Clinical Trial E5103

TexasRose

Thanks everybody! We are leaving out of San Juan and going to Barbados, St. Lucia, Antigua, St. Maarten and St. Croix. We did this same cruise last year. Our traveling buddies had to cancel at the last minute last year, so they convinced us to go again this year so they could go. We had a blast on the last one and are really excited to go back to these islands. Just gorgeous! And warm!!

Onty- Yes PFC is post (insert your own F-word here- I know which one I use!) chemo. I am sorry that you had to pull out of the trial. If it makes you feel better, I only had 5 Avastin before they took me off it. I agree with Kari- we will just believe that is all you needed!

Jenn- How is treatment going?

Kari- Cabo is on my list of go to places!! Glad you had a great time! 

I got my Zometa today. This is my second infusion and they tell me I shouldn't have any side effects after the first one. Hope they are right!

Hugs to all!

jenn3

Mary - The neuropathy and sharp pains in my legs and back are increasing with each Taxol treament and much worse on the weeks I "think" I'm getting Avastin.  It's really strange, but the pain I get is the same, but amplified on Avastin/Placebo week.  I know I keep saying this, but I am so curious to find out if I'm getting it or not just to see if the additional pain is pyscological.  I'm also finding when I walk fast or for a long time my legs feel weak.  Ugh! The onc talked about possibly reducing the Taxol because of the neuropathy, but is waiting to talk to me at this week's appointment.  My blood counts were also really low, just above the no chemo line - thank goodness.  And......... of course there is the miserable bloody/dry nose and cactus butt, but it seems I'm used to it now.  Blood pressure still great - today at chemo is was 120/84 and no chest pains or problems with the heart.  I'm not sure when my next set of scans are due, but I'm sure they must be coming up soon.   Thanks for asking.

unklezwifeonty

Thanks Mary and Kari,

I got 4 doses of Avastin/Placebo along with the 4 dose dense AC. I will get a total of 4 biweekly Abraxane. I expect to be unblinded at my next onco appointment.

Thanks for clarifying PFC :-)

Dear Jenn,

Good to hear your BP is back to normal. It does sound like you are getting Avastin but then time will tell for sure.

kfinnigan

Mary, the cruise sounds fabulous!!  So nice to look forward to a nice fun vacation with friends too!!

Jenn, so sorry about your pain and neuropathy.  I have to say that the weakness in my legs really bothered me.  I actually said for the first time (and my last Taxol was 1-15-09) that my legs felt stronger on a walk yesterday morning.  Hang in there...keep us posted on what your onc says at your next appt.  When is your unblinding??  I can't remember if you told us already.  Sounds like you are getting the hard stuff.

Onty, so approx 8 wks left...you are getting closer!!!!

unklezwifeonty

Hi Kari,

Yeah only 5.5 now really! 

jenn3

I should get unblinded after my last chemo 12/18.  I keep telling myself - 3 more to go.......... 3 more to go............. it's almost over.  However, I have a feeling I'll be an emotional wreck when it's over and not know what to do with myself.  I cry everytime someone rings the final bell when I'm at chemo, I can only imagine what I'll do when it's my turn.  I'll have a month between chemo and radiation and should be working by then so that should help keep me distracted. 

unklezwifeonty

Dear Jenn,

1 day at a time hun.

kfinnigan

Onty, WOOOHOOOO to 5.5 wks!!!

Jenn, I hear ya girl, its a hard transition from the active chemo part of the treatment regime to the rads, but you will start to feel a lot better post chemo.  Its the mental part of it that got me at times.  You are about one year behind me in dx and treatment.  I was unblinded in Dec. 08.  Thinking of you....

3 more to go...3 MORE TO GO!!!!  WOOOOOOOHOOOOOOOOOO

TexasRose

Jenn- I'm sorry to hear about your neuropathy. The Taxol is so hard too, but in a totally different way than AC was. I feel for ya. Just know that it does get better. Only 3 more!!! You can do it!! And I was completely unprepared for the way I would feel once treatment was over. I knew the last one would be emotional and then I thought I would just go on about my life. It was much harder than that. The emotions after you are finished are really strong too. Or at least they were for me. It's like I was holding my breath for 8 months from the time I found the lump until I finished chemo and once I was done then I let it hit me. Before that, I was too busy fighting it to feel the emotions. After treatment it hit me like a freight train- I had cancer!! It was a rough adjustment to get back to trying to be normal again. I still fight it sometimes, but it is much easier now almost 8 weeks after chemo. And yes, I would be shocked if you aren't getting Avastin.

Onty- You are getting so close too! Hang in there girl!! 

unklezwifeonty

Mary, Jenn, Kari,

Thanks gals. Looking forward to my side effect free week from tomorrow.

kfinnigan

Hi Mary!  and Onty, big WOOHOOOO for the upcoming side effect free week!  That rocks!!

unklezwifeonty

You perk me up Kari....

THANKS! 

jenn3

Mary, Kari, Onty -Thank you for the support - I so need it right now.  

