Clinical Trial E5103

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited June 2008

    Hensonchi and Brena,

    Thank you for your kind words.  They really help.  Since I wrote my note, I've been thinking about what to do and decided that another week or two really isn't that big a deal.  The work situation can be fixed and I'm already making the mental and emotional shift. 

    Brena, you brought up an excellent point about keeping a list and calling until things happen.  I have been a passive participant in this process in some respects, waiting for the doctor rather than stepping in to get what I need.  I just made a list of my concerns and how to address them.  This is exactly what I needed to feel more in control.

    When my onc. discussed a treatment plan, he recommended 4 rounds of Taxol (after the AC), every other week.  The E5103 study gives Taxol every week for 12 weeks.  Is there a clinical difference in these 2 approaches?  Perhaps it works out to the same amount of Taxol overall but it's just given in different doses and intervals.  I was just curious.

    Well thanks again.  I'm feeling better about the whole situation and will be able wait until the study drug arrives before I start chemo.

    I live in Oregon.

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  • brena
    brena Member Posts: 458
    edited June 2008

    Pinkvelvet,

    Glad you are more assure of your decision and that you feel more in control. I too needed to do the same, this is what worked for me: I have a tablet that I started prior to day 1 of chemo, this tablet has a page with a date for each visit. Prior to each visit I make a list of my questions, follow-ups and comments to review with the Onc. and I write the answers in the tablet during or after the visit. I have referred back to this tablet many times, some questions don't get answered at the visit so I move it to the next page with the next date of my visit and so forth until answered.

    Now if you ask me when I had certain symptoms, discussed certain issues etc. I could tell you. I also have a copy of the trial docusments and referred to it frequently to better understand the drugs, side effects and tests. I still continue with this tablet and it makes a good reference when needed. I am starting my 2nd trial next week and I am sure at some point my memory will fail me on what happened when and with what drug/s. I also request copies of certain test results such as MUGA, pathology reports, her2/hormone results, Dexa, etc.

    The weekly Taxol is more bearable and overall you do receive a little more accumulative I asked the Onc and he calculated it for me. The drugs usually arrive within 5 business days from the date of randomization, maybe they will arrive sooner than you expect.

    I am happy you are now part of our group, would you mind telling us a little about yourself? Some where in prior pages you will find a little information about each of us, if you have any questions or just want to vent or chat you know where to come we will always listen.

    take care, 

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  • brena
    brena Member Posts: 458
    edited June 2008

    Binney,

    Thank you for your information on lymphedema and the link to the website for additional information.

    smiles,

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  • ekenny315
    ekenny315 Member Posts: 68
    edited June 2008
    Hello again Brena;   were you diagnosed with BC prior to March 08? No  If my math is correct that would mean you are currently pregnant? We decided to terminate the pregnancy not knowing about the hormone receptor status, but knew how aggressive the cancer was. That little soul saved my life.I had a lumpectomy And lymphnode dissection (16+/22) Did your BC spread to your internal organs (mets) such as liver, bone etc - No, my scans & tests prior to my surgery were clear."Your are the youngest to join this thread, very sorry to see that". Wow did not know that:/In this trial you will receive 12 weekly doses of Taxol, were you given a copy of the entire protocol/trial documentation (about 120 pages?)I received a copy of protocol/trial but not 120 pages???glad to be of help, is there anything i can do to help?
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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited June 2008

    Hi Everyone!!

    I got back from Vegas Thursday but I have been exhausted!  I had a great time, didn't win big but didn't loose big either lol.  It sure was so hot out there. 

    I lost a nail right before I left.  When it came off it was about 3/4 of it and I expected it to hurt but it didn't.  I believe all the infection is finally gone. 

    I'm glad everyone is doing well and I see we have more new people.  That is so great.

    I will write more later today.

    Teresa

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited June 2008

    I had a chance to read through the thread.  Wow, you are all so amazing!  You have all been through such an ordeal but it's nice to see you start to come out the other side.

