Clinical Trial E5103

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  • S3K5
    S3K5 Member Posts: 606
    edited July 2008

    Hi Ladies,

    Brena and Carolyn, thanks for the reply. I had my first Taxol on Friday (July 25th) and still have nausea today. Zofran seems to help. My main problem is stomach burn - really bad. I take Protonix,Pepcid, Maalox, but nothing helps. Did anyone have this problem?

    Fatigue is catching up - may be my counts are low again!  Food has become a problem - can't taste or eat anything. I know, if I eat, my energy level will be better!! Between nausea and stomach burn, food is the last thing on my mind !!

    I am glad everyone did okay on Taxol without neuropathy! I hope I will do too. Haven't found energy to step out of the house or even get on my stationary bike! Any tips to gain energy?

    Take care,

    Desi.

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  • carolynf
    carolynf Member Posts: 262
    edited July 2008

    Hi Desi,

    I did get some heartburn and took prilosec.  Only happened for a week or so.  The prilosec did work for me.  In regards to not tasting anything....boy do I remember that.  Your taste buds will get bettter. My tongue was a mess for quite a while.  Ice cream was about the only thing that really felt good on my tongue. 

    I still have fatigue.  I don't think its as bad as when I started chemo.  I would like to get some of my energy back.  They say that exercise helps but its getting to do it that I need help with. I end up napping instead.  Its been 2 weeks this Thursday since my last rad and I hope to start walking/jogging again.  I have been in the pool but don't have the stamina to do the laps, or breathes.  Make sure you are drinking plenty of fluids.  This does help.  Well, I am going to go relax before hitting the hay.

    Take care,

    Carolyn

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited August 2008

    Hi Everyone,

    Well I don't know where to start so I will just begin and see where it takes me...

    First of all, I got the results back on my bone scan last friday....it was clean.  What a relief, I still have pain in my hip but I can live with that.  When I had the scan that weds. the tech came in at the end, real nice lady, and said she wanted to do a close up on my pelvic area.  Well, I started crying and asked her so did you see something that makes you want to do this she said the only reason was because in case the dr wanted it I wouldn't have to come back...I told her ok then I said you know even if you did see something you wouldnt tell me anyways..lol....well when I got done she said I could get fired for this but it looks very good to me, so don't worry.  I could have kissed her lol.

    I just got home from pensacola, fl thursday.  I went out there on Monday.  The weather was wonderful, very humid but great.  We couldn't swim in the ocean though....thousands of jelly fish lined the coast, they say because of the hurricane.  but we had a great pool and the bay to swim in so it was ok. 

    I read all the posts and to kind of jump in, I know my answers are a bit late but I also had no neuropathy to speak of and I don't remember who made the comment about "bring the taxol on" but thats exactly how I felt.  By my 4th A/C I was so sick I was happy to start something else.  I had a much easier time with the taxol.  My nails are still trying to recover and I haven't lost anymore. 

    Monday I have my 4th Avastin treatment.  I am going to talk to them about getting aloxi for nausea ONLY if I can have it with out steriods.  I have had enough of that stuff. 

    My hair is coming in thick and there is soooo much gray its making me want to scream.  Everyone just thinks it looks great but I'm coloring it the first chance I get lol.

    So anymore info, Brena on that cruise????  I'm going to SF in sept.  I just started worry about all the flying I'm doing, I don't want to get lymphadema but so far my arm is doing good. 

    Well, that about sums everything up...I'm sure I missed a bunch of stuff I wanted to tell you all.  And to those of you that are new, welcome to the group. 

    Oh and Brena, thanks for clearing up my number....so does that mean thats the number I am in the trial through out the united states or just here in kansas?

    Hope everyone has a great weekend,

    Teresa

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  • S3K5
    S3K5 Member Posts: 606
    edited August 2008

    Hi Ladies,

    Finished #2 Taxol yesterday. So far, it seems okay. Some nausea and stomach burn. This time I got Emend tabs. Hopefully this should work. They also added Tagamunt in IV for stomach burn.

