Clinical Trial E5103

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  • cjh
    cjh Member Posts: 78
    edited October 2008

    Hi All

    Just wanted to jump over on this thread from the Sept chemo thread to THANK you all for your invaluable postings. I have read through them at least twice before I decided and started the clinical trail E5103 dose dense on September 18th. I had my second ac today and am having very few side effects...hair is getting a little wispy but not noticable to others.

    I am at Mayo Clinic and was the first one in the clinical trial there.  My number is 51  in the overall study.  Anyone figure out the random sequencing yet.  Since I have no side effects I have no idea if I am on the avistan, drives me crazy some days not knowing.

    There are two more women that have signed up for this study at Mayo this week according to my clinical trial coordinator so I hope she can pass on to them about this thread.

    THanks again,

    cjh

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  • karakay
    karakay Member Posts: 7
    edited October 2008

    Teresa,

    To answer your question... No, I did not have a lumpectomy.  I had bilateral mastectomies. However, clear margins were practically non existent (less than .01 cm), which is why we are considering radiation.

    I'm VERY happy with my decision to have the mastectomies. I just turned 29 years old, and I am a worrier, so a lifetime of mammograms would have been torturous for me. 

    Sending you good thoughts : )

    Kara

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  • carolynf
    carolynf Member Posts: 262
    edited October 2008

    Hi rjuem,

    I did have nose issues such as yours.  I started using saline solution and vaseline on the inside of my nose.  There were times that my nose was so sore I couldn't sleep.  It still runs but I figure I am on the downslope and have just over 7 wks for my last Avastin.  It does get better.  When I look back on when I started this journey, believe it or not, time has flown.  Maybe its because I slept the summer away or I am getting older (today's my bday...46!).  I have been having a hard time waking up in the morning vs being tired in the afternoon.  I just keep thinking I am almost done.  I have also given up on the Lorazapam and now sleep w/out drugs.  I have taken melatonin a couple of times but it doesn't make you drowsy in the morning.  In regards to exercise.  During chemo I would exercise once in a while but did not have the energy to go for walks/runs.  It has gotten better but I am just busy w/soccer at the present time.

    Good luck and don't tire your self out.  Its not worth it.  If your body says rest...rest!

     Carolyn

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  • carolynf
    carolynf Member Posts: 262
    edited October 2008

    Hi Teresa,

    I am sorry to hear the SE's that you have been going thru and the stress.  I would recommend a nice massage or some acupressure to get rid of it.  I have had a massage and acupressure and am now seeing a chiropractor to get my body back in sync.  It seems to be helping.  I have also had some fluid retention like 6cooks but in my left hand (the "bad" side).  My onc thought it maybe arthritis from the chemo.  When I was having chemo, a PT came in to talk w/me.  She is a breast cancer survivor and has an idea of what we go thru.  After talking w/her she suggested I may have fluid and tissue damage.  I started going to PT for my hand and shoulders/neck (stress) and it has been wonderful.

    When will your last avastin be?  Mine is Nov 24th.  I am glad you are getting settled in your new home.  That should take a load off of you.  Take it easy.

    Carolyn 

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  • carolynf
    carolynf Member Posts: 262
    edited October 2008

    Hi Brena,

    How goes the boob?  I hope it is better.  How did your Dr's visit go? Well, the soccer season is winding down since we are 1/2 way thru the season.  Then it will be Basketball, at least for only 2 out of 3.  My girlfriend stopped by my house last night to celebrate my birthday since I have to work tonight at the military base.  She mentioned something about my husbands license plate....he wasn't up for registering his truck so I looked outside.  He signed the petition in ME to help get the BC license plate.  I was surprised because he never said anything to me!  They just came out on Oct 1st.  What a honey. 

    Well, i have to get some work done. Take care.

    Carolyn 

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  • ekenny315
    ekenny315 Member Posts: 68
    edited October 2008

    I was unblinded today, i was Arm B so no more avastin for me. I had one side effect from it and that was very slow wound healing. My incision for my port which i got at the end of may 08 - just healed completely last week. No nose bleeds, rashes etc.... I see a light. I really needed to hear this today, For the past 6 months i feel like i have been constantly kicked in the you know what. It's almost like winning the lotto. I realize that it's all still a "crap shoot" but it makes me feel better knowing i was part of a study that could help millions.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited October 2008

    Erika,

    I'm happy to hear you were getting the drug too.  I think this study is going to be a great thing. 