    Here's my story:  I was diagnosed on 4/4/08.  I was at my primary doc for annual checkup and she felt a lump in my right breast.  Nothing to worry about, she said, probably just a cyst but sent me to imaging place immediately to get it checked out.  I took 3 wrong turns driving from one place to the other because I was so flustered and freaked.  They squeezed me in without an appt.  Mammogram followed by ultrasound followed by biopsy with ultrasound.  The radiologist called me the next day to report that the biopsy was cancer.  I had a breast MRI the next week, which showed the original tumor (3.2 cm), another smaller tumor, and a very enlarged lymph node.  After consultations with several docs, had right mast. with immediate reconstruction on 5/19 (tissue expander).  Had SNB and 1/14 nodes positive (node was large - 2.5cm and infiltrating into surrounding tissue - yuck), so chemo was in my future.  3 weeks off work and recovery wasn't too bad.  I had some pity parties when it hit me that although I survived surgery, I had more hoops to jump through.

    I will turn 45 on 10/1 (just days before Carolyn's b'day?).  My DH and I will be married 17 years in Aug.  No kids, although we have a loving, fiesty, and independent black cat named Velvet who keeps us in stiches, a very good thing when going through this BC thing.  I am a child psychologist, I work in a group practice with other psychologists, psychiatrist, developmental peds and learning specialists.  I specialize in helping kids with anxiety disorders and have used all the techniques that I have been teaching kids on a daily basis now.  Many of the kids I see worry about health issues, especially cancer.  I hope to share this experience with them some day to help them see that although it sucks, 'it's not the end of the world' and they can handle tough things that happen.

    After reading all your posts, I am glad to be joining the trial and it is worth the wait.  I was a little skeptical about how Avastin would help those in earlier stages of BC but it's encouraging that it could be very helpful in preventing a recurrance.

    Well, it seems I have written a book.  I might just fit in nicely with this group.  Thank you for all your candidness and strength.

    Jen

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  • cjw
    cjw Member Posts: 42
    edited June 2008

    dear newbies

    You've found a great board, brena in particular has been a big help. Regarding the 12 weekly taxols, my onc says it has a better result than the normal 4/every 2 weeks. It is dosed that way cause that is how they dose for metastatic and they wanted to keep things consistent for this avastin trial (consistent how they did it for the metastatic).  so more hassle, but maybe better results.

    has anyone else gotten a really dry mouth??. That, other than hair loss and fatigue is my worst symptom. likely due to the anti nausea meds so maybe will go away in a day or so (i only take the anti nausea the 2 days after treatment). meanwhile, its interfering with my glass of wine!

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  • S3K5
    S3K5 Member Posts: 606
    edited June 2008

    Hi Ladies,

    Brena, thanks for your response. III chemo went okay. My cough is under control with the inhalers. My onco thinks it is due to the chemo drugs. I have a prescription for Dexamethasone (a steroid) which helps with the nausea and cough. It has definitely helped but it can cause insomnia!

    Carol, I do get dry mouth by - 5th day after AC/Avastin. I have Tic Tac mint to help with that. My hair loss is almost complete - hair left only on the front and back of the head! (I started my first chemo on 5/30) For me, nausea is the worst during the first 5 days after chemo (even with Emend,Kytril,campazine,etc)

    Jen, welcome to the group, though I feel sorry to see any newbies coming onboard. When do you start your chemo? In this trial I think we have a choice of Dose dense or once in three weeks. My oncologist prefers DD since she believes it has a better outcome. I am done with three of 4 DD AC.  Just one question - you said that the MRI showed a 3.5 cm tumor but your signature says 2 cm - which is the correct one? Just curious....Where are you located?

    Take care,

    Desi

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited June 2008

    Whew, I have had a productive day so far.  Last night, I made a "to-do" list of what needed to happen to move forward with chemo (thanks again, Brean).  After a number of phone calls I think things are squared away.  I just got back from giving blood, which was needed before I could be randomized into the clinical trial.  The research nurse should have all the results tomorrow and she can randomize me then.  The trial drug should get here in about 5 days after that so I should be able to start next week.  I never thought I'd be sooo excited about starting chemo.  I meet with my onc. tomorrow for chemo questions, make sure the port site is healing, etc.  Then I have a dentist appt.

