Anyone starting chemo in Aug. 08?

alibug05

I just want to 2nd Roya's post!!!!!!!! Loves to all....................

g94u67

Hello there,

Boy do I have a lot to tell you. But 1st:

Bette: I am sooooo happy (Praise God!) Your bone scan is negative. He IS hearing our prayers and like my good friend said, "Working on HIS time". I'm glad to year you're participating in the PARP trial.  UCLA told me it's closed. But I need chemo now so maybe later. Keep me posted and have a good trip!

Okay 'yal, I had a HELLUVA day yesterday. Can you say Stressed? Well I began my day @ 4:30 a.m (couldn't sleep a wink) and left hm @ 6:30 a.m. Arrived in SM at 8:00 a.m. when I get a call from UCLA nurse asst. that my 2nd DR. WOULDN'T SEE because I have HMO. How tacky is that?  I told him "I'm already here! Can I see someone else? This is URGENT!!"  He knew I was pissed so he worked on getting me another Dr. Needless to say I was there 4 hours for a 2nd opinion.  I met w/ a very nice Dr. Olevsky (you know her Deanna?) in her mid 40's. Very sympathetic & told me I was beautiful and I had been through so much. (Yes!) but she couldn't  say much because she didn't have my PATH report. So I explained as much as I could.She also mentioned new chemo that would be good for me- Ixempra.  She requested all my reports so I went back to current onc. office. Well I thought I could obtain TX w/her (UCLA) but gal @ office said NO because I can obtain TX within my group. Sad huh? UCLA is expensive yada, yada.  Anyway I met w/current oncl. who fully explained my PET report. (Now Stage 3 but she did mention she'd work w/UCLA Dr. current onc. just received new Ixempra chemo but hasn't used. What to do...I spoke w/an employee whose wife is Stage 4 and he went through hell but got approval to UCLA. He got lucky w/ a case mgr. who was sympathetic. I could appeal and appeal  & appeal (Process includes 5 appeals!) but honestly I don't want to hold up my TX!  My current Onc. (although I have some ?'s) has this new chemo drug. She calmed me down because by this time I was in tears and a wreck. She said we can fight it but I've got to be strong. She'd recommend me to UCLA or work w/them. I put in a call to my PD for a referral. I just want TX! I really like Dr. Olevsky and I believe she was really taken w/my case. I'm so confused. When I got home I drank a glass of wine and passed out.

But good news. I got my rattlesnakes today! Everyone in the office was on the lookout. They're not too ugly. Already skinned.  Now I need to soak them in salt water w/some lemon to dry out. Let's see..

So that's my update everyone. Keep the prayers moving. 

I sooo envy you Misty on your FL Girls get-away. (You go everywhere!)

I'll keep you posted in my next chapter..

Prayers & Hugs,

Jeannine

dlb823

Jeannine ~ Eye-yi-yi (or however you spell that)!!!  I can't believe what you went through yesterday!  OMG!!!!!  Thank goodness you got in with Dr. Olevsky.  I don't know her, but I've often seen her name.  She may even contribute to the informational section of this website, and I think she did a recent lecture I'd gotten an invitation to attend.  (I'll see if the video from it is on-line yet and PM you a link if it is.)

If you can get a quick referral to UCLA for tx, I'd say, go for it!  If not, then it sounds like your current onc is in the know about the lastest treatment, which is reassuring.  I just think UCLA offers so much in terms of their testing (extremely hi-tech equipment), an incredible team approach to your case, and tons of other support stuff that would be great to have if you can get it without adding considerable stress to your life.   

Call me if you need to talk!  Otherwise, know I am watching here for an update!   (((Hugs)))  Deanna

Misty1

Hey Girls,

Bette, great news on the bone scan!  I was so happy to hear the "negative" news!!  I just saw some news about the PARP drug last month-very promising!

Jeannine, what a day!  I am so proud of you being so proactive with your treatment.  I am just so sorry you had to go through such an ordeal.  The doc that you saw sounds nice.  I have never heard of that chemo drug.  I will do some learning about it.  Let us know how that rattlesnake is.

Deanna, your hair looks fabulous!!  It looks like you ditched the wig!!  Way to go!!

STacy, hope you have great news with your mammo.  

Hi to all and a great weekend to everyone!!

~Misty

Corinne6

I PRAISE THE LORD ALSO FOR YOUR NEGATIVE RESULTS BETTE!!! So happy there is some good news out there for you!!!

