Clinical Trial E5103

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  • carolynf
    carolynf Member Posts: 262
    edited February 2009

    Good morning all,

    I also have had the running eyes which seemed to go on forever but have to say that these past few weeks I think its pretty much gone!  So maybe the magic number is 3 months?  Thanks for the info on the rash Keryl. Bettylou has had the same thing going on.  I was lucky that I never had that SE.  When I saw my onc the other day I had to get a clarification on how long I had to see him every 3 months and he said for 2yrs.  One thing I didn't ask was when the start time was.  I suppose this was my 2nd visit and have my 3rd one sched for May.  So I am well on my way to the 1 yr mark of After therapy! 

    My husband is heading down to New Orleans for a conference on Saturday (V-Day). So we celebrated last night and went out to dinner w/the kids.  He then took me to a jewelry store and Finally bought me a wrap for my diamond!  What a difference it makes. It really changes the look of my diamond.  I think he feels that there's certain things that shouldn't wait.  Live for the day and not the future because we never know when that could change.

    Well, need to get back to work.  Enjoy the week!

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  • brena
    brena Member Posts: 458
    edited February 2009

    Hi ladies,

    Sorry to be gone so long have many distractions going on in my life, will mention a few but more interested in how everyone is doing. I am trying to catch up on all the posts and everyone's latest and greatest. I have popped in a few times to quickly read posts but mentally distracted. However, I sure do miss talking with you guys.

    Anyway, this may wind up being a book just to get us all caught up on the latest in my life and to answer some of your posts.

    Bettylou,

    Welcome and please forgive me as I am not usually removed from this post very long. I am glad to see your doing fairly well with your first treatment. I did develop a rash on both my hands and arms, up to my elbows, which did not itch but looked blotchy like hives. The rash started two weeks after the start of Taxol and since I received the placebo it was not Avastin causing the rash. However, Avastin is known to cause a rash as is Taxol so there is still a mystery of which drug or both will cause the rash. I tried every over the counter rash med and nothing helped, it eventually went away on its own about two months after completing Taxol. Keep trying because you might find one that works for you. My Onc had not seen this rash before with others using Avastin or Taxol so it may be the combination of two of the drugs. Hopefully the trial results will determine the root cause.

    I have reserved a room on the Carnival BC survivor cruise, I have asked another woman to share the room and she will let me know by the end of February if she can go. I have a guaranteed room so I will not know my room assignment until arrival on ship.

    Carolyn and Teresa please post your room numbers. Are you guys going down a day earlier or staying a day later after the cruise? It will be great to meet you gals!!! I hope others will be able to join us and make it all the much more fun.

    more to come,

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  • brena
    brena Member Posts: 458
    edited February 2009

    Teresa,

    How did you make out with your  sinus surgery? please define what was done and what is the best outcome you can expect from the surgery? Are you still scheduled for reconstruction on March 30th?

    wishing you lots of success

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  • brena
    brena Member Posts: 458
    edited February 2009

    Ladies,

    If you go to tnbcfoundation.org and find ladies who participated or are participating in this trial please invite them to join this forum, noticed one lady in this trial and I need to go back and invite her to join. The more the merrier.

    smile,

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  • brena
    brena Member Posts: 458
    edited February 2009

    Ladies,

    My eventfull few weeks goes like this: found a lump under my right arm, opposite my bc, went several weeks on antibiotics which did not reduce the lump, then ultrasound taken which identifies nothing there. I could feel and see the lump, so then I go to the surgeon who was on vacation for two weeks so then I have to wait. My family doc believed it was an enlarged muscle and after a visit to the surgeon he confirmed that is what it was. He said my reaction to the lump is normal and he wanted to see me back in three months, I asked for xmas and he laughed. Another "no appointment" unless I have something wrong...my new year resolution. My bloodwork showed my wbc count at 3.4 and red and platelet count were normal, vitamin D level was also high at 127 (normal 0-99.) which is not a bad thing I think. I have never ever had a low wbc not even during chemo or at diagnosis. I had blood work done in December at the Onc's so I called them to see what my wbc was to compare and it was 5.0 so mine did decline as I suspected.