    Teresa

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  • ryjuem
    ryjuem Member Posts: 64
    edited October 2008

    Hi all,

    It's good to come here and see how everyone is doing.  Thanks for the encouraging words...somehow it's comforting to know that there are other women awake into the wee wee hours.  I some times take something, but not always.

    My port hasn't been cooperating.  I have had to get the cathflow every time and last week they sent me to the hospital for a port study.  Evidentally it's too short and not far enough into the vein so a fibrin sheath is created.  Today I'll find out what we're going to do about it.  One group of "experts" say it's ok to keep getting the cathflow, the other group says no...I will be %$#%^ if they have to remove the port and I have to go with tx through vein...  I still have a lot to go.  We'll see.  No sleep=Negative attitudeYell  I'll have to work on that!!

    -joanne

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  • brena
    brena Member Posts: 458
    edited October 2008

    Erika,

    I am so verrrrrrrrry proud of your courage and strength that you have shown with your journey. You have made a contribution toward medical history and you should be proud to share this with your children aswhen they get a little older and have a better understanding of what you have gone through to make life a better place for them and others. I am excited you received the Avastin and hope it provides a better, cancer free, life for you. Please stop in and share your progress in the latter part of your journey and maybe help other woman just starting theirs.

    also posted this response in the TN thread.

     many hugs to one brave woman!!

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  • brena
    brena Member Posts: 458
    edited October 2008

    Carolyn,

    Wow, Nov 24th is soon arriving. You said time would go by fast and you were so right, I will be in Spain on the beach during your last treatment. I will give you warm thoughts on your last round.

    Soccer is my favorite sport even tempted to stop and watch a few games while driving. Watching the game gets my blood flowing!

    My sleep is getting better without drugs but do take the occasional benadryl. Today I am getting an ultrasound on my LBreast, still swollen-warm-ache. Thought about having the lump on my R Breast included but will wait a while longer. So much for my goal of not having more meds or being pocked and probed for the remainder of this year. Maybe that goal could be my next years resolution?

    This is my favorite time (season) of the year, color of nature is at its best.

    talk soon,

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  • carolynf
    carolynf Member Posts: 262
    edited October 2008

    Joanne,

    I had the same problem towards the end of my Taxol treatment!  Not sure if the line was short but I could have chemo thru it but they couldn't draw blood...So blood was drawn from the arm for about 4-5x.  Then they had a problem giving me the chemo, they could get the blood but couldn't do the other...We devised a plan, I had to hunch forward and bring my shoulders high (towards the ears)....it worked!  I have a kink in my line that goes to the vien up top...  Doing the avastin every 3 weeks has not been a problem.  Go figure.  I hope they can figure out a creative way to get it going...

    Good luck

    Carolyn

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  • carolynf
    carolynf Member Posts: 262
    edited October 2008

    Brena,

    You have had quite the year!  I hope they can at least offer you some comfort for the pain.  I am sure once your boob gets better your sleep will follow.  It sounds like you are on the road to sleep.  I am a jealous dog. I would love to go back to Spain. What part are you going to?  I went to Playa del car and Roda.  Loved it.  Beautiful place.  At least you will get a siesta!

    I guess we both have the same New Yr's Resolution to start the year on a good foot!  I have no travel plans right now but my kids are bugging me to go back to Maui.  This would be fine w/me but its getting harder w/1 child in High School.  If he was a straight A student it wouldn't be to bad but he's a slacker right now.  He's gotten better w/homework etc, but I hate barking at him.  Well, I need to run. Take care and let us know how your appt  goes.

    Carolyn

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  • cjw
    cjw Member Posts: 42
    edited October 2008

    All,

    I just got unblinded today after my 10th taxol treatment--I am getting the Avastin and am in Arm D so will continue it for the extra 10 rounds. That was good news as it has been kind of a slog lately, as I was fighting low blood counts, then got a bad cold/sinus infection and basically missed over a week of work just from the cold.