Jeannine: You did have a hard day. I hope you make really good progress and conquer this. We travel through some tough roads at time but keep looking for the rainbow after the storm.

I have been having a great time in VT. We went through a corn maize yesterday, Was alot of fun as we decided to break up our family of 4 into groups of 2. We made it a race and yes my team won. Didn't know I was at the exit sign though thought I was back to the entrance. We laughed so hard that I could have used some depends!!!

On the cancer front we are all in MAJOR trouble if the new health care goes through. Try and google a copy on www.thomas.gov. The bill is HR 3200. None of us will get the needed treatments we require and it will be mandatory that we are in the plan. I called my senators yesterday while on vacation. PLEASE if you have time flood yours with phone calls and letters. This is a terrible bill. They will not give us treatments but will assist us with suicide and hospice care!! Please read it thoroughly

I am praying for us all today and hope that you have a wonderful day. I don't think that there will ever be a day that we don't think that we have or had cancer. I am having a problem with my lungs that i need to get checked when I get back. Hoping its just asthma. We'll see.

Love and hugs,

Corinne

TXBadboob

Bette, congratulations on neg results!!!!  Tears came to my eyes, I have to tell you.  Looking forward to hearing about this PARP trial.

Jeaninne, You go girl!!!  Sounds like you dug your heels in and got some response!  I'm so sorry you're having to battle through this.  Why can't they just make it easy for us when we're already going through such hell!  I'm praying for God to guide you through yours to healing.  Please know that you can lean on us here always.

Corinne, my BF has what they call athletic-induced asthma, just got diagnosed after probably having it for years.  Maybe with all of your recent activity, this might be your problem.  Also, are you at a higher elevation than normal?  I'll be praying for you.  Also, I'm glad you're having such a great time.

Hope all of you ladies have a great weekend!

Deen

Hood1980

Bette,  I so happy that you got some good news.  Please check in and let us know how you are doing!

Jeannine, Please do tell us more about the rattlesnake.  I do believe in alternative treatments!

Corrine, I'm with you on this new health bill.  I don't want anyone other than my doctors telling me what treatment I can have and I don't want my drs working for the govt.  They may determine new chemo txs too costly.

Anonymous

Just got back from VA. Desperately tired, but doing laundry anyway.

The PARP trial looks good. We signed the consent papers. Now have to wait to see if I get in. We stayed an extra night because they wanted some tests and were able to schedule them on Friday. Our hotel had a lovely pool and a king size bed, so the afternoons and evenings were like a little vacation.

For anyone who is curious, the drug is BSI-201. It is a Phase III trial comparing it with gemcitabine and carboplatin in triple negative metastatic breast cancer.

If we get in, there will be many more trips to VA. Three hour drive. But this is my life we are talking about, so Tom is willing to do it. What a blessing he is!

Bette 

mommy3abm

HI girls!  YEA, Bette!!!  Praise the Lord!  I am excited about your possible clinical trial.  Where in VA would you be going?

Jeannine,  Oh my goodness!  Kudos to you for not giving up!

Well, as for me, mammo was all clear!!  What a relief!  They told me that for the next 5 years they will read it while I was still in the office and do 2 extra 10x magnification of the lumpectomy site.  That sounds like a great plan to me!

Lots going on here...I go back to work tomorrow and school starts the 24th.  Hubby has 3 interviews next week and a 4th on the 24th.  That one is a final interview and looks VERY promising...although it would take us back to VA!  We would love to be back in our house, but I would be so sad to leave my family again!  But, how fun would it be to get all the VA, MD and PA girls together?

Sending the kids to my parents today to get some much needed house cleaning done.  We already filled a dumpster...seriously...I am not exaggerating!

Have a great Sunday!

Stacy

Anonymous

Stacy, We would be going to Arlington on a regular basis. Two weeks out of three. It is a three hour drive for us, but Tom is willing to do it for me. Best wishes for your DH's interviews!

It is a rainy Sunday here in PA, and we are getting ready to go to church. We are rejoicing because Tom finally got paid for July. The legislature passed some kind of stopgap measure. 

This is the day that the Lord has made. I am happy to be alive, and rejoicing in this day.

Bette 

Misty1

Stacy-great news on the mammo!!!!!!  What a nice relief for you!!!  Can't believe you are headed back to school-my return is 8/25 and the kids start 8/30.  This summer flew by!!  How fun would that be if you wind up back in VA-we'll definitely have to get together.