    Desi, the MRI showed that the tumor was 3.2, but the path report after surgery said it was 2.5  Did it shrink (maybe all that visualization helped!)?  Was the MRI report not totally accurate?  I don't know...I would assume that the path report is the more accurate of the two since they were actually seeing the tumor directly.  I will have DD A/C and I live in Oregon.  I'm glad you are moving through the A/C and hope that the steroids help (but also hope you can sleep). 

    Again, I really appreciate all your support.  I know I would get through all this no matter what but it sure feels good to feel more in control and to have good spirits about it all (as much as you can anyway). 

    Jen

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  • brena
    brena Member Posts: 458
    edited July 2008

    Ladies,

    I have an electronic copy (PDF format) of our trial E5103 it is 125 pages, can send you through email if you want a copy please let me know. This would be the same document that is in your medical packet with your Onc, this has all the details of what, when and your Onc's discretion on some changes. Not a secret just may be more information that what you were given.

    Cool

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  • brena
    brena Member Posts: 458
    edited July 2008

    Desi,

    Glad you are receiving something for the cough and it is working, you are correct the Dexamethasone will cause insomnia. I received Dexamethasone and benadryl prior to each chemo and Dexamethasone prior to each Taxol treatment, now you know why I havn't slept in 6 months. The Benadryl would put me to sleep right in the chair while receiving chemo then was up for the next three days. I had to go on sleeping pills because I became a walking zombie, still cannot sleep without sleep aid. I am hoping after rads I can develop a good sleeping habit or a new normal. I sleep about 4hrs with/out sleep aid, not sure how I manage to function will so little sleep. I guess I got accustomed to it.

    Maybe time to shave the head? You are doing great if you only experience the nausea, keep up what ever your doing. By the 3rd round I thought the Onc was poisoning me and what I was feeling was proof. Again, each person is different.

    Your almost there...Wink

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  • brena
    brena Member Posts: 458
    edited July 2008

    Carol,

    Thanks for the feedback from your Onc this information helps us all have a better understanding and is one of the great results of being a group, please keep sharing the info.

    Interfering with your glass of wine, now I would draw line and have a real heart-to-heart with the Onc! Some things just cannot be tolerated, or I could have the glass of wine for you? Fatigue well you will probably experience it for the next several months, sorry to say.

    I do not recall or can reference having dry mouth. I experienced a little nasua but I must say I never ever threw-up. I survived chemo without throwing-up but have thrown-up the Doxycycline (tick bite) three times and almost another two..go figure!

    Are your girls involved in any summer activities? or is everyone relaxing over the summer? Your half way with the A/C, how is the family handling your rough periods?

    take care and stay healthy,

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  • brena
    brena Member Posts: 458
    edited July 2008

    Jen,

    Thank you for sharing your story with us, and glad to see you feel part of the group as you make a nice addition. Please let us know when you have been randomized lets hope it will be tomorrow. Again, very glad you waited and are participating in the trial to make a difference. Your road to discovering the BC seemed to be a challenge in many respects and it sounds as if you used some of your skill-sets.

     BC will definitely bring an emotional roller coaster, a little anxiety, doubt, fear etc. This is normal and I figured this out after reading many many posts of other woman describing the same. When I felt on this roller coaster I rode my bike and made it "my time" to getter better connected with me and then were able to move forward a step at a time. I believe the drugs contributed to the emotions, only recently (4-6 weeks) have I started to feel like myself or the "NEW NORMAL." About a month ago, just before rads, I felt my last push of the emotions where I just wanted to drop everything and run. I didn't care where but to run as fast as I could, obviously I did not but wanted my old "normal" back..those days before October 1st 2007. A quick conversation with the Onc and I realized I will never ever have those days back but will need to settle for the "New Normal" which will involve Breast Cancer on some level even if just follow-up for these two trials. Just a reminder for those of us in this trial that would be 15years.