    For those still waiting--I had almost no side effects at all--no bloody nose, no high blood pressure (although mine is normally very low 90 something over 60 something and it did go up a little periodically), no headaches, no nausea, no rashes. I was sure I was on the placebo but it appears you can't judge by side effects.

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited October 2008

    cjw, 

    Congraduations on your unblinding and continuing on in Arm D.  I hope you've recovered from your cold/sinus infection. 

    The research nurse has told me I might be getting Avastin based on some of the side effects, although after reading everyone else's experiences, I don't have any expectations.  I just had my 6th Taxol and will be unblinded on 11/6.  There is an end in sight.

    Take care of yourself,

    Jen 

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited October 2008

    CJW,

    Congrats on your unblinding.  I also have been recieving my extra 10 treatments.  I'm glad to hear you are having so little side effects.  Hang in there, it will be over before you know it.

    Teresa

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  • S3K5
    S3K5 Member Posts: 606
    edited October 2008

    Hi all,

    Just an update - I just finished 12 weekly Taxol on friday and I feel so exhausted today! I don't know when I'll get my energy back! I will start radiation in Nov. I have an appointment for simulation and planning on 23rd Oct. I don't know what side effects to expect from radiaton.

    For all those who have gone thru this before - when did  you start to feel 'normal' after chemo ended? I usually have muscle and bone pain for 5 days every week. I take advil for this. Nose bleeds have been reducing, since I received my last Avastin on 26th Sept. It is the fatigue that is bothering me - don't know what I am doing wrong!  Any advice? I am planning to get back to work soon, but I don't know when I will be able to.

    Thanks for listening,

    Desi.

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited October 2008

    Hi Desi,

    Congratulations on finishing the taxol - it's a big mile stone.  I just finished my 6th taxol so I can't comment on feeling normal again, but I guess it takes awhile and each person is different. You aren't doing anything wrong at all and your body will let you know when you are ready for more.  I know it's frustrating to keep waiting to feel better.  I've read that "energy conservation" is important when you are fatigued - doing a little and then resting, although that doesn't really solve the problem, just a way to deal with it.

    Hang in there,

    Jen 

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2008

    Thanks to all of you for your willingess to participate in this trial.  It is so very important.  You are my heroes.

    Erika, just thought to tell you to keep your protein up, good for fighting cancer and for healing. Maryiz 

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  • brena
    brena Member Posts: 458
    edited October 2008

    Desi,

    Wonderful, you have made it and now your on to the last stage of the necessary steps. I hope you give yourself enough time in between chemo and rads so your body has time to recover. Rads will also put a strain on your body, you may not feel it at first. Some woman go through rads without any issues but most experience some SE on a small level. I wish you the best for the last stretch of the journey.

    Just sleeping and mild exercise are the only two activities that will help with the fatigue.

    congratulationsSmile

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  • brena
    brena Member Posts: 458
    edited October 2008

    Carolyn,

    I am sleeping a little better but always feel tired and must push to keep moving forward I called into work yesterday and told them I was taking the day off to celebrate "life" and I would see them on Wednesday. After my bike ride I spent the day at the beach walking the boardwalk indulging in boardwalk fries and funnel cake. I even bought a piece of fudge for the ride home. Had a great day and the weather was absolutely beautiful, my favorite season.

    Try to get in the last few bike rides before the winter gets here.

    My boob is sore but not as painful as it had been, I was trying to see a physical therapist who is experienced with lymphedema in the breast. I was recommended to one, only one in southern jersey, and she does not participate with my insurance so it would be some money out of pocket. I will continue to seek another and just put off the therapy for a few weeks to see if it continues to get better on its own. I could always go to the referred therapist if it got worse.

    I will leave for Torremelinos Spain on November 12 and return Thanksgiving Day, I don't want to have to worry about fluid in the breast or pain. My trip was the reason I was trying to seek therapy fast but I will just ride it out with a little luck and massaging I can improve the edema on my own. 

    I had my periodontal check two weeks ago and everything was great, no problems due to the Clodronate (other trial.) 

    I get another dental check-up in December along with my MUGA, EKG, MAMMO and have my port removed. What a busy month it will be, so much for the NO POKE AND PROBE.

