Clinical Trial E5103

carolynf · January 2009

Teresa,

My PT says that the way she tells I have fluid in my arm is that it feels like cottage cheese. I usually ck both arms to make sure they feel the same. I can usually tell the difference. You said you had shooting pains which can still be effects felt from the chemo. At least that's what my onc told me...Try putting an ace bandage lightly around the area of your arm that gives you that FEELING. Leave it on overnight and see how your arm feels in the morning. I did that one night because I didn't have a sleeve (compression). If it doesn't make a difference then it might just be the chemo that's leftover. Let me know how it goes...

Carolyn

carolynf · January 2009

Hi Betty,

I am so sorry you have to deal with the trial decision along w/the standard treatment. I was in Arm C and took the avastin for a year (finished Nov 08). I am 46 and had a hard time deciding on the trial due to the SE's they show you. I think you would need to look at a few things that might affect things: How's your blood pressure now? How's your sinuis's? Are you healthy? How's your heart? Those are all items I would be looking at. I would think your onc has already looked at your overall health and that is why he is suggesting it. The final decision is yours and no one else's. My BP went up but not so much that I had to go on pills. Not sure if it was from the avastin or the weight I gained. I am still dealing w/my nose issue of being VERY sore. During this trial I have had my heart monitored w/EKG's and Echocardiograms with no changes. Do you have any specific questions about the trial?

Carolyn

brendafromflorida · January 2009

Bettylou, I am 63 also and have signed up for this trial. I received my first treatment today. It has been 4 hours since the completion. So far, I feel no different than before I went in. My decision to participate in the trial was fairly easy. I just decided that if there was any possibility of preventing recurrance or if I actually got the placebo, but any data received helped another woman going through this dreaded experience, it was well worth any side effect I could experience.

My reconstruction could definitely be delayed because of it, but I feel like anything I really want is worth waiting for.

I understand that everyone is different, but I say go for it. Let me know if I can help with anything, letting you know how I feel, etc. When are you due to begin if you decide to do this?

Hugs, Brenda

carolynf · January 2009

u2av8r,

I'm glad to hear Kim is doing good. Great to hear she has clear margins. I am sending well wishes her way for recouperating quickly.

Carolyn

Keryl · January 2009

Can anyone tell me how they found out about their A. trial status? today my coordinator said they input data into computer at the completion of avastin dbl blind period and then the computer interaction with NCI tells them my status -- he was vague about how long that takes - is it immediate, hours, days, what? Does the oncologist tell me fthe outcome or does the trial coordinator? My last avastin is 1/22 with my last taxol 2/6; when do you think I will find out and how does that happen? Though I know your experience may not be mine, any info appreciated. Starting to get anxious so any level setting is good.

Thanks.

Binney4 · January 2009

Hello, Carolyn and Teresa,

Just wanted to pop in and add a few words about lymphedema. Before there's any visible or measurable swelling with lymphedema there can be as much an 30% more fluid in your tissue than is normal. So lymphedema can definitely be present before there's any swelling. The arm (or breast, or chest) may feel heavy, achy, tired, sore, or sensitive. Your rings or clothes my not not fit the same. You may notice longer-lasting marks in your skin left by your bra or the cuffs of your clothes when you take them off.

There's good news! Smile Recent research has shown that if your lymphedema is treated very early, even before swelling is obvious, it's very easy to manage and to keep in control. So it's well worth making a prompt appointment with a well-trained lymphedema therapist. (Not all physical therapists have been fully trained in lymphedema treatment -- you want someone who HAS been!) Here's a website with information about how to find a well-trained therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Any member of your medical team can write you a referral. A lymphedema therapist will take baseline arm measurements, teach you a gentle massage you can use prophylactically, fit you for a sleeve and a glove or gauntlet to wear for a couple of weeks initially, and after that whenever you feel any symptoms or when you exercise or travel, and s/he'll give you individualized tips for reducing your risk of swelling.

If there's already swelling present, a well-qualified therapist will wrap your arm in special short stretch bandages (they look like ACE bandages but they act quite differently - NEVER use an ACE bandage on your at-risk arm, as it can cause constriction that can actually trigger lympledema.) Your therapist will do lymphedema massage daily for awhile and teach you to do it too. Then you "graduate" to a compression sleeve and glove which will probably need to be worn daily. At night you can wrap your arm or order special foam-filled night garments (NEVER wear a compression sleeve or glove when you're sleeping -- they're designed to control swelling when you're up and active by adding compression that moves the lymph along. At night when you're still they can have a tourniquet effect and make swelling worse.)

More lymphedema information here:

www.lymphnet.org

www.stepup-speakout.org

Or come join us on the "Lymphedema After Surgery" forum. You'd be welcome!

Be well!
Binney

Bettylou · January 2009

Hi to Brenda from Florida!

