Clinical Trial E5103
Comments
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Hello all:
Just folowed up reading all the posts. Assuming it's the Avastin causing the hoarseness/laryngitis, did anyone come up with a cure? I am a singer (part-time) and would really love to be able to do that during chemo/rads and all the accompanying cancer crap. Ideas/solutions?
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Mary, so Arm B!!!! OK! We knew you were getting the 'hard' stuff!! Glad you are doing better and only 2 more Taxol- WOOHOOOOOOOOOOOOOOOOO!!! You go girl!
I had a sigmoidoscopy because of the butt issue and bleeding for the last year! Came back normal, small hemorrhoids and pock marks of diverticulitis which he said was normal! And my butt has been doing and feeling much better, the further away from my last Avastin (8/6/09) that I get! Nose still runs constantly and hurts, but not as much anymore.
littletower: Welcome! After my first DD A/C and Avastin (I was in the Arm that went on for 10 additional treatments after Taxol ended), I had the raspy voice and bloody nose stuff. My onc and clinical trials nurse looked at each other and said 'she's on the 'hard' stuff'...they knew from my symptoms. They didn't offer me any solutions though...I just kinda dealt with it. The hoarseness was worse at the beginning of the treatments though, but I had to clear my throat a lot. I used a lot of the sugar free throat drops from Ricola and that did seem to help. Keep us posted on how you're doing! Best of luck!!
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Thanks K for your response. At least my nose doesn't bleed:) I'm going to ask my oncologist tomorrow about homeopathic remedies for the voice. Also have an acupuncture appointment on the following day, maybe that will help. I really hate not being able to sing. And I thought wearing a wig on gigs would be the worst thing...little did I know!
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Hi Kari! Definitely the "hard stuff". I was kidding before I got the results that it would be funny if it was the placebo after all the side effects I had. The nurse and onc did the same thing yours did- looked at each other, laughed and said I was definitely getting the Avastin. And that was before we got the results of the unblinding. Guess they get pretty good at knowing who is and who isn't based on side effects.
Glad your sigmoidoscopy was normal and that things are getting better in the butt department. That sounds so funny, but girl, I know just how you feel!! Mine is much better. I still get a little irritated because they have me taking so much iron because my hemoglobin is still a little low. Those little iron pills can really mess you up and makes for some hard stools. I still have the bloody nose also and yes, the nose does hurt sometimes. A couple of weeks ago, the nurse had the onc examine my nose because she had a lady once that put her finger in her nose and could stick it through to the other side. I did NOT need to know that!! Luckily, mine was fine. But I had to skip the last three Avastin treatments so I haven't had any in nine weeks. The side effects are finally going away, but not completely. That must be one serious drug!!
littletower- Welcome! I also had the raspy voice and actually still do, just not as often. It's getting better. They never really offered me any solution for that either. I guess there really isn't one. I also used a lot of throat drops and they seemed to help me also. Just made the throat feel better. I mostly used the Luden cherry ones. They are just to soothe an irritated throat. Sometimes Halls. Sometimes Ricola. The clinical trial nurse did tell me to use a Q-tip with some K-Y jelly inside my nose to keep it lubricated and that helps a lot. Sometimes the blood and yuck gets crusty and that hurts. Rubbing the Q-tip around helps that. Good luck to you! Like Kari said, keep posting and let us know how you are doing. I do read the thread a lot. I just haven't had much to say since they took me off the drug. There is a lot of info on this thread and someone will always come around soon enough to answer your questions.
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littletower! Oh good Acupuncture! Let us know how that goes with the throat issues. My hair started coming back in a month before my last Taxol. Where are you in treatment??
Mary - Well said!!! That's good advice about swabbing the nose, as I sit here mine is killing me!! Gross about the one lady's nose! man that is scary and I kept saying that Avastin is one serious drug too!
I met another lady through a friend that just finished chemo for stage 4 colon cancer and Avastin was one of the drugs, but she didn't have any of the side effects I did from it. Interesting...
Have a wonderful afternoon. I read the thread too, have it under My Favorites so I know if someone's posted.
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Texas Rose:
Thanks for the tips! Asked my oncologist yesterday about homeopathic remedies and got shot down on that one. I will try the throat lozenges. Don't. seem to have the nose issues.
Mary -I'll let you know how acupunture goes, I'm really hopeful. Who knows, maybe that will help the throat. Hair started coming out like mad yesterday, in big clumps in the bathroom. Directly after chem went and had it chopped off. Not sure if I look more like a rabbit or a chipmunk, probably a toss up:) Picking up my long wig today, matched to all the hair I just chopped. Man, ain't it nothing but fun!
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Good luck littletower, and I'm sure you're gorgeous!
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Hi, all--
I hope it's okay if I drop in here and mention something that was posted this evening by unklezwifeonty on the "Clinical Trials" forum:
"ECOG 5103 enrollment suspended. Anyone else on it? What are you gonna do?"
Sorry the link is so long. It's a news article that says Roche has suspended enrollment in the trial because 6 patients who were getting Avastin have shown clinical signs of congestive heart failure. That number apparently met the threshold they had set for stopping because of cardiac-related adverse events. According to the article, enrollment in the study was still 1,500 short of the target, which was 4,950 patients.
