Clinical Trial E5103

Jackie, I hear ya!!!  You hang in there too!

Hello all,

It's been a while since I've posted and just saw that I was a little behind Brena and Teresa! Anywho, I was in Arm D and did the WHOLE thing.  I think I was lucky in part due to the fact that I really didn't have a lot of the side effects that some of you have experience.  The worst SE was my nose!  I think that was due to the Taxol.  I was taking my flaxseed oil daily w/cottage cheese (as the German Doctor Budwig recommends).  I do think my eyes have gone a stray.  I have talked to my onc and he said that maybe its due to my age! HA! Can't believe that...I do need to have them cked though.  The other SE for me was the weight gain...that part sucked.  I have now lost 27lbs and sill have a few more to go before I am down to my Pre BC wt.  Things do get better.  I am sorry to hear about the expanders and the pain they can cause.  I will be hitting my 3rd year in October NED.  Remember to take time out for yourself and don't over do it.  ASK for help.  See if any of the local hospitals have a wellness center that offers free massages or reiki to BC patients.  My hospital has a program that does this and it was wonderful being able to go monthly for a massage or accupressure.  I highly recommend it.  I now go to my chiropractor and get tissue massage at least 2-3 times a month.  I have also done accupuncture which is fabulous!  Well, now that I've made another chapter here I will just leave you all with a {{hug}} and a  for the rest of the week/month!

Keep your thoughts positive! Take care.

Next Friday I will be unblinded......I am hoping to be in arm B.  If I am in arm C, I will have to make the choice to continue with Avastin after chemo, or choose to leave the trial.  So, I am looking for thoughts, pros and cons, from anyone else who has made this decision.

susiesue,

I had to make the choice and I had thought at the beginning that if I was in Arm C that I would stop at that point and not continue into arm D.  Well, I ended up being in Arm C and I DID continue on thru for another 6 months.  To be honest, it was fine.  It was much easier than doing the trial and the standard treatment.  During my chemo treatments from the start, I never really had any huge issues.  There was only 1 time my oncologist told me to not take the dexamethadone the night before and when I started receiving Taxol (my 2nd one) I got really hot and felt like i was going to pass out and they ran into the room and stopped it, gave me some oxygen and then started it back up slower and I was fine. My onc had me take the dexa the night before every time before I rec'd taxol and it never happened again.  I can say the only issue that was a major pain was my nose issues which stemmed from Taxol.  Does Avastin really help in early stage BC...I don't think anyone can answer that question until more time has passed.  All I know is that it has benefited colon cancer patients and lung cancer patients and I am hoping to see it in print one day that it benefited early stage breast cancer.  We would not be where we are today if no one got involved w/clinical trials.  It's sad to think that the percentage of people who sign up is very small... 11% or so.  Back to the trial...it's your choice and no one else's.  My husband wouldn't even give me a vote on the trial itself.  I talked to family and friends who supported me and gave me their input.  But ultimately it's you. 

Mitymuffin, I too had my fourth taxol on Wednesday with the Avastin/placebo.  So far I feel fine, knock on wood.  I am also on the twelve weekly.  Are you getting enough rest, or overdoing it?  We seem to overdo it when we are feeling good don't we.  I hope you feel better!!!!

well I was unblinded today in the trial and it turns out I am receiving the real drug and am in arm c which would continue on for ten more treatments every three weeks.  However, I am dropping out of the trial.  I already have my oopherectomy and tissue expander exchange surgery scheduled for November.  I cannot wait another year to have my surgery, I want these rocks out of my chest!  So hopefully they can use what info they already got from me on the trial.  I have two more weekly taxol treatments left WOOOHOOO.  The light is near!  I hope everyone else is doing good.

I hear ya Jackie!  I just want to be done now haha.  Plus I am thinking that the risks outweigh the benefits with the avastin.  Especially the kidney problems right!  It is hard to imagine that we are almost done isn't it.  When this whole thing started months and months ago I didn't think we would ever get there!  Almost time to celebrate for sure!  Good luck with the rest of your treatments.  Keep us posted on what you decide.

Thanks for the update Michelle.  I am due to be unblinded on Oct 21st.  I am anxious to see if I am actually getting the Avistan. 

Dear LMank,

The jury is still out on whether Avastin works for BC or TNBC. For any doctor to say that they are treating people with this drug and it "works" is a bit premature without data. Is this Dr. Cecchi treating patients using Avastin as a single agent?

Dear Laura,

That sounds politically correct and reasonable! By the way, I participated in the ECOG 5103 study too. Every doc that we spoke with - and we spoke to quite a few! - said that it was a "good study" and encouraged us to consider joining. Maybe I am splitting hairs but I did not hear any of them say that the drug works.

Dear MityMuffin,

I hope so too. 

Ok so I was in the Arm B and getting the Avistan.  I had my last round of it yesterday.  I was glad to know I actually got the drug.  Any additional weapons they can give me to kill this beast in me is a good thing! 

Hi ladies,

I have not posted yet as I just found this forum as I was doing some research on this clinical trial and learning that a lot of people find the benefits don't outweigh the risks so of course it makes you question things.  However, I suppose like any trial it is always going to be highly controversial.  I have my appt tomorrow to sign the consent forms and then start treatment the 9th.  Anyone else out there going through this trial right now?

Leigh

I also finished the trial in August of 2009. I was in Arm B, so I recieved 8 rounds of Avastin. Knowing what I know now about Avastin, I would do it again.

Take care!

Hi Mary!  Doing well, are on Facebook??  I see my onc on Dec 16th, 4 month checkup.  Last visit in August she stretched my next appt out to 4 months.  How about you?  I think of you too