Clinical Trial E5103

PinkVelvet

Hi Everyone,

I disappeared for a long time.  I had my 1st A/C + AorP in mid-July. Two hours after I got home I felt awful.  A lot of nausea and some vomiting.  I didn't get emend so I was relying on compazine and ativan to help.  It took the edge off but I felt horrible for about 6 days.  Luckily I was very tired and took 3 hour naps and slept a lot at night. 

I just got my 3rd treatment last week and it's better with emend and Kytril, still with ativan and compazine as needed.  The bad experience after the first dose has made it very hard to go in for the next dose and I cry every time as they are getting my port accessed and when I'm talking to the doctor.  I am glad that I only have one more A/C.  I think I'll take an ativan beforehand to help relieve some of the stress and anticipatory yuckiness.

It's helped me to hear others' experiences with Taxol and it sounds like there's less nausea, which I'm looking forward to.  My skin seems a lot darker esp. on my fingers and I'm really working hard to avoid the sun.  My nails are turning dark at the moons, I guess that this is common.  Lots of runny nose, runny eyes.

Well, I just wanted to let everyone know that I'm hanging in there and to let you know that I appreciate all you wisdom and strength.

Thanks, Jen 

carolynf

Hi everyone,

Jen: Hang in there Jen.  It does get better (did I say that?).  It's just getting through the big guns at the beginning.  Just take it one step at a time.  Have a celebration nap after the last A/C.  It does get easier.  Different SE's and maybe no SE's at all w/the next round.

Teresa: Take deep breaths (sp?).  You have been thru a lot this year and I know you can get thru anything at this point.  Just think positive.  I am glad they are doing what they are doing.  They are playing it safe.  My husband is on Levaquin for his infection.  He just started it today.  I  will keep you in my prayers.

Brena:  Well, I got on the HD the other day and boy was it nice to ride.  The day started off good and then I saw the clouds rolling in and said let's head home before we get soaked.. Made it home before the thunderstorm hit.  I really hate riding in the rain when I don't have to.   

I just had my 5th Avastin!! I can now say i am 1/2 way through.  I do have to say that I am getting old bones.  Just achiness.  Took today off so I could do some cleaning around the house which had been lacking.  My husband has been sick for a week or so.  He finally went to see the dr to day and found out he has a bronchial infection.  So, he's sleeping and I am doing the rest... I should sleep pretty good tonight.  Well, I need to do a little shopping w/my kids tonight and might bring them out for dinner since I didn't make anything.  Take care everyone and keep the faith.

Carolyn

Win_Lynn

Hi everyone!

I haven't read everything here... yet.

But I am on this clinical trial. I had a lumpectomy in April/May (they had to go back to clear the margins) and have been doing chemo since June. I have finished the A/C portion and am on the Taxol portion of the treatment now. The doctor suspects I might be getting the Avastan, due to some Side Effects.

brena

Carolyn,

So gladddddddddd to hear you got on the bike even if it was a short ride I have seen more woman ride this year than any other year, nice to see. Gosh do I have the itch!

Levaquin is some pretty powerful antibiotics it should kick the virus right out of the hubbies system. Congratulations on being halfway done with the Avastin., You will start the new year with no drugs or frequent visits to the the Onc's what will you do with your time? Do you think your achiness is due to Avastin or Taxol SE's?

When do the kids start back to school? are they stocked for their return?

friends,

brena

Jen,

Keep an eye on your nails and I hope they don't get worse. It sounds like your emotions are on the roller coaster ride, it is normal although knowing doesn't help. The Ativan should help if not ask for something else until you find something that works because you are dealing with enough in your life without the "high and lows" that are caused by BC. The Taxol will be easier on you physically but you will still be on the BC emotional roller coaster for some time to come.

How is your support system? Talk to us when you need, and please keep us updated on your final round and how your feeling. We are here for you!!

hugs from the group,

brena

Desi,

How is everything going? stomach burn? eating improved any?

 Like to hear from you.

cheers, 

PinkVelvet

Thanks Brena,

I have a great support system although I'm not sure most people really understand what it's like unless they have gone through it.  I think some people still believe that if you take anti-nausea meds that you are doing great and there's no problem.   My last A/C has been scheduled at an office I've never been to and I'm actually looking forward to it because I have no associations to it at all.