    More drama, in Spain I had started a new symptom, rectal bleeding with a few other symptoms. I just put off discussing it since it had only occurred minimal times. No one can imagine blood from this portal.......right.......it is or it isn't! Finally told my family doc in January and he said time for a colonoscopy to make sure although probably just a hemorrhoid. Never had one in my life but I will settle for having just that. So I scheduled the test and did the horrible prep crap and had the colonoscopy today and good news all is well with evidence supporting an internal hemorrhoid and slightly inflamed veins. So I am good for 5 years unless warranted. I had blood work done prior to this procedure so I asked what my wbc count was and it was 3.8 (better) but my rbc was now low but hemoglobin was normal. Normal WBC range is 4 or greater. I get more bloodwork done for the Onc at the beginning of March so will wait and see how the numbers look. I will just try to stay away from people with colds and make sure I wash my hands more frequently. I had the flu shot in September so I would hope I would be less likely to get the flu. I do feel fine other than being tired, yes tired. I am still exercising by riding my bike 10+ miles daily, except today.

    I purchased a new car in December and got my first speeding ticket in my 30 years of driving.

    Last Monday my employer notified us of layoffs this week, 20% across the board. I am in Management and those positions will also be reduced, so the anxiety increases. The layoffs begun today and I will not know until tomorrow if I still have a job, since I was out today for my portal investigation.

    My BC breast has swollen again this time further up on the chest, kind of solid. Definitely can see the difference between breasts. For approximately 6 weeks the breast was doing great, reduced swelling and pain. Now more swelling in a different location with minor discomfort, cannot lay on it and pain on a scale of 0-10 is about 3. I have only one physical therapist in the area that is experienced in Lymphedema and she does not participate with my insurance so I would have out of pocket expense. The reason I have put off going and not interested of going to a therapist with minimal or no lymphedema experience. If it still bothers me when I go to the Onc will show him and get his thought since I have no plans to return to the rad/onc.

    Upside, my dad's health is stable and has another birthday next week. We didn't think he would make it this far, but hoping for many more.

    I am booked on the BC cruise and will meet some of you wonderful ladies. I dont' know if I can wait until this cruise to get warmth, may need to book something sooner. Will depend on my employment.

    talk more after I catch up with prior posts,

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  • brena
    brena Member Posts: 458
    edited February 2009

    Deb55,

    Your trial entry number is 246, nice to see the number jump much higher. More ladies are participating in this trial, saw a few on the tnbcfoundation.org website. How was your trip to Florida?

    wished you brought some of that sunshine back with you,

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  • brena
    brena Member Posts: 458
    edited February 2009

    Ladies,

    One more update on my balance test result, which was taken because of my symptoms of dizziness, headache..see past complaints. Anyway, my test result showed "mildly abnormal" wasn't sure whether to be offended or relieved with the result. My options were 1. to take more tests to further define, 2. continue to take the antivert meds, 3. do nothing. I elected #3. Shortly after my visit with the Neurologist I made a new discovery with my dizzy symptom, I recently had a bad episode with feeling dizzy (while at home) to the point I had to sit down. Someone in my house had the notion to take my blood pressure, I looked pale. Guess what, my blood pressure had dropped to 89/52, I sat down for about 20 minutes and felt much better. The dizzy feeling always comes on slow enough that I can prepare for its affect if it should get as bad as previously noted. I have not brought this to my docs attention, maybe next time. So now I don't know which is the cause; dizziness to low blood pressure or low blood pressure causing the dizziness. The erratic muscle spasms still continue, but not much of the other symptoms. Not returning to this Neurologist, she insinuated the chemo was causing my symptoms and suggested I give up my daily cup of coffee (this is where she lost me.)

    from the laptop of a hypochondriac, 

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  • carolynf
    carolynf Member Posts: 262
    edited February 2009

