Clinical Trial E5103

Hey all,

 I haven't posted in a while and just got caught up. Those of you going on the trip-enjoy! And those of you that are in the midst of treatment, keep the faith, you do get over it. I have only 2 more of the "extended arm" avastin treatments to go and therefore am almost 6 months past the Taxol, and it really isn't bad at all. No side effects, hair has grown back, energy levels back to normal (even went skiing over spring break).  I know how it seemed endless back during the taxol, but it really has gone fast.Its actually rolled up on a year since I had surgery.  So hang in there it does get easier on the avastin only part of it.

 Now, if the weather would only warm up--so tired of being cold

Carol

Gramof3 - Thanks for the mouthwash tip.  I will try it.   

Hope everyone else is doing well.   

Janet0527-You made a good point about SEs--I'm tolerating the AC very well, too, so you may be right on target as to Avastin side effects.  Thanks for the post!

kfinnigan--another oncologist in the same practice as my onc recommends just salt water.  I think you are right--probably works more ways than one (and would taste better than the Biotene!).

Take care.  Helen

kfinnigan and all of you brave women.

Finally I found E5103 participants!!  And since I'm rarer ILC, I'm so very glad to find you, kfinnigan, with a similar dx as mine.

 I had lumpectomy last week with 8/12 nodes--I was shocked.   3 days ago Onc suggested this trial to me, so I've spent all weekend trying to find E5103 discussions and to decide if I wanted to do this trial.  You have all convinced me to do it, so I'll call him Mon and tell him.

 YOU ALL SOUND SO BRAVE AND SO HUMAN!

 kfinnigan do you mind sharing if you had surgery and when you'll do radiation?  You look so young.  I'm older than you at 56 but I do want a bi Mastx with diep reconstruction at the end of all this.  I don't know when the Rads will happen for me.

Welcome Foobs,

Yes you are doing this right. This thread is quiet on some days I am sure kfinnigan & the others will be here soon.

A friend of mine was Dx with ILC just 3 months before me and we have stayed in pretty close touch thru all of our treatments so I feel a kinship to you both also. She had tx at U of M in Ann Arbor and they were not offering this trial so she did AC x 4 and T x 4 and then rad. 

How are you feeling? I hope you are doing well.

Hi girls, just checking in for the day.  Didn't check in over the weekend...we're having a heat wave and was out enjoying the sunshine for awhile!  Now its too hot!  never satisfied...heehee

Foobs, welcome!  I'm 46 and had a left total radical masectomy w/axillary lymph node dissection 7/25/08.  Did dose dense AC x 4 and 12 weekly Taxol.  I had 25 bouts of radiation and finished that 3/23/09.  Just 5 more Avastins to go!!  I want to try for reconstruction when I get the go ahead, and hope that they can do it.  I never asked for my path report, freaked me out too much.  I just know my stage (my onc doesn't want that to define me)...she did tell me when I asked her what stage am I early on that they had redefined the criteria for staging and I used to be considered stage 2 - I like that so much better!  LOL  I am here if you want to talk or ask anything, like the other gals!  Check in and let us know the scan results.

Make it a wonderful day ladies! 

Hi Foobs!

Are you planting your tomatoes today?  Hotter today, a heat wave!!  Well, the AC was the worst part, the first one not so bad, but it was cumulative and by #4 I was so ready to be done with it!  Everyone reacts differently so I hope you have a mild time with it.  The Taxol was considerably easier than the AC on me.  I did end up with a fever at one point midway thru the taxol that postponed an infusion by one week.  But your hair will start to grow back while on the Taxol toward the end.  I finished #12 on 1/15/09 and my hair started to grow back in Dec.  Radiation was easier than chemo, the hardest part for me was laying still so long when they first do your simulation and my left arm (surgery side) was just aching.  I got red and itchy at the end, but it was sooo much better than chemo!  I haven't met with a PS yet since I'm still on the Avastin but I've heard from other gals than you have to wait one year after rads.  I will wait til end of summer then look into a PS.  I will answer whatever questions you have, just let me know!!

Have a wonderful day! 

Hi foobs. I am one of the gals on this site that is post avastin (arm  and post chemo, now post rads also.   As far as surgery , if you have avastin, they wait at least 30 days to 6 weeks before any surgery -- but if you also have radiation, most p. surgeons want to wait 6mos. to one year. I also had lumpectomy that led to a full mast. with immediate reconstruction - put expander in -then had my chemo and avastin, but ended up also having rads and just ffinished recently.  So,  I will wait one year for my final surgery/exchange for what I think will be a silicone implant, but not decided on all that yet.

My experience with radiation was ok. Pretty non eventful, but an every day obligation and I had to drive a distance.   I did get really tired, especially at the end. The swelling or sensitivtiy was fine and not that bad for the entire time until my last treatment. KABOOM....all of a sudden I was so red and swollen - it took at least 10 days to settle down. That was over a month ago and I am much better now. 

