Clinical Trial E5103
Comments
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unklezwifeonty- I miss my taste buds! For awhile, everything had no taste. Now everything tastes awful. My last chemo is next Tuesday and I hope the taste comes back fast!! Good luck with the AC. I won't lie. It was rough, but it's do-able. We are here to hold your hand!!
littletower- Wow on the working out! You must be feeling good!! Sorry about the hair, but it's a necessary evil. If it's any consolation, mine started growing back about halfway through Taxol. It's not "hair" yet. Just peach fuzz, but it's a start!!
I'm not expecting any permanent heart damage from the Avastin even though they took me off the drug after five doses because my blood pressure got so high. It has come back to a much more normal range now. I have had regular ECHOs and EKGs and will have another on 10/20. Hopefully all will be normal.
Good luck to those of you who are just starting out! The time really does pass quickly. I started chemo on May 27th and will finish this coming Tuesday. Looking back, it has flown by although it didn't seem like it at the time!
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Hi Rose,
Was your BP high to begin with? Did you have any other heart risks, eg age, family history, high cholestrol, etc.?
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Hello
I had been on the Avastin trial since April. I finished chemo August 18th and was then selected to move on to ARM D of Avastin. Since finishing I was given two more treatments. Monday I saw my doctor and was informed of the trial being canceled, but that I had the option to continue. I asked the oncologist (whom I trust with my life) his opinion. He felt that the risk is too great and that I have had enough of the drug. So I went with his recommendation. I have to say I am a little nervous about not getting it now. Just because I sort of felt like this was the last of my "systemic" type treatment. I know I will be starting tamoxifin soon but the avastin was sort of a security blanket for me.
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Dear Stephanie,
Yea you have hormonal therapy to bank on so Avastin is a risk that you can do without.
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Stephanie, I understand how you feel. Join us over the Bottle of Tamoxifen thread, great group of ladies and we laugh laugh laugh each day!! We all pray that the Avastin we received will do the trick to prevent recurrence!! at least I do!!
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Texasrose - This is my first post to this forum - actually had not noticed it. I too, am on the Avastin clinical trial. I won't be unblinded until I complete 12 weekly taxol treatment. Have not had a runny bloody nose, but have seen some blood - dr. said it could be chemo just drying out the nose. I normally have high BP and have been on medication for several years - but it has really gotten high. May I ask about your butt issues. You can send me a private email if you prefer. I'm really having some intestinal issues. Thought it was coming from an antiobiotic, dr put me on, but it's going on 2 weeks now. I never experience this throughout 4 AC/ every 3 weeks.
Pam
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Dear Pdaw,
The intestinal issues could be from Avastin. It can cause GI perforations and bleeding. Do talk to your doc about it.
The BP increase is definitely from Avastin.
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I haven't posted in SO LONG! I read your posts and your strength helps me daily.
Kfinnigan, Brena, Texas Rose, Gramof3, thank you all for your kind replies when I've had a question or needed reassurance. Sorry I haven't responded sooner.
Here's my update if you're interested: After 6 doxes of Taxol, we waited a couple of weeks for improvement. but Dr. took me off it because of pain and issues with hands and feet. My feet haven't returned to normal and I'm not having quite as much pain, so I think its good we quit at 6 tx. They say my port has to be repositioned because of a permanent stitch trying to surface. But I'm pretty much unscathed! Mouth sores gone, taste has returned, and I have lots of funny looking hair. Eyebrows and eyelashes are growing back--still very short. I look funny but I'm smiling a lot.
TexasRose, hopefully your taste will return although I know you had the full 12 wks. I've not heard of that being permanent. Mine returned almost immediatly after Taxol. I'm sending my most positive vibes your way! You are such a fighter and you've done so well! How are your feet, fingernails and muscle pain? I'm glad your BP is going down.
I was started on Femara, which I've found out ALSO makes you hurt! But I have to take it ( I'm strongly ER+PR+) (at least the Avastin doesn't hurt.) at least I don't think its causing these aches. I don't feel the Dr believes my pain or isn't very compassionate and is too busy for my questions. We just don't click anymore so I'll have to decide what if anything can be done about it. But hey, I'm STILL positive and have lots of support at home!
My energy is returning and mental state remains positive. I'm really busy and have finally started working out although I'm very stiff and my hips and my hands hurt a lot. I feel older most of the time, physically but I refuse to let this win so I don't slow down.
I found out last week that I AM on Avastin. I didn't think I was because no bad symptoms.. So then I hear the breaking news about this trial. But before beginning the trial I was counseled about possible heart complications. I really researched and weighed the risks before signing! I'm going in this week for another regularly scheduled MUGA. I am anxious to talk to my onc (if there's time for me) about it again after we get these MUGA results.