My DH and I have been walking every day.  It sure helps my emotional outlook as well as physical well-being.  I know that you are a rider and have considered getting a bike but haven't done anything yet.  Walking's great but there's just something so freeing about being on a bike.

Thank you everyone for all your help.  Hugs to all

Jen 

brena

Jen,

Wonderful to hear your walking everyday, extremely tough to do and yes it does help in the physical and emotional recovery. Keep up the great work! your almost at the end of the crap A/C. I hope your last shot is your easiest.

I will continue to ride my bicycle on a daily basis and maybe someday I will again get the real thing.

smiles,

brena

Win_lynn,

Welcome aboard and hope the information on this thread is helpful. I noticed your bio shows your Her2+ which is not permitted in this trial, maybe a typo and should be her2-? or maybe you are in a different trial.

Either way I am glad you found our group and I hope you have not had to many severe SE's.

What state do you reside? what Taxol # are you on, and what side effects do you have (my nails were the most troublesome) if any?

smiles,

brena

Carol,

How was your first Taxol? recovering from A/C SE's?

cheers, 

brena

Teresa,

How did you make out with your scan of your sinus? feeling any better? is this the first time you had this severe pain in the sinus?

sending you good thoughts and one BIG hug,

S3K5

Hi Brena,

Today is my 4th Taxol/Avastin. Stomach burn is bearable with Protonix. Even nausea is okay with Zofran. My appetite is slowly coming back but no taste buds! I don't know when they will recover!

During Taxol, many said that their hair started growing back. When did you notice new hair? My nails are all partially black - no pain but dry cuticles. I put tea tree oil, which helps.

Take care,

Desi.

Keryl

I posted on the Chemo thread about Trial E5103 and rec 'd no response, then I found this thread. 

I am interested in your experiences with this trial and Avastin.

I met with ocno yesterday. I have had left mast. with positive nodes; Will begin chemo in two weeks. Dr. approached me about this trial and sent me home with the consent materials and a stack to read. I have been surfing the net as well. Some of the addtl. side effects scared me, since I dont even know how I will tolerate chemo in general - as applies to most of us. I have excellent health otherwise.  I want to do the most aggressive thing as well as help the cause for all of us and our children. 

Please let me know how this has gone for you -- physically, emotionally?

Why you chose to participate & stuck with it?

Would you do it again knowing what you know now?

How do you feel about addtl. months of treatment /getting back to normal , if you work, etc- ? 

Any other info. you feel would be helpful - thanks so much..

S3K5

Hi Keryl,

Sorry you had to join this club but welcome! Few of us here have decided to go thru this clinical trial (specially if you are node positive) since there is a lot of data to show that Avastin prevents mets. I finished Dose dense AC (every two weeks) with Avastin/Placebo for 4 cycles; Now I am on Taxol/Avastin/Placebo - Taxol is every week and Avastin/Placebo is every 21 days. The side effects of Avastin are minimal - high blood pressure and some nose bleed are the only two that are bothersome.You won't even notice these minor side effects. Unlike AC and Taxol, Avastin is an antibody, so it is less toxic to the tissues.

I too started out with only one node positve (MRI) but during the surgery, the doctor had the SNB pathology checked out and since all three S.nodes came back positive, she did the axial node dissection right then. 2 of 9 were positive in the armpit. So that pushed me to stage IIIA from stage II. But as the onco explained, whether it is stage II or III, the treatment remains the same - AC + Taxol with or without Avastin. It is just sad that you have to go thru' another surgery.

Avastin slows down any healing - so the onco may wait a few weeks before starting chemo. In addition, you need to 'qualify' for the clinical trial - you have to get a few scans - MUGA,CT and PET to make sure these come out normal. MUGA is for the heart function.

I have no regrets joining this trial - since it can only help, not hurt my prognosis. Even if I am in the arm 'D' with additional Avastin doses, it should be still okay - it is once in 3 weeks with one hour infusions.

Good luck with your decision and sugery. Sorry it was a long post!!

Desi.

