Clinical Trial E5103
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Have not heard from Jackie or Jenni recently. Where are you guys? How are the treatments going? I have Taxol #2 today. Last time I slept through much of it, today I have a friend going with me - hope I don't fall asleep on her. The first Taxol did not seem to bother me but I know this is cummlative also. Every week kind of scares me. Can't wait for the 12 weeks to be over. Have to wait all the way to the end of Sept - boy that seems like a long time. Any advice from those that have already been through it?
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Swanny, I finished #3 AC on Tues. I am wiped out. Haven't gotten very far from the bed today but I am catching up on my reading. I am so glad to only have one more AC. As for the Taxol I hear from some of the other gang that the benadryl they use in the pre-meds is what makes us so sleepy with the Taxol. I have been driving myself to treatment but suspect when I get to Taxol I will be taking a "driver". LOL.
Anway, hang in there and when Sept gets here we will all be in a better place. Further down the journey road and getting hair back! Yay!!!
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Hello all. Haven't been around in a while, I just did my fourth and final a/c yesterday, woohoo, now just waiting for the se's to kick in. Number three was horrible for me, throwing up and all, could barely move, sooo hoping that doesn't happen yet again, especially since I have so many nauseau meds including the patch and they didn't work last time. I will be done with my taxol in October, cannot wait and soo hoping I am not on arm d of the trial, I just want to be done already!! I am sure everyone else feels the same way. Taxol is supposed to be a lot easier than ac, boy I hope so!!!
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Hi Swanny!
I just looked back at my calendar and saw I had a massage the day before Taxol #2. I remember wearing a white glove on my right hand right after finishing A/C #4 and into my first few Taxol's. My palm was peeling like crazy, it was so weird and I was trying to protect my skin. Found that Restoration Hardware sells a no crack hand cream that is wonderful!
My iron count was really low and they almost gave me an iron infusion midway through Taxol, but never did because it ended up I was running a fever. My emotions were up and down (chemo threw me into menopause, after my first A/C, and my body was trying to adjust). Other than that, everything went fairly well.
I remember thinking OMG I will never finish, seemed I was always at the lab/chemo room. You just keep plugging along and check each chemo off as you go. Take it one week at a time so you don't get too overwhelmed. Also, I kept wondering which ARM am I on...that was a mind game!! The whole SFBC (stupid frigging breast cancer) thing is a mind game. Hang in there, by now you are done with Taxol #2!!
Thinking of you girlies each day. xoxoxo
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I didn't see the last page and missed Jackie and Jenni's posts!!
A/C sucks! Yes I threw up too one week after each stupid A/C! They were switching my meds around trying to help me. I hated it!! Taxol is much easier on you than Taxol. I do have some mild neuropathy in a couple of fingers on left hand (BC side).
And your hair starts growing back a month before ending Taxol!!
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Big News!
Hey my chemo did not go well either Thursday or Friday. First of all on Thursday, they had a hard time getting the blood out of my port for the CBC before chemo. Once they finally got it the machine broke. We waited about 1.5 hours for them to fix it and when they did it said my Platelts were too low. We all thought the test was wrong because I didn't show any of the other signs. So they sent me next door to the hospital for them to do the CBC - STAT. They called an hour later and said all the tests were fine to come back in on Friday for treatment. So Friday was to be my second treatment of Taxol. They started by giving the drugs for nausea and the drugs to combat the side effect of Taxol. That makes me sleepy, so I was trying to sleep when all of a sudden I woke up because something was wrong. I was dizzy, I was seeing stars. So I started to say loudly (not yelling) , "hello, I am dizzy, I am seeing stars, something is wrong". Immediately they rushed over and apparently my face and head were red as can be. They asked me if I was hot and I felt my face and it was burning. They disconnected the Taxol and had a syringe that they put some medicine into the line in my port. Then they hung a bag of something and that started to drip in. Everyone was there, the 2 nurses that administer chemo, the Physician Assistant and the Nurse who runs the study. Luckily the drugs to reverse the effects worked properly and right away I started to feel better. It took about 5 or 15 minutes for the redness to leave my face and head but the dizziness and stars were gone right away. I was also having trouble breathing and that came back right away too. Kind of scary looking back but at the time, I was not scared. Luckily they did not kill me
and they told me I am allergic to Taxol.So what does this mean? It looks like I might be taken off the study. They will un-blind me and let me know if I was getting the real drug or the placebo. Bad part is, I might not get anymore of the study drug. They said they will have to have a meeting on Monday and decide what to do and what the study will allow and not allow. I will definitely be off of Taxol and they need to find another drug to give me. One of the nurses thought I might still get the study drug? I'll find out on Monday or Tuesday. I still need to go to chemo on Thursday for the new chemo.
