Clinical Trial E5103

PinkVelvet · October 2008

Brena,

RE: side effects with Taxol - - right now my nose is bleeding, which seems to be a constant. My eyes water and run and it happens more frequently after the Avastin/placebo treatment every 3rd week. This week, I have felt a lot of fatigue - just can't seem to get going, no energy. I started to feel mild numbness in my hands off and on but it's not interfering with my functioning so my onc says it's okay. My fingernails are dark, especially thumb nails, but so far they've stayed on. My onc doesn't think I will lose them. My head feels fuzzy and it's hard to get things done because I forget so I've been writing things down in a notebook which helps. I'm still slower than usual but becoming more functional.

On an exciting note, my hair is starting to grow back on the sides of my head. I know it's possible that it could fall out again so I don't want to get too excited . . . but it's fun to see hair again.

I hope your boob is on the mend. Your trip sounds exciting. I've never been to Spain but it's a place I'd like to visit some day.

Take care of yourself,

Jen

cjw · October 2008

Debk

I have also continued working during treatment. I normallly work m/w/f. During the AC, I was treated on thursday, took Friday off and was able to go back to work on Monday. During the taxol, I worked m/w at my office and Friday from home (I have a really bad commute, which is why I didnt drive in on Fridays). I have a very understanding and supportive boss and company which defnitely helped. The weekly taxol sort of gets old, but I had no major side effects from it.

I did find it helped to work-feel more normal and in a routine, but you probably can't go at100% your normal pace. I now have to decide if I should have radiation--I am in the gray zone, so could go either way. Will most likely do it as it seems like why not if the side effects are managable.

hope this helps--good luck next week-coincidentally my last taxol will be thurs the 30th, so you'll be startingas I am finishing.

Carol

debk55 · October 2008

Thanks Carol,Keryl.Jen & CJh, for letting me know about work. I think since I do have some disablility ins I will start the chemo and see how it goes. I hope it will go well and I can go back parttime at least, I have only been off for 3 wks so far from the mast and even I am not closer to 100% but, it would be nice to being going to work for something normal to look forward to. I had to get some fluid drainrf off the mast site yesterday. I hope I don't have to have that done again!!! i will check n withyou all next week.Blessing to youall, Deb

brena · October 2008

debk55,

Glad you found us and WELCOME to the group. Many of us are at different stages of the BC journey in the E5103 trial, you should find support and many shoulders of great woman to lean on should you need one or several.

i too worked during my chemo treatment but took off during week 2-6 of my radiation, the daily trip was in the opposite direction of work and I would of spent half my day on the road getting to and from. My boob got very sore and still have some edema so the time off was to focus on recovering.

Do what is best for you and remember this is your time to focus on you and your needs, as a woman this is usually against the grain.

Talk to us and let us know your progress and stop by if you have questions,

brena · October 2008

Carolyn and Teresa,

Your at the end of the trial, how do you feel about that? excited, nervous? I hope your both doing well and still recovering well and getting sleep.

Don't seem to want to talk much these days, believe it or not I am sleeping 4-6hrs daily and am still so tired. I could sleep another 4hrs daily if I could, seem to go from one end of the spectrum to the other..will I ever be normal. I skipped my bike ride today, chilly and let other things get in the way. Can't afford to skip to many days, back on track tomorrow. That makes about 4 rides I skipped this year, not bad but a bad habit to start.

Have some things going on around the house plus getting a little excited about my vacation to spain, checking out the nightlife options but do plan to spend much time on the beach. I find it hard to believe the year will be almost over when I return from vacation. This year has flown by and when I stop and think about this years memories sometimes they scare the hell out of me and other times I think I am the biggest whiner. I try to remember to be grateful for all that I have and what BC has brought me; the good and the challenges.

My boob feels pretty good, still a little edema and again some days are better than others. I do get the occasional shooting pain..you know that reminder of RADIATION. Skin is still pitted and much harder, definitely can't compare how one breast feels to the other as they both feel different. Anyway, overall I am doing pretty good and trying to develop that "normalcy" but at times find myself still reading the latest and greatest on BC research and new milestones.

