Clinical Trial E5103

Hi all. I was unblinded this morning!  Arm B!

I am pleased with this. I had my last Avastin (the real deal!) today and have two more Taxol treatments. Then onto radiation.

I am glad that I helped make progress possible, that I hopefully added something positive to my treatment plan, I feel I have had excellent care from my trial coordinator and onco. I think it also helped me focus on taking "action"  So overall, I think I am in a good place. Had I been in Arm C I was prepared for that and did think about that a good part of the afternoon.

Though hopefull I can move on sooner than later with the headache and sinus goop. Those were really my sides, but none intolerable. I did not have any short of breath issues.

It is late here - another side effect that I've had only after avastin infusions, but not nesc. after taxol alone. I stay up late and have a ton of energy. I could clean closets. Pay bills,  write email until the week hours. In two days, it will be a different story.

Brena, you asked about a number. He gave me 51058 - that doesnt fit with your sequencing theme - so I think maybe he gave me my secret Id. or something - not a randomization #;sorry about that. I can ask again.

Hi Brena and Teresa,

I am booked on the cruise.  I just need to get my flight.  My mom is also coming with me.  She's my biggest fan of moving on.  She was the same when I joined the Army way back when.  I am getting excited.  My kids want to know when they are going on a trip.  They get a little jealous now and then since they have gone on vaca's 2x a year and since my diagnose we have only gone on 1 vaca.  They are still bugging me to go back to Maui.  I might have to look at November or April next year.  As we get closer we can touch base on meeting.  My stitches are getting itchy.  My PT wants me to go to a hand specialist to have an xray to see if I may had arthritis in my thumb.  I will try and make that appt this week.  I am still having the problem with my neck/shoulder.  Almost like I pulled a muscle.  It feels great after I go thru PT.  I am sure it will correct itself w/PT and time. (Hopefully).  Hope all is well with you both.

Carolyn

Hi Brena & All,

I found out my trial # is 51246  but my trial nurse said she did not know if that was the number I was in the trial. 

I am feeling better these past 2-3 days hopefully my hbg is going up.  Hope everyone is doing well. 

We are leaving for Florida friday after chemo. We had this planned before the whole BC thing. I hope I can enjoy. It will not be my usual fun in the sun vacation. The onc did say I could walk on the beach and be in the sun a little just to put spf 30 on every hour.  I am taking alot of books and an umbrella to sit under. And we have a condo right on the beach soif I have a bad day I can still see the ocean. We are going to Bradenton Beach.  It will be nice to have some warm weather as here in michigan it has not been above 30 for a month it seems and mostly 5-10. 

Well byr for now and I will let you know how florida was next week. 

Blessing to you all. Deb

Hi Keryl

Its funny that you ask about that...my hair started coming in during taxol and I was worried that meant it wasn't working.  My doctor assured me that no that was not the case at all.  btw my hair came out again and I ended up loosing my eyebrows and eyelashes at the end of taxol.  So strange. 

I hadn't mentioned it, but I go in for minor sinus surgery in the morning.  I just cant take the discomfort anymore and Im sick of the antibiotics.  Hopefully this will help.  doctor says they dont pack them anymore so the surgery isn't bad.  I sure hope so.  I will let you all know how I do.  Think good thoughts for me!

Teresa

My understanding of the trial, the placebo is Saline.  Interesting indeed.

Teresa

u2av8r,

I had that happen w/the Taxol but not the trial drug.  They actually had to hook me up to oxygen and tip me a up so the blood went to my head.  We figured the reason was I did not take the dexamethadone the night before (Doc decided to try w/out the dex since I did well the week before).  That was the only time it happened to me.

Carolyn

Teresa,

I am also curious as to what the docs are going to do? I am  doing the same thing Desi is doing.  I spray my nose throughout the day and at night when I am sleeping, I wake up to spray again. I am waiting for the day when I won't need the spray bottle!  I am also looking forward to the cruise!  I am going to register for the 3day walk in Boston.  I just got my packet in the mail.  I need to start training! My girlfriend is going to do it with me.  A couple of things to look forward to.  I am also wearing a sleeve on and off.  When I wear it my PT says my arm is great.  How's your arm doing? Better I hope.

Carolyn

Bettylou,

How are you doing? Havent' heard from you in a while?  Hope things are going well and you are just resting.

