Clinical Trial E5103

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  • brena
    brena Member Posts: 458
    edited June 2008

    Ladies,

    I was asked to do the breast ultra sound for tumor bed dimensions etc. not sure if just their part of their standard procedure or common practice. I also was told there would be a verification of their accuracy performed on a weekly basis, though not with an x-ray.

    SAD TO SAY LADIES...another nail bit the dust!Yell only another possible 5 to go....more bandaids...you think the maker of taxel is also the stock owner of "Band-aid?" they could be in cahoots

    A little information on Reclast, keep in mind zoledronic acid (Zometa) is marketed as Reclast by Novartis. Can't find anything on Fomesta, is the spelling correct?

    http://www.fda.gov/medwatch/safety/2007/Aug_PI/Reclast_PPI.pdf

    http://www.redorbit.com/news/health/922847/onceayear_bone_drug_infusion_reduces_fractures/index.html?source

    I will be randomized into the following trial on Friday resulting in one of three bisphosphonates:

    http://theoncologist.alphamedpress.org/cgi/content/full/11/suppl_1/13

    http://www.cancer.gov/clinicaltrials/ft-SWOG-S0307

    Gotta go to rads,

  • S3K5
    S3K5 Member Posts: 606
    edited June 2008

    Hi Ladies,

     Just caught up with the posts.

    Brena, sorry to hear about your nails. I hope they all grow back soon. Thanks for the info on Reclast. I'll ask my onco next week.

    I have been out for the past few days - just sick and coughing! It looks like upper respiratory infection. Will be seeing the pulmonary specialist on Monday. I hope I can get thru this weekend! I seem to be the 1% of the patients who get all the 'rare' side effects! Lucky me!

    Take care,

    Desi.

  • brena
    brena Member Posts: 458
    edited June 2008

    Carol,

    Sorry to hear your still not feeling well, did the cough turn into the respitory or did you catch something else? Your next shot is due this coming week, is there a chance they may postpone it ifyour not feeling better?

    What other SE do you have going? Are you resting?

    sending you some hot soup,

    brena

  • brena
    brena Member Posts: 458
    edited June 2008

    Teresa,

    Are you packed for that trip to vegas? who are you traveling with? I hav enever been to vegas and will some day make the trip. Have lots of fun and let loose.

    Will tell us when you get back.

    smiles,

  • brena
    brena Member Posts: 458
    edited June 2008

    Teresa,

    Are you packed for that trip to vegas? who are you traveling with? I hav enever been to vegas and will some day make the trip. Have lots of fun and let loose.

    Will tell us when you get back.

    smiles,

  • cjw
    cjw Member Posts: 42
    edited June 2008

    dear all

    I think the other name for reclast is zometa ( I must have made up the name fomesta:).  I think I might be on the placebo for avastin as I basically have had no side effects at all after my first treatment, other than being tired for a day and a half. Do the SE get progressively worse (I have only had one round and am due for another one this week).

    Brena, how did you get into the clinical trial already, are you done with the other chemo?

    Carol

  • brena
    brena Member Posts: 458
    edited June 2008

    Carol,

    You are correct Reclast=Zomeda. I will see my Trial Nurse today and will ask her if there are any other Bisphosphonate trial being performed. I should be randomized into S0307 Bisphosphonate trial today, Nurse was not in on Friday.

    My Onc and Clinical Nurse told me about trials with Avastin (we are on) and S0307 Bisphosphonate trial at consultation. I agreed to both trials; however, S0307 would not be starting until completiona of chemo. I will be doing radiation and S0307 simultaneously.

    After my Dexa scan showed mild Osteopenia any of the drugs drawn will help. Each of these drugs do not go without SE's but will only be given for three years in the S0307 trial. The SE's appear to be less than chemo and I am willing to accept. I recall reading that Bisphosphonate drugs stay in your system forever, I will ask and do a little more homework. Regardless of what I find I will not change my decision.

    I will let you know if there are other trials but if you are interested in this trial ask your Onc, the trial requirements are minimal.

