Clinical Trial E5103

Hi ladies, finally checking in!  Just got back to work from Avastin #15...3 more to go!!!!!  Yesterday was a 3 hr dr appt cram session.  MUGA, EKG, labs, onc visit.  Everything came back normal, although I did notice my AST level was 2 numbers above the normal range.  My onc ordered a bone scan because of some low back/hip pain I've been having since Feb. when I was going thru RADS and only sleeping on my right side.  I am working with a PT for loosening the left side and strengthening the right side...but she wants to make sure nothing else is going on (she doesn't think there is).  They had trouble at the lab yesterday getting a vein, the darn lady just jammed the needle in "oh that's blown"...then picks another spot and jams it in and got it.  This was after I asked for someone 'good' due to many sticks yesterday and chemo today.  Chemo nurse couldn't get my first stick either, that vein was blown she said, so she used my hand and left the IV in for the nuclear med dept.  Thank goodness!  I'm a little anxious over the bone scan thing, but will just pray its clear.

Foobs, how are you doing??  I haven't taking anything to help me sleep since finishing chemo and I still don't sleep that well, but better.  I am on Tamoxifen so wonder if that's affecting the sleep...I've read other women complaining about sleeplessness on the Tamox.  I remember with Taxo, they would give me steriod pills and then put Benadryl in my IV...as soon as that benadryl went in each time, I couldn't keep my eyes closed.  I would be so sleepy, but then wouldn't be able to sleep cause of the steroids.  As the end of my Taxol neared I finally said something and my nurse said 'oh you don't need that high of a dose of steroids since you've never had a reaction' and my onc happened to walk thru the chemo room and said 'absolutely lower the dosage to the min. for the steroids' and that helped.  That bloody nose was a sign to my onc and nurse that I was getting Avastin they said.  I also had a funny voice change thing going on at times too.

I asked my nurse (my clinical trials nurse) about the trial for the bones...she talked to both big wigs of both this study and that one and they said I don't qualify cause I'm too far out from chemo. 

Deb, how are you doing?  I tell people all the time that I think I have post traumatic stress syndrome.  I am a very upbeat smiley person and put up a good front but this whole 'journey' sucks! 

Gramof3 - who knows if everyone getting the Avastin gets the bloody nose...hmmm  Good luck on Taxol #5, you are getting there!

Janet, so Taxol #3 is done!  Right on.  Nice weather coming up too!  yeah!

Hang in there everyone!  We ARE doing it and getting through it together!!!  Be good to yourselves! 

Before leaving work yesterday, I checked my email for news from my onc (but she's off on Fridays) so I called my nurse.  She said my bone scan was CLEAR!!  but did show 'age related _____' (I can't remember the word she used now) something to my hip and shoulder.  I am SOOOO relieved, but need to find out from my onc on Monday exactly what this age related thingie is...

Foobs, I'm like you tiny frame 118 lbs now and fluctuate down to 114 lbs and HATE taking drugs of any kind so I completely understand how you struggled with your decision but AM glad you are trying the zoloft.  My hubby is sitting next to me on his computer and I was telling him about you and he even said, hey everyone is different and you girls need to just get thru treatment!!  I am so happy you are feeling good and walking and gardening, so therapeutic to do 'normal' activities!!   I was pretty stressed this week, with all the pokes I had to get, have bruises from my blood draw and bruises in other areas from the other IV and sticks.  That part always sucks!!

Hang in there all and I wish you a GREAT weekend and thanks for your well wishes for a clear bone scan! 

Hugs, Kari

Foobs, I just sent you a p.m. 

Brena,

Good luck in getting the BHRT rx!  :)  I hope and  pray that your Dr will give that to you. I know my sister said that helped a great deal and does not know what she would do with out it. In fact she said she would not continue seeing a Dr if they would not give it to her. But, she has not had BC either, Any way good luck with this first step to get your Rx.  And congrats on no layoff for you  !!!!

And thanks for the encouraging words. I think since I am finally done with the AC & T and a couple months out. I finished them 3-23-09. I am finally dealing with everything & realizing the new reality.(We are SO busy dealing with the DX and tx plan and getting thru each day I don't think it all sunk in until now !! )  I have always been the rock thru the crisis and then fall apart later.   And now baby steps to my new normal.  One thing I have gotten into reading and am really enjoying that.  

Kfinnigan,  Glad your bone scan was clear !!!!!!   Your posts are so upbeat they always make my day. Thank you

texasrose,   As Brena said welcome and congrats on getting that 1st chemo done ! :)  Let us know how you are doing when you can.

Foobs,  How are you doing??   My hair came out some after the 2nd AC.  I actually shved it after ti started to come out alot. I think 3-4 days after the 2nd AC I had my husband buzz my head head with the clippers I usually do his hair with.  That was a hard day for me.  How are you doing !!!!   (((((((((( Hugs ))))))))))   I too am thinking about anti depressants. My surgeon wanted to put me on them right away but I wanted to wait.  I think I might try them now as my onc is saying they will help with the hot flashes also and I think I might have kind of a post tramatic stress going on too.  Chemo kicked my butt with low blood counts and almost having to have blood transfusions.  I just took the winter to veg out and read and do chemo.   ANy let us know how you are doing when you can. I could not post much but I did come here for encouragment with reading the posts.    Hope you are doing good

Thanks to all you ladies who post and get me thought the days. Hope you are all doing well.  :)

deb:) 

Hi Ladies,

I haven't posted in a while - just busy with everything and trying to get back to normal routine. For all the newbies, welcome! I hope everyone is doing okay. Remember, the treatments will end soon and there is light at the end of the tunnel..Thank you for participating in this trial. I hope this info will be beneficial to all.