Either of you considered the Bisphosphonate trial?

hope all is well with you ladies and your families,

sftfemme65 · October 2008

Brena,

Like Carolyn, I have 2 treatments left. I am kind of excited and scared. I look forward to completing this and going forward thats for sure. I am now considering reconstructive surgery. I am meeting with a plastic surgeon on nov 19th to talk about it.

I am looking forward to the cruise in April....is anyone else going??

Well, I'm going back to bed now, I have been there all day, seems I got a bug and I have the flu or something like it. No fun at all.

Teresa

harbin · October 2008

Hi All,

Just let everyone know that I have been unblinded yesterday. I was on Avastin and Arm C. Now I have an option to continue to receive another 10 avastin treatment. I am still trying to make up my mind.

Teresa and Carolyn - Since you both also on Arm C and continued to receive Avastin treatment, do you experience any additional side-effect or the existing side-effect get worse? For the last course of avastin treatment, I did not have much side-effect from avastin, except my blood pressure has been elevated some, but still in the normal range. (I ususally have very low blood presure).

Hope everyryone is doing well,

Harbin

PinkVelvet · October 2008

Harbin,

Congrats on your unblinding. I won't be unblinded for a few weeks but I'm interested to hear comments from other Arm C survivors.

Jen

brena · October 2008

Harbin,

Another in Arm C, you are doing great!! I hope you decide to continue on to arm D. The next step does require a commitment and time, and know you are up to the challenge. I hope your feeling pretty good and getting your necessary rest. I can't believe you had minimal SE with Avastin, you never know. One tough lady!!

Our group is having a great run; so far everyone unblinded has been in arm B or C.

Congratulations and keep us updated on your decision and progress.

take care of yourself,

sftfemme65 · October 2008

Harbin,

I have 2 more Avastin then I will be done. I think I have had more side effects than most. I have had major problems with my sinus's and it was happening when I was doing the taxol and it hasnt gotten better.

Personally, it was a very easy choice for me to make. I will do anything to keep this from coming back.....and being trip neg made the decision that much easier.

Good luck with you decision. Let us know what you decide

Teresa

ryjuem · October 2008

Hi all!

RE: Working during chemo--The A/C was tough for me and I was glad I took time off. The Taxol isn't so bad and if I had a job I liked I could probably work just fine with some adjustments for tx days and less energy the rest of the time. My job was killing me so I am very happy to not be working.

RE: Rashes on arms...I only saw a mention, not the original post. I have been getting an itchy rash on both my arms on the top of the arm near the elbows...also on my knuckles. weird.

RE: SLEEP -- I had been unable to sleep and was going crazy. I finally found some help and have been sleeping really well for the past week. I began taking melatonin 10mg as well as a calcium/magnesium supplement called LSP Spasmol. Also a high concentration Omega3.

Something to think about...ask your non-cancer friends if they are feeling more tired and disoriented these days...at least those of us in the northeast where the temps are dropping, it's dark earlier and the heat is going on in our houses making things drier and allergies etc kicking up. Sometimes we are just NORMAL like everyone else!!!

I have had my 5th Taxol...only 7 more to go!!

hang in there

joanne

brena · October 2008

Joanne,

I have been thinking about you and how is the insomnia. Insmonia was one of my worst SE that almost drove me to the brink! Glad you are able to get some relief. Definitely feel for you.

How is the port working? were the experts able to determine how to resolve the flow problem? Keep trying to exercise even if a short walk outside, it should help the hardest is getting started so keep trying.

If my calculations are correct you should be getting close to your unblind date, have you been given a date?

The red rash on the arm to the knuckle is believed to be a SE from the A/C and or Taxol. Teresa and me are the only two that I am aware of that received the rash. My rash did not itch and did not go away until about four weeks after completing the Taxol. You are the 3rd woman to report the rash, it should be reported to the trial authorities as an adverse SE.

take care lady,

brena · October 2008

Hi ladies: Win_Lynn, Desi, Erika, Harbin and CJW,

All of you have been unblinded and I would like to know if you can ask what your study number is, this is the number given to you when you were randomized into the study. Your Onc or trial coordinator would be able to provide you this number.

