Clinical Trial E5103

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  • brena
    brena Member Posts: 458
    edited July 2009

    Ladies,

    Happy 4th of July & very happy to see no one posted and hope that means everyone enjoyed the day with their loved onesCool. They are one reason we go through this crappppppppp.

    lots of sunshine, 

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  • brena
    brena Member Posts: 458
    edited July 2009

    Helen,

    Glad to c ur on the home stretch and making the best of what ur being dealt. Have u been given an unblind date? I was in the placebo and had mild nose bleeds, an indicator but not always truthful.

    keep warm,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Theresa,

    When will u b finished ur fills? How was the concert? I am totally jealous. Any plans on coming to the east coast this year? How frequent r ur Onc visits?

    Wink

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  • brena
    brena Member Posts: 458
    edited July 2009

    Moborn63,

    Havn't heard from u in awhile, how is ur wrist & hand? Did u get an unblind date? Please check in with us?

    take care,

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  • brena
    brena Member Posts: 458
    edited July 2009

    foobs,

    Yes the SWOG trial is the bisphosphonate trial, highly recommend woman to talk with their Onc about joining. There is a risk but also great benefit.

    My Taxol experience was not the best, I lost toe and fingernails but the rest of me did pretty good. Dark nailbeds and infection not a good sign but my worst SE.

    stay healthy, 

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  • brena
    brena Member Posts: 458
    edited July 2009

    Theresa,

    I am registered for the 2010 BC cruise, hoping more woman from this post will also join us. I cannot figure out how to post pictures on this site so I could show you some from last cruise, I will try again later when I have more patience.

    smiles,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Ladies,

    Odd thing happened to me on June 26th and thought I would share my story with you. I was riding my bike outside of my town and approached a lake with about a dozen geese near the road, I was starting to go around them when my cell phone began to ring, I reached for the phone out of my bag and the geese got scared and started swarming my bike out of fright. Down on the ground I went with the bike, cell phone across the road in 3 pieces. I was glad to be awake and started to take inventory of what hurt and what couldn't move. No vehicles going by to help me, go figure. Pulled myself up with now several bruises, scrapes with road tar and blood mixed. My left elbow was 3 times its size and suspected it to be broken. My challenge was to get home, not safe to ride home. Called but no-one home so flagged down a man in a truck who was willing to take me home. Drove myself to ER, sat for 4 hrs and multiple xrays to be told nothing broken but they wrapped my right wrist potential bone shift....left elbow hurt like hell! Four days later I go to my family doc and he said all new xrays which showed fractured left elbow and a bone protrusion on right wrist, no clear view due to wrist splint. I should lite like a xmas tree from all the radiation! See ortho surgeon and he said they don't cast elbows because it causes more problems just keep doing what I have been doing...$25.....thank you and see you in 2 weeks. Gotta love the medical profession. So I stayed home from work last week but will try to return tomorrow. I have function of right hand but still cannot put my left elbow in a sling due to pain...walking around holding it up. First bone I have ever broken.

    So when people ask how it happened I tell them I was taken DOWN and OUT by geese, and by the way none of them were injured at least none were on the ground when I got up. So for the next several weeks I walk. 

    one hand typist,

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  • Gramof3
    Gramof3 Member Posts: 301
    edited July 2009

    Brena,   Good Grief!  What a scare...hope your elbow mends quickly.  I should be unblinded July 28.  Hope I've been gettning Avastin, but don't really  think I have.  Oh well, I plan on signing up for the Zometa trial, if it's not too late to register.  Hope you have a good week ahead.  Helen

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  • TexasRose
    TexasRose Member Posts: 740
    edited July 2009

    Kari- I have noticed that the skin on my fingers and palms is beginning to peel. I've tried to keep lotion on it, but it doesn't help much.

    Brena- What a scary experience! Glad you are ok although banged up.