Exciting day! Even though we were done early, they had me stay about an hour after the attack to make sure I was OK. They constantly measured the air in my blood supply and asked me questions. I had a lot of attention.
So like I said earlier - I might be out of the study (probably). I'll let you know when I find out next week.
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Swanny, I am so glad you are ok! I am sorry you had to deal with that. Please take care of you. I really hope there aren't any lasting effects to that reaction. I will keep you in my prayers. I have a friend who is a 10 year survivor. She also had a reaction to the Taxol way back when and they stopped it as well. Hang in there and keep us posted on how you are doing.
Hugs!
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Swanny sorry you had to go through that. I hope they keep you in the study. I will get my first taxol and I am a nervous wreck because so many people show allergic reactions to it.
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Swanny, what craziness!!! sorry you had that bad experience. Keep us posted, sending you big hugs.
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Have you all seen the report by the FDA, questioning the benefits of Avastin when used with other chemotherapy drugs? FDA said that the studies showed that the benefits were not significantly better and side effects were worse.
What do you all think?
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I am wondering the same thing?? Is it really worth it??
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Yes, I've seen the stories too...made me wonder. My last Avastin infusion was Aug. '09, and I am just going to believe that its working!! trying to remain optimistic!! Have any of you spoken to your clinical trials peeps or onc's? I haven't yet.
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Well this is just great news!
. Today I had a meeting with my doctor (well really my real onc is on vacation so I had to see another). I had to decide what to do since I was allergic to taxol. My options were to 1) take a different drug instead of Taxol and be removed from the study 2) stay on the study and only get the Avastin and I think there was a 3rd (can't remember now). Anyway - I opted to stay in the study because I am triple negative and I thought that Avastin would give me the best chance of beating the cancer. I think that the other drugs AC and T are the standard drugs for all BC (my girlfriend who had BC 14 years ago got the exact same treatment and she was hormone poisitive). So I figured this was something different - maybe help me out being TN.Looks like I might have made the wrong decision based on the news/articles out today. Guess I have to go back to the doc and study nurse and ask more questions. This really throws me for a loop. What do you guys think? An ideas?
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Swanny that is a hard decision to make. Isn't there another drug they can use instead of taxol?
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Yes. Forgot what it is called "taxerene" or something like that. Think tomorrow I will call them back and tell them that I changed my mind which means I won't be in the study - but considering today's news......
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Swanny, based on the articles I am seeing I wouldl at least have the discussion with the doc on your decision again. I have a friend (10 year survivor) who had a similar reaction to the Taxol. She had to stop it and they put her on Taxotere. She made out ok on that. She was also a Stage 11 DX by the way. We never really know how we are going to react to any of the drugs but with the new released data on the Avastin I would at least ask again.
I will be curious to see what my Onc has to say on Tues when I got in for last AC/Bev treatment. I am definitely going to discuss the articles and the info I found on the FDA sight. I hate to go 12 weeks of Taxol just to stay in the trial and have them pull it on us. I am considering pulling myself out of the trial and going dose dense on the Taxol just to get it done sooner. But I don't know.........
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Like Kari, I'm a year out from my last Avastin. I'm staying positive about it too because there is nothing else I can do at this point. It definitely had some side effects for me, but they are all resolved now. I just hope it helped in some small way and if not...well, it was a trial and I knew the risks going in. I won't see my onc until September, so I can't even get his opinion on it. I may contact my clinical trial nurse and see what she thinks, but like I said, for me, it's all water under the bridge anyway.