The article says this: "Patients currently in the trial can continue, but must discuss the development with their physician and sign a consent form."
Sorry I'm bringing you this kind of news, but I had not seen it anywhere else and I thought it might be important to you. BC really sux.
Hugs to all of you...
otter -
Otter,
Thanks for bringing this to our attention, it is definitely just cause to stop the trial. I do know the SE of Avastin had a potential of cardiac problems, the trial requires MUGA several times during participation. I have forwarded the notice to my clinical trial nurse to see if it affects me, I was in the placebo group so don't expect any changes. I would think my trial follow-up would still continue according to the original plan (every 6 months for ten years) but will ask her anyway. I am so sorry to read that 6 woman have been inflicted the worse SE of this drug, my heart goes out to them and their family.
I guess each of participants need to contact our Onc's and find out how we are each affected, and for those who did get the Avastin to monitor yourself closely.
thanks Otter for binging news that affects us personally we appreciate you taking the time,
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Welcome littletower,
Glad you found us, would you tell us a little more about yourself? How far are you into your treatment? Your bio shows mets, to what area if you don't mind me asking?
I only experienced minor hoarseness and a cup of green tea or a honey cough drop helped. I am sure a few of the other woman had a greater effect that maybe they can make a better suggestion.
wishing you a smooth journey and am glad you found us,
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littletower,
I have a list of my local acupuncturist and am waiting until after my next week meeting with my surgeon before I make an appointment. I am seeking alternatives to ridding myself of pain in my radiated breast, will make a decision after reviewing all my options. Let us know how your visit goes and what your thoughts of the process and likely of helping you.
stay healthy,
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Thanks Otter.
I posted this link several places on this website today but it looks like I missed this one! Besides WSJ, Reuters and NASDAQ reported it. Definitely official news.
My chemo is expected to start on Monday. I am looking for guidance from you all as to what you would do in my shoes.
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Aunty,
What regimen of chemo have you chosen ?
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Unklezwifeonty.......may I ask what chemo plan you have selected ?
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Hi ladies,
I visited my ortho on sept 11, a week earlier than regulary scheduled due to pain in the elbow. Ortho gave me a cortisone shot in the elbow and stopped the antibiotics. Said if it doesn't eliminate the swelling which should eliminate the pain he would be requesting a CT or MRI on the elbow to figure out what is going on. Elbow is still swollen, pain...pain, and slightly black and blue with lottts of black hair growing over the area of fracture. I might have to start shaving the elbow as the hair is getting very long. I asked why and was told the capillaries are regrowing causing hair to grow and it should slow down after a while. I did have to shave it a little because it started to tickle my arm. My next appointment is Oct 2nd, so excited but look forward to the pain going away.
I had my Onc appointment a few weeks ago and told him I was taking bhrt and he was not very happy about it, but I did explain I was feeling better so it was giving me a better quality of life. I have been having problems with my stomach since my fall in June, multiple symptoms that I am trying to rid by myself, kind of a self help approach. I have stopped taking my vitamins and spoke with my trial nurse today and am taking a vacation from my clodronate for a week to see if removing all the pills relieves the stomach symptoms.
I was recently asked to go back to my supervisor position, with the changes in the company I was needed to go back. I turned down the position because there is to much stress, long hours and BS. So I will stay where I am working, QA and make the same money, minus shift differential. Looking to move into a different position in the future,
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Getting excited about my trip, starting to look up information on all the islands. Spending one day a month with a friend doing the girls day away. October we are doing something in Philly but not sure what. Am still riding and eating healthy, even managed to give up most if not all of my simple carbs. My craving for sweets have really subsided since the start of my BHRT. Maybe my stomach problems are withdraw??? Still staying on the right path, just wish my body would cooperate.
Even if the trial is canceled we still need each other for the long run. We have many years of follow-up and support for each other.One good thing though, I have not read of any recurrence of BC for woman who have received Avastin in the trial.
take care and everyone check in so we know how each other are doing,
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Unklezwifeonty,
How is your health, it appears the heart is the most susceptible with Avastin. Maybe review your health and risks with your onc before you start, considering the newest information.
keep in touch with us,
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Carolyn,
How was the kids back to school experience? are they going to be involved in as many sports as last year?
your cruise is just around the corner,
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Sunris,
E 5103 is a double blind randomized study. You get 4 AC->12T and either a placebo or Avastin (either short term/medium term). So the only regimen we have "chosen" is 4AC->12T.
Regards,
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Dear Brena,
I have a healthy heart with low-moderate BP, usually 110/70 and 60% LVEF. No one has told me of any heart problems or concerns recently in spite of the numerous ECG's, chest X-Rays etc. One doctor told me several years ago that I have a heart murmur but not to worry about it.