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  • brena
    brena Member Posts: 458
    edited July 2009

    Helen,

    Thanks for the good thoughts and the bird, how do you paste it? I cannot even get a picture to paste. I am glad you r going to join the bisphosphonate trial, let us know your unblinding result.

    take care,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Ladies,

    I thought of an upside that resulted from my accident. I don't have to go to my 6 month mammo because I cannot raise my left hand or elbow which is on the BC side. I also didn't mention that I smashed my BC/left breast onto the road during the fall, still getting boobie rubs to help it mend!Wink 

    Chemo is definitely worse!!!

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    Brena,

    I am finished with my fills now, thank goodness.  I will have exchange surgery on August 31st.  I am going to be going to vegas on September 25th for 3 days, a large group of women from BC.org some reconstructed and some not are going .  It should be lots of fun.  Anyone wanting to go and needing a room to share my daughter and I have an extra bed!

    I am really looking forward to that cruise too Brena!

    So sorry to hear about your fall but Im glad your ok.

    Teresa

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  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited July 2009

    Brena, OMG!!!!!!  Thank goodness you weren't even more hurt! shoot!!

    All the trips sound fun!  We just got back from visiting up in Portland for the weekend.  So pretty up there and green!!  Then you drive back into California and its all brown again.  Fun visiting and partying with family.  Off today then back to work tomorrow.  Brena, hope you can return to work!

    TexasRose, my DH reminded me to tell you to try No Crack Super Hand Cream, got mine from Restoration Hardware at the mall.  I would use that (through the advice of one of the chemo nurses) and then put on white cotton gloves to keep the moisture in, found the gloves at Target, but had to ask the pharmacist for them, as they were kept behind the counter.  At the time last fall when my hand was peeling bad I would wear the glove at work and they called me Michael Jackson.  I just laughed!  It was awkward to type but I did it.  Wanted to keep the germs out!!!

    Ok, laundry to do!  Have a great day all!!

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  • S3K5
    S3K5 Member Posts: 606
    edited July 2009

    Brena,

    How are you? I hope your are healing well. What a freak accident! Thank god you are okay.

    Do you think the fracture was due to bone-thinning (with chemo,radiation and hormone therapy)?

    Do you have help at home? How are you managing? Keep us posted (when you can).

    Take care of yourself,

    Desi.

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  • foobs
    foobs Member Posts: 110
    edited July 2009

    I too got out this weekend.  Went caming, fly fishing with my hubby, son, sis, to the prettiest place in northern NM. Well,  Well, I watched and they waited on me hand and foot.  Great to be out of the house!

    Brena:  OUCH, I hope you recover quickly.  Like you needed that.  My hat (scarf......... wig's) off to ya for romping around on a bike though!  THANK YOU for sharing with us that chemo was still the worst for you!  That helps!

    Texas Rose:  Good luck tomorrow with #4 AC.  I really think the 3rd was my worst. Although symptoms set in sooner with #4, I got energy back quicker than #3.  And you'll be done with nasty AC!!  The skin on my hands is starting to peel also.  I was told that SE shouldn't happen with AC, not until Taxol.  They also insist low WBC don't make you feel tired.  HAAAA!!!!  I'm glad I have you ladies to talk to, at least you KNOW what's really happening and how it feels. 

    I'm off to Houston tomorrow to see if I can get a straight answer this time about a DIEP reconstruction.  I'm concerned that having mast, radiation first that the tissue will be damaged and hurt my chances for getting a tissue reconstruction.  Does anyone have any insight on this? (they don't want to do a mast with immediate DIEP because I had 8 positive nodes.

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  • Gramof3
    Gramof3 Member Posts: 301
    edited July 2009

    Brena,

    I won't even think of complaining when I go for my next mammo--smashing my boob on that glass plate cannot compair to smashing it on a road like you did!  As to the pics--leave BCO "open" and Google the topic you want along with "animated."  (I Googled "animated goose").  When you find a pic you like, right click, then click on "copy."  Go back to your BCO post, and click "paste."  It should work.  If it doesn't, let me know.  Mom2Two on the housework thread helped me with it. 