Carolyn

Hi Carolyn,

 Thank you so much for your concern!  This Thursday will mark 2 weeks since my first treatment.  I am doing quite well and almost feel "normal".  The first few days after the treatment I felt a bit tired but fortunately no nausea thanks to the drugs they gave me before treatment and the ones I took at home the 2 days following. My appetite was greatly diminished those first few days but now I am eating normally.  Too bad as I would like to shed a few pounds! but also know that it is important to eat healthy during the treatments.  A few days ago I noticed a rash on my upper thighs and then later in the abdominal area and upper chest, now on my arms and hands.  Called my nurse pratitioner and she said it was OK to take benedryl as well as use the benedryl cream.  It has greatly reduced the itching but the rash is still there.  Did you experience rashes?  Don't know if this a side effect from the AC or possibly from Avastin if I am getting that drug rather than the placebo.  Big "?"!  No hair loss yet; just have to wait and see if I will or will not experience that.  Just in case though, I have purchased a wig. All new territory for me so it's just a question of "wait and see"!  Bettylou

Hi Bettylou,

It's good to hear you are fairing well.  I did not get any rashes but Teresa and Brena did.  I know my skin was dry but its usually that way in the winter unless I go somewhere sunny and use suntan lotion!  I think it might be a SE from the AC.  I'm glad to hear that your hair is still in tact. I remember I lost it on day 17.  Someone told me they lost it on that day to.  My hair was down to my waist and when I started losing it I just cut it short before shaving it.  It had been 25 plus yrs since I had short hair.  Everyone says that's the hard part.  For me, it wasn't.  I've also been a licensed cosmetologist for 22 yrs and maybe that's why?  I actually liked my bald head.  I would take my scarf off at work and walk around bald.  I guess i was comfortable in my skin.  I wore a wig here and there but it would bother me after 6-7hrs on the head. Make sure when you go for treatment to bring lotion.  I would put lotion on my legs which helped the itching.  Glad your doing good!

Carolyn 

Jen, I also was arm B; I  finished avastin 2 weeks ago. and my last taxol is tomorrow!! In the meantime I have a terrible sore throat, so dont know if more going on ... I have been healthy this entire time, despite others sick around me.   I am encouraged that you sinus issues moved on without intervention and am hoping mine do the same. 

I have been a warrior until now...but truly starting to feel the cumulative effects of all this.....BUT I am almost there and will keep on, keepin on.....thanks.

Hi Carolyn,

 Thanks for your reply and input. Still have the rash but have stopped the oral Benedryl after having taken for 7 days.  Will see my onc on Wednesday before my 2nd treatment on Thurs.  Anxious to see his reaction to the rash and if he has any concerns.  I have started losing my hair, right around day 14 after my first treatment.  Had my hair cut very short to make it less annoying when it falls out.  Most likely will start wearing wig soon, at least outside the house as still rather cool here in Atlanta during the nighttime hours.

Teresa and Brenna: Carolyn mentioned that you both experienced rashes during treatment.  Do you think the rash a reaction to AC or possibly to Avastin?  How long were you bothered by the rash? Were you prescribed an antihistamine to deal with the itching, etc.?

I have appreciated all of your comments thus far - thanks so much!

Bettylou

Brena,

Where are you??? I am getting very concerned here. Has anyone heard from Brena?

Carolyn

All

I haven't seen any postings from Brena either and was getting concerend as well.

Separately, did any of you on the avastin get a hoarse throat at all? I have just a bit of a hoarseness in my throat that has been somewhat persistent (even though I finished regular chemo 3 months ago and radiation about 3 weeks ago).  its not bad just very slight. curiuos if anyone else has had. I have about 6 more of the extra avastins to go.

Yes, I had (and still have) a hoarse voice!!! It was most significant the few days after avastin treatment. It isnt significant but its still there a bit.  Some people have commented on this, but I dont mind it that much, but coupled with the sinus stuff, I think I sound like I have a cold at times. My eyes still overly water periodically also, but I think that is the Taxol.

Ok, I go for staging for rads tomorrow - though dont think I start for another 2- 3 weeks as dr. said two weeks minimum after last taxol. (finished taxol last thursday but takes time to get out of the system) 

Also, speaking of rashes, I had a rash outbreak and itching on my hands and lower arms today. Red blothcy and little bumps. It is more than dry skin.  I used Sarna lotion and it helped.