    Brena,

    Glad to see you back up and running!  Sounds like you've had one heck of a month or so.  I guess i am lucky to not have too many episodes from the chemo.  Nose seems to be getting better.  I also had a little bout with what I thought was a lump under my arm pit (on opposite side of bc).  My onc. checked it out very carefully at my visit on Monday and found nothing.  He told me to call him asap if I have another "episode" where I felt a lump.  I am all booked on the ship and flight for the BC cruise.  My mom is rooming w/me.  She thought it would do me good to get away from it all (and her too!).  We are flying in the day before and staying an extra day on the back end.  I think my husband will be able to handle the kids w/out mom or me there.  I still need to book the room.  I will do that later tonight.  I am glad your dad is doing good.  In regards to your lymphedema...I see a PT who is not certified but has taken a lot of classes for alternative healing and does a good job on my arm.  She will start on my port area (still tender) soon to help break up the scaring underneath.  At that time she will work on my SNB area to.  Onc. said he was amazed at how my radiated breast was normal.  He usually sees a difference in texture/feel from the radiation... Well, I am heading to PT where she does an awesome job of pressure pts on my back and shoulders.  BTW I have not gotten a room number yet but will PM you when I do.  I will also send my cell number so at least we can meet at the bar or something!

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  • debk55
    debk55 Member Posts: 108
    edited February 2009

    Hi All,

    Sorry I have not been posting. My trip to florida was great but, COLD and left me very tired. Our septic system backed up into the yard 2 days before we left for florida and I have had to take the laundry to my mother in laws. So, I have been just trying to get some rest and get to house back to normal after vacation. Florida had it's coldest day on record when we were down there. Burrrrrr!!!  The high was 64 one one day most of the days were in the 50's but, it beat to 10 or 20 degrees michigan has had all winter. It was sunny and it was nice to be away with friends we shared a condo with 2 other couples.

    I have had worse sinus issues the past few weeks and I do get a hoarse vioce about a week after I get the avastin/placebo infusion, it goes away in 5-6 days. I just say I am trying to sound like Rachel Ray.  I found with the sinuses if I make sure to drink aleast 64 oz of fliuids my sinues do not get as plugged up. But, I always have clots and some blood in the AM.

    I also have a rash across my nose and cheeks the day after taxol then it goes away. I mostly have body and bone aches but, I take 1/2 vicodin and that helps alot sometimes I have to take another 1/2 tab only 2-3 times have I had to do that.

    I am going to try to go back to work parttime next week for 3-4 hours a day. My manager has created a new position for me that will be doing some research in the patients charts and sending info to insurance companies for compliance issues so it will be mostly a desk job and I hope I can do that as money is pretty tight with me not working for 4 months. And I find that I feel about the same sitting a reading or trying to do a few things around the house.

    Brena thanks for keeping in touch with us and I am sorry about all your health issues:)  You always cheer me up hust reading your posts though. I think it is you were one that was on here when I first started and I just wanted to let you know how much you mean to us. 

    Thanks to all who keep posting it is wonderful to be able come here and have you all who know what we are all going thru. I wish I could be there with you guys on that cruise you all have fun and I will be there in spirit.   Deb:)

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  • brena
    brena Member Posts: 458
    edited February 2009

    Ladies,

    Well I made the cut and am still employed, am glad but not for those who were let go. My daughter is 26 and has informed me she and her doc identified a lump in her right breast. I am sure and hope it is nothing but that emotional roller coaster is starting to turn. I remember my Gyno and Surgeon telling me my lump didn't feel like any concern and we know they were both wrong. I also recently got a copy of my BC diagnosis ultrasound report, never saw it before. Anyway, the report was a textbook memo with the uneven edges, solid mass etc. So I am not sure if the Gyno and Surgeon don't know what they were talking about or they think their words will prevent a woman from becoming alarmed.

    Am working on gathering tax stuff, finishing installing a new floor in my office and some other little stuff. Keeping busy but will keep in touch more frequently.

     take care,

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited February 2009

    Hi Ladies,

    I know I haven't posted in a while.  So where do I start.  I have sinus surgery a little over 2 weeks ago.  The doctor while he was in there repaired a deviated septum.  That was a pain because they then put splints in that much comeout.  A PA removed them it took her an hour, I was bleeding everywhere and cried through the whole thing. Of course I should mention that this moron didn;t realize that those stents were stitched in and thats why she couldn get them .  Needless to say it was horrible.  Im still sore and so far I dont see a benefit from it. But we'll see. 