    For all those who are going thru Taxol or completed it - when did your taste buds return? Also, with the nail problems,  did anyone try Tea Tree Oil or any other preventive measures? If so what worked or dimished the problem? My nails are 50% blackened with AC and looks ugly. I don't know what Taxol will do to them! My palms and feet are darker color and have dark brown spots. The dr said this is common - specially since we have darker skin (asian). I don't know when they will look a little normal!

    Carolyn, thanks for your reply. I had fatigue on day 3-4 and then it got a little better. My counts are on the lower end and the doctor's office is trying to get insurance approval for Procrit or Arnasep for my hemaglobin, RBCs. Hopefully, with this my energy level will be better! Due to low counts the dr doesn't want me to go back to work yet and I have no energy to drive 25 miles each way!

    Take care,

    Desi. 

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  • brena
    brena Member Posts: 458
    edited August 2008

    Ladies,

    Need your support, I don't feel I have provided Mary with the answers to her questions. Would each of you add any information that you have about Avastin. I will assume she has not made a decision yet.

    thanks for your input, 

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  • brena
    brena Member Posts: 458
    edited August 2008

    Desi,

    Glad your a little better this round and hope you get your necessary drug approved for additional relief, let us know how you make out. Please keep an eye on your white counts and keep distance from those that are sick.

    I used Tree Tee oil in the later part of getting Taxol, I was willing to try anything to get relief. The fingernail beds turned more black, raised from the nailbed and 5 fell off or split. I lost two large toenails (most common) which are still growing. The tree tee oil did help, actually burned a little but did see a difference maybe just a coincidence? I tried many over the counter, home and suggested remedies and nothing even slowed the nail problem, just the Tree Tee oil. It is possible others had remedies that worked for them but again not for me.

    If anyone has a remedy that worked please share with Desi and others.

    I also had several nails get infected but couldn't tell because I had nail polish covering the nail, did remove it later on see I could keep a closer eye. Had two separate nail infections that were painful and required 2.5 weeks of antibiotics. The severity of the problem will vary by person and as you can tell we survived, ugly nails but survived. Each of us have noted the nails are recovering very slowly but there is progress.

    Note: TAXOL HAS A MIND OF ITS OWN AND I FOUND NOTHING THAT STOPPED IT!!!Yell

    I also had a recorded side effect of darkened hand and foot when taking Taxol, Onc called it hand-foot syndrome (not the cow disease.)

    stay rested and keep away from sick people

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  • brena
    brena Member Posts: 458
    edited August 2008

    Ladies,

    Except Teresa and Carolyn:

    Has anyone developed a red rash on their hands or arms? if you do please let us know.

    smiles,

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  • brena
    brena Member Posts: 458
    edited August 2008

    Teresa,

    Glad to hear from you, and that you had a good time in Florida despite the jelly fish you definitely don't want to tangle with them. Did all your kids go with you?

    It is WONDERFUL to hear your scan came back negative and nice to know pain is just that..pain. Unfortunately one of many tests that will give panic attacks for sometime. Hang tough you are not alone by any means!!Wink

    If I had to continue on with Avastin and take steroids with my Insomnia I would of had to back out of the trial or take up residence at the psycho ward. May still do the latter one.

    Yes you are number 29th person in the world (think trial is open globally) to be entered into this trial, pretty awesome, huh. Me=5 and Carolyn=6. We have not identified persons with number 1-4 maybe someday they will find this thread. Do you remember what date/month you were entered into the trial?

    My daughter told me I should consider coloring my hair, with about 1/4 of an inch of hair on my head I am not sure what I would be coloring. I thanked her anyway for her suggestion. Might try some color mousse.

    Is the new house starting to feel like home? all unpacked?

    What takes you to SF?I have never been to California, I believe Desi and JenB live in California.

