Clinical Trial E5103

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

    Hi ladies, just checking in!  just posted on the motivation thread that we took a beautiful road trip yesterday and got back this a.m. through national forests and different passes where the landscape/geograph was just incredible and gorgeous.  Ended up in Reno, NV for the night and had great food and a free concert.  What fun!!  We've actually been out of town for 3 weekends in a row and it feels so good to do 'normal' things!!  Good for the soul.

    Brena, thinking of you as you struggle with healing!!

    Robin, yay for the hair coming back even if it is gray! LOL!!!  smiles....and so happy you got help with the car, could have been scary!!

    Deb, Avastin hasn't raised my blood pressure, although each time I go in for an infusion its sky high, then once they get the IV going, it goes back down to normal.  I get freaked out I guess about the IV.  The Taxol is what I had issues with regarding my heart rate and they put me on blood pressure meds that I quit taking after the Taxol stopped.  Maybe once you're done with the Avastin, it will go back to normal on its own.  Here's hoping...

    I have 2 more Avastin to go....yes I'm counting!!!!

    Have a great Sunday afternoon/evening!!

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  • Janet0527
    Janet0527 Member Posts: 141
    edited July 2009

    Hi Ladies - I haven't been on here in some time and I know I haven't read all the posts, but I did skim.  Brena, that story about the bike and the geese is just crazy and really rather funny, though of course not the part about you being hurt - I hope you're healing well.  Mainly I'm posting to share my Taxol experience given some questions I saw on that, just to add mine to the mix.  I had Taxol #8 last Wednesday.  Taxol is, for me, indeed, way better than AC.  I have not seen any hair growth on my head at all, though some people see their hair return while on Taxol.  It's the same little fuzzy stubble that's been there all along (when it started coming out in handfuls right after my 2nd AC, I buzzed it to 1/8", and there it still is today).  My eyebrows are sooooooo thin that I am drawing them on with powder, but at least that's an option with the brows.  I would say that this happened to me in the last month maybe.  My brows and lashes were completely intact all the way through AC and the first month maybe of the Taxol, then within a week both thinned dramatically.  My eyelashes are all but gone - I have single strands left that I still put mascara on, but it's really not much of anything.  This happened on the same timeline as the eyebrows - disappeared over the last few weeks to a month.  Someone mentioned something about high blood pressure, but I think it is the Avastin that causes that, not the Taxol.  I don't have high blood pressure, but I know that it's a common Avastin side effect.  I do think I may be getting the Avastin though, because of the bloody nose side effect.  I don't exaccly have bloody noses, but (this is a little gross - sorry), I have boogers that are dark dark red like they are just full of blood, and it's consistently been like that for many many weeks.  Hmmmm.  I also am having problems with the skin on my feet not healing well - I dance (salsa and ballroom) and after hours dancing in heels, normally I would be fine but these days my feet are just ripped to shreds.  I know that healing issues are another Avastin thing.  Next week is #9 Taxol for me, then the week after is #10 and also my final Avastin/nothing tx, so I will be unblinded on that day.  Oh yeah, the other thing - for me, I'm getting Decadron by IV prior to Taxol, not pills to take at home.  I also get Benadryl by IV and Aloxy (anti-nausea) as pre-meds before Taxol.  I think whether you have to take pills or get it IV is just a physician's choice and probably doesn't matter at all.  One benefit of pills is your infusion time will be slightly shorter.  Okay, that's it from me for now.  Everyone hang in there.

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  • TexasRose
    TexasRose Member Posts: 740
    edited July 2009

    Deb, My blood pressure was normal until I started chemo. It is high now so I am also on BP meds for the duration of chemo. The clinical trial nurse told me Avastin could raise my BP, so maybe I am getting the drug. Hopefully, I will be able to go back off them after I'm done.

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  • brena
    brena Member Posts: 458
    edited July 2009

    Robin,

    Definitely friendship, I am glad to hear your ok and handled the situation in style and grace. Nothing worse than getting stranded!! Drive safely.

    take care,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Janet,

    I remember those days of counting the eyelashes left and all the other wonderful things that chemo took away. I had one up-side I didn't have to shave my legs the entire summer, liked the break. It will come back eventually so hang in there and if you can find the "look-good feel-good" ACS sponsored program definitely attend, it is great. I learned to pamper myself and take time for myself, I guess I could say this was a turning point for me.