Thank you so much for your input, especially so soon after your first treatment. Since I first submitted my situation to the discussion board, I have been talking to many friends here, been researching on the web, talking to my doctors and other health professionals, etc. I am now leaning more towards participation in the study than at this time yesterday. I know the side effects from chemo treatment alone are not the most welcoming so adding another drug to the "cocktail" could possibly be less of a burden than expected and maybe prove to be as beneficial as my doctor says. I am concerned about the scheduling of my second stage of reconstructive surgery and will check my oncologist today about that. My plastic surgeon hopes to do it within the month, that would mean I will have had only one treatment before that time. You mentioned that your might be put on hold. Have you had any reconstruction done at all, i.e. immediately after your mastectomy, or was that always planned to be done later? I start my chemo next week so must make a decision re study very soon. I too know that it is only through studies like this that advances are made in the treatment of breast cancer. I have never participated in any kind of medical study before nor I have ever taken any strong drugs. I guess this is what causes me to be somewhat apprehensive, especially when one sees all the possible, risky side effects. Thanks again for your input. I'll keep you posted on my decision and prehaps we can follow each other's "progress"! Betty

brendafromflorida · January 2009

Hi Betty, I have not had any reconstruction yet. My BS and PS both said I would be wise to wait until after my radiation. My BS did a skin sparing mastectomy so there would be more to work with when the time comes. They both said that radiating good tissue was not the best thing to do. I, too, have never had any strong drugs previous to this. I have a very strong constituation. In the past year and a half, I have had a total hip replacement, total knee replacement and had no issues healing or with rehap associated with these. Then in October, this. I am amazed at how well I feel right now. I keep waiting for the shoe to drop and something happens. I can't imagine that I will come out of this with no side effects. I would love to follow each other's progress. Seems we are very close in dx except that I had a few more nodes involved. My tumor was actually 2.5 cm. I was about a month behind you in dx. Did you have bilateral or just one? I just have right mast. Good luck with the decision. Let me know please.

Bettylou · January 2009

Dear Brenda, Wow, you certainly have had your share of medical problems in the past two years. I hope 2009 proves better for you and that the participation in the study will be beneficial - if you end up in the non-placebo arm of the study. I have made the decision to be in the study and will start next week. This is my second experience with breast cancer having had a mastectomy on the left breast in 1986 followed by breast reconstruction in 1987. I had no nodal involvement and therefore, at that time, no drug therapy was recommended. This is a completely new recurrence and obviously in the right breast this time. I will learn more next week about the date of the second stage of the reconstruction after my plastic surgeon and oncologist have discussed my case and determine if better to hold off or go ahead. Be brave and I'll be in touch when I have more to report on my situation.

busqueen · January 2009

Bettylou, just wanted to let you know that I was told that I couldn't have any surgeries while doing the Avastin trial. It can really affect healing in your body. So I am waiting to have my reconstruction when I'm done with all my chemo. Good luck to you!:-)

brena · January 2009

Keryl,

Your result is immediate after data is entered, remind the coordinator that the E must be entered prior to the number or you won't get a result. The coordinator or Onc can give you the result, you might want to plan the unveiling for the day of your last appointment. Coordinator cannot enter data prior to your unblind date. Also ask for your trial enrolement number.

My coordinator started the morning of my unblinding because I was her first in this trial and she wasn't sure what to expect.

We will be waiting your results, you have come a long way!!

keep warm,

Keryl · January 2009

thanks -- yes, my coordinator is meeting with me on 1/22 ; thats two weeks away!

yes, will get my number. thanks for your advice on all of this.

Bettylou · January 2009

Thanks for the additional input regarding surgeries while one is on Avastin. I was told by my nurse practioner that my oncologist and plastic surgeon will be discussing next week whether the second stage of my reconstructive surgery will happen (in the next month) or be put on hold. As I have my first chemo treatment this coming Wednesday and the next one basically one month from then, there may be the possibility of having surgery as I will have just started the treatments. But I obviously leave all these decisions up to the doctors and follow their recommendations. Thanks again! Also curious to know how long you have been on the study. Betty

Bettylou · January 2009

Hi Carolyn! I just now saw your reply and after reading it, I think you directed it at me and greatly appreciate your input if you did. I congratulate you on taking Avastin for almost a year. That had to have been difficult but obviously you appear to be very strong and coped well with the side effects, etc. I have decided to go ahead with the study and of course not sure which arm I'll end up in. The doctors will definitely be monitoring my BP, etc. during the study. I am 63 and in very good health despite the cancer. BP always below the norm, never had sinus problems apart from some allergies in the spring. So basically I guess they felt I was a good candidate for the study like you. I'm curious to know the worst side effects you experienced if you don't mind telling me and how you feel overall about the study. Any input would be very much appreciated! Thanks! Betty

Keryl · January 2009

Bettylou - I also need to have my second phase (exchange) but dr. said no surgery until 6 weeks after finishing avastin so that cells are in better position for healing. I understood that this is because it works out of your system so it doesnt interfere with cells generating blood supply following a surgery.

