Clinical Trial E5103

Hi TN36.  I am going to be starting my chemo on the 19th.  I'm going tomorrow for the first of my scans for the E5103 trial.  Muga, then the bone and pet next week.  I was wondering if everyone of you ladies on who are doing chemo have to have a port or if the chemo drugs are delivered by IV.  The whole idea of the port freaks me out at the thought of it, especially for the summer months. 

Well, although I still feel like crap, I am on cloud nine today.   I was finally unblinded and I am in ARM B of  the study.     I actually began praying that I was in that ARM after my onc told me he was sure I was receiving Avastin.  I received my last dose today.   YEAH!!!!!!   I still have 2 regular Taxol treatments the next two Thursdays, and then off to rads.    WOW.   I can't even express how I feel emotionally right now.    My onc said that his bias in this trial is actually ARM B so he was happy for me also.

Hope everyone is doing OK.   Kind of a mix with the benadryl and the dec, so not sure I will  sleep or fly tonight.    I will catch up on all the posts, but wanted to post my news.  

Thank you all for the support we give each other.   This is such a great site.  

Hello Texas Rose and welcome

I am under the same trial and had the DD AC x 4 with either the placebo or Avastin

I just started the Taxol x 12 and have my first 1 yesterday.

I have not had hardly any problems except senitivity to feet and hands and hair loss  and blurry eyes through this entire chemotherpy procedure.(hopefully it will stay the same with the Taxol). Hope everything goes well with you to.

moborn63--I just started Taxol x 12 yesterday, too. I haven't had many side effects from the AC either--mainly fatigue and hair loss--maybe we north MO girls are just tough??? I'm originally from Kirksville, but am now in Springfield. Hope it continues to go well for you. 

brendafromflorida--congratulations on the Arm B.  I'm crossing my fingers, but won't know for 2 more months.

Mary--glad you joined the study.  I think it's a win/win for us.  And good wishes for the 26th--every time I go in for tx I imagine putting another "notch in my belt" in  my fight against bc.

Shanagirl--Good wishes to you for the 19th.  The oncs in my group require a port if you are having AC--won't use IV.  There are options for placement--and one doc has them placed deeper if you are concerned about necklines.  I've gotten along great with mine--can't imagine not having one with all this chemo. 

Take care--Helen

Hi all. I concluded Avastin (arm and chemo in early Feb - I have noticed your comments on vision blurriness -- let me say that my eyes were very distressed during this. I was not sure if it was age, stress or the meds. I can tell you now, that I think it is a combo -- BUT I am soooo much better now. I still depend on "readers" and did get an official pair of progressives, but  previously almost nothing helpings as my eyes felt so fatigued and chronically watering.   So, hang in there and wait for end of treatment before concluding about the eyes. I would say, wait 30 days after conclusion to get a better "read " on whats going on there.   I love my glasses now , but I can cope now without them or without them but when on treatment, no way, I was very irritated with eye sensitivity. have a good week. 

kfinnigan

You look beautiful.  Great that your trip went well and you're almost finished with treatment! 

I start chemo tomorrow.  Wish me luck. I hope I don't have bad side effects. 

 I had my port put in last Fri and it hurts quite a bit (of course)--guess I'm going to be that way.  Pain from the lumpectomy/node removal/adhesions is so much better.  I'm seeing a great physical therapist who is good with lymph issues. 

 I had a wonderful Mother's Day weekend, all the kids were here.  They planted flowers all around my outdoor gazebo "so I'll have a colorful place to recover from chemo."

 I hope everyone is doing as well as she can right now.

foobs, GOOD GOOD LUCK!!  I'm pulling for you!!  The flowers and gazebo sound wonderful!  What chemo are you going to get?

u2av8r - Kimberly is in the thick of things right now.  At that same point in my treatment, I had a fever (I knew I didn't feel good a few days prior, well worse than normal) and that delayed chemo for a week.  I cried a lot during those days, just felt miserably tired, my legs were so heavy.  And I always exercised my whole life and ate good and was in good shape.  I had to stop my walks during DD A/C because I didn't think my legs would carry me home.  I resumed after the Taxol finished.  Also the Taxol kept me very anemic, and made my heart race.  Had to be put on medication for the heart and quit after the Taxol.  My WBC counts stayed normal so I can't comment about that.  If she's on Arm C, it will be MUCH better!  I go in now for just the Avastin, there are NO pre-IV drugs given...just the 30 minute Avastin infusion, and now I drive myself to and from the appt. from work.  My onc and nurse knew I was on the "hard" stuff (Avastin) cause I had the voice changes and bloody nose issues right from the get go...but everyone is different as they say.  I've been lucky with no lympehdema problems, even on my trip last week, I don't have a compression sleeve, all my drs tell me just be aware of the risk and follow the precautions for it. Tell her to hang in there and listen to her body.  I was on the phone almost daily with my clinical trials nurse, Kristine, she has been my godsend during this whole thing.  She still comes out and sits with me during every infusion.  Rely on yours for all questions, that's what they're for!

Good luck, I don't think you have the easy job either.  My hubby is finally letting it out...all the emotions he kept in during those bad chemo days.  This is not easy for any of us, but we are all grateful we have this forum to share with one another.

Have a wonderful day, it does get better, I promise!!   