    The cruise is April 16-20 of 2009, the cruise is dedicated to BC survivors so everyone on board will have something in common. I am getting details and will post ASAP.

    take care,

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  • brena
    brena Member Posts: 458
    edited August 2008

    Teresa,

    World Travel Agency is agency sponsoring the Breast Cancer Survivor Carnival Cruise. The contact person, Shelly will not be in her office until Monday. I will contact her and get back to you with more information. Dates are leaving Miami on April 16th returning on the 20th: includes Key West and Cozumel Mexico.

    taking off for my bike ride,

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited August 2008

    Hi Everyone,

    Brena...I'm 29th in the world....wow.  I began treatment on Jan 14th and I agreed to the trial around the 2nd I believe. 

    I was born in SF and I just love the city.  My brother and his wife and possibly my sister are going too.  It will be lots of fun I'm sure. 

    I can't wait to get more info on this cruise.  So only survivors can go? You can have a friend or spouse go? 

    I am all unpacked and enjoying my pool. 

    Well, I will write more later....gotta run

    Teresa

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  • S3K5
    S3K5 Member Posts: 606
    edited August 2008

    Brena,

    Thanks for the info on the nails. My nails are blackened by AC. I am putting Tea Tree Oil. Let's see what happens - nail problems with Taxol seems common.

    It will be interesting to see what I am getting - Avastin or Placebo. Unblinding will be done after Taxol (10 more weeks to go). I have a few side effects of Avastin - higher blood pressure during the first week of avastin, continues runny nose plus the cough (could be due to Avastin). I am taking 2 mg of steroid every day for cough. It causes insomnia which is easier to deal with than cough!

    I hope your sleep pattern is getting better. What is the name/number of the new clinical trial that you are entering into? This is to prevent bone problems? I want to ask my dr about this.

    5 years ago, I used to live in L.A area (Southern California) -now moved to NJ.

    Thanks for all the info.

    Take care,

    Desi.

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  • HensonChi
    HensonChi Member Posts: 357
    edited August 2008

    Hi everyone...thought I would post an update.  I was in the trial and had one dose of the chemo..  Then my new hospital requested the original tissue from my underarm.  The hospital retested the tissue and found out it was Her-neu and so they switched me to herceptin.  I am grateful that they found that mistake and now I am on the right path (or I hope so).  I had a lot of mistakes done by hospitals and it has taken since January of 2008 to get on the right path.  I am now going to the second correct chemo this Tuesday.  I can only think that the one dose of the trial drugs may have helped and not hurt.  Anyway...good luck to you all!

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  • brena
    brena Member Posts: 458
    edited August 2008

    Carolyn,

    Check this website and any other lady that rides:

    http://www.amazonheart.org/

    Awesome and truly thinking about taking the ride!Cool, the blood is pumping just thinking about it.

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  • brena
    brena Member Posts: 458
    edited August 2008

    Henson,

    Glad to hear your on the right track, and it was nice to meet you and sorry it was under these circumstances. Please stop in and see us once in a while to tell how you are doing. Wish you a smooth journey with hugs. Keep moving forward.

    What chemo drugs will you be taking?

    cheers,

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  • brena
    brena Member Posts: 458
    edited August 2008

    Desi,

    Sorry to hear your nails are in bad shape, been there and feel for you! It is one of the nastier SE but does go away in time. Keep using the Green Tea Oil maybe it will truly help.

    This clinical trial is designed to investigate the use of bisphosphonates in patients with early BC. The trial will make a comparison among three bisphosphonates: Zoledronic acid, clodronate, ibandronate.

    Randomization is the name of the game, I drew the Clodronate.

    A couple of links for reading and the NCI website for the official details of SWOG-S0307:

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

    http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100364&title=Bisphosphonates+as+Treatment+in+Breast+Cancer+(S0307)

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

    Let me know if you join,

    I am going to make a new post to see if any other woman are or have taken Clodronate and their results.

    sleep is overrated!

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  • brena
    brena Member Posts: 458
    edited August 2008

    Teresa,

    SF to Kansas, help me with this one? Such a major difference in living environment. Have a wonderful time.