    Trial S0307 hopes to show that Bisphosphonates may also prevent the development of bone metastases in newly diagnosed patients with no evidence of metastasis.

    take care,

  • carolynf
    carolynf Member Posts: 262
    edited June 2008

    Good evening all,

    Things have been hectic here!  Baseball/Sball is slowing down. No kids for 2 nights and I miss them...What's up w/that.  That's not normally me.  I enjoy lounging w/a good book.  Anywho, my daughter is coming home early from her friends camp tomorrow due to a scrimmage w/the Sr girls.  Their first district game is this Saturday at 2pm.  I was going to be a little bummed out if it was morning because it's the Strawberry Festival where there's a lot of local craftsmen and lots of strawberry shortcake/cheesecake.  So, it looks like i'll be able to go w/my mom.  I have to drive back up north on Thursday to pick up the boys. My youngest is done baseballTongue out Today at rads they told me I need to come in a 1/2 earlier to get my boost planning done...that means I am getting closer to being done w/rads.  Tonight at midnight will be my 1/2 way mark.  Can you tell i am counting.  No SE's on this except for this wierd sensation  where lymphnodes were taken out.  It's hard to explain.  My girlfriend has the same feeling that comes and goes (she's almost done rads).  I try to use a cream they gave me every other night.  when I am at the pool I use 30SPF and throw a tshirt over that area.  No burning so far or peeling.  All is good. I did get a little itchy which they said the use hydrocortison and the next day it was fine.  I will get 8 boosts.  For those of you on chemo you may want to purchase some saline solution for your nose.  That was one of my biggest se's.  Nose bleeds and runny nose.  Using the saline solution helped me tremendously.  No mouth sores due to sucking on ice while receiving the treatment. 

    Brena, you were right about painting my fingernails!  They match my toes and look much better. I hope yours come back in fast.

    Carol, the 1st treatment wass a breeze (at least that's what i told my onc).  I don't think i started feeling the real effects somewhere between 2nd and 3rd treatment and yes, it got worse as in stomachitess (my version).  My stomache just felt off. Not all the time but a lot.  I also GAINED after treatments and onc said it was due to getting 5lbs of fluids.  I have not lost that weight and have not had the motivation to go running, biking or anything.  I have been gardening and that wears me out. 

    Enough of the book writing.  Keep smiling to all and time will fly by before you know it!

    Carolyn 

  • brena
    brena Member Posts: 458
    edited June 2008

    Carolyn,

    I appreciate your schedule on the refrigerator, I can hardly keep up with your weekly activities...Gosh. Don't forget to take some down-time for yourself.

    The Strawberry festival sounds wonderful, eat a piece of cake for me. Good luck with the district games, tough but exciting to watch so do enjoy.

    Glad to hear your handling the rads with no SE's and may it stay that way. Are you still feeling fatigued?

    Desi, Henson & Carol,

    Dido on the nose bleeds, regardless if you are receiving the Avastin or not you might experience the nosebleeds (highly likely.) I hate putting stuff up my nose but the saline solution helped a little but did not stop the bleeds. My chemo symptoms started between the 2-3 round and then went downhill.......but I survived contrary to my thoughts at the moment. I understand there is a maximum dosage of Adriamycin that you can have and I understand why who in the _ell would be willing to take it again.

    I am feeling so fatigued its not funny and i even took a rest this afternoon, definitely not me. I have modified my bike ride to late afternoon to avoid the heat and getting more tan, getting to dark. I am hoping that keeping up with my exercise will decrease my fatigue, not sure its working.

    Summer has officially started, last Wednesday I got bit by a tick which was carrying the bacteria for lyme disease, I developed the bullet-eye rash on my R. foot. Went to the docs today and now get to fast for 12hrs to take a blood test, then I get more antibiotics twice a day for three weeks. Remember I just got of off antibiotics which I had taken for 30 days. I swore no more antibiotics, damn I cannot seem to get away from them. I should be fine after taking the meds, just not a good time if there is such a thing.