For those still receiving the Avastin, I would definitely discuss it with my onc before continuing. But I would think long and hard before I dropped out of the study too. It's not an easy decision either way. So much to consider and so many unknowns.
I wish you all the best.
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Ditto what Mary said!
Jackie, my once wanted me on the weekly Taxol from the start, she said it would be easier on me. She said the weekly doses are easier tolerated by the body in her opinion than the bi-weekly dose dense. Just food for thought.
Keep us posted on anything you all find out please! hugs
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RE: Avastin news
I talked with my Oncologist about the questions about the benefits of Avastin, and his answer was that the questions about Avastin's benefits apply to metastatic breast cancer, not early stage. Our trial is about finding out whether or not Avastin is helpful in early stage breast cancer. I understand this, but still wonder if Avastin is not helpful in metastic, will it be helpful in early stage? Of course, that is what they are having the tria to find out, but it is unsettling.
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Gang, two things - I did my "Quality of Life survey" today for the trial. I asked the Research Nurse if the FDA made a decision to pull the approval would it affect those of us in the trial. Her response was not likely. She said it would probably be at least Sept before the FDA made a decision. She indicated that I should talk with Onc next week about any and all my concerns either way.
Second, after three days of loose bowels and the sore throat (post nasal drip sore) I called the onc office. They had me come in right away for some blood work and a stool specimen. Turns out I have an intestinal infection. They also tell me the throat thing is one of the SE's common to the Avistan but there's no guarantee that is the only cause. Of course, there is also no way of knowing if I am getting the real thing or the placebo. So....at least I got to TX #3 with minimal SE's. Hopefully the mega antibiotics they gave me will kick the infection thing and I can still have #4 and final AC next week.
Some days it's like pushing rocks up hill! I just hope I remember to step out of the way if the rock rolls backwards. LOL
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Hi Im Teresa, for those of you that don't know me. I like to pop in now and again just to say hi. I finished this trial in November 2008, I was in Arm C. I was a little concerned about the reports but I dont regret doing this trial. I believe in this drug and I am still hopeful that it will help us all. I plan on asking my onc and the trial nurse when I see them in Nov about all of this. I would love to hear how Brena and Carolyn are doing (hint hint Ladies!)
Teresa
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hi ladies,
OK Teresa our time to pop-in and make an appearance, per say. I do stop by and read the posts from time to time as I hope all ladies who have posted will do.
I am doing pretty good health wise still NED. I recently had a bone scan due to constant lower back pain which peaked its head in June of 08 and disappeared until recently. So the Onc requested a bone scan to ensure the BC was sneaking up on us. I am fine and am trying alternative methods to help with the lower back discomfort. I also am still having pain in my radiated breast (lumpectomy+rads) and have been through the medical madness so am now going forward with surgery to get relief. And the most ANNOYING is I have 2 large toenails and 2 fingernails detached, fell or falling off and can you believe this is from Taxol 2 yrs out. Onc just said "yup." but they are regrowing and i hope they stay on this time. This is the same SE i had when all taxol didn't think i would still have this symptom, but it is better than having neuropathy. I am exercising on a regular basis (5 X wkly), alternating the method and having fun doing it. and am eating a lot healthier and becoming a little more knowledgeable to make better decisions. Don't get me wrong once in a great big blue moon i give into my indulgences but make it far few in between. I am now starting to take vitamin D3 because my level is at 25, was 26 in March and I spend much time in the sun and tanning booth in the winter, am golden brown almost all year long and just don't understand why my levels stay so low. Think i may jump on the natural girl thread to get more information on the topic. My hair is still very short, above the ears and still refuses to grow so the hair dresser still just trims to make it even but the hair has shown more growth in the last 3 months than the last two years. I figure when i notice these little things over the BC my life is pretty good.