    I hope your getting the Avastin, will check in to see your unblinding.

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  • brena
    brena Member Posts: 458
    edited July 2009

     Kari,

    I am truly jealous on your trips, keep going and enjoy yourself.........you deserve it!! Who performed at the concert?

    smiles,

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  • brena
    brena Member Posts: 458
    edited July 2009

     Kari,

    I am truly jealous on your trips, keep going and enjoy yourself.........you deserve it!! Who performed at the concert?

    smiles,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Ladies,

    Well it is back to work a full 8hr day starting tomorrow. My left arm is healing and am able to do more with it, maybe a little more than I should be doing as it is really sore by the end of the day. I am actually typing with both hands, much faster. Arm is still black and blue, large scab etc. but getting better and go back to the ortho on Wednesday, will have him look at my right wrist for the ongoing pain. I got many of my tasks completed this weekend, next Sunday I am having a large family get together with a BBQ, family time well past due.

    My sister in law was just told she has a 5cm nodule on her lung, she does smoke. She is now starting to go through the diagnosis process to determine if there is more cancer in her body. Not a pleasant thing and I hope to talk with her sometime down the road, we have a rocky past and hope we can leave our differences behind as we know this is a time for strength and support. We will see.

    ready for more time off,

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  • brena
    brena Member Posts: 458
    edited July 2009

    Ladies,

    As i said before I have taken steps to get BHRT and after many obstacle I have results in hand and expect my first prescription this week. Based on the data below I will probably only receive Testosterone and Progesterone based on the data, we will see. Most likely no need for Estrogen, read below. I do realize BHRT is a personal decision and very subjective but I decided to post my results and analysis because so many of us suffer the same SE from chemo and this is my road to recovery.

    Saliva Hormone Test Results            Normal  Range

    Estradiol    1.1 (in range)                    0.5-1.7 pg/ml

    Progesterone 11L (below range)          12-100 pg/ml

    Ratio: Pg/E2   10 (below range)           100-500 whe E2 1.3-3.3 pg/ml

    Testosteron 16 (in range)                    16-55 pg/ml

    DHEAS 2.1 (in range)                          2-2.3 ng/ml

    Cortisol Morning   2.4L (below range)   3.7-9.5 ng/ml 

    The above tests show normal when done by bloodwork; however when the same test are performed by saliva the result are very different and actually are a truer reflection of how I feel, see saliva test result below.

    Summary & Recommendation from saliva test:

    Estradiol is lower than the optimal range for a postmenopausal woman (1.3-1.7 pg/mI), which contributes to symptoms of estrogen deficiency. Other symptoms indicate estrogen dominance which may be due to higher levels of other estrogens (e.g. estrone, phytoestrogens, xenoestrogens) and/or low progesterone (low ratio of progesterone/estradiol). If symptoms of estrogen deficiency become more problematic as menopause progresses it may be worthwhile to consider natural estrogen supplementation (assuming no contraindications) in combination with natural progesterone.


    Progesterone is very low and not well balanced with estradiol (low progesterone/estradiol ratio), which likely contributes to symptoms of both estrogen dominance and estrogen deficiency. It would be worthwhile to consider progesterone supplementation as it has been shown to be helpful for symptoms of estrogen imbalance. Symptoms also indicate thyroid deficiency, which is often caused by an imbalance in the ratio of progesterone/estradiol.


    Testosterone is lower than expected range. Low testosterone is often associated with one or more of the following symptoms:
    low libido, incontinence, vaginal dryness, fatigue, memory lapses, depression, and bone loss. Low salivary testosterone has been correlated with low bone mass (Oronzo et al. Eur J Epidemiology 16: 907-912, 2000) and reported symptoms/conditions indicate that bone loss is moderate/severe. Testosterone is an anabolic hormone essential for building and maintaining the integrity of structural tissues such as skin, muscles, and bone. It would be worthwhile to periodically evaluate bone density since low testosterone is often associated with bone loss, osteoporosis, and increased fracture risk. Women can lose 20% of their bone mass the first 5-7 years of menopause (NaVl Osteoporosis Foundation) and 55% of the people aged 50 and older in the US have low bone mass (National Osteoporosis Foundation: Americ&s Bone Health 2002 ed.).
    DHEAS is within low-normal expected age range. Chronic low DHEAS may suggest adrenal fatigue, particularly if cortisol is also low and symptoms are indicative of low adrenal function. DHEAS is highest during the late teens to early twenties (10-20 ng/ml) and drops steadily with age to the lower end of range by age 70-80. Consider adrenal adaptogens or DHEA supplements if symptoms of androgen deficiency are problematic.

