Clinical Trial E5103

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  • Janet0527
    Janet0527 Member Posts: 141
    edited March 2009

    Lots of good info here, ladies - thanks for posting your experiences.  I have to make a final decision by Tuesday and I'm leaning toward participating in the trial, and agreeing to do the dose dense schedule.  For Carolyn and Deb and anyone else on that schedule - are you able to function pretty much normally, meaning are you working through treatments, do you do any type of exercise that you've been able to continue with, etc.?  I dance (ballroom and salsa) and am really hoping I'm not so exhausted and fraught with side effects that I have to stop dancing for a long amount of time.  I'm planning/hoping to continue practicing and to participate in some events that fall smack in the middle of all of this.  Am I overestimating my ability to live a normal life through all of this?

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  • Keryl
    Keryl Member Posts: 230
    edited March 2009

    I was on dose dense and I worked most of the time. I worked three days a week, but that was a joke, as I really worked everyday -- on the computer or phone at least. I was able to exercise several days weekly and if I didnt - it was because of other priorities or other procrastination -  If you are pretty strong and healthy otherwise, you will be fine., but do pace yourself and listen to your body signals. If I had it to do over again, I would have taken more down time -- I think it catches up with you. A/C was fine for me; I actually was one of those that had more exhaustion during Taxol. I am very glad I participated though, and I would never change that. Take care.

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  • brena
    brena Member Posts: 458
    edited March 2009

    Hi everyone,

    Catching up on posts and glad to see everyone is doing ok, thanks for stopping in and letting us know how your doing.

    Janet0527,

    I hope you do decide to do the trial, it is definitely worth your extra time and the necessary follow-up. I did do the dd and exercised on a daily basis, I did the daily 1-3 mile walk and there were many times I had pushed myself to complete the walk. I alternated with riding my bicycle and did enjoy the time alone with mother nature. I worked 3 of 5 days on a full time basis during chemo and took off from work for my 6 week radiation session.

    You should listen to your body it will tell you what you can endure and when to rest, and yes I would think your "normal life" as you have known it will change for a short while.

    How long have you been dancing? sounds like much fun and great exercises! Do you have a support system to help get you through this roller coaster?

    I hope all our prior posts answered some of your questions, if you have any additional ones please just ask.

    welcome,

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  • brena
    brena Member Posts: 458
    edited March 2009

    NancyJane,

    Sorry to hear about your toes and boy can I relate to that.........damn TAXOL! I did see your number and you should be number 1089 entered into the trial. As woman are unblinded and they ask for their sequence number I can record it and try to make some sense of them. Unfortunately, not all the woman on this thread have been given their number.  Thank you for asking and sharing with us, I will continue to record the numbers. It does take some time for the toes and fingers to heal so be patient and kind to your body.

    your making a difference,

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  • brena
    brena Member Posts: 458
    edited March 2009

    Carolyn and Teresa,

    I have booked my flight into Miami for the 15th, don't have much faith in the airline these days so I decided to arrive a day early. I wont' arrive until around 8pm so won't have much of an evening, but that is ok.I will be staying at the Embassy Suite, Shelly said she has another woman who wants to share the hotel room. I will contact Shelly tomorrow to finalize. So far I have a room on the cruise to myself but would like to find someone to share the room/expense if possible. I am getting so excited about feeling some warm weather, getting away and meeting you ladies.

    I will be moving to dayshift starting March 23 to work in a different department for a few months, employer is tapping into some of my old skill sets. Work is really slow, so scary. I hope things pickup so I can return to my current responsibilities and 2nd shift hours.

    survival to those who can endure,

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  • brena
    brena Member Posts: 458
    edited March 2009

    Carolyn and Teresa,

    Did your Onc run tumor marker test (CA27.29) since your diagnosis? As I mentioned earlier my number was 11 even with the presence of Cancer so I believe this test would not be an indicator of recurrence or metastasis.  My Onc is requesting the CA 27.29, Magnesium and normal CBC test at my next check and I only realized it when I looked at the script upon arrival at home. Otherwise I would of asked him why bother because of my score of 11 with Cancer. Anyway, will do the blood test as he indicates and ask at next visit. I also will go for my mammo of my left breast as recommended by the radiologist.