In a couple of weeks I will post the results of how many of us are in Arm A, B or C.

take care,

brena · October 2008

Deb55,

Am glad you found us, hope we can be supportive when you need it. I also worked while doing chemo, took off the day of injection (Friday) and the following Monday for recovery. This allowed three days of work, which kept me busy and in touch with what was going on at work but allowed me time to rest. There were a couple of days that I left work early and went home due to SE but did function most of the time. I took off work during the entire time for rads and several weeks thereafter.

Hope you find what works for you,

av2 · October 2008

Hi Everyone,

I been reading all the messages in this thread and decided to join. I am 37yrs and live in California. I also participate in this trial. Next Tuesday, I am getting my 3rd dose of AC. I am getting my treatment from Stanford. First dose-first 2 days I was ok(second day I get Naulasta shot), compleetly wiped out 3rd and 4th days, then recoverd, I thought it's not that bad, second dose, I had hard time for one week, may be my flu shot also contributed to SE's. I am shivering about my 3rd now Cry .

I had lumpectamy, so I have to go for rads after chemo. All of you women are awsome here and I really appriciate all the support you are getting with each other! Desi: I am also South Asian and vegitarian, any suggetions with diet for RBC?

Thank you all,

av2.

brena · October 2008

Av2,

Welcome to our thread and glad you decided to join the chat and the trial, such a worthy investment. Would you mind sharing with us the reason you decided to join the trial? Where in California do you live? do you have family nearby for support? family history of BC? what tests have you had performed?

If you feel inclined would you tell us a little about yourself, work and hobbies.

Our thread has created many pages of chat so on those nights you cannot sleep just do some reading at leisure. There are some weeks we really chat and other weeks were pretty rapped-up in our daily tasks and trying to adjust to the BC journey. If you need help or just want to talk drop a line and someone will always respond, your never left out alone!!

Well I think I have bombarded you enough for your introduction to the group, you are so correct in your stating these are an awesome group of ladies.

take care,

av2 · October 2008

Hi Brena,

Thank you for the warm welcome, now I know I can get some support and hope I can be supportive to new members too. I am so admire at you to start this thread and all your patience and support in answering.

Re to your Q's: I am triple negative, so no choice for hormonal therapy, the only therapy I can get (as a back up like hormonal) is this trial, so decided to participate, hoping that I am getting avastin. I live in the same area as Harbin(Cupertino) and attending same hospital as her and under same Onc and trial coordinator as her! So far I have wonderful support from my bros, sis, and in-laws, most of all, wonderful supportive husband and my two kids(9yrs and 6yrs!). Yes! my mom had BC and passed away with that , when I was 16yrs! Tests: before lumpectomy, memo couldn't identify my lump, I had ultra sound and MRI, had biopsy to diagnose, had sentinel node biopsy during surgery. I have port for the purpose of chemo. I used to work before this mess, now I quit and wanted to just concentrate on treatment. I love to walk 4miles everyday, which I am not able to do now, second week of my dose, I am trying to take a little walk, most of all, I missed volunteering at my kids school Hope that raps up about me.

I think, Keryl is just got her 3rd dose of AC last week from UCSF.

av2.

S3K5 · October 2008

av2,

Welcome to the group. As Brena mentioned, there is a lot of information from other ladies who have gone thru' or going thru this journey. I am done with the chemo part and will start radiation in a couple of weeks. My last Taxol was on 10th October. Due to Avastin, I am having a lot of sinus problems. Taste buds are not back yet! With diet, I try to get more protein and vegetables (Can't taste anything!).

I have been on STD so far, due to fatigue and body ache.

Good luck with the rest of your treatments.

Take care,

Desi.

np312 · October 2008

Hi all,

My mom has been given an option to participate in this trial. I want to know how beneficial is it??? I mean does it offer added benefits due to Avastin???? OR we jsut participate in it to help in their research and hoping for a better cure in future for others????

Also, the other 2 options we have is TAC every 3 weeks OR Dose Dense (AC every 2 weeks and then 12 weeks of Taxol) AND option 3 is the clinical trial you are all talking about.

Now we are confused and dont' know how we make the decision. Can you pls HELP??? You can see my mom's diagnosis in the signature.

PinkVelvet · October 2008

np312,

Thank you and your mom for considering this trial. I'm very sorry that your mom has to be in this position at all.