    I am a little concerned about this low level:
    Low cortisol levels indicate adrenal fatigue (usually caused by a stressor-emotional, physical, and chemical). This often contributes to symptoms such as fatigue, allergies (immune dysfunction), chemical sensitivity, cold body temp, and sugar craving. Cortisol is normally highest in the morning and then steadily drops throughout the day reaching the lowest level at night before bed. Because these results indicate low output of cortisol by the adrenals (hypoadrenia), it would be worthwhile to consider adrenal support. It would be worthwhile to test cortisol four times throughout the day (morning, noon, evening, and night) to evaluate the circadian rhythm and adrenal capacity for cortisol output. Adequate sleep, gentle exercise, naps, meditation, proper diet (adequate protein), natural progesterone, adrenal extracts, and nutritional (vitamins C and B5) and herbal supplements are some of the natural ways to help support adrenal function (consult with a health care provider for proper dosing). Normal physiological levels of cortisol are essential for optimal thyroid function; therefore, symptoms of thyroid deficiency may result from low cortisol.

    I am expecting to get testosterone and progesterone based on the data above but still waiting for final result from Gyno.

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

    Janet, good to hear from you and anxious to hear when you are unblinded.  My eyelashes are now fully back, it takes some time for them to completely fill back in, at least they did in my case.

    Brena, the concert was by journeyunauthorized.com and they were really good and it was fun.  We have to get out there and enjoy ladies!!  Brena, hope you do ok at work today!!

    I met two other ladies last night at dinner at a friend's house.  More cancer sisters....colon and colon/lung. We shared a lot of info and stories. Very bonding. 

    Ok, let's make it a great Monday!! 

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  • foobs
    foobs Member Posts: 110
    edited July 2009

    Hi Gals

    I had my first of 12 weekly Taxols 3 days ago.  I'm doing MUCH better than after the A/C but I just wish I had more energy.  Still, its way better than A/C!  Do any of you know if the Taxol is cumulative, like the AC seemed to be?

    Of course I don't yet know until late Sept if I'm on Avastin or not.  My blood pressure seems to be ok, just a little bit high.  But my bottom is bleeding with BMs.  My nose seems a little dry and bleeds just a little.  But the south end really is and I'm not even constipated.  This just started this week. Could this be an Avastin SE?  Has anyone else had this SE? 

    Thanks ladies.  Sorry I don't address each one of you but the energy isn't there.  I do read your posts and wish you all the best.  I want to cry for us all but that wouldn't do much good.  It helps me so much to read how you're all hanging in there and being so strong. 

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  • PooTik
    PooTik Member Posts: 4
    edited July 2009

    Hi, I'm on this same trial and I was un-blinded last week.  I'm getting Avastin!  I've had the following SE:

    - Nose bleeds (pretty much every time I wipe my nose there is blood)

    - severe peeling of feet (not sure if this is AVastin or AC related?)  It lasted for a month or so.

    From your sypmtoms (foobs), sounds like you may be getting it...even my blood pressure was traditionally very low, but it was higher after my treatments.

    I have 3 more weekly treatments of Taxol to go (out of 12).  I've had bone pain and headaches occassionally, but nothing as bad as AC.

    Good luck everyone, hang in there - because it will be over - that's all I can say.  

     Dx 1/12/09, Invasive Ductile, Stage IIb, Grade 3, Triple Negative.

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

    foobs - yay to the next phase for you! Taxol!  You're getting there!!  I had the peeling hands and feet at the end of A/C beginning of Taxol.  But it does clear up!  I have the butt issue too (that's what my nurse/onc say 'butt issues')  Ever since chemo started last Aug for me!  My onc checked me down there and said its an anal fissure, but there is nothing they can do about it until Avastin is done for over for a month.  I spoke with a friend of mine who is a lymphoma survivor and the same thing happened to her and she said that it took surgery to fix it! oh dear!!  It hurts I can tell you that!  

    PooTik - Hi, yay you are almost done with Taxol and getting Avastin!!  I pray that this study shows the positive results we are all cheering for!