Kfinnigan I'm so happy for you that you made it through chemo!! Congratulations.
Brenna I hope your elbow situation improves quickly. You're inspiring with your bike rides. I'm thinking of buying one to start riding with my DH, who also runs marathons.
My best to you all. You have helped me so much! I'll try to be more active here.
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Pam, welcome! I never got the BP increase from Avastin, but the Taxol caused my heart rate to stay over 100, about 124 for over a month before they put me on Atenolol, which is for high BP, and I stopped that drug after Taxol ended. I did have the 'butt' issues though, my onc thought it was a fissure, but a sigmoidoscopy revealed some small hemorrhoids but didn't see a fissure. Still having minor issues but no more bleeding.
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Dear Foobs, sad to hear that your doc does not spend time with you.
Dear KFinnigan - are the hemorrhoids from Avastin? I did not get any from 2 pregnancies - or they healed very soon - but I am scared about getting them.
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Crap, just learned from this forum about trial cancellation. Yet another decision to make. Was hoping to get the extra benefits of Avastin since I can't get rads due to previous chest radiation with Hodgkins as a kid. I go for MUGA next week. Next skd Avastin is a week from Fri. Curious what others decide?
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Hi ladies,
I sent the trial article to my clinical trial nurse and this is what she replied. The trial is temporarily closed, this is the scheduled stoppage point. Most trials have a stop point designed in so data can be reviewed as setpoints. This was the trials scheduled stop point, the trial is expected to reopen but am not sure when. There are 9 woman reported to have adverse effects that are being reviewed but no more details were provided. Apparently my nurse was aware of this stopping point and did say that I would receive information in the mail
Hang tight,
I have my appointment with my surgeon to discuss my options for relieving my breast pain caused by the scar tissue.
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Dear Michelle,
The trial is not closed. Only new patients can not enroll at this time. Patients already enrolled need to review this development with their oncos and can choose to continue after signing a consent page.
Dear Brena,
The nurse is right on some counts. This suspension was built in as "if 6 or more cases of CHF are reported from the first 200 patients receiving Avastin, the enrollment must be suspended and data reviewed for safety". The number of patients with CHF from the first 200 patients is 6 not 9. That works out to 3% risk of CHF which is consistent with previous trials as well as clinical use of Avastin.
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Onty, My butt issues started from my first dose of Avastin and are still hangin on, but (pardon the pun) not as bad anymore, never had these problems before, but it was the bleeding during BM's that scared me! I told my onc every visit and that's why she examined me months ago and thought it was a fissure. I've met a few others that got fissures from chemo, not necessarily from Avastin but from chemo. It tears up your GI tract. My tongue still has a small 'burnt' area...which used to be almost my whole tongue, so things are improving...oh and my septum still kills!!
But I am a firm believer that the Avastin was worth it for me!!
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Dear KFinnigan,
Belief is 50% of the cure, so I am sure Avastin was worth it for you. Thanks for sharing your butt issues. So far I don't have any but then I am not pooping either
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unklezwifeonty- No, I was keeping track of my blood pressure for my PCP and it was normal before I started chemo. I have no prior heart issues and my preliminary ECHO and EKG were normal. I do have a family history of hypertension. My cholesterol levels are excellent. I also have had a very high rapid pulse off and on with from either chemo or Avastin.
Pam- I still have the bloody nose issue with one Taxol left. Mine was never a runny bloody nose either. Just blood inside the nose that would come out when I blew it. I have heard that the Taxol can also cause that, so that may or may not be caused by the Avastin. I have to assume that mine is caused by the Taxol since I still have it. I was in Arm B so I was definitely getting the Avastin though. I don't mind discussing the butt issues at all. Kari and I have talked about them a lot on this thread. I have no shame!
To put it bluntly, it felt like a cactus coming out. Very, very painful to go. My clinical trial nurse and onc have always just refered to it as my proctitis and he gave me a Rx for Proctofoam HC. It helped tremendously. Mine was not in any way an intestinal issue. It was all a butt issue. foobs- I'm sorry you had so much trouble with the Taxol, but sounds like you are beginning to feel better. Yeah for you on the working out!! So important. I have developed some very bad habits on this BC journey that I need to fix ASAP as soon as chemo is over. Don't let your onc blow you off. Make him listen to you and take time for you! This is too important.
If I had it do over again, I would still do this trial. I don't have any regrets that they took me off the drug because of the blood pressure issues, but I got 5 out of 8 possible treatments and I pray that it was enough for me. Being triple negative, I don't have a lot of weapons in this fight. I used everything I had available to me. Now I am signing up for the bisphosphonates trial.
Best wishes to all of us!