    You make a great role model for the kids and they will respect you more as do yourself. Yes, you wrote a book but that makes me not look so bad...thanks. Proud of you for finding a system that helps you feel and stay more in control of YOUR BC journey, great work!!

    may the sun shine on you on your first chemo round,

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  • brena
    brena Member Posts: 458
    edited July 2008

    Ladies,

    Well I have gone and written a book but in smaller chapters, can you tell? I have to go and fix my flat tire on my bike, back tire with the gears..yuk! not sure if I should drink wine while trying to fix the flat. Will see.

    good night, 

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  • brena
    brena Member Posts: 458
    edited July 2008

    Carolyn,

    One last note, how are you feeling? my breast hurts more, reddish and no blister or peeling so I should shut-up. My tumor bed is estimated to be 1.5cm deep and since they cannot get exact dimension they will go a little deeper. I told Rad/Onc today that I have clips around the tumor and if they could see them it would help with more precise bed dimension. I am using the aloe gel with the cream the rad/tech provided working good together but the pain is increasing with each round. I do get a three day release this weekend.

    till tomorrow,

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  • brena
    brena Member Posts: 458
    edited July 2008

    Carolyn and Teresa,

    Time for a roll call, due to Taxol:

    how many fingernails totally removed? how many fingernails broke or partially removed?

    how many toenails totally removed? how many toenails broken or partially removed?

    my results: 3 more fingernails to be tallied very soon not sure if they will fallout or break-off.

    2 toenails totally removed.

    3 fingernails totally removed.

    3 fingernails broken off 50% or more.

    Brena
    Dx 10/1/2007, IDC, 3cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2-

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited July 2008

    Good news,

    My last blood sample was drawn today and I have been randomized to the clinical trial.  I am scheduled to start next thurs, 7/10 and the clinical meds should be here in plenty of time.  I am feeling very supported by my onc and the research nurse so that's great too.  Got my teeth cleaned today, too - Laughing

    Lots of hugs to everyone!

    Jen

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  • HensonChi
    HensonChi Member Posts: 357
    edited July 2008

    How is everyone?  I had my first chemo today, it took a long time, but so far so good.  The nurse told me to be careful with the neulesta shots as they cost $4000.00 a piece.  Hmmmmmm I hope I do it right!  They checked my blood pressure every 15 minutes when the avastian/placebo went in...It did go up a bit but nothing too bad.  Hope everyone is doing well and hope you all don't have too many side effects!

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2008

    Brena,

    Oh girl I need your advice.  You know I have been done with taxol now  for 5 weeks....5 dang it!  So when my eyebrows started coming out and losing ALL my eyebrows 2 weeks ago happened, well I was kinda mad.  But now....my left big toe nail is infected under it.  It hurts so dang bad and the tip of my toe is red.  I called the nurse she was suppose to call me back but didn't so I'll call again in the morning.  I wish it would just break open and drain.  I soaked it in warm water....yea yea I know they say don't do that but it made it feel a little better.  I just can't believe after 5 weeks this is happening.  Heck, my toe nails were just fine through treatment.  My fingernails are what took a beating.  All the nails have lifted and one broke off almost completely. 

    I know you had issues with an infected nail so how did you get it to get better?

    Teresa

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  • karakay
    karakay Member Posts: 7
    edited July 2008

    Hello All,

     I signed up for the E5103 trial on July 1st and start my first AC + Avastin/Placebo on Tuesday July 8th. I had an extremely difficult time deciding whether or not to participate in the trial, and I am still scared of the potential long term side effects as well as effects on fertility as I am only 28 years old and hope to have a family someday. I had a bilateral mastectomy and I'm starting the chemo regimen without a port in hopes of not having to go through that additional surgery. Does anyone have any tips, hints, suggestions for the first chemo treatment? I am very nervous and scared.

     Also, thank you to Brena for introducing me to this website and chat group.

    Kara

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  • brena
    brena Member Posts: 458
    edited July 2008

    Kara,

    I am glad we found each other, welcome to the group. You are the youngest woman to join with Erika being the next youngest.at 36. When you can review this thread history so you get to know each of us a little better. Including yourself there are now 9 of us in the group of which the most senior woman, who have completed the entire chemo/taxol regimen: myself, Teresa and Carolyn. Carolyn and Teresa were in arm C so they moved to arm D and are receiving just the Avastin as I was in Arm A, the placebo group so I did not continue. The other woman are Erika, Henson, Desi, Carol and Pinkvelvet (Jen). Jen will be starting her first round of chemo on July 10th so the two of you will be going your first round together.