U2aV8R:  So nice you are here for your wife.   I was unblinded last week and am in ARM B of the study.   I had mixed feelings about continuing with the study if I happened to fall in ARM C.  I am very happy with my result.  I would have done it, but could not bear the thought of another 6 months of any type of chemo. 

I have been giving myself a shot of neupogen for the 3 days following each treatment.   My white cells have been very good since beginning this.  I missed one Taxol early on because the WBC was only 2.2 and that is when I began the shots.   They were very effective for me.  

During Avastin, I had changes in my voice, very severe and constant bloody discharge from the nose.   I also had chemo induced anemia, my hemoglobin has only been between 8 and 9 the entire time.  Talk about being tired with racing heart.   I had to have 3 blood transfusions so far and today it was down to 8.4 again.  When it reaches 8 they want to do the transfusion.   I am pretty sure that receiving Avastin drove the hemoglobin down more than the Taxol only. 

I have also had blurred vision.  Normally, my eyes are not great, but there has been significant change on the chemo.  I am waiting to see my eye dr until chemo is finished.    

Everyone is different, but I wish your wife much success.  I was also told that the effects of Taxol are cumulative and when you get to the 6 or 7 mark, they will seem more severe than before.   Hope this info helps.  

I have one more Taxol to go.   Then I am finished with chemo.     A few weeks ago I didn't think I would ever be able to say that.  

Good luck everyone. 

Kfin, Brenda, Janet,

Thank you so much for your insight and answers.  Kim was on the brink of getting a blood transfusion at the beginning of Taxol.  She took lots of iron and protein per the dr's suggestion, only to find out it was tearing her stomach up!  Once she stopped taking iron sups, she felt a lot better.  Her count got just high enough to avoid a bt, but we were literally about to get into the car when they got the results back and said hold off.

Glad to her Avastin is "stand alone."  It's still a trip downtown for us, but if indeed she is on ArmC, we'll probably try to see if they can give it to her here on the Windward side.  However, I'm a bit skeptical she's getting the "hard stuff" as she exhibits none of the symptons most of you are describing.

We decided this week to do the blood test the day of since she had to do double (day prior and day of) twice now on Taxol.  If her WBC is indeed low again and she has to delay chemo today, we will inquire about Neupogen.

Kfinnigan - I see you live in Lincoln, CA.  We lived there for five years and still own a house in Twelve Bridges we keep as a rental.  Both our sons were born at the hospital in Roseville.  My mother still lives in Sun City...small world!  I'd say we miss it, but we absolutely love living in Hawaii.  I still drop in to see my Mom and check on the house.

Thanks again and God Speed!

u2av8r - I was on the brink of a blood transfusion the day of Taxol #7 (they had put the IV in and then took my temp, which they never did before, and discovered the fever).  I had had 2 iron infusions with my Taxol the prior weeks to that and it tore my stomach up too!!!!  I remember being so upset that day because that was a time when they got the IV in first try!  I was so bummed that it was a waste...seems weird now to think about that.

hmmm....Hawaii or Lincoln, tough choice....NOT!  haha  I am from the Bay Area originally, lived in N.C. and Oklahoma for 12 yrs then back to the Bay Area...then to Rocklin in 2000, my girls went to high school there.   We moved to Lincoln last year and downsized somewhat, and the girls have flown the coop!

Wishing Kim and the rest of you all gentle treatments 

Brena,

I pm'd you back!  When i spoke to my onc. he told me that the other trial (bioph.) that you are in is showing great strides. He had me take a bone density test so if the trial turns into a treatment option that he can give me this new drug. 

Carolyn 

U2av8r--I hope your wife is feeling better. How great you are there for her! I just had my last Taxol today. I remember when I was at about where your wife is that I felt I couldn't do it. I was depressed, and becoming more tired by the treatment. I did continue to work part time and walk. I would force myself to get outdoors, which helped my mood hugely.

My WBCs have gone up and down--went up to 3.5 during taxol, but dipped to 2.5 this last tx. They tanked during AC at 1. Neulasta didn't work for me, so I took Neupogen shots, which did. The counts increased on their own during Taxol, but my onc would have given my Neupogen if not. My hemoglobin was low, and I started eating much more red meat, which I never ate much of before.  I got a steroid cream  rx for hemmorhoids etc. Really helped along with Metamucil 2x/day.

I can't speak to Avastin SEs since I was getting placebo. But I think it would further affect blood counts, so maybe your wife is getting it. The only SE I had that made me think I might be getting Avastin was my bloody nose, which I guess can happen on Taxol too.

Good luck to you both. --kim

All,

Carol here--just finished my LAST avastin on Arm C last thursday. So update from the far end of the study.

1. For all those experiencing low WBC's on Taxol--that happened to me as well, they finally gave me nuepagen to keep the counts sufficient for treatment. I have heard that it isnt unusual, but they were sort of surprised when it happened (i was one of the first ones on at my center).

2. continuing on the Arm C is not that hard, more just a hassle every 3 weeks, but really no SE's other than kind of a hoarseness in my voice. other than that no big deal.

Question--did anyone here have radiation after reconstruction? I did and am experiencing scar tissue around the implant. any suggestions? i have tried PT which helped some and am on accolate to try to reduce scar tissue. let me know if anyone has any ideas.

thx carol