Mary
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Dear Mary,
Is the bisphosphonates trial (SWOG 0307) enrolling again? I had heard that trial was also on hold and they were going to possibly remove one of the arms before re-opening. Also not sure if bisphosphonates reduce the risk of all metastatis or only bone metastatis? A bit scared of ONJ. Like you, I am also a TN, and want to use all the bullets here.
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I haven't heard anything about it being on hold. I just talked again with my clinical trial nurse about it this week and we discussed the dental appointment I need to set up for it, so I am sure enrollment is still going on. Bisphosphonates only reduce the risk of bone mets as far as I know. I'm in a chemo fog from Tuesday's treatment (well...all the time anymore!) and the brain has stopped working. ONJ- I should know what you are talking about but I can't pull it up in my brain!
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There was briefly a supply issue with one of the drugs, but I think that has been resolved.
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Thanks Mary,
ONJ is Osteo Necrosis of Jaw (death of jaw bone). I am not sure if TNBC is likely to spread to bones. Good to know that the bisphosphonates trial (SWOG 0307) has resumed.
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Just found this thread. I am in the trial, just finished 4x DD AC - starting Taxol tomorrow with Avastin/Placebo. I discussed it with my onc and the trial nurse and decided to continue - and signed a consent because my heart scans, function and BP are exactly where they were before I started. However, a lot of the SE's mentioned I am suffering with. The bloody nose, tender mouth, dry nasal passages and the butt stuff. And....... I have to say the comment about it feeling like a cactus coming out is right on the mark! I am taking stool softners and probiotics daily and it has helped, but I dread each time I have to go. I was starting to feel like I was the only person having all of these crazy SE's.
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I figured it had something to do with the jaw necrosis. I just couldn't make the initials work. This chemo brain fog is ridiculous! And I was a medical transcriptionist in a former life! I just can't form a coherent thought anymore.
Welcome Jenn! Sorry about the butt issues. I know exactly how you feel. I just wanted to cry when I would have to go. I actually did cry a few times while going. It was so painful. But the Proctofoam HC really helped. The Rx one. Not the OTC one.
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Arrrrg, cactus is exactly what it feels like.
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Mary - Like you I'm a Triple Negative and feel like there isn't much else to fight with. I think I'll have to ask about the RX for the butt
- thanks for the information. -
Jenn, I am TN too. Yes, we got to use the bullets now. Our highest risk is the next 3-4 years and except the PARP inhibitors (BSI 201) and Angiogenesis inhibitors (Avastin), there is not much else on the horizon that could help us in case of metastatis. Let us know what to use for the cactus
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Cactus - LOL!! that's exactly how I felt!! I asked about the ONJ thing at my dentist appt in July cause I hoping to get on that Bispho trial (too late for me though)...and they said its so very rare, you really have to have poor hygiene to begin with...so that's good news!
Yes girls, have to fight with all the bullets now! and WE ARE!!!
Hugs and love, Kari
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Dear KFinnigan,
Thanks for the info.
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Kfinnigan,
So, the full ride huh? Good for you. I'm going to stick with it as long as I can. Did my hills today with my turban on, (got my head shaved yesterday). Man did I get some funny looks. Wait till they see me with my "Got Hair?" t-shirt:)
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I was also on the trial and went in for my taxol treatment today with the mind set of staying on the trial but my oncologist convinced me other wise. My b/p and heart scans have been normal but I have had to miss the last two taxol treatment due to my white blood cells being way to low. Study protocal wouldnt give me taxol or avastin til they recovered. I also had to get a 20% permanent reduction of taxol and Avastin and couldnt make up the two last treatments I missed. I would of been heart broken if I was on placebo. He says off the study that I can get regular taxol and take neupogen shots and can make up the two taxol. I did how ever get 5 Avastin treatments. So maybe that will be a benefit. I have had a bad butt issue, stool softeners have helped. No bloody nose but running clear on overtime!! Never go any where without tissue. I hope I will someday find out if I was on it. He thinks they will tell us at some point. My oncol. just doesnt like the risks when we are going for the cure and congestive heart failure is life long. He had to sell it to me because I wanted to stay on it. But the reduction of taxol and missed treatments wieghed heavy on saying no. Any thoughts.
love to all my peeps,
Cathy
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Dear Cathy,
I am surprised to hear that the study would not allow you to get the 2 missed treatments if your WBC's don't recover. But it is good that you shared this and now the rest of us know.
I think your oncologist gave you the right recommendation for your treatment. The choice in front of you was: get full dose of Taxol vs. partial dose of Taxol + (maybe) avastin whose benefit is not clear.
Good luck with the rest of your treatment.
Will they still unblind you, I think so too. But if they don't the doctor can ask the pharmacist to find out now and let you know later
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