I am working full time and feel lucky to continue to have my job, I am moving on and trying to find the new normal because the old will never be again and if i seek it i will surely get very disappointed. I do realize my new life will be filled with new medical tasks at least for a few years but i refuse to give my life to it and its black cloud. So a friend of mine and me made a bucket list early last year, 2009 and have kept adding to the list with desires for new experiences. These are small to large desires that we want before we get to old to enjoy, some are very physical: parasailing, white water rafting, free falling etc and I continue to travel around the world which I so enjoy. Our yearly goals are that every month we must experience something new and it could be a simple as watching a show or listening to a radio station, going to a show, having lunch with someone totally new (sharing a table with someone else), that we would never otherwise do. I have found these experiences have made me a more rounded and understanding person and I will continue with them. I still struggle with lack of sleep, 3-4 hrs a night with no naps, etc etc etc. This has been the pattern since diagnosis and i guess will continue until an unknown time.
The rest of my health physically and mentally is fine and as i said working hard to maintain my physical health. To date i don't think any ladies from this thread and trial have had a recurrence, am so GLAD. My daughter is getting married Oct 1 2011 on what will be my 4 yr NED anniversary should I make it that far. Good things in my life.
Help support each other thru your experiences and you will get through this and I hope you will get your life back in a fashion you can live with. One word of caution, please be very careful about information given on any topic especially drugs you may be taking, this is very dear to your hearts at this time and you will jump to attention when these words are given over the tv, newspaper, conversation etc. There is much information and it is usually very biased, almost all do not report where the information came from, who sponsored the research, where and how long was it performed, on what subjects (which can be very different than your individual situation), did those who did the study have a personal interest etc. Through my years of reading and listening to more wiser ladies I am learning how to ask those questions before jumping to conclusions. The TV is one of the worse influences that we can have.
In May of 2011 there is a BC survivor cruise, open to all people, for 7 days in the caribbean and this is a great opportunity to meet each other and other BC woman from our the country. Please consider going, this would also make a great way to reward yourself for completing such a major event in your life. Hint, hint Teresa
My book is complete.
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If the drug does not help with metastatic breast cancer, there is little reason to believe it would help early stage. I am sort of glad I had to be pulled out of this study after 4 infusions of Avastin.
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Hello everyone. Just an update. Since I was allergic to Taxol I pulled out of the study also. I just got a call from my study nurse and I was getting the real drug. So if it does help, I had 5 treatments. If not, no harm done. I start Taxotere this Thursday so at least I will be getting more chemo. Hope everyone is fine. See you around the website. I might go join the triple negative forum so I can keep up with the latest news.
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Good luck Swanny with your new drug. I will have my first taxol treatment tomorrow and think I am gonna pull out of the study also. See you over on the the triple negative board!!
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Swanny, glad to hear they are going to still continue your treatment. Let us know how you make out with the Taxotere. Keep in touch.
Jen - I discussed with Onc today on his sentiment on the FDA findings. He admits to not really reading the data yet. Great - I did! Anyway, I am going to take two week break before the start of the Taxol. I am going to have the latest MUGA done and UPC. When I see those results I am going to make the call on withdrawing or not.
Finished AC today. Not as tired this afternoon as I was last time. Hoping the SE's aren't as bad. I was fearful of the lymphdema screwing up the TX but onc said he was ok as the swelling has really started going down and I am on the antibiotics.
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Jackie, Glad to hear your swelling has gone down, hope it continues too. YAAAAY on being done with AC!! My third ac was horrible but the last wasn't bad, hope you are the same. Let me know what you decide on the trial.
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Jackie - Congrats on being done with AC. Hope you do well with the Taxol.
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Well I did my first taxol yesterday, no reaction yay. I decided to stay in the trial but I told them once I am unblinded if I am in arm D (the arm that moves on for ten more treatments three weeks apart) I will definitely drop out then. I want to have my exchange surgery as soon as I can after treatment (these tissue expanders SUCK) and I definitely don't want to wait another year! So I am still in it until October, then I am done.
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Jenni - glad no reaction yet! I hope that continues. I am probably going to take the same approach you did. No arm D for me if I am actually getting the drug. And I am right there with you on the expanders. I am tired of the whole thing actually!
Hang in there girl!
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