    I will ask about the spouse or friend attending the cruise.

    sleep deprivation,

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  • carolynf
    carolynf Member Posts: 262
    edited August 2008

    Hello everyone,

     Thought i hadn't posted in a while and needed to get myself going again.  I had military all weekend.  So it's already a long week.  I think I am getting more energy. I actually did 2 miles (walk/jog) on Friday.  It was pretty hot and humid.  I had either a SE from something...where my wedding band/engagement ring is.  I had wicked itching and took off the rings and I had a really RED rash. The skin had peeled away. I took my rings off and didn't wear them for a week.  The morning this happened, my hands were really itchy.  I am not sure if the 2 are related. My nails are looking much better. I think there are only 2 that look blah.  My hair is growing like wild fire.  I was told it feels like a chinchilla by a couple of people!  All i can say is that it is very white/grey/and tinge of brown.  Everyone likes it....I don't mind the length but I think I do need to throw a color in.  My nose has gotten better. Hasn't ran like it was.  I have had some aches and pains though.  Figure its probably the chemo lasting effects.  Need some WD40 for these joints. Sleep has its ups and downs.  Not back to the normal yet. Still taking lorazapam but not all the time.

    It sounds like everyone is moving on. Time goes by very quickly when you look forward to the next tx. 

    Carolyn

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  • carolynf
    carolynf Member Posts: 262
    edited August 2008

    Brena,

    Thanks for the website. I haven't done much riding lately due to the thunderstorms. It's been quite the summer. Maybe this weekend I'll go for a spin w/the hubby.

    I am also interested in the cruise.  Sounds like a good time.  Work is busy and its hard for me to take time off but I still do.  Well, got to get some work done.

    Carolyn

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  • jenniferb
    jenniferb Member Posts: 24
    edited August 2008

    Harbin (and Brena and everyone):

    Just wanted to let you know I was kicked out of the trial before I even started! I had my echo and ekg done last week and it turns out my LVEF is only 49% and they require 55% or higher to participate in the trial. It's weird because I'm a Pilates Instructor and own a movement therapy studio and exercise about 4 hours a day! And my blood pressure has always been 100/60 even through 3 pregnancies. So when the clinical trial director called to tell me they did not want me, I begged and pleaded but they can't take me. It's the rules of the study. So I'm off for new directions starting with a complete cardio workup this month and chemo has been pushed back until October or Novemeber if I get to do it at all. Harbin, I will miss meeting you at Stanford this Thursday. Right now I am doing 2 x week acupuncture and intense nutritional therapy and I will pray for all of you wonderful women who are so courageous! It was an honor even being a tiny part of this group. Best wishes to all.

    JenB 

    Dx 6/24/2008, IDC, 1.9cm, Stage I, Grade 3, 0 nodes, ER-/PR-, HER2-

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  • cjw
    cjw Member Posts: 42
    edited August 2008

    Dear all

    Sorry it's been so long since I posted. I am glad to see a lot more people are now on the trial.

    I have a feeling I am placebo since I havent really had any side effects other than a couple days of fatigue and queasiness which the compazine and emend seem to keep under control. I have treatment on Thurs and by Sunday morning am back to normal. I am still running, but a little less and a slower pace and even got some good tennis in over the summer. I am through the AC now thankfully--it did get harder as it went on, just knowing what to expect, but the actual SE were not any harder or longer. I also have a different sense of taste--nothing really tastes very good.

    Start the Taxol this week--any tips from anyone as to what to expect? Thanks all for sharing your experiences

    Carol

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  • ryjuem
    ryjuem Member Posts: 64
    edited August 2008

    Carol,  Some women in our wellness group at Gilda's saw the Taxol is a bit easier to tolerate than the AC.  They even got their sense of appetite/taste back.

    The fatigue has been bad for me, but I think it's due to an infection at the port site.  I went to have it checked today and nearly passed out.  They put me on IV antibiotic and fluids and it helped.  I go back tomorrrow again.  Hopefully they won't have to remove the port.  I'm trying to stay calm and relaxed but all these drugs are making me nervous.

     Anyone have experience with acupuncture?  I need to increase my relaxation strategies.

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  • brena
    brena Member Posts: 458
    edited August 2008

    JenB,

    Sorry your LVEF is at 49%, nothing to play around with so please have it checked. I understand that you have kept physically fit and sound like your quite healthy outside of the BC, there may be another medical reason for your low LVEF. I am glad it was identified and you have the chance to seek professional help before major damage.