Keryl

Thanks for the insight. Yes, will ask about timing due to addtl. node surgery, although he knew about that when he estimated starting my chemo AC mid september. He pushed to get my addtl. node surgery done asap.

I already had the CT, PET, Blood and xrays anyway- all were clear. Still need MUGA, EKG and bone scan I think. (Less needles for those I think. )

Forgot to ask about reconstruction....Did you have a mastectomy? I presume so, but couldnt tell from the posts. How did this affect your reconstuction plans? Following my mast,  I have silicone fills going in now; fills s/b done by start of chemo.I would then wait until much later (up to a year if Avastin)  to do exchange and correct other breast. That is disspointing, but worth it if there is upside potential from cancer standpoint. How long after one finishes Avastin to have another surgery - will ask that one, but do you know?  

I am glad to hear you feel positive about this. Read some of the papers on line about it and scared me a little. Meeting with trial coordinator on Monday.

brena

Keryl,

Desi summed it up very nicely, great job Desi! I always stumble when it comes to answering this question. I would like to suggest you read all earlier posts on this thread as most of your questions should be answered and then some that you may not of thought to ask. It sounds like you are a very giving person and this trial would benefit you and other woman, regardless if you receive the Avastin or Placebo.

It sounds like you have quite a rough road ahead of you, a journey that you will not have to travel alone. I hope you decide to join us in making a difference, please keep us posted. Please post any questions that we can answer if you could not find in earlier posts.

 take care,

brena

Desi,

My taste buds didn't improve until near the end of Taxol and even struggled a few weeks after completing the Taxol. My taste buds recovered quickly thereafter and I was tasting Chocolate as it should be......delicious!!!

Hair, well mine is the slowest growing on the planet. I still have peach fuzz and trying to find every positive in not having hair. Yes, it did start to grow during the last few weeks of Taxol but I think it is on strike along with my nails. It appears nothing wants to grow with any speed, but I am being patient. If the hair doesn't pick up the pace real soon I may have to wear hats again this winter to keep my head warm

Has your hair started to grow, any peach fuzz?

may your Protonix and Zofran continue to work,

brena

Erika,

Are you alright? how is the Taxol treating you?

hope all is well,

Keryl

ok, did not mean to make my questions redundant to other posts.;  did review the posts prior to asking these questions. Did not see answers to my stated questions per se. Also, many were dated so didnt know if still participating.  sorry if I was asking repetitive questions here.  In addition, more than one response on any one question is helpful.

Anyway, just looking for information. I am a bit alone;  I know no one personally going through this, this is the only site I have queried and the concept of this ttrial has me a bit intimidated. I need an answer by next friday.;  Thanks for your help.

PinkVelvet

Keryl,

Thanks for considering participating in the trial.  I had mast. in May, reconstruction with expanders, and 1 node positive.  I started chemo A/C + Avastin/Placebo mid-July.  I really struggled with what to do but from what I found out, the worst side effects came from the "A" - doxyrubicin and that while Avastin does have some side effects they didn't seem to be any worse than the A/C.  I also spoke to my cousin who is an onc.  He said that his patients that take Avastin tolerate it quite well and he's never experienced anyone having a hypertensive crisis.  He encouraged me to participate.

My first chemo was rough - lots of nausea and vomiting.  I didn't get Emend the first round so the last two rounds have been better with the additional anti-naseau drug.  I don't think that what I've experienced so far is related to the Avastin so all-in-all, I'm glad I'm doing it and have no regrets so far. 

I will need to have surgery to replace my expander and put in the final inplant but I don't think that will happen until 6 months after chemo is finished.  If I am in Arm 4 of the trial, the surgery might be postponed a little while longer.  

I hope you get all your questions answered and that you feel good about the choice you made.  Keep us posted - everyone here is such a great support.