    My appointment today was so sllllllllooooow.  Labs at 8:30, NP at 9:30, then sat in waiting room from 9:50 until about 12:20 for the infusion.  There were just not enough chairs--chemo nurses said they had infused   63 patients by the time I got back there. 

    I am having so much trouble typing.   Catch you all later.  Helen

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  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited July 2009

    foobs, keep us posted on the diep recon.  I still have recon to look forward to.  Can't do anything while on the Avastin!!  Onc and rad onc said it won't be easy after the rads...hmmm

    Thinking of you all!  Have a great day! 

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  • moborn63
    moborn63 Member Posts: 70
    edited July 2009

    Hi Everyone. Well I get unblinded tomorrow. So I will let you know how it goes. I also have an appointment to see a lypdemia specilaist to see if I may be getting that. I will keep you update. Other than that everything is going good. Except my dog of 17 years died Sunday. He has a long a good life but I will miss him.

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  • moborn63
    moborn63 Member Posts: 70
    edited July 2009

    Found out today I was in Arm c

    Arm C:

    • AC (classic or DD) x 4 cycles along with
    • Bevacizumab q 14 or 21 days* x 4 cycles

    Followed by

    • Paclitaxel q week x 12 doses along with
    • Bevacizumab q 21 days x 4 cycles

    So I will continue on to ARM D

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  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited July 2009

    Ok Robin - welcome to the club that goes on!  How are you feeling these days?  How many more Taxol?  and then you have 10 more Avastin after the Taxol?  So sorry to hear about your dog...sigh but glad to hear he had a good life!  Keep us posted on the LE specialist appt. 

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  • debk55
    debk55 Member Posts: 108
    edited July 2009

    Congrats Robin,

    I too am in the Arm C continuing on for the 10 more Avastins.

    Also so sorry for your loss.  My husband has a Jack Russell that is 18 and every day we wonder and watch but he makes it though the day. I know it will be tough when he goes but he says the same thing, he had a great life.  And on the doggy heaven now.  Hugs to you

      ((((((((((((( Robin)))))))))))))))

    I don't post much but I read often, I am not much of a typist. I became a nurse because I did not like to type. That was in the 70's, now everybody needs to be able to type :)  I just am not very fast. And I have been having the taxol aches still so sitting at the computer is not too much fun so I just read.

    How are you feeling??  What did the lymphadema specialist have to say? 

    My onc said not many have the aches and pains after the taxol is stopped I hope you do not. I am 3 1/2 months out from the taxol and still need pain meds. 

    All you ladies help me alot when I am home and not feeling well.  I should post more. Thanks for being here.

    Brena I hope you are recuperating from your goose incident. I don't know how you ride your bike so much I have trouble trying to get my 30 minutes of walking in on my treadmill.  My blood counts did drop alot during chemo and are starting to come back up now.  You are an inspiration that life does get back to some what normal.   How did your Dr appt go with getting bioidential hormones??

    Kari you are a great inspiration also. Thanks again to all of you ladies for being here  :):)

    Deb:)

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  • brena
    brena Member Posts: 458
    edited July 2009

    Congratulations Robin and Deb on being in Arm C, way to go and am proud you ladies are going all the way. Keep popping in and letting us know how you are doing, I am sure more ladies will be joining the trial and may have questions that those who just finished treatment may be better at answering. Congratulations again, WAY TO GO!!!

    you did it,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Helen,

    Thanks for the suggestion on posting pictures, will give it a try. Do your visits usually take that long, I definitely would not have that much patience. I am sitting with an ice pack on the smashed boob, still swollen even with nightly rubs...my male friend helps with this therapy. I think the falling down on the boob has made matters worse, can't even go to a professional therapist because that is the side with the broken elbow and I can't lift or move the arm well, but getting better.

    take care lady,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Desi,

    Great question about the effects of chemo on the bone, I never gave it a thought until you mentioned it. I will need to ask the Ortho and Onc (when I return) what their professional thoughts are on the questions, although it doesn't always match what we think. I have never broken a bone even with the left field things I have done. I know I have Osteopenia based on a bone scan done June 08 and have been taking Clodronate since July 08 which should of helped with increasing my bone density. Now I am not sure what to think, kind of weird I would break something now. I will share their professional when I get it.