    Im back at work full time.  Its so hard sometimes have to go take a nap in my car during lunch hour. 

    I am still scheduled for surgery in March.  I cant wait. 

    Layoffs are really bad here in Wichita KS because of the aircraft industry, Cessna, Boeing, Learjet.  Its been very bad for us. 

    Brena how close are you to NYC?  How about you Carolyn?

    Well I should actually go to sleep now

    Teresa

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  • carolynf
    carolynf Member Posts: 262
    edited February 2009

    Teresa,

     That sounds way tooo painful for me.  I am not "dripping" like before.  I am now just blowing to get stuff out of my nose.  I am still using the saline spray.  I am hoping w/spring my noseway will be getting back to the norm (didn't I say this before).  I just picked up a 5yr old Irish Jack Russell.  She is cute but is trying to run the house from my black Lab Lexi (1yr old).  I hope w/in the week they are best friends...I am about 5 hours from NYC by car and would believe Brena is MUCH closer.  Well, i need to go to the store before my moms stops in to see my latest edition.

    C

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  • brena
    brena Member Posts: 458
    edited February 2009

    Teresa,

    I am about two hours from NYC. Are you going to Miami a day sooner than the cruise or staying a day later? Hope your sinuses are still healing.

    take care

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  • S3K5
    S3K5 Member Posts: 606
    edited February 2009

    Hi Ladies,

    I have been reading posts whenever I can, but don't log in much. I returned to work full time since Jan 09 and it has been hectic. My sinus problem is still there but I think it is getting better. I have a deviated septum too, but the ENT didn't think it was related to my sinus problems. In his words, "There is nothing to do - just wait it out". It has been 4 months since chemo and 5 months since I stopped Avastin. I don't know how long it will take to heal.

    Brena, sorry to hear about your health problems. I hope you have a good vacation and de-stress yourself. I hope your daughter is okay - will be praying for her good health. I have a 25 yr old daughter too - so I know the stress.

    I am having swelling and pain on my surgery side, and my right arm hurts more at the end of the day. I had been to the Lymphedema PT and she has shown me ways to massage. It helps a little but not a whole lot. I wear the sleeve during day time, which helps with the swelling.

    My follow-up mammo is coming up next month. I don't want to go to any more doctors!!

    Teresa, I hope your sinus heals fast - it sounds like you have gone thru a lot. Saline spray is the only rinse I use. There is also a sterile antibiotic cream (Bactoban, or something like that) that can be used inside the nose, so there is no infection. My ENT had prescribed this for me. Are you using this?

    Hope everyone is doing well.

    Desi.

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  • carolynf
    carolynf Member Posts: 262
    edited February 2009

    Good morning all,

    Sounds like most of us are dealing w/sinuis problems. Hopefully with the spring we will be able to smell the flowers w/out runny noses.  Anyone doing the 3 day avon walk in Boston?? I am attending a meeting tonight which will help me decide to either do it or not.  My mind says do it and my body is like....help me!  I think I need to do this for me and all of the other women/girls who we can hopefully prevent this from happening.  My office has moved and is now 1hr 20 min commute vs 1/2hr.  I work from home 3 days a week and go to the office 2x week (sometimes only 1x depending on my appts).  I enjoy the working from home bit but do not like dealing w/the drive on the other days.  I should be thankful that I have a job.  I just got an email and our interest rate just went down to 4%!! I have never in my 17yrs seen it drop like it has.  Then again, my 401k is also dropping! I probably won't be retiring w/in the next 10yrs if this keeps up.  Well, got to get back to work.  Sounds like everyone is doing well.