I am realizing now that this not really new news. They knew upfront that Avastin can increase the risk of CHF. So before this trial ever began, they set a trigger that if >=6 patients out of first 200 develop CHF, enrollment will be halted and things investigated. (They did something similar when they were doing a clinical trial of Avastin for colorectal cancer in 2005. After 4 months, that trial was restarted with addition of regular heart monitoring). That trigger must have been reached in the last few days when the 6th patient reported CHF. Avastin was stopped for the previous 5 who developed CHF and their heart returned to its previous condition.
I am also guessing that people that developed CHF had higher CHF risk anyways, e.g. 1 or more age, family history, obesity, high cholestrol, ...
Hopefully the patients already getting treatment in E 5103 trial are/were aware of the risk of CHF and are already being monitored actively. But I am curious to find out what % of these patients will now opt out of the trial due to this "news".
I shall talk to the oncologist at my next appointment and find out what she thinks of the latest news and how do we mitigate the risk. If I am not satisfied, I am gonna beg out and just get 4AC->12T.
Regards,
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Dear Brena,
If you don't mind answering - where abouts in NJ are you going for treatment and do you like it there?
Regards,
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I had really weighed the risks of this trial before consenting, and my onc kept stressing this trial was a "risk benefit" for me due to the aggressiveness of the bc, so I went ahead with it. Doing fine!! and I'm done with the trial!! Good luck to those contemplating, talk to your oncs and go with what's best for you.
Brena, sorry to hear your elbow is still giving you problems and your tummy. BUT, am so happy you are looking forward to your trip.
Just passing through BCO...wanted to check in! Love to all!
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Hello all-Acupuncture went great on Friday (one day post 2nd treatment with A/C with Avastin - which we know due to voice hoarseness and now nose bleeds). So far much less "chemo cloud" and while I did crash on Saturday and slept for five hours it was after an hour long workout and post-nauseau steroids. Got in a hill walk again today so feel good. I think acupuncture also helped my voice, less hoarse and can actually hit notes when I vocalize, although nowhere near ready for singing out yet. Hairs going more quickly everyday, which I hate!
Brena, the mets I refer to in my bio are my lymph nodes, and I'm not sure if that is considered mets or not. I have invasive micropapillary cancer, a particularly agressive one, which had spread that much after only five months from a previous mammogram in which they saw nothing. BTW, where are you in Jersey? I work there now and lived there growing up. Hope your elbow improves and I'm sooo jealous of your trip. Stuff like that seems so far away.
Kfinnigan, glad to hear your doing fine post trial. Which arm were you in?
Hope everyone is enjoying this beautiful (in NJ at least) day!
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littletower, wow you sound like you're doing great so far!! I am in awe and bowing to you!! haha!!
I was in the arm that went on for the full ride! But I missed one out of the 10 extra's due to exposure to the Swine Flu!! go figure, only I would get exposed to that from my DD!!
Beautiful day in Northern California too!!
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I started chemo today and got AC + Avastin/Placebo.
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unklezwifeonty - here weeeeeeeeeeee goooooooooooo!!!!!!!!!!!! Hope you do well!!!!!!!!
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Thanks KFinnigan!
Hope the same for you too.
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Welcome newbies,
There are tooo many to name since I've posted. I have been busy w/life! not to mention kids. Otter caught my attention w/the newsbrief. I know my onc went over everything plus the additional info I found online and I still went for it. They did monitor BP/heart which made me feel good that they were following up on what the trial wanted them to do. I had no changes and hope to not have any changes later. I think just going thru chemo puts a strain on your body let alone your heart. I did have a heart murmur when I was young but it was one that I grew out of (or at least that's what I was told). Maybe they will look to see if the 6 BC patients had anything in common prior to starting treatment. It seems that the majority of us who did receive the drug are doing fine. My sinus's are pretty much back to normal. It only took less than a year!
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Hi Brena,
Kids are back doing soccer...school and travel! I also have my youngest who is going to Seacoast United Soccer Jr Academy for 7 months! This means in the beginning he goes 1x a week and when they have 8 weeks left its 2x a week! I have heard wonderful things about it plus is aint cheap! There's 4 on his travel team which helps w/driving him there.
Sorry to hear about your elbow! I have been hobbling around since Softball and just went to the orth surgeon on Friday and found out that I have a bone spur in my heel! Of course its on the left side...where else would anything hurt be! I start PT this week for it. The therapist gave me a couple of things to do which have helped. She hopes to get me back to norm w/in 3 weeks or the doc starts his injections which he said hurts. I should have had him ck my wrist but am so afraid that I need surgery that I don't want to deal w/it! I can say my wrist/hand has gotten worse and I will go this year but am pushing it off for now.
Glad to hear the BHRT is working. There's another women I work with who picks up her script this Friday. She is looking forward to it. My hot flashes have weakened and I am on a lower dose of Effexor (only 37.5mg). So hopefully by next year I will be off of that pill. I am looking forward to the cruise. Kids still don't know and hubby doesn't want to tell them anything but as we get closer they will need to get homework for the week they will be out of school! Well, got to get back to work. Take care and send us news of your escapades on your trip!
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I'm feeling very bloated since Day 1. I have tried SENNA-S, prune juice, apple sauce & bran. Hopimg this shall pass.
Starting the morning of Day 3 the sense of taste is gone. Everything tastes like mud!!!
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