    My last week visit with the Onc showed by WBC drop from 3.4 (Jan 29) to 3.1, he said the drop is normal reaction from chemo and rads. Although, my counts have been above normal prior to, during and after chemo and rads up until January. I dont' quite understand the result because all the other counts are normal. I havn't changed my eating habit, lots of veggies and good stuff....ok and the occasional chocolate snack. I am not sure if I am susceptible to colds, germs etc. while my count is low since it has been low for two months and I havn't gotten sick.

    How are your blood counts?

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  • brena
    brena Member Posts: 458
    edited March 2009

    Ladies,

    Have now had several sessions with my physical therapist and things are going well, she is working out the scar tissue and swelling. I am very happy with her work and she is definitely knowledgeable in her field of work. My sessions will probably run 2-3 times a week for several weeks until desired result is achieved. Definitely edema in the breast, arm is not affected thank goodness.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited March 2009

    Hi Everyone,

    Its been so long since Ive been on here.  I read every week but I had to step back. I had some major anxiety when treatment ended. I really thought I would bounce back fast and when that didn't happen I got scared and depressed.  I continued to have lots and lots of sinus issues.  I had sinus surgery 5 weeks ago. I have to say I think it did the job.  I hope none of you have to go that far but for me I think it was necessary.  I dont know if you ladies visit other areas of the boards but we went through a tough time with several losses of trip neg women that made it necessary for me to step back for a while to regain my focus and strength again. 

    I had my 3 month check up March 9 with my onc.  He said my lab looked boring lol.  I think thats the nicest thing Ive ever heard.  I was concerned that my CA 27.29 was 20 but they consider 0 to 35 I think normal so ok.  He told me Im in remission and to go live my life.  So thats what Im trying to do now.  I have decided to remove my other breast and have reconstruction.  Oh yea and get this dang port out of my chest. 

    Im sorry I haven't been very active but I think of all of you alot.  There are so many new people.  Its hard to believe that such a sort time ago it was just Brena, Carolyn and me. 

    Stay strong everyone.

    Teresa

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  • Janet0527
    Janet0527 Member Posts: 141
    edited March 2009

    Keryl & Brena - Thanks for the feedback.  I have made a final decision to do the trial and to go with the DD schedule.  My first treatment will be next Wednesday.  I've done really well so far from diagnosis through surgery in terms of attitude, feeling physically good, keeping up with normal work and social life, and approaching all of this very analytically, but the prospect of chemo is starting to catch up with me and all of a sudden it hit me - I have breast cancer.  I had lunch with a friend over the weekend who told me that I needed to stop worrying about how to arrange cancer around my schedule and focus instead on doing what I need to do, resting when I need to rest, and fitting in normal life if it fits, but not if it doesn't.  Ah, such wisdom.  I started to cry in my salad, sitting right there at Panera Bread, at the reality of it all.  I do still plan and hope to work full time and keep up with the dancing, but I realize that I just need to wait and see what happens.  I don't like it, and I'll fight it, but I realize it.  Brena, to answer your questions, I've been dancing about three and a half years and I can't explain how much I love it.  As for a support system, I do have some wonderful friends and my mom lives nearby.  Unfortunately I'm separated from my husband, so I live alone, but he's still in my life and will be there if I really need him.  I'm still working on sharing this news, something I've started doing a bit more now that I'm entering the chemo phase and it will be physically evident soon enough.

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  • cjw
    cjw Member Posts: 42
    edited March 2009

    All,

    I havent posted for a while, but do read frequently. I think I am one of the oldies as I started last june and finished in November, but am continuing on Arm D. I also had radiation, as I was in the "grey zone" and I figured why not.

    Janet0527, good luck--its not so bad. Do try and exercise as much as possible as I think it helps.It does hit you periodically that this really does suck.

    and Teresa, I know how you feel, i have been having anxiety as well (after handling it all pretty well til this point). I did visit the Integrative cancer center at my hospital and am going to try some acupuncture and other alternative techniques. Is anyone else experiencing "post traumatic stress disorder, fear of recurrence, etc)? What are you doing for it?