    No SE's from the rads, better stay that way......yeah right! Anyway the reason for the breast ultrasound is to determine the dimensions of the tumor bed, when a boost is received the dimension of the bed are critical the tumor bed is shot with a photon beam instead of electron beam. Carolyn you may be asked to have the same once you get closer to the boost.

    take care,

  • carolynf
    carolynf Member Posts: 262
    edited June 2008

    Hello ladies,

     Brena, I don't know how you bike ride everyday!  I used to be an avid biker when I lived in Hawaii.  I need to get my bike tuned up  (said this for 2yrs now) and start back up.  It's more enjoyable than running.  You also are having some luck there w/antibiotics...poor thing.  I hate ticks.  I guess this Friday is when I will have that ultrasound.  I guess they call it boost programing or something to that nature.  I still get tired.  This week I have already worked 3 days.  I am taking tomorrow off to pick up boys at camp.  I will work Friday since I have a lot of appointments.

    Hope the rest of you ladies are taking it easy and not working to hard.  I agree w/Brena, things got more tiring the farther long on chemo.  But everyones different.

    Take care,

    Carolyn

  • brena
    brena Member Posts: 458
    edited June 2008

    Carolyn,

    You are having the breast ultra sound in preparation for the boost, correct? Mine is scheduled for tomorrow just before rads.

    Have you got back on that bike again....please tell me yes.

    What color did you decide on the nails?

    How is your skin, any peeling or redness?

    So far my skin is fine. My new anti-tick meds made me nausea the first day, lots of do-nots with the meds.Hope you can have wine with it because that is what I am drinking along with cheese and crackers!

     I was randomized into S0307 and will be receiving a daily horse pill of Clodronate. Visit the Onc next Thursday for my supply of pills, bloodwork and normal checkup. I was considering getting my port removed; however, if I need bloodwork every month for 6 consecutive months for the new trial I may not have the port removed. I would like to minimize the qty of stick to the one good arm.

    Have any of you ladies considered allowing blood drawn from the arm nodes were removed?

    I am finely feeling closer to the "new normal" than have in the past several weeks/months. I now realize that I will never return to the "old normal" and trying to find it will only set me up for disappointment.

    I am off work until Sept. 2nd, plan on getting things done around the house with hope to sell next year. Am finding that I am tired by mid afternoon and need to rest for 30-60 minutes even if don't sleep. Am still taking sleeping aid some nights, might skip them tonight and rely on the wine.

    Nurse took photo of my fingernails, they are such a mess and falling off. She said this is a little more than normal reaction to Taxel. Hey, eyebrows are coming in dark not ready for the plucking but almost.

    Desi, Henson, and Carol,

    Please don't jump to conclusion on weather you are getting Avastin, the symptoms of A/C and Avastin can be similar so may mask each other and when you throw Taxel into the mix it can get more misleading. Carolyn, Teresa and I had similar symptoms and some different. Carolyn and Teresa received the Avastin and I the placebo, so don't make assumptions because there is no dead give-away. Think of it as a surprise.

    Let us know how your sessions are coming along.

    cheers

  • brena
    brena Member Posts: 458
    edited June 2008

    Teresa,

    Hope your having a great time and winningWink Welcome back!!

  • ekenny315
    ekenny315 Member Posts: 68
    edited June 2008

    Hey gals,

    I'm in this trial as well - this is my 2nd tx with AC + Avastin/placebo (Dose Dense) , 2 more tx of AC+ then onto 8 Taxol+ (every week) and 3 Avastin(Maybe). I was curious, when did you start to get the bloody nose, how far into treatment were you when you experienced your side effects? I feel pretty good - hair's gone, hot flashy, heart burn and little nausea. This treatment seems better than the 1st one. Hope to here some responses. I'm home by myself today with no kids! LOLOL

  • HensonChi
    HensonChi Member Posts: 357
    edited July 2008

    So what was the answer about having blood drawn on the side where the nodes were removed.  Is that OK to do.

