Starting Chemo March 2015

SC_Coqui

In the chair for Taxol and just found out Herceptin as well. My MO stopped by and said that my other tests came back equivocal as well. We'd rather be aggressive in my treatment than take that chance. Just monitor my heart from here on out very closely. We're waiting on my labs. It's going to be a long afternoon. Probably around 4 hrs counting wait time for labs and pre-meds.

SueH58

BB, oh, I see you're getting chemo for your HER2. Sorry.

eheinrich

Hang in there BB. The waiting must be so hard.

Katy I'm only doing 4 rounds of CT. I saw 3 MOs before settling on the one I have: 2 said 4 rounds 1 said 6.

My bike's front tire flatted on my ride the other day. While I know I just need to toss the bikes in my car & take them for tune ups it seems overwhelming. The smallest tasks sometimes just seem undoable. blech

BBwithBC45

Thank you, Sue. The reason they're giving me chemo is because I'm Her2+++. Also, even though my "tumors" were smaller than 1cm, I had four of them, the largest being 5mm. IDC was multifocal, and DCIS was extensive. Also, there was lymphovascular invasion present.

so-she-did

BB - I'm so sorry you find yourself in this position. I'm glad you are giving yourself a break from work and taking that Xanax. I went through something similar with my oncotype testing (10 day delay!) and there is nothing more frustrating. See if you can sic your MO or nurse on the insurance company. Let them handle it and you relax.

SC - hope all goes well today at the spa. Hopefully time will seem to go by quickly and you are home before you know it.

Italychick

BB, hugs going out to you. I had an enlarged lymph node in my neck, but it was related to a cold I had and it finally went away. Sending out positive thoughts to you that everything is okay

Italychick

SC, I'm in the same boat you are with the her receptors, and I am doing the Herceptin, monitoring my heart function. My first heart test will probably be the end of next week. I haven't really noticed anything related to the Herceptin, other than if I hang my head down, it is like I turned on a faucet. Hoping everything goes okay for you. I think they give you a larger dose of the Herceptin the first time, so don't be shy about asking them to drip it for 60 minutes vs. 30 if you want.

My MO wants me to do six rounds (even thought I would rather have four), and I am going to try and stick it out. Kicking and screaming the whole way.

Did a spin class yesterday, I think I am recovering from that flu thing. Everybody around me has gotten it, puking and diarrhea for 24-48 hours. Including my daughter and grandson - eek! My daughter came down with it on a day she was here. Trying for a real bike ride tomorrow - fingers crossed! I'm trying not to panic because even on a bad day I walk 3-4 miles. But the bike saves me, it is my touchstone with normal life.

BBwithBC45

"All" it took was 7 or 8 phone calls, but I am approved for tomorrow's test now.

Thank you for being there, Ladies. My husband won't be home till this afternoon and he has no idea what has been going on with me today. Your hand-holding helped me tremendously. Nobody understands like you do.

SC_Coqui

I'm in for 90 minutes of herceptin today. The benadryl has kicked in hard. Zzzzzzzzzzzzz...

eheinrich

Yay BB! What a relief that must be for you. Glad we could hold your hands while you waited

Sending good thoughts your way SC.

After 2 years of unemployment I have a solid lead on a job that I can actually do from home. It's in reviewing patent work in life sciences prior to litigation. My husband was talking to a guy at a company his firm works with over lunch and mentioned that I have a PhD in science. Today he contacted Alan to see if I am interested in sending in my CV for consideration as they are hiring. Yes and done! It's a contract position but it would go a long way in closing my resume gap and working from home would be good since after chemo I am facing more crap w/ reconstruction. Please cross your collective fingers for me.

ok - time to accomplish something else prior to nap time.

~e

Jackbirdie

Joanna- smooth sailing in the chair today.

BB- good for you! So glad you don't have to wait so long.

Eileen- this is VERY exciting news. I think it would do wonders for you to have another focus but be able to do it from home. BTW I'm fighting off the temptation to call you Dr. E

Carrie37

BB, I'm glad you got that figured out. What a pain in the a**!! Katy, I hope the docs can help you feel better, you have been struggling for days. No fair! SC, my longest day in the chair was six hours the first time I had Herceptin and Perjeta. Yuck. Hang in there!

I had a strange experience today. First, let me say that I really don't like Benedryl. I don't like how it make me feel loopy. Today during pre meds and right after they gave me the Benedryl I started feeling nauseous, weak, dizzy and just plain weird. My mom said my face got blotchy red. Anyway, that really got just about every nurses attention! One taking my vitals, one getting me puke bucket, one asking me questions and getting the doctor. Anyway, it passed and my MO came in to talk to me. Turns out she thinks it was the Benedryl and they won't be giving it to me anymore. Not cool at all. I think it bordered on a anxiety attack because I started crying. I didn't think I was going to die or anything. I just kept thinking how much this all sucks and I don't want to do it anymore. I don't want to feel that way ever again.

I really hope Allison is doing okay. Hugs to all and especially those in the chair today.

SizzleStitch

jackiebirdie,

I read you are having problems after your 3rd treatment. I developed an allergic reaction to the Taxetere after my third treatment that mimicked pneumonia. They called it pneumonitis. I had to have a CT for them to see it. I had already seen my MO once and had been put on Levaquin but wasn't getting better. My temperature kept going up and down. I finally called again and just plain said something is still wrong. I was supposed to have my last of 4 treatments Tuesday but couldn't. They put me on 9 days of prednazone (3 twice a day for 3 days, 2 twice a day for 3 days and then 1 twice a day for 3 days to recover. I felt better almost immediately after my first dose. Could this possibly be what is happening with you? I have to have CMF for last treatment now...not scheduled yet as I have to see the doctor on Tuesday. I am feeling really good, well considering, and only have today and tomorrow to take the last of the prednisone.

