Anyone starting chemo in Aug. 08?

Hi, all ~  Thought I'd check in for a change, instead of just reading, which I do all the time.  When I post these days, it tends to be on the Motivation thread and Natural Girls thread, as well as encouraging words to newly dx'd women.  But I do check BCO every day, unless I'm out of town, so am easy to reach.  

Jeannine ~ Great to hear that you are close to being in the PARP trial.  How do they determine who gets the actual drug vs. placebo?  Is it totally random?  You know I think about you all the time and constantly pray that you will get into the trial and have amazing results with it. 

Corinne ~ So glad the Neratinib trial is finally underway!  What I don't understand is, when it's a chemo drug trial, can't you tell from the way you feel (fatigued, upset tummy, etc.) if you're getting a drug or a placebo?  How long is the trial, and do you know how many women are in it?

And thanks for letting us know about Lisa.  You are such an angel to keep in touch with her.  I don't know if she reads here, but if so, Lisa I am praying for you.

Gail ~ Good to see your post.  Have you been leading any training seminars lately?   We really have to make time for a smoothy!!

Misty ~ I also wondered if you'll be at the Palm Desert condo again his year.  Keep us posted!

I'm still trying to find my new normal, as I know many of us are, trying to figure out where to put my renewed energy that will give meaning to my bc experience.  I feel a need to do something more altruistic than my sales & marketing background, but I still have no idea what in the world that is!   In the mean time, I continue to work on strengthening my body with exercise and nutrition. 

Shout outs to everyone else I may have missed ... Deen, Joyce, Alibug, Stacy (some of whom I see on Facebook), and to our Aug 08 sisters who no longer post, like Roya and Karen.   You are all very special to me.    Deanna

Thanks Deanna. So good to hear from you! I understand about picking up the pieces.  I'm not there yetAs soon as I lick this crap I'd like to teach CCD classes and volunteer at the breast cancer store.  The PARP trial picks Arm-B randomly by computer. So let's hope I get in the 1st time. I should find out by next Tues.

Deen: Thank you. I'm hoping my luck is changing and leaving it all up to the Lord. I get the drug after if I don't the 1st time. Keep those prayers going!

Wishing everyone a great Valentine's Day & weekend.

Prayers & Hugs,

Jeannine

I'm so sick of cold weather here in Texas, but I feel so bad for all of you going through the really hard stuff up north.  Stay warm!

Deen

Just thinking of you all - with love...

Gail 

Hello all,

 I find out tomorrow if I get in..(think I will) Chemo will be scheduled for Wed. and if I get randomized for the new drug I'll also go to UCLA on Friday.  (Day 4 & 8). Did my blood work and EKG today (all okay)..

Keep praying I get in girls! I'll update you tomorrow- hopefully with the good news.

Jeannine

Hi Deanna & all: Okay just received the call from UCLA awhile ago and  I'M IN THE PARP STUDY!!  Amen!  The not-so-good news, I didn't get randomized for the new PARP inhibitor BUT if they see any progression, I'll get the new drug quick and will crossover to Arm B. Needless to say I am happy. They will be monitoring me very closely and I'm @ UCLA too. Hopefully in a few weeks they can transfer me to a site close to my home. Tomorrow is day 1.  I will be getting Carbo & Gemzar chemo on day 1 & 8.  (Gosh I hope this is my last cycle)..I'll also have a CT every 6 weeks ( or 2 cycles) I didn't have Plan B and truly didn't feel comfortable going back to my old Onc. Let's hope this works!!

Corrine: How are you doing on your new drug? Are you in Arm A too?

Thinking of you all. Love yah.

Jeannine

Corrine: 

Hi Deanna,

 Yes. I am in Arm - A the group that gets chemo only. (Arm B is getting chemo & plus the PARP inhibitor). If they see progression I can cross over. I was hoping to get in the 1st time since it fractures the single stranded DNA (chemo fractures the double) so it's a double whammy and very good for BRCA+ folks..so let's see. I believe Carbo & Gemz is probably like AC/T maybe not as harsh but I've already had the hard stuff and never puked so I'm ready! They told me I'll be @ UCLA today for 3 hours.  I'm getting both chemos. Usually it was once every 3 weeks but I'll be having my 2nd dose next Wed .day 8. So hopefully yes I'll kick those damn cancer cells out.

That is so sweet of you to offer to drive up with me. I'll let you know how it goes. I'm leaving work early today then heading out to SM.  Hopefully they'll be transferring me to the clinic in Whittier in a few weeks. I'll keep you posted. I'd love to see you.