However, the last avastin for me is moot with regard to surgery, since I have to have radiation also (not fully known at time of initial reconstruction) My PS insists on waiting one year after radiation for best outcome. Ok, so I will wait one year from the end of radiation to have my exchange. Ugh. well, you better believe that will be the first day possible.

carolynf · January 2009

Hi Bettylou,

I am glad you have made up your mind to join. It definitely was harder deciding on the trial than on the standard chemo! My worst SE would be a tie between fatigue and sinuis pressure/headache. The pressure/headache came more towards the end of tx but my nose has ran for over a year. Get stock in Kleenex because I kept a box in my car, on my desk at work, next to my bed and in the bathrooms. I could not leave the house w/out tissues. I still have to take them. Maybe not as many but I am still constantly blowing my nose now. It doesn't quite drip a faucet anymore. The one thing I did like about the trial was you weren't glued to it. If you are having bad SE's then you can opt out. I don't think the SE's have been terrible for anyone thus far. I hope it to stay that way too. Also, I found that excedrine works better on the headaches for me and I am mostly an ibuprofen, advil, aleve or motrin person. I did try tylenol but it was the excedrine that worked the best. Keep your spirits up and if you have any ?'s don't hesitate to ask.

Carolyn

carolynf · January 2009

Binney4,

Thank you for the info on lymphedema. I have browed the thread on it a couple of times. I will also look into those sites that you gave. I do go to PT for my neck/arm/thumb but my PT thinks a lot of my issues will go away once my port is taken out. It may have contributed to a pinched nerve. So I am looking forward to this Friday when it comes out. I know I will be a little sore but want it out. Wish me luck!

Carolyn

Bettylou · January 2009

Hi Carolyn! Appreciate your reply re SEs you have experienced. Will keep all that filed away for future referral! Also, I agree entirely with you that one of the good things about the trial/study is that one can stop/pull out if it becomes too much. So we shall see! I have tended to usually take either Aleve or Tylenol for muscle aches, etc. but will again keep in mind what you said re Excedrin. Lots to "look forward to" and hope that it is all for the best - for me and for future beast cancer patients! Guess this is one of the best ways to makes inroads into curing this awful disease. Bettylou

brendafromflorida · January 2009

Brena, it seems I missed this post asking me to info about myself. I am 63, 2 sons 43 and 38. I live in Florida with my significant other. I still work full time as a Director of Customer Service. I am trying to continue to work as much as possible through treatment. My sons live in RI and NY. I have 2 grandsons in NY. They are 16 and 14. I was dx on 10/15 after doing a self exam and finding a lump in my right breast. I knew it wasn't good when both the PCP and BS called me early morning the day after my diagnostic mammo and ultrasound.

I have had my first treatment, finally, on Thursday the 8th. The first and 2nd days were fine. 3rd day, I couldn't get out of my own way and slept most of the day away. Nagging headache that won't quit and slight nausea today. Not as bad as yesterday though. I go on Monday for my Neulasta shot. Can't wait for that. The information I have gotten from this thread has been extremely helpful. Thank you so much. I was fighting a cold before treatment so I am not sure if the stuffy nose is still carryover from that. I guess we'll see. I have high blood pressure but it is controlled with medication. I am hoping that does not become a problem for me.

Brenda

debk55 · January 2009

Hi All,

Have any of you had shortness of breath when walking or doing anything. I thought I had it because I was anmeic and now my hbg is going up and I am still short of breath and it is getting worse. I go for treatment tomorrow I will ask my research nurse about it. I do see that it is one of the side effects for avastin. Just wondering if any fo you have had that SE?????

Bye for now, Deb:)

BerkeleyKim · January 2009

Hi all:

Just got back from my second tx. First round wasn't too bad, but I already feel some heartburn starting. My blood counts went way low on day 9, even after Neulasta. Then shot up 4 days later (delayed reaction, they said), but this time I will go in for a Neupogen shot after a week. I hope it works better.

Re shortness of breath. I'm early in the game and don't know what I'm getting, but everytime I see someone at the cancer center they ask me if I've had shortness of breath. Maybe it's just a concern with any kind of chemo, but I don't know.

Hair falling out now, about 16 days after first tx. And I thought I'd make it to a wedding this wkend with hair. NOT. Maybe it'll stick around for my birthday Sat, or at least some of it.

Hugs, kim

brena · January 2009

Hi Debk55 & BerkeleyKim,

I did not have any shortness of breath; however, I did not receive Avastin. Just for precaution please bring this up with your Onc on your next visit. If it gets to be to bad seek immediate care. Some of the others will chime in pretty soon, maybe one of them had shortness of breath. Are you doing any physical exercises?