    I am counting down Tuesday the 1st is when I start chemo...I am in the trial too.  I have a wedding this weekend and then back to start chemo.  I am glad to hear that not everyone has terrible side effects! 

  • brena
    brena Member Posts: 458
    edited June 2008

    Henson,

    U should not have blood drawn from the arm that nodes removed according to most of the documentation that I could find. Without having a port I am thinking the good arm may get stuck so frequently that eventually might have difficulty in drawing blood.

    Would like to know what are the risks? I understand that Doctors have different points of view on the Lymphedema, some agree and some do not.

    Did you have nodes removed?

    Are you nervous about your 1st round of A/C? Is someone going with you or are you going solo?

    take care,

  • brena
    brena Member Posts: 458
    edited June 2008

    Erika,

    Welcome to the E5103 group, we are growing by the week and am glad we have each other. We share the same group of meds, dosage and frequency and hope because of this trial. Carolyn and me are the book writers as we do get long winded sometimes. Feel free to ask questions this is where we are:

    Carolyn, Teresa and me have completed chemo of which Carolyn and Teresa moved on to   Group D to receive 10 more injections of Avastin.I received the Placebo so I did not continue; however, their results (w/Avastin) will be compare to my (wo/Avastin) results.

    Carolyn and me are currently going through radiation, I believe she is 7 sessions ahead of me? Teresa will not be doing radiation as she had a mastectomy and is in Las Vegas hopefully winning big or at least having a blast loosing.

    We have some history under another heading then moved the discussion to this "Clinical Trial E5103" to keep the discussion more focused and specific. If you go to the 1st page of this heading you should see reference to another heading to see some of the earliest chat. 

    Now that I have babbbbbled long enough I would like to welcome you the group and we are glad you found us. As you already know this website is great and we definitely need each other, sounds like you also have a great support function...fantastic!

    If you don't mind I would like to ask you some questions that I could not find in your profile.

    What state are you residing?

    Would like to know about your first tumor diagnosis, when? what drugs did you receive? age? do you have mets? Did you find the first and 2nd tumor or was it identified by mammo? Sorry to see you are also a triple neg, was your first tumor also 3-?

    All of us are hoping this trial makes one heck of a difference in the scientific research in BC. Thank you for taking part in this trial, it is not an easy decision because there are some personal sacrifices but together we will make a difference to other woman!!

    In your photo it appears you have two sons; Ryan and who? they are absolutely adorable and the photo is very clear.

    See I ask a lot of questions hopefully not invading your space.  Enjoy your day of quiet as I remember those precious moments.

    cheers, 

    1. S3K5
      S3K5 Member Posts: 606
      edited June 2008

      Hi Ladies,

      I finished 2nd A/C on 13th June and my third is tomorrow. I have developed chemo induced cough - which was mistaken for pneumonia. I have bronchio dialators to improve breathing. This helps.

      Brena, you are right. There is no way to know if anyone is getting Avastin or not. The SE are very similar. Glad that your radiation is going smooth. Sorry to hear about your tick bite and antibiotics all over again! But I guess it is better to prevent future complications with the lyme disease, etc. I hope your nails grow back quickly. I really admire your patience to write detail blogs! It is informative - keep doing it. I read every one of them.

      Erika, welcome to the group. As Brena said, this is a very informative discussion. No surprises with the treatments! I am glad your first two sessions went off very well. I wasn't that lucky. After 2nd AC,  by day 5, nausea hit me and then I couldn't keep food down for 48 hrs. Then I had cough  and breathing problems! Today is my first day feeling better and I get the 3rd treatment tomorrow!

      Henson, please check with dr before getting blood drawn on the arm with nodes taken. There is so much information about lymphedema - hope you will do some research on this. I have been told by my surgeon not have BP taken or blood drawn on the rt arm (where I had nodes taken). Good luck with the first chemo session. Just so you know - the first treatment is usually not too bad (even for me!). Get your onco's cell # and call if anything gets unbearable! Keep some popsicles handy during infusion (the nurses will tell you they don't work - but they do help!)