I can't answer all the questions (Brena probably knows) but I've heard from several people who have said that receiving Avastin would be a very good thing. I'm not sure the mechanism of how it works because currently it is used in some later stage cancers to prevent blood flow to the tumor, although we no longer have a tumor, so.....

Once I got signed up, I have not regretted participation in the study. Treatment isn't really that much different than the Dose Dense that you described, expect that it takes a little longer because of the extra drug (avastin/placebo). Dose Dense seems to be the treatment of choice in many cases.

The trial coordinator talked to me every week to find out how I was doing and that gave me a lot of comfort and support. I also liked knowing that I'm not only helping myself, but I have the opportunity to help other women that will be diagnosed with BC in the future. Another reason that I wanted to join is that I wanted to do whatever I could now to prevent recurrence and I saw the possibility of receiving Avastin as doing just that.

I hope you receive input from other women on this thread, as well as other threads on this site. They provide really good information and support.

Hang in there and be sure to ask all the questions you need while you guys are going through the difficult decision of choosing the right treatment for your mom.

Jenne

sftfemme65 · October 2008

Hi Everyone,

NP312 I'm sorry your mom is going through this, it isn't easy. Personally, I think this is a great trial and I think Avastin is a great drug. I did DD A/C (4 every 2 weeks) then 12 weekly taxols...I was receiving avastin and I went on to do 10 additional ones after chemo, I have 2 more to go.

For me the worst side effect is my sinus's. It has been pretty bad actually but for most its not. I have no issues with my blood pressure or anything else.

If I can answer any questions please ask.

Teresa

carolynf · October 2008

Welcome DebK,

I worked throughout A/C and Taxol. I would take time off in the afternoon if needed. I would leave work and go home to bed on some days. I had a harder time w/radiation. Not sure if it was the combination of the lasting effects of chemo mixed w/rads. No one really has the answers. I have 2 more treatments of Avastin which I will be happy to finish! I still have not gotten my energy back that I had before starting this journey last year. I am hoping that once I finish the avastin it will appear! One thing to remember is that we all are affected differently on the many meds and treatments that we receive. Hopefully, you will be one to breeze thru this. Good luck on your first one. Remember to drink plenty of H2O.

Carolyn

carolynf · October 2008

Hi Harbin,

I have been tired but am not really sure if that's the avastin or just the effects of everything I have been thru in the past year (Plus 3 kids playing on 4 teams of soccer, traveling here and there doesn't help). Plus gaining this chemo weight didn't help things. My sinus's have really been the only issue. It might have been aggravated by the rag weed/pollen, who "nose" what. Overall I would do it again. It has not been like the standard treatment. I will be happy next Monday to say "1 more to go". There are a couple of other women in this trial who have the same onc as I. I am going to be the first one to finish. I look forward to the end and not having to schedule another tx. My thought on this trial is that it may help many women in the future. Time has also flown by. Good luck in your decision.

Carolyn

harbin · October 2008

Hi Av2,

Welcome to the group and glad you found us. Yes. we live in the same area and are treated at the same medical center. What's your treatment day? I am on every thursday. I have two more Taxol to go. For next two Thursdays, my appointment will be on 9:00am just in case if you also come on Thursday morning. I also go to the support group - BC Connection at Palo Alto some Saturdays. It looks like we both have very similar diagnose and treatment. AC is a bit tough, but you are already half way through. Just hang in there. Please let me know if you have any questions that I can help to anwser.

Take care,

Harbin

harbin · October 2008

Hi Carolyn and Terasa,

Thank you both for the feedback regarding the SE's on Avastin. This is very helpful. In next couple of weeks, I need to have some tests done after my Taxol treatment, then I will need to make my decision. I get scared whenever it comes to a decision...