    C

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  • Keryl
    Keryl Member Posts: 230
    edited February 2009

    Hi all. Yes, sinus issues continue here.  Mostly the clotting at night & I wake up with it in a.m. -- it is so irritating. The actual bright nosebleed has moved on - I still have some headaches that come and go. They are distinct - behind the eyes. Also, during chemo and avastin I never had a bad taste in my mouth, thought some people on this board talked about it - but since I stopped chemo (only 2 weeks ago) I do ! It is a strange taste, ongoing and a very few very flavorful things can touch it -- spicy, salty seems to work. why now? do you think it is from sinuses (though not anything like a reg. sinus drip) or chemo build up or what? very strange.  It tastes very chemical.

    I had my first rad visit today. I am rolling.....i

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  • carolynf
    carolynf Member Posts: 262
    edited February 2009

    Evening all,

    I have to agree w/you Keryl on the pressure headaches.  I get them still.  I really think it has something to do w/the sinui's being so messed up.  I did not have the chemical taste after finishing chemo but I can say that I have always loved hot and spicy food and now have a harder time with it.  Not all the time but I've never had this sensitivity like i do now.  Congrats on your first rad.  You will be done before you know it.

    C

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  • carolynf
    carolynf Member Posts: 262
    edited February 2009

    Bettylou,

    How are you doing? Haven't heard from you lately.  Hope all is well and you are probably resting which is a good thing.  When you feel up to it drop a line to let us know how you are doing.

    C 

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited February 2009

    Hi all:

    I finished the last of the AC part of the trial protocol, and will start the Taxol this Thurs. My onc. tells me that the Taxol should be easier. LOTS of questions:

    What's the best day to get the Taxol txs. I need to go back to work part time, and was thinking of doing treatments on Friday and taking Monday off. Did you all have a days that were better than worse? How about your WBC and RBC? My WBC tanked at 1 this week (and I'm doing Neupogen shots). Did any of you do Neupogen shots during Taxol? Also, how much time between Taxol and rads (if you had rads)?

    I've had sinus issues even before chemo, but I get a salty taste in my mouth now. Also have some ringing in my ear that was there before my dx in sept. but seems worse.

    Thanks for your input!!

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  • Keryl
    Keryl Member Posts: 230
    edited February 2009

    I had taxol on thursdays, had friday off  and back to work on Monday; same difference as what you propose however I found missing friday less stressful than missing Mondays. 

    My WBC were ok during taxol and more sensitive during A/C. (I had the neulasta during A/C only; none during taxol) My RBC were a bit of an issue but no one did anything - just commented.

    I started rads exactly two weeks after my last taxol. I have only had 2 rad sessions - so far, so good; though I am exhausted tonight and going to bed soon. it is only 8:30 !!

    For those of you that finished avastin, I read online that avastin half life is 20 - 50 days, so it is in your system quite awhile after you have your last infusion.

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited February 2009

    Keryl:

    Thanks for the feedback. Helps me feel better about the next step!

    kim

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  • carolynf
    carolynf Member Posts: 262
    edited February 2009

    I had treatments on Mondays and was ready for the weekend by Friday.  Worked during chemo and rads.  I started rads 1 month after I ended taxol.  My WBC was never low enough that I had to do any shots other than the Neulasta.  Not sure if you are doing taxol every week or every other week. I did it every week.  Taxol was much easier than the A/C at least that's my view.  Not sure if my onc had me start 1 month later due to avastin?  I can tell you that it was great not to have rads right after finishing taxol though.  Rads just made me wicked tired. 

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  • brena
    brena Member Posts: 458
    edited February 2009

    Kim,

    I had my taxol on Friday, took that day and monday off. Worked tuesday through thursday. The Taxol was definately easier than the AC, but did need much rest although never slept.........insomnia. Try to include the weekend for the additional rest and still use caution around people that are sick.

    Do you know your unblind date?

    take care

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  • brena
    brena Member Posts: 458
    edited February 2009

    Desi,

    Sorry to hear about your pain in your arm, how often are you going to therapy? has it helped at all? I may seek out some professional help with my breast swelling and pain, it had gone away for about 6 weeks and returned about two weeks ago. Swelling is in the entire breast and above it on the chest wall. Someday all this crap will go away.............right? I also am trying to avoid more doctor visits along with their many tests, my new year resolution. How often are you scheduled for mammo's? What follow-up tests has your Onc recommended?

    take care,

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  • brena
    brena Member Posts: 458
    edited February 2009

    Hi ladies,

    Great news, I think I am ready for my FIRST true haircut within the next couple of days. My nails are still whitish, dead nail, but near grown out. The same with the big toe nails, dead nails are nearly grown out.