I always received my Neulasta shot the day after my chemo. On the days I did not exercise I felt terrible aches in my entire body, as if someone ran me over with a car. That was my incentive to keep up with my program.

keep us updated,

carolynf · January 2009

Good afternoon ladies,

In regards to shortness of breath, I would say I did not have this SE on Avastin. I was very TIRED/FATIGUED. I didn't work out like some people do but I still took the stairs and walked from here to there...I was also like Brena and rec'd my Neulasta shot the day after chemo.

I got my port out yesterday!! Celebration to occur later this evening! My surgeon let me keep my Bard port! The nurse flushed it and cleaned it up and then put it in a biohazard bag. My daughter did a little freaky deaky thing on me. She couldn't even touch it in the bag. I was amazed at it. I thought it was a hard plastic...not metal. I thought it was much thinner, not, it was pretty thick. Also, pretty purple color. It will be show and tell Tuesday at work. Everyone was very excited that it was coming out. I am wicked sore and had a hard time sleeping last night. Took a couple of vicodin which helped somewhat. Hoping to heal w/in the next week or so. Well, time to go food shopping since there's a snowstorm coming tonight. Hope everyone is doing great.

Carolyn

debk55 · January 2009

Hi BerkeleyKim,

I had wicked heartburn and started Prilosec and it helped alot. My onc oked but, maybe check with yours to make sure that is ok. My friend who went thry all this 3months before me was started on Prolosec before her chemo even started. Hope that helps and you heartburn goes away. Glad your 2nd tx went well.And Ishave my head when the hair started coming off in hand fulls. Just wanted to have control of something. Hahaha

Talk to you later. Deb:)

cjh · January 2009

Hi All,

I was unblinded yesterday and am in arm A. I thought I would be terribly disappointed, but my first reaction was "gee, if my blood pressure increased this much without the avistan, it may be a good thing I did not get it". Yes, my blood pressure went up every time they administered the placebo and stayed high for five days along with bloody noses. Needless to say, most of my chemo team was sure I was getting the avistan.

I did have shortness of breath on AC to the point I could not sleep on my side some nights. It totally went away after my third cycle of AC?

Oh Brena, for the record, I was # 51 in the trial.

Bye for now.

CJ

brendafromflorida · January 2009

Hi All, I am also having very slight shortness of breath. I am on A/C, first treatment Thurs. 1/8. I go again on Thurs. for my next one. 4 tx, every other week, then go to Taxol every week for 12, Avastin or placebo every third.

Kim, Happy Birthday. I hope you had some laughs today.

I am getting the hair cut tomorrow. Not sure if I am going to buzz it yet. I probably have a few more days before mine starts to fall out. Not sure what the point is of keeping for a few more days though, My son is here with me and he says he is getting his buzzed. I will decide when the time comes.

BerkeleyKim · January 2009

Hi all:

Thanks for the b.d. wishes, Brenda. I got my fake boob, and lost some hair. Had a good dinner, and daughter made me a great cake. Can't complain.

CJ-sorry about the disappointment. My blood pressure has been going up and down, so I bet I'm not getting the avastin.

By evening of second tx my quads and knees felt really week, and I was dizzy again. Very pale. Then next day better, but with really red face. Had accupuncture, and haven't had much nausea!!! Or heartburn (yet at least), but I'm tired and still sort of dizzy. Hemmorhoids! Yikes. And I thought I was being so careful and really drinking a lot. Stuff to bring up to my onc. Thurs. Hope my counts are ok.

I think I'll buzz tomorrow, or pull more out today.

brena · January 2009

Carolyn,

Congratulations on getting your port out and being able to keep it for a milestone in your life. I asked the nurse and she said they always turn the ports into the pathology department, sounded funny and I did not push the issue and should have asked the surgeon.

I got a computer virus and now need to wipe out the entire hard drive, am using the computer at my daughters house. Hope to have my computer back by next weekend, well see. So I will only be able to read and post while at work or when I stop at my daughters house.

Will try to keep in touch,

brena · January 2009

CJ,

Congratulations on the unblinding and am tickled pink to have you join me in the A arm, although I do know it can be a little disappointing after all the hipe about the Avastin and its benefits. You are still 1/3 of the research and should continue to be very proud of yourself for stepping outside the "box" and taking this chance. I think Teresa was number 50, will check when I get home.

Have you considered participating in the bisphosphonate trial?

hugs,

brena · January 2009

Lauren,

Glad to hear you have a good support system, times during chemo can be a little rough and its great to have someone to help. Have you made a decision about joining the trial? Did you get all your questions and concerns answered about fertility?

talk soon

Clinical Trial E5103

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