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  • PooTik
    PooTik Member Posts: 4
    edited July 2009

    kfinnigan - when will you be done with Avastin?  Are you continuing it for a total of one year?

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  • TexasRose
    TexasRose Member Posts: 740
    edited July 2009

    foobs- I have the butt issues as well. They just started with my 4th and last AC. You must be about a week ahead of me because I start 12 weekly Taxol next Tuesday. I am taking stool softeners and it is finally beginning to help. The last couple of days has been like a cactus coming out. Very painful! Even just sitting the last couple of days has been painful. Hope you are feeling better soon!

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    Poo Tik,

    The peeling of the bottom of your feet was probably from the adramycian, I had it too.  My feet felt like they were burned, oh some days they hurt so bad then they began peeling.  Dr said it was hand/foot syndrome.

    Teresa

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

    Yes, hand/foot syndrome, that's what they told me last fall!!

    PooTik, I will be finished on August 6th!!!!!!!YAY!!!!!!!!!  Started chemo last Aug. 28th and I am on cycle16 of the Avastin...since we skipped the last one I will have 17 total cycles instead of 18.

    Interesting TexasRose, you have the butt issues too!  geez we never wanted to be a part of that club, now did we?  LOL 

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  • TexasRose
    TexasRose Member Posts: 740
    edited July 2009

    Kari- Nah, I didn't sign up for that one!!! Wink  Yay to being so close to done!!! Were you in Arm C? I know it's probably awful of me, but I'm praying for Arm B. I want to be done so badly!!!!! I have until October 6th if all goes as planned and I'm not in Arm C.

    My feet and hands are peeling too, but not badly. I hope it doesn't get any worse though. 

    Mary

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

    Mary, I can't remember what the heck the trial papers said, Arm C or D???  Well anyway, I'm on the one that was indeed getting it the whole time and continued on every 3 wks when Taxol was over.  I found as the time of the unblinding grew near last Dec. I had great anxiety over it!  geez, this is all such a mind game, as well as a physical one, as far as I'm concerned!!  Hope the feet and hands heal up soon!!

    Hugs, Kari 

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    Hey Guys,

    Is there any possibility of any of you being able to take a long weekend vacation to sunny Las Vegas?????

    September 25 to the 28th....Lots of us from BC.org will be going, I thought how great it would be to meet up with some of you from the trial.  The info on the trip is on the reconstruction board but by no means is this just women who had reconstruction so if you can go it would be a blast.

    Teresa

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

    Teresa, I've been hearing and reading about that get together.  I would love to go but don't think I can swing it!!! DARN!!!!!!!!!!!!!!!  but, you never know...

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    Its going to be a blast. I have an extra bed in my room.  Im going with my daughter, so if anyone wants to go but needs to make it "cheaper"...I would gladly share the room!

    Teresa

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

    Had Avastin #17 yesterday, it was 105 outside and felt like 40 degrees inside the chemo room.  They couldn't find a vein anywhere!!  Took 4 tries all over my arm before another nurse got it!  Only one infusion left in 3 wks, thank goodness!!!!!!!!  All the nurses said they love my growing hair!  I had my favorite nurse laughing as she was trying to get my IV going, we were envisioning the whole scenario as a Saturday Night Live skit (nurses yelling at patients to suck it up and quit whining, etc.)  Anything to get through a visit at the chemo room!  haha

    Have a wonderful day/weekend!

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  • DonnaLeeLee
    DonnaLeeLee Member Posts: 2
    edited July 2009

    Ladies, I'm very new to this breast cancer thing and reading your posts kind of shakes the unrealness out of me...I'm getting a clearer picture of what I'm in for. I have signed on to do an avastin clinical trial at Dana Farber. I will be getting all the required testing done July 20th and get my first dose of avastin July 21st. In this study, I know I'm getting the avastin, everyone in this small study does. They hope to have 100 women in it, 50 or so, so far.

    I will have chemo to shrink the tumor before surgery. They may or may not be able to save the breast.

    Does anyone know the difference between a PICC line and a port? There's been some talk about me getting a port, but I'm a little confused since they don't do surgery once avastin treatment has begun. We can't delay the chemotherapy because I am grade 3. I know I'll get all my questions answered next week, but if anyone has knowledge of these things, I'm all ears.