      I have the same question as Erika - when did you ladies get bloody nose (how far in the treatment?) I know everyone is different but I was just curious!

      I take Emend and Kytril the first three days but then on day 4 and later they gave me Zofran which doesn't do much. I am sick of feeling sick! I will ask my onc to give me something for my nausea, even if it knocks me out!

      Take care everyone,

      Desi.

    2. HensonChi
      HensonChi Member Posts: 357
      edited July 2008

      Nurse just called me to say the drug has arrived.  She changed the date to July 2nd for some reason.  They told me they were going to try without a port...I will let you know how it goes!

    3. cjw
      cjw Member Posts: 42
      edited June 2008

      dear all

      Just had second AC treatment today. Hair is starting to fall out--question for the experienced ones--how long does it take to fall out? I have an appt tomorrow to get head shaved and wig, or should I hold off another few days???. Distresses me more than I thought it would.

       I was told to NEVER get blood/bloodpressure in surgical side again as that will increase lymphadema risk. Also---I am getting a lot of drugs for anti nausea and (so far) they seem to work..I have 3 different ones...compazine, emend, lorazepam (this one only at night). I take them for the first 3 days after chemo. I also take protonix. These all have generic names too.

    4. brena
      brena Member Posts: 458
      edited June 2008

      Desi,

      Drinking wine while I chat so if I start to not make sense you know why, will edit it tomorrow. I looked back over my notes and it appears I started to have nose bleeds right around the 2nd round of chemo.Once in a while the nose would just start to bleed for no reason but most of the time it occurred when I blew my nose even when done ever-so lightly. Annoying SE so keep tissues handy when and if you experience this SE. I believe Teresa had the most frequent and longest nosebleed out of us three, Teresa said they stopped shortly after ending the Taxel. So you see the A/C, Avastin and Taxel each or incombo can cause the nose bleed.

      I did not take any anti-nausea meds, only given in IV prior to chemo. I had very little nausea never worth treating with anything else. Now when you want to talk INSOMNIA that could be a long conversation because I can just beat that issue to death! I hope none of you have to deal with sleep problems, beware it is a common SE since they pump you with steroids just before the A/C and Taxel.

      You are the first that I hear to have a chronic cough with this drug, I am sure not the first but I have not heard of before. I hope the dilator work, keep us updated. Has your Onc seen this cough in other patients with A/C, Avastin or other drugs you are taking? does your Onc expect your cough to pass or will you experience through the entire treatment?

      Hair loss for me at day 18 enough to shave the head, each of my kids took a turn and we took pictures. Onc said maximum of 20 days after first round of A/C before hair loss, he was correct. It was winter for me so I wore stylish hats then when weather got warm just went topless...still topless damn hair won't grow in several spots. And yes I am being patient but come-on its been two months.

      3rd round tomorrow, congratulations you are on the home stretch. Let us know how you are feeling and what SE's you experience. You will soon be leading others through their BC journey.

      21 miles on the bike today.........before drinking wine otherwise I would still be along side of the road. Rash (tick bite) on the foot is still spreading, will call doc on Monday if it does not start to clear. I do NOT have a rads session on Friday July 4th, a true celebration!!  Breast is showing signs of rads; tight skin, redness, little aches but all bearable. I got my dates mixed tomorrow is my breast ultrasound.

      So what is everyone doing for the 4th of July? me...not cooking a thing. I cook and plan a huge family party each Memorial Day.

      take care,

    5. brena
      brena Member Posts: 458
      edited June 2008

      Henson,

      Carol is correct do not have blood drawn on side where nodes removed unless approved by surgeon. My question, has anyone been told that it is ok to have blood drawn and BP taken on the side with nodes removed?

      Not sure about having drugs put through the vein, did they say why? I am also confused or to much wine (na) do you have a port installed? if so, why are they not using it?