    Please drop in once in a while and let us know how your doing and please take great care of yourself and it was my pleasure meeting you even if under ugly circumstances.

    Wish you a healthy and happy journey,

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  • brena
    brena Member Posts: 458
    edited August 2008

    Carol,

    Please don't count yourself out of receiving Avastin, there are people who do not receive SE that appear evident. Meaning, the symptoms or there lack of can be masked or you just don't get them. I had many symptoms of Avastin and received the Placebo so it can go both ways.I am glad that your able to get through the A/C with bearable SE's, this could not of been any easy challenge. DARN PROUD OF YOU!! Your taste buds might still be affected while receiving Taxol, have to wait and see so hang in there.

    What days will you be getting your Taxol shot? With Taxol the fatigue remained along with finger/toe nail discoloration, infection and detachment. Might suggest removing nail polish so you can keep an eye on your nails. Neuropathy is a common SE with Taxol; however, the three of us did not get any symptoms, getting the drug weekly may be making the difference. Definitely easier than A/C but not a cake walk.

    keep us updated on your progress,

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  • brena
    brena Member Posts: 458
    edited August 2008

    ryjeum,

    Were you having problems with receiving your A/C? any suggestions on what caused the infection? Am sure the antibiotics will work and you make a quick recovery and don't have the port removed since you are only halfway with your A/C. Is your support system still helping you out? not trying to do all your normal stuff along with fighting BC are you??

    I have no experience with acupuncture so can't help you with that, but this website does offer alternative therapy and I remember reading some posts. Scout around I am sure you will find some good information. Definitely find something that works for you. Yes, these drugs can be overwhelming when giving thought to what they are doing to our bodies, but absolutely necessary for longevity. Only you can find what relaxation method works for you so keep trying. I found bicycling to be my method of relaxation, never considered it before BC.

    take care of yourself,

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  • brena
    brena Member Posts: 458
    edited August 2008

    Carolyn and Teresa,

    Still have not hear back from our contact for the cruise, will call again tomorrow. Been an xtra busy week for me this week and not getting everything done on my list.

    Carolyn,

    find time to get on that bike with the hubby, will be a beautiful weekend.

    happy dreams,

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  • harbin
    harbin Member Posts: 24
    edited August 2008

    Hi JenB and all,

    JenB : Sorry to hear that you have to change the treatment plan duo to the low LVEF. I wish you the best with your new plan and new journey.

     I  had my last AC done yesterday. This is a major milestone. This is a second day and I am feeling okay. I feel better than the previous ones. I will start weekly texcol in 2 weeks. Thank you everyone for sharing their experience on texcol treament. I think I am preparted for that. I don't have any obviouse symtoms for Avastin either. I have to wait to see.

    Hope everyone is doing well and have a great weekend,

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  • carolynf
    carolynf Member Posts: 262
    edited August 2008

    Hello everyone,

    JenB: I am sorry to hear about your LVEF, but like Brena said it's better to find things out like that now and not later.  I hope all goes well w/your follow up.

    Harbin:  Congratulations on finishing AC.  THAT is a major milestone and then some.  My thoughts on Taxol is that is was milder because I did not have that Stomachitis.  BUT I did lose taste  w/food.  I also don't think I had any real SE's that showed up for Avastin.  I thought the nosebleeds were from Avastin but it was the Taxol I think.  Monday will be my 5th Avastin and I notice that I do get bleeding gums. Not all the time though. Here and there.  The time w/Taxol will fly by.

    Brena: Thanks for looking into the cruise.  It has been 3 weeks since my last Rad and I had to leave work on Wednesday because I felt fatigued and a little bit of a tummy ache.   Slept for 3hrs when I got home and then went to bed early (what's new w/that).  Felt fine the next day.  I am going to my step daughters house tomorrow w/my hubby and son.  She just got back from her honeymoon in Alaska.  So they are having a cookout and showing the photos/slideshow.  We plan on taking the bikes over.  Today was a nice day and I probably did more than I should have around and outside the house.  My back is a little sore from pulling weeds and playing ball w/the dog.  We brought Lexi to the beach tonight.  There were soooooooooooo many people and dogs there.  It was her first time.  She swims all the time in the pool but this was different.  There were a lot of good waves that she didn't see coming.