    My first round of chemo was a no-brainer, no side effects just took my daughter with me cause I was not sure how I would feel. The drugs did feel cold upon entering but just initially, got a blanket from the nurse and I was good. I received Dexamethasone and Benadryl through my IV prior to my A/C. I returned to the Onc's office the next day and received my Neulasta shot. It appears other woman are taking anti-nausea meds and Neulasta shot at home on their own, guess its Dr's privilege on how to administer those drugs.I brought my headphones and a drink to help pass the time, it was 2-3hrs for the entire process. My sequential chemo rounds I went solo although there were days that I felt like crap I was still functional.

    This website has much information on just about anything you could what to know.

    Who do you have in your support system to help you on those tougher days?

    What state do you live? You are at such a young age, is BC in your family history? are you being tested for the BRCA gene?

    Did your Onc recommend this trial to you or did you ask? if you did not join the trial would you still be doing the A/C chemo regimen?

    I am assuming you will not be doing radiation since you had bilateral masectomy?

    How was your BC found?

    I have a tendency to write books along with Carolyn and Jen. Keep in mind we are all taking the same meds, dosages and frequency so together we make one hell of support group. Please ask what you want and we will give the answers if we know, woman outside of this group have quite a bit of knowledge and all of us also learn from them.

    Kara,

    again welcome

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  • brena
    brena Member Posts: 458
    edited July 2008

    My gal Teresa,

    I cannot believe how much our symptoms are similar. When my toes were infected I tried peroxide, soaking them in Listerine, antibiotics etc. to stop the infection and I had NO luck. The toe nails lifted and I then had to go to the podiatrist to get them removed, and also took antibiotic Levaquin for 10 days. The same thing happened to my thumbnail when I was on my cruise, but that time I took matters into my own hands, or better my sisters hands.

    I truly understand, it has been 8 weeks since my last Taxol and now the SE are showing. Outside of the two toenails being infected I had no other symptom until after completion.

    CAUTION-do not continue to read unless you have a good stomach.

    Third day on the cruise the thumbnail infection was so bad and hurt like hell I just knew I had to drain the infection to get relief or I was going to be in bad shape. I found a safety pin and sterilized it with Ear Care (all we had) and had my sister poke holes around the thumb nail and pressed down on the nail to drain the green puss and yes I cried it hurt so bad. We did this daily for three days until the thumbnail stopped filling with you know what. Upon returning home I got sick with what I thought was a bug from the cruise, nope it was the thumbnail infection that went into my bloodstream. You guessed another 10 days of antibiotics.

    Recommend you get antibiotics and removing the nail, my thumbnail eventually fell off by itself and that was almost as painful as the oozing of the green stuff.

    I also have more nails that will fall off or break-off but they only hurt once in a while in the nail bed. All remaining 5 nails have lifted from the skin, the Taxol has done its damage and it is now just a matter of time before everything repairs itself. It appears to be an extremely slow process because my toenails still have not grown and they were damaged in March.

    I have faced the fact that TAXOL has a reaction of its own and nothing seems to stop it!! sorry to say.

    I could send you a box of my "hello kitty" band-aids?

    I talked with and showed my trial nurse my fingers and she said my condition was extreme and she took photos to report it as an adverse effect.

    KEEP KNOCKING ON YOUR ONC'S DOOR UNTIL YOU GET A RESPONSE AND TREATMENT. Don't get sick like I did not very fun. You were on Keflex did that help?

    any results from your Onc?

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  • brena
    brena Member Posts: 458
    edited July 2008

    Ladies,

    I visited the Onc and I received my supply of Clodronate for S0307 Phase 2 trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer. Two pills a day for three years with hope to prevent the cancer recurring in my bones, lets hope! The pills are the same size as my current ANTIBIOTICS, Doxycycline, so no big surprise. Trying to coordinate all my meds will be a challenge as all should be on an empty stomach. I guess if I ate nothing all day and just popped pills I could meet the requirement. I hope to give up the Nexium and Doxycycline very soon, so that would be two less pills.