Jen 

Keryl

I called and sent in consent paperwork today- agreed to participate in the trial. after all that, with my luck, I will be in placebo group. thanks for your encouragement. 

as for other points, I was thinking I could work during chemo , but after reading posts, it sounds pretty brutal - but know it is individual. we will see how I fare. Today I had my second to last fill for reconstruction; originally, I thought this reconstruction was going to be the end of it. how naive I was.   psyching up now.... 

brena

Keryl,

I would like to give my experience in hope that it helps you with some of your concern and fears. At the onset of this trial I was identified as Triple Negative and knew the potential of receiving Avastin for early BC was positive. Since the FDA had not approved Avastin for early BC there was no chance to receive the drug through my insurance. I also thought if I had to go through this crap I would feel better and stronger about sticking with the treatment if the result would potentially help other woman. I would do it again in a hear beat, no regrets. The "A/C" can be pretty rough but as you can see we all make it through, there are bumps don't get me wrong but we know what we must do to survive. Knowing there are other woman here who listen and give guidance is a true blessing.

I worked 3 of 5 days during chemo and Taxol, took injections on Friday to have weekend to recover. I had no nausea or vomiting but there were days I thought my Onc was poisoning me. I also exercised everyday by walking a few miles, this was very hard to do but knew the result would be less SE, and this was true.

My family support has been great and those that I work with were very empathetic toward my needs. There were many days that I didn't want to be around anyone, just took my walks to give me time to think and absorb all that was happening to me. My emotions are and to some degree still a roller coaster, this is normal. It did not help matters that I tried to learn everything about my cancer because there is so much negativity around TN BC. Talk about information overload, hard to decipher all the information and not get overwhelmed.

My worse SE was and still is insomnia, I am currently working with my family DR to help resolve the 10 month problem. He calls it post-traumatic syndrome. My insomnia case seems to be an extreme but most woman experience it to some degree, so much going on in our heads and we arnt' even aware. The steroid given before the chemo contributed toward the insomnia but I did not like the alternative.

Carolyn and Teresa are in arm C/D so they are the best to give thoughts on the additional 10 visits to receive Avastin. I was randomized into the placebo group, my symptoms appeared to be Avastin but was really the Taxol. Even though I was in the placebo group I am still as important to the study, without the placebo group there would be no comparison.

Please take it slow and read as much positive information and success stories as you can handle. With your participation you are making history, just think if Avastin is approved you can say you were one of only 6400 woman who took an active role to benefit the lives of others.

What state do you reside? your age (if you don't mind)

I hope I have answered your questions and it is wonderful to have you part of the group, welcome aboard. ok, I got a little long winded.

sleep well,

carolynf

Hello all,

Welcome those who have joined recently.  Brena put it like it is.  It is different for all of us but a lot of SE's and emotions are similar.  I worked thru chemo (A/C & Taxol).  Took it on a Monday, Shot of neulasta on Tues and on Friday was feeling blah. Had the weekend to recover.  I only took compazine 2-3 times and it was during the holidays.  I wasn't really eating what i should have.  Started exercising but found my bed more relaxing (except for some weight gain).  Radiation was a differnt ballgame. Daily but quick. By week 2 I felt tired.  That came and went. I took more time off on radiation than chemo. I have not had rads for just over a month and still am feeling fatigued on and off.  I do not think the Taxol is out of my system yet.....I JUST LOST MY 1st toenail  I thought i would go thru this whole thing w/out any of that.  Well, it just took my body longer than others.  No blood or anything.  Hopefully no more!  I had to leave work early yesterday due to fatigue.  I did have a root canal on monday and am not sure if that contributed to the fatigue.  I did walk 3.5 miles last night on the track.

Carolyn 

carolynf

Jen,

 I am glad you got some Emend.  I think that was a godsend during chemo.  I took 2 dexameth the day before chemo.  Then 1 Emend before chemo, and then 1 for the next 2 days. It really helped.  Hope you are doing better now because it does get better.

Keep smiling!

Carolyn

carolynf

Brena & Teresa,

My hair has grown quite a bit. It feels like a chincilla!!  My son just got back from California and thought it was much darker.  I guess that's a good sign that there's more color coming thru?? I haven't colored it even though I keep thinking it. So far everyone says they love it...I think it looks ok but am stilll looking for that hair i used to put up... Feeling good today. I am w/you Brena in regards to sleep.  I am still on lorazapam.  Even w/taking that I don't fall right to sleep. This morning I overslept because I did have a hard time getting to sleep. Maybe when my hubby takes off to Milwalkee next weekend I may get some sound sleep because no one will be there rattling the windows.