I finished my treatments on Dec 31,2008. So far, had one 3-month follow up. Had some cough - CT/X-Ray showed Pneumonia (thank god!). Still recovering from that.. Have pain in the ribs to due some muscle tear near the ribs! Haven't seen the gyno in a over a year.. I guess I should make an appointment soon.

Brena, how are you? Sorry about the stress at the job.. It's the same story everywhere..

Take care,

Desi.

Hello-

I just finished reading the thread up until now.  For everyone who has contributed their own process going through chemo with the Avastin trial, its been a great learning experience- thanks for sharing your story.  I started chemo therapy this past Friday, electing to be a part of the Trial E5103.  I'm dose densing A/C followed by 12 weeks of Taxol, so hope to stay on schedule and finish up this stage of adjuvant therapy by the end of October.  I find its a bit overwhelming to look too far out in the future... 

So far, I have not experienced any major side effects.  Ive taken daily 1 Emend, 3 Decadrons, and one Neulasta shot followed by 600MB of Ibuprofen.  In addition, I took a Compazine Friday night when I felt a little nausea and early Saturday morning. I've also taken Ativan, which helped me get a full night's sleep last night, or it could just be exhaustion from the night before.

 As far as changing my diet, I'm eliminating Soy products, Flax seed oil, raw foods such as cheese, honey, seafood, and adding more protein like fish and chicken.  I'm using Calcium and Vitamin D supplements daily. Im lucky enough to be going to a cancer center, and during my chemo treatment a dietitian came by to talk about my diet and brought a pamphlet - Breast Cancer:  A Road to a Healthier Lifestyle as a reference.  I know there is a variety of how people tackle diet and nutrition during chemo. What I was recommended seemed to be pretty basic and light on herbal/alternative remedies.  Oh yeah, I am rinsing with an alcohol free mouth wash, Biotene, 3 times a day.

Hope everyone is doing well!

Hi BC sisters!

I haven't posted in a while and see so many women who are contributing to helping  find a cure. 

Brena:  This week is the first week of no sports to run off to!  I will try and think of me this week.  I will be doing the 3 day walk on July 24-26th.  Heading to Boston the night of the 23rd and staying at the Sheraton w/my teammates.  I haven't been doing a lot of walking since the weather has been rainy and I have been running around and no time for ME.  Hopefully this week i will be getting back to the grind. I spoke to my onc about the BHRT and he did not want to go that route at this point.  I have a girlfriend who started it in April/May and has already dropped the amount and has had wonderful results.  The Effexor is in my opionion wearing off.

Teresa: Welcome back.  Haven't heard much from you in quite some time. Hope things are going well with you.

 Desi:  I am glad you are moving on with life.  I had a cracked rib and I know what kind of pain you are/were dealing with.  I still get some pain in my back side from it.

Piper22:  Welcome!  I have a question for you...Why are you giving up Flaxseed oil?  I am just really curious since I added it to my diet after I was diagnosed.

Well, I need to get back to work!!

C

Hi ladies

I haven't posted for awhile as my computer has been in the shop, but all fixed now!

I'm a week past A/C #3 and doing better this time.  I'm still very weak and have general overall pain, like a bad flu--- only worse.  Dry nose, eyes won't focus.  My onc nurse said that the steroids they give you with your A/C infusion do affect your eyes and it will resolve once steroids are over.

I feel so sorry for any of you with nausea!  I can't imagine having that and my heart goes out to anyone that has to experience that! 

I did decide to take a low dose of Zoloft for depression and I was not given me oral steroids for 4 days this time, only steroids with the infusion.  I can tell a huge difference!  Don't hesitate to voice your concerns about any of the drug side effects.  My onc team has been very responsive.

I also think it takes awhile to trust that your body can handle this assault.  I now feel that if I can do 3 A/C's that I can do 4!  And if I can do 4 A/C's, I can do 12 Taxols!!  I think the nasty surgeries I'm facing won't be as dreadful as the chemo. 

I hope all of you are getting through this.  It helps me so much to hear your gentle support.

Hi all, just a quick post to let you know I'm thinking of all you beautiful ladies!  We're getting there...

Janet0527

Thanks for the update on Taxol being easier for you.  I really hope its better than A/C for the rest of us too!   I'm now on day 8, of the third cycle A/C and still so tired!  Only one more to go---yippeee!!

I'm hoping your eye issues resolve after you no longer need the steroids.  LIke you, my eyes have gotten much worse, but I'll have them checked again after chemo.  I find I have to use stronger readers.  I also got large print books from the library which have really helped me pass the long days.

 My best to you all!

Piper22 ,  I'm through with AC and into the Taxol now,  and I've never had nose bleeds either.  I asked the research nurse about it and she said that not everyone in Arm B or C gets nosebleeds.  I'm hoping for B or C, but still suspect I'm in the placebo group.  Thanks for the dietary guideline information.   Take care--Helen 

Hi all. I havent been checking in for awhile, but see all the comments about eyes....I finished in Feb. and my eyes are still struggling. They did get better, but not enough. It is definitely a new challenge - always have on and off readers, got progressives, squinting ...whatever.....now some might say its age related, but it came on so suddenly and stuck. I just have to be accepting of this and learn to deal with it.

As for other issues, my nose still bugs me periodically. Gets sore and sinuses are sensitive.

my first quarter tests ....since my completion came back clear, and I am thankful for every day that I have. I am going on vacation shortly -  wish I could read more, but staring at the ocean or taking long walks is not so bad.... have a good weekend.