    Feel like I am catching a cold, people at work are sick. I did get my flu shot so I am hoping it holds up and there are not new strands of the virus.

    My daughter goes for her ultrasound on Monday she said she doesn't want me to go with her because she doesn't want me to see her boob. Girls!!! I have decided to make a table that reflects all my tests since dx so I can keep track. My Onc seems to prefer testing only if symptoms appear..I have been reading some good theories on BC woman taking bisphosphonate drug after completing chemo. I will ask my Onc if my taking Clodronate could be contributing to my vitamin level D being high.

    I am hoping to finish installing my new floor in my office, one of those locking laminate floors. I would like to do the kitchen and living room floors. First to finish the office and then need to paint all walls updastairs and that is a big enough task.

    Missing my outdoor bike ride.

    it will soon be warmer weather,

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  • debk55
    debk55 Member Posts: 108
    edited February 2009

    Hi All,

    Well I went back to work part time this past week and worked 18 hours on tues wed & thrus. I have chemo on mondays and by friday I was really tired. But, it felt good to be productive again.  The manager at work has created a new job for me to research in charts for info insurance companies want to make sure the clients have had like mammos and pap tests and b/p check if they are on b/p meds. I find that info and fax it to the insurance companies so it is less stenuous than being on my feet taking care of patients all day and I am not exposed to all the sick people since it is a family pratice drs office.  

    I found out my unlind date it is 3-9-09.  I will be sure to keep you all posted when I find out.

    Have any of you noticed on the taxol the body & bones aches get worse the more taxol infusions you had.  I seem to be having my bady aches so I am wondering if the is accumalative effect. It is also really cold and alot of storm fronts have been going thru michigan & I have been trying to be more active so I don't know which it is or if all are affecting me.  Just gad after tomorrow I only  have 4 more taxols. WOO HOO there really is a light at the end of this dark tunnel!!.

    Talk to you all later, Blessing to you all, Deb :) 

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited February 2009

    Carolyn, Brena and Deb--thanks for advise on the work schedule. I wish I had tried to go in during AC, but my med. people really discouraged me as I teach in 1st, 2nd, and 3rd grade classrooms. I'm still anxious about getting sick.

    Brena--I don't know my unblind date. My trial coord. vistied on my last AC and said she figured it out to the day (?), so I can find out. At the time I really didn't care--just seems like a long slog. She really encourages me to stay with it. I start the first Taxol this Thurs, so I figure it's 7 weeks from then? And, wishing your daughter a clear ultrasound.

    kim

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  • brena
    brena Member Posts: 458
    edited February 2009

    Gals,

    My daughter had a clear ultrasound, I hope she is telling me the truth. She is one who would not tell me bad news so I would not worry. I will take it as good news and hope she never ever has to go through the worry again.

    My office floor is finished and now am working on returning all the stuff minus the junk. Looking good!

    more soon,

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  • brena
    brena Member Posts: 458
    edited February 2009

    Deb55,

    Glad your able to return to work it is good to get back into some routine, keeps your mind busy. The taxol will make your body feel like it has been runover, the only way I could tolerate the ache is to excercise and excerise everyday. When I missed a day I would ache like there was no tomorrow, not sure how anyone could stand the pain as i ached like I was 90 years old. The Neulasta shot also made my body ache terrible and only relief was again excercise. Do keep an eye on your nails as I lost several to Taxol, pretty crappy stuff. Not everyone has the same side effects so hoping your the exception.

    take care and stay healthy,

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  • brena
    brena Member Posts: 458
    edited February 2009

    Kim,

    Thanks for your kind thoughts about my daughter, keep us posted on your SE if any from Taxol.

    Do you have any children?

    Keep warm,

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