    My hair, finger and toe nails are growing. I may even be able to get a pedicure before my departing for Spain.

    I hope everyone is healthy,

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  • brena
    brena Member Posts: 458
    edited October 2008

    CJW,

    I get excited every time one of you ladies are in arm B or C, congratulations...whoa..whoa! Glad to hear your going to take the extra 10 rounds of Avastin you share the front seat with Carolyn and Teresa. Symptoms or their lack of do not always tell the story, you are the proof. I also had some Avastin symptoms and rcvd the placebo, so one can not tell by SE alone.

    I hope your lack of SE continues, please stop in and tell us how your doing. Any problems with dark or loosening nails?The Taxol had beaten most of us up, and continues to some degrees. I am truly amazed that no-one else has experienced the red rash up the arms as Teresa and me had experienced. Teresa rcvd the Avastin and me the Placebo, only common drug was the A/C and Taxol. We did not develop the rash until we rcvd the Taxol.. I guess the experts will figure it all out.

    you do make a difference for all woman,

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  • brena
    brena Member Posts: 458
    edited October 2008

    Jen,

    You stopped in but you didn't tell us how are you doing and feeling? what SE are you noticing?

    11/6 is the big day, we will be waiting for your unblinding.

    talk soon, 

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  • cjw
    cjw Member Posts: 42
    edited October 2008

    Brena

    I have not had any nail problems. The only sort of weird thing I had beside low blood counts is a numbness in the top of my foot--its like I can't flex it. I saw a rehab doc though, they took an xray which showed nothing. It appears I compressed a nerve that goes from my knee to my foot (by sitting on it bent under me, then wearing super high heels). I don't know if the nerves are more sensitive due to the taxol, but I havent had any of the neuropathy.

    I am meeting with rad onc next week--i had a mastectomy and 2/13 nodes positive, so I am in sort of the gray area apparently. Although if there is any chance it does any good I will do it.

    I agree--i think the weeklly taxol has been a slog-even though the AC was physically tougher, the 12 weekly get sort of hard.

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  • carolynf
    carolynf Member Posts: 262
    edited October 2008

    Hi Brena,

    I just finished another chemo on Monday...2 more to go!  Time is really flying.  I still have my right big toenail that is black! I have to keep polish on it due to me wearing sandals still.  I hope to get a pedicure next month.  Sorry to hear about the boob still acting up.  Massage is definitely helpful.  I wonder if the PT would do the electrotherapy on it??  I had acupressure yesterday which was wonderful.  When I got up I was very light headed.  Its amazing how good I felt last night. One word "Relaxed".  Are you all packed for your trip? Did your onc have you wait to have the port taken out due to the avastin? or was that by choice?  I am looking forward to getting the port out but am unsure of how long it will take to heal.  The nurse had to stick me 2x on Monday because she couldn't draw blood.  It finally took.  My skin/port area was very sore.  The gauze pad was soaked w/blood when I took the bandage off that night.  How much longer do you have to go on the other trial?  Are you having any se's?  I guess I am getting a little long winded...BTW, I am still tired.  I don't know how to get the energy back.  When you figure it out, let me knowSmile

    Carolyn

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  • S3K5
    S3K5 Member Posts: 606
    edited October 2008

    Hi Ladies,

    Now that Chemo is over, I am waiting to start feeling 'normal' !

    Brena, thanks for your response. I have been resting and going for small walks. Hope you enjoy your trip. I have been referred to a lymphedema therapist - I will be seeing her next week for evaluation. I hope I don't have to go for PT often, since this place is far from where I live. There are no other therapists in central NJ area.

    Jen, will you have to go thru radiation too? I hope not. Once this fatigue from Taxol reduces, I am planning to go back to work during radiation.

    I don't know when my port will be taken out - the nurse said after radiation. So I guess, I must wait.

    Carolyn, Taxol will be over soon. So hang in there!  Since it is 12 weeks, it seems to go on forever!

    Take care,

    Desi.