    Teresa:  How goes the change of scenery?  I don't know if I told you that my sister lives in Kansas.  Presently she is living in Iraq and getting very tired of it to say the least.  At least she is in the green zone though.

     Carolyn

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  • carolynf
    carolynf Member Posts: 262
    edited August 2008

    Carol,

    Just to give you a little insight to Taxol. It affects us all differently.  Some sooner and some later.  I made sure to have popsicles or ice cream in the house because of the way my tongue felt.  I had a hard time w/food (even though I ate).  The coldness felt good especially if you didn't really feel like eating.  I was tired ....still.  I think Rads made me more fatigued or it's the combination of chemo and rads.  I did not wash dishes because of what I read.  My husband and kids picked that chore up.  They are still doing it because my nails are not quite back to normal.  I did not get neuropathy.  Take time for yourself and if your body says sleep...do it.  Good luck.

    Carolyn

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  • brena
    brena Member Posts: 458
    edited August 2008

    Carolyn and Tersa,

    Below is the information from the flyer for the BC Cruise. The rep said anyone can go on the cruise with you, not just for BC survivors but the theme and itinerary is designed for us. The cruise is extended over a weekend so less days needed to take off from work. I may go one day earlier and spend in Miami doing a little tourist stuff. Let me know if and when you make a deposit or decide to attend. The price is per person assuming there is two people in a room; although you can get a room that accommodate more than two people. Example: a lot of time when I travel solo I would pay the $260 X 2 =$520 or I would share a room with someone and we each pay the $260 + taxes. A room with three people would mean the per person price is multiplied X three.

    The travel agent rep said there were quite a few inside rooms available but limited oceanview and balcony availability. I am confused, the travel agent flyer indicates 4 day cruise but the flyer in my magazine indicates 5 days 4 nights, they both reflect April 16-20 I will call them on Monday so as to unconfuse myself.

     CRUISE INFORMATION:Lebanon Office For cruise reservations

    528 S. Jefferson or more information

    Lebanon, MO 65536 contact:

    (417) 532-8282 Shelly Williams

    (800) 810-8610 www.greatsoutherntravel.com ext. 3972

    Sail aboard the Carnival Destiny on April 16, 2009

    3rd Annual Breast Cancer Survivors Cruise

    Depart from Miami, Florida and share this cruise of a lifetime with survivors. This 4-day

    Caribbean Cruise will sail to beautiful Key West, Florida and Cozumel, Mexico. While in Key West, travel by trolley on a historic tour of the city, sample native cuisine, or take in the beauty of many majestic gardens. In Cozumel, enjoy the jewel of the Yucatan by choosing from a variety of excursions, such as snorkeling, exploring Mayan ruins, and even shopping! Survivors and their guests are also invited to take part in special activities onboard the ship.

    Inside from $260.00 Oceanview from $310.00 Prices are per person, based upon double occupancy, and are subject to availability. Taxes and fees are additional $167.33, and are subject to change. Airfare is available. Travel insurance is recommended.

    Lebanon Office For cruise reservations

    Would be great to meet you ladies,

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited August 2008

    Hello Everyone....Ok I'm having a bad night.  I'm scared and hopefully for no reason at all.  I had treatment last week (monday) and I was talking to dr about the pain in my head, felt like a sinus infection.  They put me on augmentin.  Well sunday I went to urgent care because I was in so much pain.  the doctor there changed my antibiotic to Levaquin, gave me steriods and told me to use saline spray in my nose.  Well I talked to the onc nurse today and she called me back and said my onc wants me to have xrays at the hospital tomorrow of my sinus's.  I had a ct scan 2 months ago of my sinus's and you would think if there was an issue it would show up right?  I'm so dang scared. 

    I'll let you guys know what happens.

    Thanks for letting me vent,

    Teresa

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