    A question for all--any runners out there? I finished radiation about 6 weeks ago and am starting to run again .I am having a hard time getting back to my previous strength. Does the avastin impact it? Has anyone found any info on breast cancer for athletes? I welcome all insight.

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  • moborn63
    moborn63 Member Posts: 70
    edited March 2009

    Hi all.

    I have just started the clinical trial. I was diagnosed in November  a week after my twin sister was diagnosed. I had a double Mastectomy in December. But then they had to get my hemoglobin count raised and a unknown series of ulcers under control before they could begin chemo or even see if I could be in the trial. Well I started the Trial just this week I get the Chemo every other week. So I do not know what to expect. but I have been reading this forum every since the trial was suggested to me. So i will keep you updated. I forgot to add my twin carries the mutant gene which means I most like do as well.

    Robin

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  • Janet0527
    Janet0527 Member Posts: 141
    edited March 2009

    I got an echocardiogram today and my left ventrical ejection fraction was measured as 58% - I've read that normal is 55-70%, 55-75%, or 60-70% in three different sources, and participation in the trial just requires that it be 50%.  I guess I was hoping for something like 65% or more, as if that would give me some room to spare or something, but that's probably the entirely wrong way to think about it.  I also now have a huge bruise the color of blueberry pie, thanks to getting my port, with a side helping of all-freakin-day-in-the-hospital because interventional radiology was running over two hours behind schedule.  *sigh*

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Janet,

    Just catching up on the thread.  I did do some walking at the beginning of treatment which was December.  Then it kinda went away due to WINTER.  I think if I lived in the south it might have been different.  When I had my military weekend (1x a month) I would go to the gym and workout.  I think I got more tired as time went on.  Rads knocked me after the 2nd week.  I worked throughout all my treatments.  Sometimes I would leave an hour early here and there.  I just listened the my body.  When I did Rads, I went to work and left an hour early to go to my appt.  I was coaching softball while going thru rads.  Sometimes I had to push myself to go but it was worth it.  I don't think my endurance has come back yet.  I am getting stronger but not sure of my lung capacity anymore. 

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Brena & Teresa,

    My onc has not disclosed this CA test.  I will have to ask next time (May) at my appt.  I have been walking here and there getting ready for the 3day in Boston.  I have almost met my donation minimum.  I thought it was going to be harder than it was but all I have done is email and it has worked!  I did a 6 mile walk on Sunday and my foot was a little sore.  I took Monday off and was going to walk yesterday but had PT (which I graduated fromSmile and then had the ol irish dinner w/Smithwicks and Guinness (hubby does G not I).  So I never got out to do my walk.  I hope to do 7ish today. 

    Teresa, I have been on the other threads and have seen some of our TN sisters who have not made it who were here at the beginning of my dx.  I have cried many tears reading, esp on Twink and AlaskaDeb.  It's very hard to read those but I have to.  They were inspirations that helped keep me going and I am sure they are in a better place w/out pain.  I just hate this disease so much.  Moving on to happier things.

    I am arriving in Miami at noonish and am staying at the Embassy Suites.  I haven't finished my registration on line because i have to get my moms info.  I am looking forward to this trip.  I have been doing alll the booking for the cruise while also planning my trip to Hawaii. I still need to book a room and car for that trip. (only need a hotel for 3 days...worse case I stay w/my cousin in Wainae).

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    cjw,

    I think the cumulation of chemo then rads takes a toll on your body.  My onc says it takes a month or 2 before the chemo gets out of your body.  Not sure of the rads.  As you can read above, I have not had the same energy as before.  I am working on it and it has gotten better but not where I am used to. Not sure if the menopause has something else to do w/it?  There is a thread about wt loss or wt training.  I have been on that thread.  Some good info on it.  But it seems we are not the same after doing the chemo/rads.  Maybe time will help get us there. 

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    moborn63,

    Welcome to the trial.  There's a lot of info here to absorb but I think it will help you see what other people have experienced going thru the trial. I am glad you decided to participate.  Hopefully we will all one day see a cure!  At least that's what I hope happens in my lifetime.