    My medical folder at the Onc's office will need a 5" binder to keep it all together...LOL. All for a good cause and research.

    I am off from rads tomorrow and I think the rest of the family is working so I may just have the day to myself.....thinking crabs and beer? Anyone want to join me?

    Off for my bike ride, might be back on later this evening.

    take care and stay safe,

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  • brena
    brena Member Posts: 458
    edited July 2008

    Henson,

    Wonderful to hear you completed your first round of chemo with little to no SE's. Did you go by yourself? How long did the entire visit take? As I mentioned above I had to go back to the office the following day to receive my Neulasta shot, not sue I could of handled giving it to myself. Did you have a choice to give it to yourself or go back to the office?

    I purchased a Blood Pressure meter so I was able to check my pressure at home, going to the Onc's office was enough to raise the pressure. When I checked it at home it was normal to high normal range; therefore, I knew it was going to the office for chemo is what caused the spike. If I did not check my BP at home I probably would of received BP meds because of it being so high (170-180) when I visited the office. Remember I received the placebo, so the high BP was my body responding to the chemo and stress.

    Let us know how you make out giving yourself the injection, brave woman! I hope your SE are minimal, one down and three more to go.

    germs are not your friend,

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  • brena
    brena Member Posts: 458
    edited July 2008

    Teresa,

    For about two weeks I have been putting Tree Tea Oil on and under my nails and it is making an improvement. As soon as all my nails get the same length I am having them colored don't care if they are still ugly. I really think the Taxol is at the end of its infliction and we just need to finish it out.

    hang in there,

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2008

    Brena,

    Well today my toe is no worse but no better either.  The thing that has me confused is that my toenail has not even began to lift.  I truly wish it would so I could get this stuff out. 

    I don't want to get sick so I'm going to call and go see the doctor on monday.  I am taking a z pak for sinus infection...the last one is tomorrow.  I think I will be ok until monday.

    Today I lost the last 3 of my eyelashes.  I really thought I was in the clear on this one since I still had them at the end of treatment but alas it wasn't meant to be. 

    I hope everyone has a great 4th of July!

    Teresa

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  • karakay
    karakay Member Posts: 7
    edited July 2008

    Thank you for the warm welcome Brena.

    To answer your questions...

    I am from PA, but relocated to NYC for surgery and treatment at Memorial Sloan Kettering. I live here with my husband, and my mother will be a frequent visitor throughout my treatment.

    I have no family history of breast cancer and never did a self breast exam. I happened to be on vacation in March, and I while I was shaving my underarms, I felt a bump on the side of my breast. I went to the doctor upon return and he told me the chance of it being cancer was 1 in 100,000 because of my age and lack of family history. I wasn't worried at all, and was completely shocked and devastating when the results came back malignant. I'm being tested for the BRCA mutations on Monday. It will take about 6 weeks to get my results.

    Upon first meeting with my oncologist, there was no discussion of "triple negative"breast cancer, therefore I assumed it was a good thing to be negative for ER,PR, and HER2.  We scheduled the standard dose dense AC followed by T. However, a couple of weeks later I stumbled upon "triple negative" on the internet and freaked out. I called my onc immediately and expressed my anxiety about what I had read. She told me that she thinks "triple negative" breast cancer is a misnomer, but if I wanted to do something more I could join this trial. So, that is how I ended up in E5103.

    My surgeon does not feel that I need radiation, but the margins around my tumor were less than .01 cm, therefore I think I will meet with a radiation oncologist at some point to discuss further.

    Thanks for your support and I hope everyone has a great 4th of July!

    Kara

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  • carolynf
    carolynf Member Posts: 262
    edited July 2008

    Happy 4th of July to all!

    Sorry i have been out of the loop.  Between finishing up baseball/Allstars I am now on the relaxing side.  I only worked 1 day this week.  The rads have made me tired and I had the 3rd Avastin on Monday.  In regards to the rads Brena, my underarm (location of node scar) is pretty darn red and sore.  I also have been using aloe and the cream from the rad techs.  I did have my scan this past Monday and everything went very quickly and smoothly.  I start my boost on Tuesday. Not really looking forward to that. The underneath of my breast has a little spot that has peeled.  It's strange how that spot doesn't really bother me.  I have also had pain inside my breast where the lump was removed.  I cannot go to work w/out a bra...I have to bring my daughter Sunday to Colby for her bball camp and my husband is heading higher to bring my little guy to Conservation camp which is about 3 1/2 hrs depending on the traffic.  Enough about my bc. 