Jeannine

Thank you Gail. I am inspired and happy. All those prayers have been heard. Let me tell you, I was a little bummed because I'm not getting the new drug now but when the Dr. came up to me and told me how happy she was that I made it, I was happy.  She told me only because of my  perseverance and efforts did I get in. I made it out of only 3 people who were accepted. Can you believe that? The screening period was for only 2 weeks and if your blood work or EKG results were bad, you were excluded. Many didn't qualify.  I have some concerns (& so does UCLA) that they should have offered a 2nd screening to have those potential patients get a 2nd chance. There are so few trials for us TN's! But I am blessed to have made it. It was a great day. Next session is next Wed.

Also: no SE's so far. They said I will lose my hair but another member on board said just thinning so let's see...

Thank YOU all for you incredible support! I wouldn't have made it this far.

Much love,

Jeannine

Jeannine: I AM SO, SO, SO, HAPPY for you!!! Praise God!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Still praying with our church for you!!!

Thought I'd change my profile picture as well since I was on here!!! Those are my 2 kids - Ali & Gunner at Christmas dinner...........Ali will be 15 in June and Gunner 12 in August!!!! They are great kids!!!!

Hello everyone!

Luvin the new avatar Alibug. Your kiddies are very nice looking.

Deen: How exciting your DH won 2nd runner up in the cookoff. He must make a mean bbq! My DH makes some delicious ribs too. Glad you had a ball.

Well I got a little sick last Fri. & Sat (only extreme fatigue) nothing else, then recuperated Sunday. Had TX#2 on Wed. The drive home took almost 2 hours but was worth it. I thought I'd be feeling yucky today but so far so good. So let's see. Next week is my off week (yeah!) Boy they certainly monitor you closely @ UCLA. My previous onc. didn't. Funny too, my rt. side is not throbbing like before. If I'm well tomorrow, I'm headed to my Jr. High reunion. FB is so neat. (I'm addicted) So nice to meet up w/old friends from 28 years ago!

Have a great weekend all,

Love Jeannine

So happy you are handling it well Jeannine.  PM me if you ever want to talk while you are recovering or anythime else! 

Just bumping us up............my daughter Ali goes in for a MRI on her ankle tomorrow. She ripped the tendons and legiments in her right one so it is looking like she will have to have surgery on it......  Please keep her in your prayers - she is VERY nervous!!!!! Loves to all................

Hello everyone!

Boy do I have a lot to tell you!! Well my Dr. @ UCLA wanted me to obtain a biopsy on my rt. axilla gland ( just to be sure) so I met w/my old surgeon yesterday. Well I was the last patient but I could hear his big mouth talk about me saying, "I shouldn't be doing chemo, this patient has initiated a lot of her own procedures, she's BRAC+ yada, yada, CT is clear". I know he is frustrated w/me because I called him on his comment on my last PATH report 12/23 and I was ticked. My DH says he knows he & my former onc. made some mistakes and assumptions about me so I guess they see me as a liability. So then the PA comes in, asks me what's going on. I tell her about me and the trial. She examines me and says she doesn't feel my lump. Then comes in the big cheese wiz surgeon and he examines me & immediately tells me, my CT is great and I don't have a mass...it is a SEROMA. I guess I looked at him crazy and he replied "I do know some things" and explained it's the fluid built up from my surgery. Well he drained it and is sending back to the lab for analyzing. I am dumfounded! He asked why I'm in a trial? If he's right, I may get kicked out of the trial and I don't want that. He did explain that I'm at huge risk for recurrence and that he's surprised w/the size of my tumor it hasn't spread and the CT will show up the seroma. He said I have a good immune system. (Must be the Montell smoothies?) What to do? My DH told me not to say anything. I'm waiting on results and UCLA Dr. can't see me for another week. I just need to be in this trial girls! Even though I may be on chemo for possibly no tumor, I think my body needs this. I am feeling great. Last week no SE's. Next Wed. is chemo. I'm curious what my next CT will show. I'm going to beg UCLA Dr. to let me stay. I mean I met all their criteria.

Alibug: Sorry to hear about your DD. I will keep her in prayer.

Deanna & Gail: I will be at Desert Hot Springs (God willing) May 14 & May 15. I'd love to see you ladies!

Keep praying I stay in the trial ladies!

Have a great weekend.

Prayers,

Jeannine

Deanna: No I definitely had a recurrence last year before Dbl Msx. My latest CT revealed a 4.2 cm mass in the rt. axilla. This qualified me for PARP. However, UCLA Dr. wanted to be sure it was bc and w/my history most likely was.(I had to wait for authorization & appt) However surgeon insists its not a mass, but  seroma -(cyst like) very common w/MSX and will show up in CT. Trial did not require a biopsy only CT result.  I don't know what to think except I'm happy I may be clear.  Now the fluid may indicate cancer cells so who knows?  UCLA coordinator just phoned me and I didn't mention this..ay yay. I'm so confused but just want to stay in the study!

Oh great! We sure will have LOTS too talk about...what amazes me is that I've been off chemo since November and if this is true, the bc did not spread elsewhere. Dr. says they usually see it show up in chest area. I'm still in awe.