 Everyone-hope you enjoyed the weekend.  It is getting mighty hot here in MD.

~Misty

Anonymous

Count me in for a reunion if I am traveling to VA every week!

I cannot sleep tonight. This week we will be waiting for the phone to ring about the PARP trial. I don't want to wake up Tom, but I could really use a hug right now.

Bette 

Corinne6

Hi all,  Have been updated everyday on the posts. I came back from vacation on Sat. What a nice time we had in VT. We are going back in Sept. Today was the first day of homeschooling for my kids/ They are in 4th and 6th this year. I am hoping that this coming year will be the best ever.

Bette: I am sending you hugs right now but it is 10 hours since you posted. Hope it's okay anyhow.

Stacey: I am so happy for you on the mammo too!! Yahoo!!!!!!!!!!!!!1

Jeannine, Karen, and Roya, Still keeping us all in prayer!!!

Love to you all. Whew it is HOT today. Heat index up over 100

Anonymous

Got a call from VA today, asking for more medical history. No other news yet.

I ended up going back to bed and hugging a sleeping husband last night.

Corinne, so glad you had a good vacation.

It is hot here today too. I have been staying inside.

 Bette

Hood1980

I'm up for a MD, VA, PA get together!

Anonymous

So am I. And I may be regularly traveling from PA to Arlington, VA if I get into the trial. That is about 45 minutes from you in Waldorf, MD, according to Google Maps

Bette 

Anonymous

Tom served breakfast by candlelight today. Eggs and his specialty fried potatoes. I am so blessed to have a romantic husband who takes such good care of me!

I am feeling well, and waiting for the phone to ring, hoping it will be from VA. 

Bette 

dlb823

Bette ~  I am praying that you will be included in the PARP trial -- which I was very glad to see is a Phase 3 trial.  Did they tell you any of the criteria for being included/excluded, or what they're using to determine if you can participate?

Jeannine ~ Have you found anything out???  Please don't hesitate to call me if I can do anything to help you speed things along --  like make phone calls or help with any research or anything that might help you move things along or ease your mind.  You have my phone number.

Corinne ~  Glad you had such a great time on your vacation.  I lived in the mountains (Vail, Aspen, Steamboat Springs and Park City) for many years, so share your love for the mountains, especially in summer.

Stacy ~ YaY for the clear mammo!  I know it's such an emotional hurdle, and we don't realize it until we get the "all clear" and feel the rush of gratitude and relief.  And keep us posted on your DH's job search.  Sounds like he's got several irons in the fire, which is great, especially in this economy.  

Hi to everyone else!        Deanna

Hood1980

Yes, Bette Fairfax is about 45 minutes away.  That might be a good central meeting place!

mommy3abm

If we go back to VA, our house is in Winchester which is only about 45 min from Fairfax too!  2 more interviews tomorrow...one for CA and one for SE US region.  The VA one is the most intriguing though and has the added benefit of returning to our house!

Bette,  HUGS!!

Jeannine, Any news?

Misty, I am so jealous that you get a few extra days out.  I have been in Gifted and Talented training this week and it is sooooooo boring!  I never knew just sitting still all day could wear you out!

Hugs to everyone! 

Stacy

Anonymous

Thanks for the hugs, Stacy

We are still waiting to hear from BiPar Sciences on the clinical trial. It would be nice to get together somewhere in Northern VA. If we get accepted, we will be traveling there two weeks out of three.

Bette 

Corinne6

Went for a 6AM walk this morning. I met a black bear weighing approximately 300-400 lbs. I guess God does not want me yet!!! I got a ride to the next house and kept walking. Do you know there was only one car that went by on my whole 2.2 mile walk??? I love mornings!! I love the country setting that I live in. THANK YOU MEGA, LORD!!!!!!!!!!!!!!!!!!!

Anonymous

Black bear! Oh my! I would have been scared, but I guss tha a county gal like you can take it in stride.

I still have to start walking. I m so tired all the time, but one of these days I just have to put on my walking shoes and DO IT.

Bette 

Anonymous

Corinne, Good news! I just walked .5 miles on the treadmill!

Bette 

Roya

Corinne, I am going to pm you.  I am an expat and will be returning to the US eventually.  I am concerned.

Obama stated in one of the recent messages that Americans will be able to keep their current policies if they choose to do so.  In reading the link from your comment I see it written  as a safety net for those who may fall through the cracks, have no insurance, lose their jobs and therefore their insurance, etc.  I had no idea that this bill has evolved into something that we all will have to participate in whether we want to or not.