Please take care everyone. I am so sorry I just can't keep up with everyone as well as most of you can. :-(

SpecialK

sueh - neoadjuvent chemo is done for a few reasons - to shrink the tumor for surgical reasons as you mentioned in your post,  also for those who are Her2+ and need Perjeta (tumor 2cm or larger, or node positive) because Perjeta is only FDA approved for neoadjuvent use in early stage breast cancer.  It is also done for those who are triple negative because they don't have any adjuvant hormonal therapy available and the doc needs to be sure that chemo is working - only way to tell is to measure shrinkage by administering chemo first.  Doing this also provides info on the chemo regimen being used - if it is not working they can switch up the drugs.

There was mention a ways back regarding Oncotype Dx only being available for node negative patients.  More recently it is also being used for those with 1-3 positive nodes.  Since the test was originally designed for node negative, ER+, Her2- patients, there is less data available for node positives, but it is now being used that way by some oncologists.  Just didn't want anyone who is node positive and had Oncotype done to worry whether it was appropriate.

I think someone also asked why Amy Robach didn't lose her hair - the reason was she was given CMF which has much less hair loss as an SE.  She was treated in New York City, was possibly TN for which CMF is a time tested chemo regimen, and particularly favored by the hospital she used - can't remember if it was MSK or another one. 

Sorry to hear that a few of you are having a rough week - hang in there - it may not seem like it will get better, but it will. 

 

Jackbirdie

Special- so sorry to hear of your unfortunate incident. Boooo. It's hard for me to imagine you having a cry. I guess we are all so human.

Sizzle - I just had my 4th last Thursday. I have had swollen glands each time. This time it just got a lot worse and went further. I was hospitalized for a week last year with a rare pneumanitas. I think anything is possible and I'll mention it. Thank you. My history however is being quite prone to all upper respiratory infections. All my life. My best guess is I'm always "on the verge" with chemo and as I go deeper into treatment, my immune system is less able to fight for me. I was on home oxygen for months, steroids, lots of antibiotics including Levaquin

I'm so sorry you had to go through this. Thanks for making me aware.

SpecialK

jackbirdie -  Are you confusing me with someone else?

Italychick

Eileen, I have worked in the patent field for 28 years, and my husband recently did some patent litigation consulting for approximately two years. If you need any input/feedback, please feel free to pm me. Fingers crossed it works out for you!

Jackbirdie

Special- haha! Nope!

SpecialK

jackbirdie - I'm confused then - haven't had an unfortunate incident or cried, so not sure of the reference.

Jackbirdie

I'm sitting here in the chair. Just got blood pulled. They are going to do a throat culture. Said probably a zpac in my future.

Italychick

SpecialK, I am confused about Perjeta. I think wpmoon is on it, and she didn't have a 2 cm. tumor , based on her signature line. Is it possible the protocol has changed?

Jackbirdie

darling nurse said he didn't need the the scope to hear. This sux. (And loudly)

SC_Coqui

With the added Herceptin and the late start I'm still in the chair today. Boo! It's 5 pm eastern time and I got here at 11:45. There's no one here except me and I have another 1/2 hr to go and then the flush.

It's funny because when I arrived it was so loud in here and almost all the chairs were taken. I just want to be home right now!

eheinrich

SpecialK - I think she meant Carrie

SpecialK

eheinrich - oh good, thanks!  Important that the sentiments go to the right person!

Italy - some oncs have had success getting insurance to pay for Perjeta even when the usage does not strictly meet the criteria the FDA has set.  Kind of like off-label usage.  Some early stagers have also been able to have Perjeta adjuvently - it becomes what can oncs convince insurance to pay for, and some will do a peer-to-peer to get it.  Additionally - not speaking for wpmoon - the way this site is set up when you put in your stats, the measurement says 1-1.9cm but rounds down, so even if it is listed as 1cm, she could have had a 1.9cm mass and Perjeta would be appropriate.

shaz101

Thinking of you SC and Katy. Hope all goes well this round.

Nice photo Katy. I can relate!!!!

Eileen that's fantastic news. My fingers and toes are crossed for you.

Italychick

SpecialK, good to know. I just wondered why I wasn't getting Perjeta, but since my lump was 1.3 cm, that makes sense.

eheinrich

Thanks Theresa. I will definitely keep that in mind. My husband is a patent/intellectual property litigator, so yay, I have many resources.

Jackbirdie

Sorry Special-

I did mean Carrie.

Sorry Carrie.

I am thoroughly confused.

Back at home after cultures and X-rays. They tried yo give me Levaquin.. Refused.. Getting a zpac. Called the pharmacy. Over an hour wait to put a pre-packaged drug in a bag.

Oh what a foul mood! I just want to start breathing

Edit- ever hear the expression often wrong but never in doubt

SpecialK

jackbirdie - I will never understand why it takes so long at the pharmacy when the thing they are giving you is self-contained.  Print a label and slap it on and let me go!  Hope you are feeling better soon!  You're not confused - you just have a lot going on and depleted reserves, right?

Italy - I think also the equivocal nature of your Her2 status would preclude Perjeta possibly even if your tumor was greater than 2cm.  Using Herceptin for equivocals is a relatively new concept, just within the last couple of years - and the data is not solid regarding benefit yet - it is kind of a "better safe than sorry" approach at this point with some docs doing it and some not.  Perjeta is for Her2+++ peeps, and comes with its own nasty set of GI issues, as some of the ladies on this thread can attest.