 Carolyn

sftfemme65

Hi Everyone....ok for the sinus update.  Things still are not good, but not worse either.  I saw an ENT today.  He said I'm having severe allergies.  Nice hu.  So I'm on a new allergy med and nose spray.  will see him again in a month.

Carolyn, so you lost a toenail??? wow, I have on thats about to fall off too.  Isn't this crazy.  So long after the taxol.  Makes me so mad.  My hair is really growing now too.  And not as grey as a month ago so I'm hopeful lol.

So hands up who's going on the cruise?   When are you making reservations?

Teresa

brena

Teresa,

I will be going on the cruise, I will opt for an inside room due to such a short cruise. I will be traveling solo so if anyone wants to bunk and split the rent with me they are welcomed. I will wait until after labor day to make the arrangements with the travel agent.

Sorry to hear your having such problems with the sinus but glad it is not cancer. Have you had allergies this bad in the past?

I colored my fuzz, it is soooo short but I didn't care. I had my daughter help me color the little sprues ever so gently. It turned out pretty good and I used golden brown, will change to a natural black within the next two weeks.

I got my fingernails painted, the paint only lasts a week and then peels off due to the nails are white (dead) and nothing really adhers to them. My two large toenails are half grown so should be normal within two more months then I can have a pedicure!!

Insomnia, huh don't get me started on that topic. I am up to four different sleeping pills alternated with benadryl. Taking it one night at a time and trying something different to see what might work.

I will let you know when I make my deposit for the trip, let me know if you want to share rooms.

 take care,

sleeping pills are working

S3K5

Hi Ladies,

I have been lurking and reading the posts but not posted recently. I finished my 4th Taxol/Avastin/Placebo last week and tomorrow is my 5th Taxol. I have had nose bleeds (not just when blowing nose) but streaming blood this week - don't know if it is Avastin or Taxol!

Fatigue and muscle pain (upper back and neck) seems to have gotten worse. I was hoping Taxol will be easier! I hope the SEs don't get worse with every week TX. Still on STD - haven't had energy to drive 25 miles each way to work!

My hair (what was left after AC) is still falling. Nails had turned black long time ago. As long as it is not painful, I can live with that!

Brena, I hope your insomnia gradually goes away. Maybe getting on the cruise and getting away from home would help. Are you stressed at work or home?

Take care,

Desi.

PinkVelvet

Hi All,

I just had my last A/C/trial drug today.  No weeping!  The Ativan helped, as well as knowing that it was my last one.  I don't feel too bad now.  Lots of naps.

I've asked 2 oncs. about nail loss with Taxil.  They both said it was rare, more common with Taxotere.  I'm still expecting that it might happen, given that several of you lost nails and/or had infections.

How much nausea did you experience with Taxol.  I'm going to take Emend anyway just in case, at least to start with.  Because I didn't have it before my first A/C, I'm really unwilling to feel anything like that again.

Keryl - I've been able to work part-time during the A/C.  I have my infusions on Thurs. and take off Fri. to Tue., returning on Wed.  I am a psychologist so when I have scheduled appts., it's a little tricky to be flexible if I don't feel good.  I have scheduled in breaks in the middle of the day and try to take a nap.  That seems to help.  Hang in there.  It is rough sometimes and some days I would just cry and say how much chemo sucks.  I thought the A/C would last forever but it really does end and you can get through it.  My DH and I walk every day and I think it's helped a lot - mentally, physically.  Hang in there.

Brena - I hope the pills are working for you and that you are slumbering away as I write this.

Take care all and thanks for all your help.

Jen

sftfemme65

Jen congrats on finishing that nasty A/C, I hated that stuff but we survive it, right.

I had taxol and I had lots of issues with my nails.  In fact I finished taxol at the end of may and here I am 2 and 1/2 months late about to loose my big toenail.  It happens but it sure isn't the end of the world.  I thought taxol was so much easier than that A/C for sure even with the new side effects.  Hang in there.

Brena, you and I both have been attacked by the insomnia bug.  I haven't had a good nights sleep in 9 months at least.  I try ativan, lortabs everything.  Nothing helps.  It sure stinks thats for sure.

Teresa