I have 2 playing on the school team and 2 are playing travel.  I pretty much have soccer 7 days a week.

Carolyn

Hi. I start my chemo and Avastin tomorrow, friday. I am nervous but want to get on with it.

I am hoping I am not totally out of it this weekend, as I am starting sooner than planned and so have a few things in the works. Oh, well, this is the  most important thing.

I met my Avastub trial coordinator and he oriented me yesteday, addtl. tests that need to be done within window, etc. Really nice guy and seems very into it - quite attentive. I will be having neulasta the day after each treatment. Are there addtl. affects from that?

I will try working 3 days per week and see how I do. My boss keeps making comments about addtl. work he needs me to do and I want to say WHAT ARE YOU THINKING?

Keryl,

I just wanted to wish you good luck on your first dose.  I was nervous for the first one and I remember saying to my onc afterwards "Is that is?".  That only happened the first time but I guess the unknown that does to oneself.  I did receive the neulasta shot which I did not like the first time.  I got cramps in my legs/joints.  It was only the first one, the rest were fine.  Good luck and relax over the weekend.  Don't push yourself.

Carolyn

Hi Brena,

Sorry to know that you still have the breast pain and swelling. Hope you get relief soon.

I was 'unblinded' yesterday and yes, I was getting Avastin. But since I am in 'Arm B", I am done with Avastin (8 cycles total). I will be glad to get off Avastin, because I am having v.bad sinus problems and continous nose bleeds. I have to get up every two hours at night to blow the clopts from the nose!!  I still have unbearable body aches and fatigue from Monday to Wed every week. By Thurs it gets a little better. I try to manage the pain with Advil and Aleve. I think this is due to Taxol - 10 done, 2 more to go!!

Regarding clinical trial for Bisphosphonate, I was told by the clinical trial co-ordinator that this trial is closed. They are not recruiting any more patients. I am looking for info on other clinical trials, for which I may be eligible.

Take care and keep us posted about your treatments for breast pain.

Desi.

Question for others....

I keep having low wbc's on the taxol so they are giving me neupagen now for the remainder of my treatments (4 more taxols to go). Did anyone else have this experience? I eat pretty healthy, although the docs say that diet doesnt affect wbc's only rbc;s

thanks all,

Carol

Harbin

You are at Rush aren't you? What day do you go for treatment? I got the low counts after the 2nd taxol--I skipped the 3th and 4th, then have a reduced dose.  I have a cold right now, but I think that is related more to colds going around than the neupagen.

That is what I am getting too. Interesting that you are experiencing the same thing, as my onc said that generally with weekly taxol you don't have any blood count issues. I am the second person at my center on the trial though,so maybe the avastin combined with the taxol leads to lower blood counts. Worst of the cold seems to be over, so hopefully these next 4 will be smooth sailing.

Hi all,

I'm back!... I just kind of hop in and out of this thread depending on how things are going.

 I'm wondering if anyone else has had these symptoms...

---big blobs of dried blood when I blow my nose...very dry nose sometimes, running at others

--trouble sleeping, which leads to some depression, and low desire to exercise (viscious cycle)

I've finished AC and have had 2 taxol treatments (#3 tomorrow)..how many are there all together?  I just know that it will go on and on until December.

What kinds of decisions have people made after the unblinding?  Mine won't be for quite a few weeks.

Hi All,

 I just completed my 5th taxol treatment today. Things are going very well. I have minimal side effects, mainly just fatigue.  I met with a radiation oncologist today and I will find out next week whether or not I will have to get radiation after the chemo. I hope not, as it might have a negative impact on my breast reconstruction. But of course I will do whatever they recommend in hopes of preventing a recurrence.

I have not been working and my family has been a great support. I am anxiously awaiting my unblinding on Nov 4th.

Hope everyone is doing well and keeping the faith!

 Kara

I'm back. Thanks for your thoughts re. my first treatment last week.  Much or all of what you said occurred as you experienced.  The treatment itself was fine. Day after I felt great and wondered if they even gave me anything. The next day, Sunday, thought I'd been run over by a truck; I was wiped out, some nausea, no appetitite, and then Monday I was so - so.  I thought I was getting a cold but used Zincam and it moved on. I slept 12 hours that night. Now, here I am at 1:30 pacific time, sitting at the computer. Can't sleep. My next treatment is not until 10/9, so hope to get some xercise and rest, do some work and enjoy. I got my hair cut today, not too short, but getting ready.... my family is doing ok. My friends have all selected dates to take me to chemo and I am glad, because I dont want to burden my hubby who travels a lot for work.

p.s. my avastin coordinator is taking good care of me. he is like my concierge. heh, heh

For those of you that are triple negative....I found info on a new clinical trial, I thought it was real interesting.  I posted some info on it on the trip neg board.  if you go to clinicaltrials.gov and go to number 108. 

It sounds very promising I think.  Any trial at this point sounds so great.

Teresa

Hi ladies,

I am not on the same study as you are but I am on the Beth study.  So, I get Taxoterene, Carboplatin, Herceptin and Avastin every 3 wks for 6 rounds and then Herceptin and Avastin every 3wks for the rest of the yr.  I had my first chemo the 26th.  Boy, I didn't expect the SE's to be so bad.  I was exhausted beyond words, every bone ached, head HURT, stomach sick, and my skin broke out something awful.  I've also had some nose bleeds but not too bad.  It's hard to tell what SE is from what drug.  I know the nose bleed stuff is from the Avastin.  I am feeling better today and am very glad I don't have another treatment for 2wks.

Angie