      Celebrate the completion of each chemo round even if celebrated in a small indulging fashion.

      done writing for tonight (tomorrow will review what I wrote),

      cheers 

    6. HensonChi
      HensonChi Member Posts: 357
      edited July 2008

      They just said the veins in my one good arm looked good so they will try that first...they will watch and then switch to a port if necessary.  Hope it works!

    7. ekenny315
      ekenny315 Member Posts: 68
      edited June 2008

      Hi Brena;

      Thank you for that wonderful welcome. I would be happy to answer any questions, & i will update my profile as well.

      What state are you residing? NYSWould like to know about your first tumor diagnosis, when? I got pregnant in Feb 08, felt a swollen lymph node under R armpit in march 08. Got a sono/mammo(found 10:00 mass in right breast that i could not feel)/needle biopsie and core biopsie confirmed breast cancer. I am 36 years oldwhat drugs did you receive? Just started chemo on June 10th AC + Avastin/placebo x4, them taxol for 8 weeks dose dense. do you have mets? 16/22 nodes positive. stage 3 grade 3/3 poorly differentiated.Did you find the first and 2nd tumor or was it identified by mammo? Was your first tumor also 3-?  i don't understand???My children are 3 - Erik & 4 - Ryan, My Dh is Christopher (the love of my life!)I don't mind the questions, never feel like your invading - it helps me to learn more about my BC I am enjoying yet another day of quiet. My cousin brought my kids to the beach club, & i will meet them there later on. 


    8. brena
      brena Member Posts: 458
      edited June 2008

      Erika,

      Thanks for the information on your stats. Sorry for the confusion on my question the "first tumor" were you diagnosed with BC prior to March 08? If so, was that tumor a triple negative? If my math is correct that would mean you are currently pregnant? Did you have lumpectomy or mastectomy? Did your BC spread to your internal organs (mets) such as liver, bone etc.? I know more questions, so sorry.

      Your are the youngest to join this thread, very sorry to see 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?)

      treasure yet enjoy another day of solitude,

    9. brena
      brena Member Posts: 458
      edited June 2008

      Ladies,

      A lesson learned by me and sharing with you so you can avoid.

      I had my breast ultrasound today and they could not determine the size of the tumor bed, it had filled in with scar tissue except the very top of the tumor was filled with fluid. Will talk with Rad/Onc on Monday about the speculated dimension they might use, there is another test that can be performed in addition to the ultrasound if the Ultrasound dimension is not reliable. Current depth dimension given by Ultrasound is overstated because its exactness could not be determined.

      My lumpectomy was in Oct. 07 and I did not have an ultrasound to determine the bed size and I was not aware one would be needed. Also did not know to take most recent mammo so it could be compared to current if they could get the dimension.

      Note:If you had a lumpectomy ask about getting your ultrasound ASAP after the surgery not waiting like I have done. The lumpectomy scar is healing (since off chemo) so nice I would like to think in another 8 months you would not know I had surgery.

      The fun has begun: my left breast has swollen so the angles to shoot the beams were off, so again verifications which takes twice as long the hard table. I offered to skip todays treatment and try again on Monday as the swelling may go down, yeah right. Glad its Friday cause the boob is sure ache, I wonder if I look lopsided?

      time to get some tasks done,

    10. brena
      brena Member Posts: 458
      edited June 2008

      Carolyn,

      How did you make out with your breast ultrasound? any problems as I mentioned in my earlier post?

      Happy Friday to you,

    11. PinkVelvet
      PinkVelvet Member Posts: 64
      edited June 2008

      Ladies,

      I need some advice.  My onco scheduled me to start chemo on Tues. 7/1.  He told me about the clinical trial E5103 and I was interested in participating.  The research nurse works part-time and it's been hard to reach her and get my questions answered.  I finally decided to participate and signed the consent form.  She told me that there's no way that I would be able to start chemo next week as I need to have some blood work, she needs to randomnize me, and then she has to send for the drug. I rushed around yesterday to get some blood work done.  The research nurse talked to my onco office and a doctor was going to send orders to a hosp. nearby so I could get blood taken (my onco and several other docs from that office are on vacation) - when I got there the hosp. didn't have any orders so I couldn't have my blood drawn.  I just had my port placed the day before and was very sore, which added to my crankiness.

