Clinical Trial E5103

Brena - I'm glad to hear exercising helped.  I was asked by friends just yesterday if I thought walking as much as I've been walking could be making it worse - I personally think it helps both mentally and physcially.  Even on the days when I feel like I just can't do it I walk for at least 20 - 30 minutes, an hour on the good days.  My toenails and fingernails aren't infected, but have an unhealthy look with horizontal lines and slight discoloration.  However, it really isn't noticable to other people unless I point it out.

Unk - I'm sorry you don't have the energy.  We all have so many of the same reactions and so many different reactions to chemo and the medications that go with it, but if there is any way you can walk just a little it may help .............  With that said when my RBC and Hemoglobins were bottomed out it took every thing I had just to shower and walk for 10 minutes before I felt like I had hit a brick wall.  It was an awful feeling - an exhaustion I had never felt before and hard to explain.  When you tell people you're tired they shake their heads like they understand, but it's a different kind of tired..............I've seen controversy about the Procrit shot on these boards, but I was so bad I felt like I needed to try something and for me - it worked.   I'm just taking a shot in dark, but how are you blood counts?  Could that be part of the problem?

Well I was on the B arm so no more Avastin for me. I am kinda bummed, I had decided that if I was on C that I would continue on. Oh well.

I won't know until the end of January. Right now I am hoping for Arm B or Arm C. But I am uncertain how I will feel if I end up in Arm C about getting another 10 doses of Avastin. I guess I could cross that bridge when I get to it.

Dear Kari,

Long time! How are you doing? Good to hear your blood work almost all normal.

Littletower - sorry to hear you've been pulled, but I guess at this point it's better to be safe with the heart issues since they can't explain the discrepencies in the test.  Medical mystery - go figure.  (((Hugs)))

Kari - (((Hugs)))) to you - thank you for the support.  Glad to hear your blood work is climbing back into normal range.  Hopefully the RBC and Hemoglobins will climb so that you can regain your energy levels............. fatigue is hard to deal with.

I'm also in study, and almost certain I will stop participating.  Have seen that oncologists mostly recommend quitting.  Has anyone been advised to stay?  Has anyone received indication of receiving partial vs all AVASTIN?   Have not seen any response justifying staying given heart toxicity risks.  I've had 6 AVASTIN/Placebo infusions and am going for my 6th TAXOl tomorrow.  I'm also experiencing gastro-intestinal SE (bloating mostly), lack of taste or smell and bloody and dry nasal ducts.  But, I feel my hair is starting to grow back!  

This is my first post. Just joined group.  Looking forward to hear comments!

Carmen 

Carmen - Tough decision I know.................my onc left the decision up to me, but did tell me there wasn't any reason not to stay in the trial.  I too have the nasty bloody dry sinuses - ugh! I also have what someone earlier in the thread referred to as cactus butt ,  However, my gastrointestinal problems have gotten better - not sure if what I'm doing proactively helps, but I take stool softners the day of chemo and the day or two after and I take OTC probiotics to help keep my system regulated.  Although I get angry stomach and it gets painful from time to time it is much much better than it was before I started with the stool softners to counteract the chemo constipation and the probiotics to keep everything moving daily.  I'm also having issues with the SE's from Taxol........... but I decided to stay in the trial.  Not sure if it helps, but I've recently come across two articles on Avastin and they both sound really promising in that they really think it will help reduce the recurrance of breast cancer.

Good luck - and this is where to come for questions or just to complain, which I find helps when you're feeling bad.

Dear Zarpar,

Senacot-S is very similar in action to Colace. As generic, it is called Senna-S and sold by Walgreens, CVS etc.

Probiotics are available in certain foods (eg, yogurt, buttermilk, some juices, soy beverages) and in the form of dietary supplements (capsules, tablets, powders). In both probiotic foods and dietary supplements, the bacteria may already be present or added during the preparation of the products. Easiest way to get them naturally is thru' Yoghurt. Activia is 1 brand.

Just got back from chemo - this week is Avastin/Placebo week AGAIN........ I'll see how things go.  As of right now I'm still on the steroid high, which feels really good - I just finished planting my pansies and am trying to get as much as I can before the crash.

Hey all!

Just wanted to join Kari in cheering you ladies on!! I am 5-1/2 weeks from my last treatment and feeling better every day. Life is slowly getting back to normal. Hang in there!!! You will be done before you know it!!!

High five to you too Kari!!!  

Hello ladies - had my last Taxol today (make-up from one I missed while in the hospital which is off-protocol...oops!). Yippie! Although I've only had 7 Avastin treatments, I didn't quit the trial. Actually, go the letter finally today. Even with declining LVEF, thought I should leave the door open, since I'm in ARM C. I will get kicked out in December if I don't resume the Avastin however. I have another MUGA next week, and will finalize my decision then. Now I'm onto next grey area decision about rads. First was told no since I had rads as an adolescent; now they are saying maybe just to the chest wall. Goes to the tumor board on Monday. Then we decide.

Dear Michelle,

Did I understand you right that the onco let you make up all the "missed" Taxol and you still have the option of going back to take the "missed" avastin for another month? I guess previously I had understood that they won't let you make up the Taxol if you chose to stay on the study. The way I read your latest post it seems not too bad.

I'm guessing they have to have a little wiggle room in the trial for these things. 

I had the Avastin/Placebo Friday and as usual am not feeling good today, but Monday's are usually pretty bad, more so on Avastin/Placebo weeks.  I am soooo curious to find out if I'm in the trial or not just to see if the additional pains and SE's are in my head or from the medication.

For those on E5103 and the zometa arm of S0307 (bisphosphonates), do you get your zometa infusions same day as chemo or another day?