If you are correct, and we are going to be forced to  use the new plan,  then this is a major cause for concern.  I just want to be absolutley certain that we are being forced into it and that there will be no choices. I just couldn't find it to read ...where it says we will be mandated to join in...........and need for you to write me where in the bill to look.  

If this is true, then the US  will become the only country with universal coverage that mandates that everyone joins in and eleminates private hospitals and resources.  Even here in France 56% of doctors practice with private patients.  I notice that a lot of peoople use Canada  A lot of people hold up Canada and use it as an example but even Canada still has private insurance for those who choose to use it and all Canadians are not on their public plan. 

I was actually ok with this bill untill you wrote that we will be forced into using it. If this is correct and if we will have no choices then I will make phone calls .....even from here in France.  I just want to be sure that we will have no choice in the matter.   I am so surprised.  Please let me know where to find the 'mandated no choice to join' part of it.  That is the part I am most worried about.

dlb823

OMG, Corinne, I can't believe you ran into a bear -- and such a huge one at that!  Was he/she on the road?  Have you seen those before in your area?  Thank God someone came along to get you out of there!

And cute new avatar!  Our hair-do's are so similar.  Have you had yours trimmed at all yet?  I'm thinking of doing that next week (first one), but I've noticed that some of my hair (on the sides, especially) seems to be straightening out, while the back still has tight, spring-y curls.  So I have no idea what to do with it.

Bette ~  If you need encouragement to get those walking shoes on each morning, check out the "Motivation" thread.  That's what got me up and off my rear end and out walking each morning.  It's a group of very nice bc-sisters who motivate each other to exercise, because we know how much it improves our prognosis.  Think about joining us if you want some new friends who will definitely encourage you to get out there.     Deanna

Corinne6

Roya, I PM'd you. Please scroll down to see the legislation being proposed. The full bill is 1081 pages long. You can read it at Thomas.gov if you are interested. I am actually going to a Tea Party Protest on Sept. 11th in Hartford.

Deanna: I actually had it trimmed once and dyed it twice. I still wear my wig to most places.

Went to my naturopathic Dr yesterday. She insists that a wheat free diet is GREAT. Ugh!!! I found an article on a wheat and cancer connection that was interesting. Do you think organic and glutten free is the newest craze??? I am doing well on it and feel energetic but I miss my breads and pasta's.  I am also on stevia which eliminates all my sugars.

dlb823

Corinne ~  About a wheat-free diet... I've noticed that both of our local health food supermarkets now have huge sections of gluten-free foods.  I'd also be interested to know if there is a suspected link to bc, as I'd always been very sensitive to wheat products, and ended up with IBS attacks if I ate too many wheat products in any given period.  Now, post-bc, I don't eat much wheat, but never have those attacks anymore either.  I hadn't heard of a connection, but will research it now that you've mentioned it.

I also wanted to recommend to you a fabulous gluten-free pasta I recently discovered, but I don't have a box of it on-hand, and can't recall the brand (chemo brain!).   I'll pick some up soon and tell you what it is.  It's the best non-gluten one I've ever tried.     Deanna

Roya

Corinne & Bette, thanks to you I will be getting off my duff and putting on my walking shoes a bit more often. 

Thanks for the inspiration!..............well, with the exception of the bear............OMG!!!!

Roya

OK, I went back and read what you sent me.  This is a huge bill.  This bill will not affect those who have insurance.  We won't have to be a part of it if we do not want to be.  Read #8 where it says that they will work along side private plans not against them.

It is leaving the good aspects of our system and not eliminating private insurance at all.  This will pick up those who are not covered, have been dropped or denied by private pland etc. 

On pages 4 & 5 of HR 3200 It states:------------------------------------------------------------------------------------------------------------------ I copied and pasted it here:

(HR 3200 IH)

1 works in today's health care system, while repairing

2 the aspects that are broken.

3 (3) INSURANCE REFORMS.-This division-

4 (A) enacts strong insurance market re5

forms;

6 (B) creates a new Health Insurance Ex7

change, with a public health insurance option

8 alongside private plans;

9 (C) includes sliding scale affordability

------------------------------------------------------------

So we will not be denied anything.  Do not worry.  Those who would not have had anything to begin with will now at least have a chance whereas before, they would not have had anything at all. 

Dx 5/2008, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER-/PR-, HER2-