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  • brena
    brena Member Posts: 458
    edited October 2008

    Carolyn,

    Havn't given my trip a whole lot of thought, need to get into gear. I plan on sitting on the beach and a little sight-seeing. Back in May my Onc said I could get my port out, much want to feel normal again. I plan to remove the port in December, meet with the surgeon at end of October to make arrangement, a nurse suggested I wait until spring to have it removed. She said she has seen many patients only have to turn around and have it reinstalled. I want to start the new year with the fewest reminders of the BC. Don't even plan on going back to the Rad/Onc for any future visits, just returning to the Onc for follow-ups due to the trial. I have really had enough of it all!! If I have any problems I can just whip out my BC book and start dialing. Will do my mammo in December to finish the year with a bang, hope the boob can stand it.

    My follow-up for the Bisphosphonate trial, meet with the Onc every three months for three years. So you see I really won't be to far from one of my lifelines if needed. After three years I fly solo.........can't wait.

    Am giving my breast until I return from Spain an reevaluate the edema. It does feel a bit better this week, some days more than others. Definitely not as bad as the first month.

    Before we know it the holidays will be here.

    Desi,

    You made it to the finish lineSmile

    sleep well,

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  • debk55
    debk55 Member Posts: 108
    edited October 2008

    Hi All,

    I am going to be starting the trial 10-31. Have any of you worked while doing this chemo??

    I work in a family practice DRs office and work 10 hour days monday thru thrus. I had just started the job 3 months ago and they have been wonderful with all the dr visits and tests and I can be off. I told them probably til feb. But then my onc told me about this trial and would really like the chance to get avastin!!!  But I wonder about the extra taxols. My onc orginally told me only 4 every 2 wks after the AC. I will need to be off a lot longer if I do the trial and wait to be done with chemo to go back. I live in Michigan and jobs are hard to come by and I love this one. I want to  do the trial but I want to keep the job also.  SO any info you guys have would be wonderful.

    I know I need to just take it a day at a time but, just trying to figure out some stuff in my head if possible.  Thanks, Debk:)

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  • cjh
    cjh Member Posts: 78
    edited October 2008

    Welcome Debk!

    I have been able to work part time during the AC  dose dense part of treatment. Taxol weekly should be intersting, but I heard it is easier for some than the AC. I would be concerned mainly about your exposure to germs ect in a family med clinic. My blood counts are actually staying high due to the neulast shot working. We are all so different though in our rsponse to these meds!

    The choice between the job and the trial... sure hope you can find a way to do both!!

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  • Keryl
    Keryl Member Posts: 230
    edited October 2008

    I love my job - or maybe just adicted to it -- BUT I am on this trial and have made it work so far.

    Do not think you cant work or at least ask to work part time. (modified work week) 

    I will have my 3rd A/C on Thursday. I am working part time, 3 days weekly M- W, but frankly, working full time in terms of getting the work done (some at night, some on weekends) You would definitely need certain days for treatment and recovery. I have my treatments on Thursdays, have Friday to recover and the weekend. I have even traveled across country a few times ad had no ill effects, didnt get sick, though every day at 3, I feel very tired and weary. 

    I dont go to Taxol until 11/21, but I hear the A/c is harder from side effects, but every person is different. I am on Neulasta also. I ache a bit, but it is not in anyway incapacity. I am planning on working through this and based on my experience so far, I think I can. Also, am lucky that people at work are very supportive. My boss is ok, actually kind of oblivious..   

    Good luck to you - but work has really helped me feel more normal and engaged.  I have kids and I think they like that I still can work. I would ask the dr. about the exposure and germs. keep your anti germ gel nearby etc. Your health needs to be first. Good luck. I dont know if I am getting Avastin, but I hope I am. I think the trial is a great thing. 

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited October 2008

    Deb,

    Welcome to the trial!  I appreciate you making the sacrifice for women now and those in the future.  

    I have been working during treatment (I'm a child psychologist).  I had a rough time with the A/C.  I had treatment on Thurs., then took off Fri - Tues. because I would so ill during that time.  I wasn't at my best when I did return but it was manageable.  The taxol has been better on my body and now I'm taking 1 1/2 days off - treatment on Thurs. and I come back to work on Fri. afternoon.  Seems to be working.  Of course everyone reacts differently so your capacity to work after treatment might be much different.

    Good luck,

    Jen 

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