      I feel extremely frustrated that I didn't know this sooner so I could have taken care of everything and proceeded as planned.  I have adjusted my work schedule and have prepared myself mentally to start on Tues.  I could rearrange everything in my schedule (although in doing so, I won't be very busy next week which could lead to worrying and obsessing about the chemo to come) and change the start date but for some reason, this seems very difficult, emotionally, for me to do. Part of it may be related to the overall lack of control when dealing with cancer, so to be able to start when I was expecting feels empowering to me.   

      I'm really struggling with what to do - - - part of me wants to drop out of the study and start chemo "as planned" on Tues.  The other part wants to wait and participate in the trial - it will only be about a week delay, which in the big scheme of things is not a big deal.    

      Does anyone have any thoughts, advice on what to do.  I appreaciate any input you could give me. 

    12. Binney4
      Binney4 Member Posts: 8,609
      edited June 2008

      Hello, all,

      Just popping in here to provide a web site for those looking for lymphedema information. The National Lymphedema Network has Position Papers on:

      Risk Reduction,

      Air Travel,

      Exercise,

      all of which can help you avoid this distressing treatment side effect. They're here: www.lymphnet.org. Briefly, all of us who have had bc surgery are at risk for lymphedema, and the risk remains for life. Tongue out The currently accepted statistics are that between 30% and 40% percent of us who are now in treatment will eventually develop arm lymphedema (though many of our doctors are not aware of this). The statistics for chest/breast lymphedema (which is called "truncal lymphedema" if you want to look it up) are less clear, because it is so often misdiagnosed, but the concensus seems to be about 20%.

      The good news: there's effective treatment available to help reduce the swelling and keep it under control! Smile And the sooner it's diagnosed and therapy started, but happier the outcome.

      Please be well, all!

      Binney 

    13. HensonChi
      HensonChi Member Posts: 357
      edited July 2008

      Hi, I am starting on July 2nd now...it took 10 days to get the drugs for the clinical trial. They also have to do chest xrays, and blood work.  But your nurse is right...it takes time to get the drugs!

    14. brena
      brena Member Posts: 458
      edited June 2008

      Pinkvelvet,

      I am sorry to hear of your frustration and believe me I can relate. I was patient number 5 to enter this trial and I also had to wait two weeks for the trial to open to be randomized. I was anxious but new the trial is so important to future woman, myself and our daughters and granddaughter especially if they are lymph node positive or high risk as myself as a triple negative. I have a clinical nurse who is full time and still has a very demanding job to cover multiple locations with different trials, what a rewarding job and so dependent on future BC research.

      I can hear the anxious in your voice and can relate to the eagerness to get started and it appears you know another week will make no negative impact in your treatment. You are on the start of the emotional roller coaster and it extremely hard.

      I would like to suggest you make a list of things that have to be completed, who is responsible and their phone numbers. Keep on them everyday to ensure they complete their responsibility at getting you into the trial. I have had to do actually this to complete what was necessary, am now in my 2nd consecutive trial with E5103 being my first. I felt being in this trial was important to me to wait the extra two weeks to start E5103 (trial was not open yet,) I was determined to step-up and make a difference!

      There should be backups to the nurse and doctor to give direction and write scripts for blood-work and anything else dictated by the trial. You should find out who the backup people are, I have had nurse's complete forms for blood-work and stamp with Dr. signature in their absence.

      I would like to suggest you wait but it is definitely your choice and what your experiencing is one reason why women don't participate in trials. If you decide not to participate I would like to suggest to you to let those who helped determine you none entry be made aware.

      Me and the rest of this group will talk with you everyday if necessary to get you to your first round of chemo if that is what you need from us. What state do you reside?

      May your journey be smoother than your start,

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