Three more to go........ three more to go.......... After this week I can say two more to go........

Have a great day.

unklezwifeonty

Dear Jenn

We are here for you.

unklezwifeonty

Dear Jenn

We are here for you.

unklezwifeonty

I guess we are here for you 200% :-)

jenn3

Monday's are especially rough with pain and neuropathy problems and I usually feel down on Monday - so thank you - thank you - thank you. 

Onty - how are you feeling with Abraxane? 

unklezwifeonty

So far so good. I got lot of bone pain and temperature last week but no GI issues to speak of.

kfinnigan

Hi girlies!  Couldn't check in yesterday was short handed at work, and too tired to look at the computer at home!  Just sending you all positive vibes and good ju-ju!! 

HANG IN THERE !!!!!!!!!!!!!!!! 

TexasRose

Just wanted to check in before I leave. We are off early in the morning for San Juan and our cruise. Hope everybody has easy treatments while I am gone. I will be thinking of you!! It will be over before you know it!!

 Hugs!!

unklezwifeonty

Dear Mary,

Happy Cruising!!!

kfinnigan

Mary, have a FABULOUS time!!  YAY!!!!!!!!

Hi girlies, we've made it to yet ANOTHER Friday!  WOOOOOOHOOOOOOOOOOOOO!!!!!!!! 

jenn3

I thought I had to wait until the end of chemo to get unblinded, but it was today.  I was on Arm A - Placebo.  I'm guessing all my SE's are left overs from AC and/or from Taxol.  I was very disappointed that I did not receive the Avastin - as I've been reading a lot of articles on Avastin and was hoping to have been in either Arm B or C, but it is what it is.  The reason for the trial is so that they can track us in all categories so they will know how it works.  They will continue to monitor me for recurrance and lingering SE's. 

So............. I'm thinking the SE's I'm dealing with that have improved some were initially from the AC and have improved since I've been off AC, but can't completely heal until I finishe chemo.  Like cactus butt it's been getting better, but I was thinking it was because I've been doing probiotics and stool softners, guess it was because the miserable AC was finally leaving the system and lingering cactus butt is from the Taxol.  And.....the icky nose probably started with AC, but lingering with Taxol (the dryness is just awful). 

I will say, the one thing that made me think I wasn't getting it is that my blood pressure is really good (110-125/70-80 range) and has NEVER gotten higher, not even when I was nervous or worked up over something on a few occasions.  But.............. I wanted it so bad I didn't say it outloud, guess that trick didn't work.   I hate to say the upside is that the port comes out and I don't have to go back every three weeks for treatment, because I did want it so for me there isn't a upside.  I really wanted to have something that would reduce my risk of recurrance. 

kfinnigan

Jenn, I am bummed ! I thought for sure you were getting the hard stuff.  Let's hope for healing from all the nasty SE's.  My nose still hurts at night and I still run the humidifier.  Do you have rads coming up?  Big hugs!

unklezwifeonty

Dear Jenn,

Sad to hear that you didn't get the arm you were hoping for. Take heart in knowing that:



a. They still don't really know whether and how Avastin helps in early BC.



b. You will continue to get the best monitoring care you can possibly get while getting AC followed by T which is the best standard of care that's out there today.



c. You are helping the thousands of women who will get BC several years from now by participating and helping determine the exact role of Avastin.

jenn3

Onty - thank you!!  I told my mom pretty much what you're telling me, as she was crying in the waiting room.......... It is what it is and maybe because of this trial I can help other women down the road and that was my goal in the first place.  I joined in hopes of helping other women and as time went on and I read more about Avastin I started to hope that I was getting it for myself as well.  I am excited that I will be finished with chemo all together and after rads I can begin to find my new normal - whatever that is.  I've been thinking about calling the local Komen group or American Cancer society and volunteering my time to help others because without the help, generosity and kindness of my family, friends, co-workers and neighbors I would not have made it this far without a serious meltdown.

Kari - Totally missed your post initially.  Thank you for all of your support!  Wow - still dry nose.  I wonder why it lingers for so long.  I really hate it, especially now that I have to run my heater some. 

unklezwifeonty

Dear Jenn,



I'm glad you have your head on your shoulders and are looking at it objectively. Good luck with the rest of your chemo and with the rest of your life.



Did I tell you gals that I got kicked out of the trial last week? I had a reaction to taxol and they switched me to abraxane. The avastin trial does not allow abraxane substitution. So I just got 4 doses of avastin/placebo. I'm hoping I will know at my next onco visit what I got!

jenn3

Onty - I'll cross my fingers and hope that you did get some Avastin before being kicked out of the trial.  But......why haven't they been able to tell you whether or not you're receiving it if you're no longer in the trial?

unklezwifeonty

Dear Jenn

I haven't been to the doctor since. I suspect I was on Arm A or they would tell me on phone.

unklezwifeonty

Dear All,

My doctor told me this morning that I was getting Avastin. I do not know which arm (B or C) I was on. She pretty much said what I said here to Jenn on 4th Dec about the study :-)