    Welcome newbies and I am happy that you have engaged in this trial that may benefit our friends and loved ones.  In regards to hair...I started losing my hair on the 17th day of chemo and shaved it off w/my sister (sympathy shave from her) that Friday over a bottle of Blueberry wine (of course from Maine).  Her hair definitely grew back quicker than mine.

    Brena/Teresa: In regards to my nails, I still have them (knock on wood).  Kids don't like the fact that mom doesn't do dishes and they have been used to me doing them.  I have had a couple nails break off at the top.  I painted them purple along w/my toenails.  My fingernails were just looking plain nasty w/the discoloration.  Then I planted some plants and did not wear my gloves....won't do that again.

    I do have a wicked pain in my left thumb.  Onc. says its like arthritis and to take motrin/ibuprofen.  I only have a few eyebrows and lashes are almost nil.  In regards to a dry mouth, I brush and rinse w/a product called biotene.  They make toothpaste, mouthwash, and a mouth spray for on the go.  My mother has precancerous of the mouth (only 4% in the world) and she started using it after i let her borrow some of mine. It has helped her a lot.

    Jen:  Hello to another Libra!

    Well, I will close this chapter and try to get online a little more.  Take care to all and hope you are all getting the rest you need.  Take it even if you don't because it will catch up to you.

    Carolyn 

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited July 2008

    Hi Ladies - I'm ready for chemo tomorrow, as ready as one can be.  I'm not so worried about tomorrow but it's more the unsureness of how my body will tolerate treatment both tomorrow and in the months to come.  Not being able to plan anything is hard.  Have to take it one day at a time.

    I just realized this morning that I am sooo angry that I have cancer.  I haven't really been angry before now and I am a little surprised that it's popping up now.  I feel like I've entered a marathon but I'm only at mile 3 and I want to stop.  I won't of course but I'm just tired of it all.  Brena, it's a lot like you described of just wanting to run away.  I know this feeling will pass, but I'm glad I have a place to express my feelings as there are probably many of you that have felt similarly.

    Kara - I hope your treatment yesterday went well and that you are feeling okay.  Let us know how it's going.

    Thank you all for your support.  I hope you are all doing well.

    Jen

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  • brena
    brena Member Posts: 458
    edited July 2008

    Ladies,

    I hope everyone had a fun and safe holiday and an extra long weekend. My time was quiet as everyone else in the family had to work but I enjoyed the time.

    I should be at rads but overslept (IS-NT THAT GREAT) and I don't care because it is the first time I slept good in more than a month. I did take a sleeping pill and rode 26 miles yesterday may be it was the combo of the two I don't care cause I feel refreshed just a little groggy due to pill!! I am sure my missed day will be tacked on too the end of my sentence. My breast is getting very raw underneath, am putting their recommended cream, aloe and a sterile pad. Hope to get better soon, boob is so much darker than the rest of my body.

    I am trying to reduce the qty of pills that I am consuming.I have eliminated the Nexium with minimal effects. The last time I tried I went off them I had stomach pain for three days and had to go back on it to relieve the pain. The next to be given-up is the Doxycycline which should be in another week and I don't want to see-hear-or discuss another antibiotic for the remainder of this year unless my life will depend on them! I calculated 47of 60 days I will have been on an antibiotic for one reason or another, I had enough! After giving up those two pills I will then be left with the Clodronate, one a day and a calcium pill. I mentally tell myself the Clodronate is a birth control pill (to stress its importance) so as not to forget taking, as remembering to take pills is not one of my strong points. I have to keep the pills on my kitchen table to remember otherwise forget them.

    Anyone with some great summer plans, enough to make me jealous? I will be spending mine getting my boob burnt or hopefully just a dark tan.

    take care,

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