I know the waiting is hard. Right now I feel ready to launch into next phase of corrective surgery,  but I have to be patient for awhile. I also think my family needs a break from my "issues" --  I also have my first tests in May since finishing treatment, which will be one year since dx.  

As far as avastin, go for it. I think the upside is worth it !

Moborn63,

I did have heel pain during my AC part to the trial. THe chemo nurse thought it was some sort of nueropathy but the onc said no. But it did go away after I stopped the AC. Now I just still have tingling in my finger tips and toes from the taxol.  hope this helps to let you know you are not alone. 

Keryl  and Kfinnigan

  I'm so happy for you that you're this far along with your treatment. I can't believe how brave you all are.  I hope I can do as well and stay as positive as you.  How did you handle the chemo, Keryl?  Did either of you lose weight on chemo?  I can't afford to lose any more.

I'm just afraid the dose dense will be ugly.  I am trying not to worry but its hard. And I know I have to do it. My Onc also thinks Avastin is promising and I'm grateful that I do qualify for the study.

Keryl and Kfinnigan thanks to you both for your detailed input on what to expect for the timing of tx and then surgery.  I'm going to Houston for a consult with PC before I start chemo.  Its looking like they'll tell me I have to have a mastx after rads and then wait a year before my DIEP recon.  I had hoped for mastx with an immediate DIEP.  bummer!!  If nothing else this has already taught me that I have to be flexible! ha

Moborn--I'm on the trial, and have done 8/12 Taxols. I didn't have heel issues during ac but did notice the purple color after the first 3 or 4 Taxols. I've been using a foot cream with peppermint and tea tree oil. It has seemed to really help. For the neuropathy with Taxol I'm taking L. Glutamine 10 mg 3 times/day and alpha lupoic (sp??) acid, 600 mg/day.  Good luck

Foobs--glad you qualify for the study!  Re weight. I lost a few pounds on AC but have gained it all back plus a couple pounds on Taxol. I really get the munchies and completely lose control.

I had a 3rd echo because my trial director said my ef went down. It's now normal, thank goodness. I get unblinded next Weds. I'm also trying to decide if I want to do the bisphosphonates trial.My onc prefers me to do that rather than prescribing Zometa, which I've heard good things about. Can't believe I have only 4 more Taxols--next on Friday. What a trip it's been (and I guess will be as I start rads end of may early june and some kind of AL too).

 Kfinnigan: It was hot enough here for tomatoes this week, but cooling off. Maybe I should stick with lettuce! Had my first salad in months from lettuce I grew. The med professionals had me so nervous about eating salads out or from the store.

kim

 Carol,

I'm glad to hear you are doing well and that things are getting back to a more normal level.

Almost a year since surgery - - that's amazing.  

I have a question for you - - - - have you had a follow-up mammogram yet?  I have one tomorrow.  I am a tiny bit nervous, just because it's going to the doctor again and having tests done...yuck.  But, I wonder how useful a mammogram is?  The doctors knew there was a tumor in my breast but my breast tissue is so dense that it wasn't visible on mammogram.  I wondered if you ran into this same problem (I think there's a connection between dense breasts and breast cancer) and if your doctors were doing anything else, like ultrasound or MRI?

Jen 

PinkVelvet -  I will have my first mammo on my "good side" on 5/7 - almost one year from my dx on my left.  Had mast on left w/chemo and rads.   I have been through a lot , but feeling strong. I would like to think the right side is fine, but ready to pull the cord on the right, as well, so each mammo is key.  

Latrishja - as far as Avastin. I am not sure what to think when considering all angles; I dont know enough to compare colon cancer w/ avastin  to  breast cancer w/ avastin?  However, if they showed promise in breast cancer, and  I have that opportunity now,  I think I need to take advantage of what options are out there - I realize that there are no promises. Anyway- I am am happy to be a part of the research - whatever way it falls. I don't think it hurt me, other than itchy sinus!!!

Well Ladies I have completed my 4 bi-weekly cycles of the major part of my chemo which included the Doxorubicin and Cyclophosphamide. I now begin a weekly cycle of the Taxel. So far the doctors are happy with my condition. I have had nearly no side affect as yet except for mild sininse problems and the tenderness of the hands and feet and the hair loss. No nausia and rare joint pain.  I will keep you updated on the next rotation. I am still blinded until cycle 8.

Oh and my twin sister ( the small pic on the left of me in profile) is scheduled for her double mas next tues so prayers will be grateful.

Hi Ladies,

I have a question.  I am not on your trail but on the Beth trail which adds Avastin to TCH. I am about to start my Rads and my Rads onco said he doesn't like doing rads with anyone Avastin.  I know this is do to the healing problems it can cause.  Have any of you gone through Rads while on Avastin?  Had any bad SE"s?

Thanks a bunch!

Angie