    take care,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Ladies,

    After much ado and persistance I have received the results of my saliva hormonal test, I will share the results with you over the weekend. Much information to share and a little hard with one hand so will give myself another day or two to increase the strength of my broken arm. I am loving this cool July weather, no AC yet.

    talk again soon,

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  • moborn63
    moborn63 Member Posts: 70
    edited July 2009

    Hi ladies thanks for the support. According to my clinical nurse I will continue with weekly treatments until March. I was under dose dense. I have not hd any major SE,  the results of my camera endocopy was negative so except for some very small ulcers I have not problems there. My doctor told me I would not need radiation. But then the paperwork he filled out said that I would. So I need to get some answers from him and whether I will or not.I did loose a toe nail a couple of days ago. But my hair is starting to grow back. LOL (gray yuck)' The lymphdema specilaist told me I had secondary lymphdema. Where everyone else told me to limit use of my arm. But she told me she wanted me to use this arm a much as possible.  so that I don't lose range of motion.  She will be ordering me a compression sleeve and I will begin to wear it once it coms in. I will be set up with weekly treatments including massage until the swelling is under control.

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  • moborn63
    moborn63 Member Posts: 70
    edited July 2009

    oh to make my day a story in itself. On my way home from chemo. (I take treatments 40 miles away both ways) My car breaks down on the side of the highway, Luckly two guys who were in a uhaul moving from columbia to Moberly was right behind me. They helped me and then gave me a ride into moberly. I was able to contact a friend after trying to reach everyone I know who I was hopeing was ethier off work or did not work today. My friend picked me up took me back to my car. he found the problem. then we went into columbia to oriellys and bought the stuff we need and went back and fixed the car and I was on the road again.

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  • Gramof3
    Gramof3 Member Posts: 301
    edited July 2009

    Robin and Deb  Congrats on being in Arm C--hope I get to join you in that paart of the trial.  I won't know until Aug. 3.  Robin, glad someone stopped to help you with your car--that's one area that I feel really at a loss about.  If my car doesn't "go" when I want it to, I'm in trouble!

    Brena  My appts usually run about 2 hours.  The Center recently went to a new computer system and now has made changes to that...some of the "older" nurses and staff have been struggling with the change-over and now even some of the doctors are entering information.  The schedules have gotten really mixed up--some double booking, etc.  Last week, some patients were issued meal vouchers because there were too many scheduled over the lunch hours.  I ended up sitting in the waiting room next to an elderly couple (80s I would guess) and I thought I would need serious medication before I got called back.  The man would get up to ask at the desk if he had "fallen through the cracks" and been over looked.  Then, a few minutes later, the woman would go to the window and demand to know when they would be calling him back for his appt.  Then, they would grumble and tell everyone within earshot about how long they had waited.  SOOO annoying. 

    I've been interested in the comments about bones and chemo.  I was walking across a parking lot Wed. evening and just fell down.  I tried to catch myself when I started to stumble--ended up landing on my back.  I didn't trip, or fall over anything--just went down.  I'm feeling it today--shoulders, hips are sore. 

    Hope everyone has a good day today!

    sunflower smiley faces animated gif

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  • debk55
    debk55 Member Posts: 108
    edited July 2009

    Hi All,

    Question for you all. Did any of you have high blood pressure with the avastin. Mine has been borderline and today the onc put me on a blood pressure medicine.  I have done 5 of the 10 extra avastins and am wondering should I continue?? Is it worth being on blood pressure medicine when we do not know if the avastin will help.  But, I also worry what if it will help. I know this is something only I can decide.  Just wondering your thoughts as you all have had to way the risks to the benefits also and know where I am coming from.  

    Thanks for your thoughts.

    Deb:)

     

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  • moborn63
    moborn63 Member Posts: 70
    edited July 2009

    debk55

    Yes my blood pressure raised also on the avastin and they put me on the lowest blood medicine possible.

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