Harbin

carolynf · October 2008

Hi NP312,

There's a lot of information to absorb at this time for your mom and yourself. Its great that you are there for her. You may need to be the one to hear the things that the onc. says because your mom may be having to many other things on her mind. I started my tx back in Dec 07 and had to read a lot about avastin. I was uncertain as to do it or not. Its easy for someone to say to you...I would do it after reading all of the SE's that may happen. My mother and siblings were very much in favor of me doing this extra treatment. On the other hand my husband would not say one way or another. After researching and then talking w/a friend who had a double mastectomy back in 1982 and then went thru a liver biopsy and then having diagnosed w/liver cancer and she went on avastin 1 1/2yrs ago and is doing fine. I personally look at it as science and that this drug may be the answer to helping recurrence. Science would not be where it is today if others didn't take a chance. It still comes down to personal choice and convienence. I will have 1 more treatment to go after Monday. I do look forward to being done w/the trial but will probably miss seeing my onc every 3 weeks! As Teresa said, everyone is different in how their bodies react. The only SE i've really had is sinuis's that I have bought stock in Kleenex. (just kidding). I am just hopefull that things will get better after all txs are done. Any questions you or your mom have I am sure many of us on this trial can answer. Thanks for starting here!

Carolyn

carolynf · October 2008

Hi Brena,

Well, you probably have your short time calendar til your trip to Spain! I told my husband that we are in need of a vacation and he said well, you have to book it now....I think things should be a little quieter after the new year if you know what I mean. Soccer is over. The girls missed going to States by 1 goal. They did win a Fair Play award (aka sportsmanship) for one of the tournaments. Try outs for basketball start next week. I thought I would be getting a break for a couple of weeks. SO much for that. My little guy wants to play indoor soccer which starts in January. It's an hour away but I said I would let him. Its only on Saturdays. He wants to do that instead of Basketball. I can't beleive you are still riding your bike. I just heard its snowing in North Conway! Its going to be an early winter in the Northeast...I hope to be able to go skiing this winter. Well, got to get some work done.

Carolyn

brena · October 2008

Carolyn,

Well where are you going for your trip? in the spring or summer of next year? Glad the kids are keeping busy, love that soccer I have even played indoor with the U16 group. Tougher than outdoor soccer but lots of fun!! Make time for yourself even if 1-2 days a month, unless you don't feel you need time for yourself.

I am still riding damn cold but feel terrible if I don't go, feeling a little plump this last two weeks so absoluetely need to ride, makes me feel good. May need to get a stationary bike for those really cold days, did walk last Dec-Feb just bundled up.

I will be going on the Breast Cancer survivor cruise next April along with Teresa. I also have in mind a trip to the Caribbean in Jan or Feb, after that I am not sure where I will be off to. I am thinking of Alaska, Turkey, Morroco or back to Egypt. I do not need to make a decision for a few more months but before the end of the year.

I have never skiied, one of those things I said I would do but never have. I guess when I am ready I will do it, may be I need the push or a good reason.

I have several personal issues going on at the moment that are taking my focus, so don't want to get to far ahead of myself.

Tommorow I have an appointment with my family doctor to discuss some very uncomfortable pressure I have been having at the base of my skull on the right side. The preasure point is under the edge of my skull can't touch the pressure point but I know its there. I have had the pressure off and on for about 6 weeks along with some other SE's. I have tried benadryl, massage and tylenol to help but nothing has worked, the pressure returned and each week seem to get another SE that all goes back to the same pressure point. I am sure I will get an antibiotic, will add it to the list of already taken. Or better yet maybe he will perscribe a vacation, that I can accomodate his request.

Tommorw, I will also meet with my surgeon to review me getting my port removed. I hope he doesn't give me any static about removing it because I am not in the mood for more Dr. crap!

sftfemme65 · October 2008

YEA BRENA!!!!!! Just to hear you mention the cruise makes me want to jump up and down and scream. I can't wait! Looks like you like to travel like me.... I am off to San diego on Saturday, my birthday is sunday. Me, all my kids, some boyfriends, my 2 grandkids...10 of us all together. It will be a blast I'm sure.

Then I'm off to San francisco on Nov 28th, which btw is exactly one year ago I was diagnosed, its a short trip. Just me and my brother are going....going to see the Raiders kick some KC Chiefs ass hopefully lol.....back on Dec 1, I get in a 2 and then I will have my final treatment at 3 pm.

I have no other trips in concrete yet but I'm so open to any ideas lol.

Hope everyone is doing great!

Teresa

sftfemme65 · October 2008

Hey Group....You know what I think would be so awesome is if we could all some how get together and meet each other!

Just a thought Laughing

Clinical Trial E5103

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