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  • brena
    brena Member Posts: 458
    edited March 2009

    Teresa,

    You touched my heart and I so wanted to give you one big hug, my thoughts on the passing of our TN sisters and what they had given cannot be put into words. I have read their threads and did not realize they were so ill, I could not bring myself to read beyond their passing. I wanted to cry so I walked away, to much reality for me. I feel the same as you that i need to stay away from the boards so that I do not get obsoarbed into the Cancer thing. I do like the knowledge that I can get from this site and the woman that are so willing to reach out and touch another. The best part of the threads are the wonderful-courageous woman on here and that is the only reason I continue to return.

    Look forward to meeting you and Carolyn-I will send you both a pm with my full name and cell phone number. I am also staying at the Embassy Suite but do not know my room number, once determined I will let you both know. Carolyn, maybe we can meet in the hotel for coffee & cake the night of arrival?

     take care,

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited March 2009

    Carolyn and Brena,

    Are you both going home the day the ship docks or the next day?

    Teresa

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Hi Teresa & Brena,

    Brena, I will also PM you my cell number/full name so we can meet the night before. Teresa, I am also staying an xtra night when the ship docks.  It is a hotel at the airport.  I will have to look it up. Can't remember the name of it.  I wanted to soak up a little more sun and not rush back to winter!

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  • brena
    brena Member Posts: 458
    edited March 2009

    Teresa and Carolyn,

    I will be going home the day the ship docks. I will be working in the flower beds this weekend, got brand new red much and it will look so nice. I have been wanting to do it for a while and am just making it happen. The simple things in lifeWink

    talk soon,

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  • brena
    brena Member Posts: 458
    edited March 2009

    Janet0527,

    Welcome to our thread and am very happy to meet you under the circumstances that bring you here. You are correct the MUGA has to be at least 50% to enter the trial and we did have one woman with less and she could not enter and also had to see a heart cardiologist. My MUGA scores were as follows: 58, 57, 58  then the big 62. I beieve the increase was due to my excerising during the chemo treatment. I was very happy to see my efforts had good results.I understand the higher the MUGA number the younger the person or more athletic (in shape.)

    The emotional rollercoaster is normal, crying at a drop of the hat etc. are all to be expected. We have been there we know it is not easy, stop in and see us for a cup of faith and understanidng. What type of dancing do you do?

    hope your day includes a smile,

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  • brena
    brena Member Posts: 458
    edited March 2009

    Robin,

    Am sorry to hear you and your sister have to go through this, are there other family members who have had cancer? Are you going to get tested for the BRCA gene? you probably should, not sure if it will change anything. Was you and you sister's BC discovered by a mammo or did you each find a lump?

    Do you have other family or friends for a support? You should find plenty of information at this site.

    may your cloudy day be filled with sunshine,

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  • brena
    brena Member Posts: 458
    edited March 2009

    Ladies,

    I have lost my mind, I am at work and have now realized I had put only one contact in my eye. It is a near sited contact so seeing this page is making me crazy. Write more when I get home or find some reading glasses.

    take care,

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  • debk55
    debk55 Member Posts: 108
    edited March 2009

    Hi All,

    I am off to my last taxol Monday WOO HOO!!!    

    My neuropathy is getting worse in my fingers and feet, my taste is getting worse also. I am going to talk to the onc monday about when they cut the dose down. I want to take all that I need but, I do not want permanet damage.  I guess that is the fine line of how much taxol to give.

    If you had the neuropathy when did it start to go away and when did your taste come back??????

    I am SOOOO tired of food tasting like nothing and having to eat anyway.  Sorry for whining but, I guess I am just getting tired of it all.  I was feeling better and just this past couple weeks started to be more tired and my taste of foods getting worse the onc said it was the taxol bluiding up and in 4-6 wks I would not be asa tired. But the Chemo nurse said the neuropathy could take 6-12 months !!!!!!   Just wondered if that was what happened to you guys.  I know I have not had it too bad, I quess just having a bad day or two.

    I have been able to keep my spirits up pretty good thanks to you all. I do not post much but I am here every day or two for info and inspiration.  Thank you all.   To SE days and blessing to you all, Deb:) 

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited March 2009

    Congrats Deb on being almost finished.  You should start getting your taste back pretty quickly I think I noticed it getting better every week.  You know what didn't get better for me?  At least not yet.  Spicy foods.  I can't tolerate them at all.  I have always been sensitive to hot food but now even things I thought weren't too hot, are for me now.  Weird.