    Looking forward to becoming more familiar with this forum; I can see it will be a source of comfort to check in with others have similar experiences. I never joined a chat room before today!

    Donna

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

    Welcome Donna!

    I never had a port so can't help you with your question.  Let us know how the testing goes today and best of luck to you tomorrow!  I had never been online before other with a chat group!!  You will love it here. 

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  • Gramof3
    Gramof3 Member Posts: 301
    edited July 2009

    Donna  I believe a PICC line is run through your arm veins, while the port is run just below your collar bone up and into the jugular vein.  There is a thread (check out chemo treatments forum) that explains the two.  This may be too late as I didn't check posts over the weekend.  Good luck as you begin your treatment...you'll find lots of support here.

    I'm disappointed, but not surprised.  I was unblinded today and I was in Arm A--not surprised as I had absolutely no side effects that indicated I was getting the Avastin.  Soooo I'm on to the Zometa trial! 

    Hope everyone is having a quiet evening.  Take care.  Helen

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  • carolynf
    carolynf Member Posts: 262
    edited July 2009

    Hello ladies,

     I haven't posted for a while and was just reading some of the threads and its amazing how many have finished and how many have started on this journey.  I am heading to Boston on Thursday for the 3day, 60 mile Komen for a cure.  I can't believe how close it is.  I hope to see lots of survivors there and to do some networking w/them.

    Welcome Donna.  I see you are around the corner from me!  My onc used to work at Dana Farber and is now in York ME.  I had a port after speaking w/the nurse who was going to be giving me my treatment and she told me I had good viens NOW!  So I had a Bard Port installed.  My cousins wife who was also TN got hers thru the vien and wishes she would of had a port.  I would highly recommend the port if you will be having the DD and 12-Taxols.  I thought the port made things much easier but I can't talk for everyone.

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

    Helen, bummer on being in Arm A but best of luck to you in the Zometa trial!!

    I wish now that I would have had a port.  Its been a nightmare for me with my veins!!

    Have a wonderful day all! 

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  • TexasRose
    TexasRose Member Posts: 740
    edited July 2009

    Being lazy here and just reposting what I put on my chemo thread. They wanted to check my iron levels because my hemoglobin was low. 8.8 and they don't want it below 9. Onc said we would go ahead with treatment though.

    **

    Hi all,

    First Taxol went pretty well. I was at the hospital forever though. They asked me to come in early so they could run more lab work and check my iron levels. Onc added an iron supplement even though my lab work came back that my iron is fine. I had to wait on lab results, wait on appt with onc, wait on orders to come through and wait on drugs to come. Waiting is not something I am good with! And this was my first chemo I did without Xanax. For all of my AC, I took a Xanax the day of chemo to keep my blood pressure down. Today, we decided I better not take one because of the Benadryl. I would be a zombie!!

    Anyway, I feel pretty good. Tired, but I feel like the steroids and the Benadryl are fighting it out. I'm tired, but I can't sleep. LOL  Onc did warn me there might be bone pain and asked if I still had any Vicodin left from my surgery. I do, but I will only use it if it's really, really bad or at night if I can't sleep. Glad to have one down, 11 more to go!! Ugh...that sounds like forever but it will go fast.

    Forgot to mention I think that I went to the boob store yesterday. A very interesting experience. I am a 34 to 36 band. A or B cup, mostly B. The fitter started out with a 40 bra with a cup that Dolly Parton couldn't have filled. My mom and I just busted out laughing. We went down from there but never really found a bra that fit well. She tried one on that was a pretty good fit but was an A cup and still a little large. She is going to order one in a AA and we think that will fit well. Should take two weeks to come in and she doesn't want to fit the foob until we fit the bra, so I am still the unaboober. I have no idea why the fit is so different from my old regular bras. She said it had something to do with the fact that I have a lot of muscle there and also because my boob hangs low. Well. of course it does. I'm 47 freakin' years old!!!   

    Hope everybody is doing well! Love and hugs!

    Mary

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  • TexasRose
    TexasRose Member Posts: 740
    edited July 2009

    Donna- I have a very love/hate relationship with my port, but there is no way in hell I would go through this without it. If you get one, be sure and ask for an Rx for some EMLA creme. You won't feel a thing when they access it.

    Helen- Sorry about the placebo. But that is just as important to the study. You played a vital role. Hugs!

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