    I never had hardly any neuropathy at all so I can't really help you with that.  Sorry

    Teresa

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  • S3K5
    S3K5 Member Posts: 606
    edited March 2009

    Hi Ladies,

    Deb, congrats on finishing the Chemo treatments! You don't have to get radiation, correct? I finished Chemo in Oct 08 and radiation on Dec 30,2008. My port was taken out on Dec 31,2008. I too had neuropathy due to Taxol and sinus problems with Avastin (I was in Arm B of the trial). After about 4 months, my neuropathy is getting better (it is worse in the mornings) - I make sure to keep my hands and toes warm. Keeping the blood circulation going, is the best way to treat neuropathy. Again, everyone is different. I think 3-6 moths is a good range. My sinus is also getting better. I can breathe now!

    About the taste buds, I started tasting food after about 6 weeks. As Teresa said, I too am still very sensitive to spicy food - I can't tolerate it at all. I had some acid reflux due to chemo - so last week I went to the GI doctor who did an endoscopy and colonoscopy. Everything was normal. He said that in a few months, the GI lining should heal. I take Protonix for acid reflux.

    Brena, what did you do for the breast pain after radiation? I seem to be in constant pain - my arm gets heavy after a full day at work. I wear the sleeve but the swelling seems to be more in the thoracic area (under the arm/breast on the surgery side). Anyone has tips to manage this? I went thru six weeks of lymphedema massage - it helped my arm but not the breast.

    Take care everyone! Happy spring!

    Desi.

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited March 2009

    Hi all: I did Taxol #4 on Friday. I've had sinus issues, but they started with a cold a couple of weeks ago. It's getting better, and I've avoided the anitbiotics. This might be TMI--but when I blow my nose in the am it's bloody with yellow "snot". The yellow goes away through the day, but it's still bloody. I've been using saline spray. Is this similar toyour sinus problems?

     So far I don't have taste problems--actually am hungry more than during ac and have gained weight.

     I had a subst. onc on Taxol #3 and he looked at my chart and asked if I could chose to continue Avastin if I"m Arm A or B. I thought that was a strange ? and it got me worried like I could really use it.

    Congrats to Deb on finishing and have fun on the cruise, ladies!

    kim

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited March 2009

    Kim, I am having the same type issues with my sinuses.  I haven't been using any spray, but definitely have the bloody issue.  

    I still don't have much of an appetite.  I am sure I have lost more weight.   Nothing really tastes good and I have this horrible feeling in my mouth all the time like after you take a drink of something really hot and it burns your mouth.  It is really getting to me. 

    I wouldn't worry about the question from the subst. onc.   Not sure why he would ask a question like that, but don't think is means anything.   Since they don't even know if the Avastin has any affect, wouldn't make sense that he thinks you need it.   Maybe he was just curious.   HMMM!

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  • S3K5
    S3K5 Member Posts: 606
    edited March 2009

    Kim, I was asked the same question by my Onc too - doesn't mean a thing, since it is double blind study. I told her that if I was in arm B or C, it wouldn't matter since I had enough of it!! (I was in arm B).

    Brendafromflorida, sorry to note that you are having such a tough time - but it will pass. I went thru the same SEs - my doc ordered a cocktail to use as mouth wash - a blend of maalox, benedryl and some numbing medicine. You can get it by prescription only. It helped me eat some food (bland toast, crackers, etc). I too lost about 20 lbs during treatment (I didn't mind that at all..!!) mostly because of nausea and tongue problem. For low counts, I was told to eat some protein rich foods (it definitely helps with energy level). I got a neulasta shot after every AC. This can cause body pain, bone pain. For that I was given Percocet and advilpm. Hope you feel better.

    Hope this is helpful. Take it easy.

    Desi.

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Evening ladies,

    I was just catching up on all the posts.  I just realized that a lot of us now have a very sensitive taste!  I thought it was just me.  I have always loved hot and spicy salsa, v8 etc.  I do not buy hot salsa anymore.  I can still do wasabi peas and chinese mustard...I think i refuse to give them up!   

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