Sept 2012 chemo

Timbek, I see our path is pretty similar except I have 6/8, though we think it would have been more had it been a full axillary dissection not SNB. MX and full dissection yet to come!

Just back from a great sunny walk and feeling good! 

Jojo! So happy for you!

Congrats Jojo!!!

Jo, yes!!!!

Damiana, let that bug go fast.

Damiana, feel your pain. #3 has been a bear for me, and my little one has a stomach bug too. Feel better soon!

For the canker sores on your lips, try some Carmex that is in the little white pot with the yellow lid.  You can find it at Walgreens, CVS, Target, etc and costs about $2.00.  When I had mouth sores, I sometimes just rinsed with salt water which seemed to help.  Hope you feel better!!!!!

I guess I’ve been saving up.  This will be a long one, covering a few recent post topics. 

Taxol:  Weekly Taxol #10 done today, 2 more left.  No side effects, until this last week - numbness in fingers and toes developed, and that’s fairly common and a mostly reversible side effect for this drug.  This neuropathy developed in spite of glutamine and b6 supplementing. Maybe it would have been worse had I not supplemented?  Hard to know.  I'm also noticing forgetfulness.  Does anyone remember the movie Joe Versus the Volcano?  I feel like I have a Brain Cloud. I share all of this in hopes my experience so far might be helpful to those of you entering into the world of weekly Taxol.

Study participation:  A while back someone asked about who's participating in a research study.  I'm in the I-Spy 2 clinical trial so in addition to receiving the standard of care based on my diagnosis (Taxol followed by AC), I also get a weekly drug through IV drip.  It's an angiopoietin that helps prevent the development of the blood vessels that feed the tumor (or at least that's my very basic understanding).  This trial examines whether the addition of phase II test drugs on top of standard chemo increases the odds of a pathologic complete response when compared to the standard chemotherapy regimen for each biomarker signature established at trial entry.  What's really interesting about that is that the trial is targeting research drugs to those tumors most likely to respond, which is, as I understand it, not how clinical drug trials are currently conducted.  Not only are they trying to find ways to target drugs, but they're also trying to prove the study protocol can bring these drugs to market much faster, and at a lower cost.  (Here's a recent article that touches on this clinical trial.)  

My participation has turned into a pretty big time investment for me (every Friday I spend about 5-6 hours to meet with a doc and then go thru infusion which always takes longer than it should in large part because a special pharmacy has to mix up the test drug by hand only after my labs are done).  I also had to commit to extra breast biopsies and MRIs, but overall I still am glad I'm doing it.  I'm also followed much closer as a result of participating in the trial, so I like knowing I'll be getting extra monitoring for a good long while.

Like others have said (can't remember who- Brain Cloud) I decided to try and make some lemonade out of these lemons - hoping breast cancer research benefits from my participation.  And of course I'd like to think that I'll see better results.  After 3 treatments I saw a 30% reduction in tumor size, and after 5 docs are no longer able to find the tumors through clinical breast exam.  I'm rooting for 100% resolution at the conclusion of the 12 weeks, but even if that occurs it sounds like I'm still stuck with the dreaded AC, and a mastectomy, and knowing my treatment protocol likely won't change no matter how great the results from chemo sure takes away from feeling ecstatic that the chemo is kicking a$$.

Chemobrain - I too have begun to feel like I've got giant cobwebs in my head.  Feels like I start every sentence with "Did I already ask you..." or "Did I already tell you..." So I'll be very interested to hear more about the study Mariposa's participating in.  And if I were feeling less thick-headed I'd have been able to call out a more of you by name in response to your recent posts, but I'd have to go back and re-read to remember.  Groan.

Diet/Nutrition/Lifestyle - A belated thanks to all who shared your thinking on diet and cancer prevention.  Like many of you I've been a pretty healthy eater, and light drinker.  I don't eat much meat, and I love fruits and veggies.  That said, I think I probably undo all the brownie points I get from fruits and veggies with my sugar cravings.  I can eat sugar in amazing quantities – once I start it’s hard to stop.  That's one thing I'm really trying to get a hold of in an attempt to improve my health.  I've also traded in coffee for green tea (MO approved). And I'm doing my best to exercise every day (I have a very sedentary job).  Right now I'm most interested in learning more about populations of women who have significantly lower breast cancer incidents so my next book will be the China Study.

Foreverchanged - Whew, what a huge relief!!! 

JoJo – Congrats on shrinkage!

Butterfly – Congrats on last AC!

Suzilla – That’s a ferociously good handle you’ve got.  Love it.  If I were your tumor I’d be scared.  

Hi all!

Forever:  What wonderful news!!!  I know you must be so super relieved!

JoJo:  Awesome about the shrinkage!!! So glad the taxol is doing its job!  So, will your surgery still be after treatment?  I like the idea that I will have someone doing surgery around the same time as me.  (I think mine will be in January). 

Marian:  I love Leonard Cohen!  Suzanne was one of my favorite songs when I was young.   I hope you have a wonderful time at the concert:-)  I agree with Timbek2!  I miss my normal life of doing fun things and not feeling like such a hermit.  Cancer is so isolating.  Either I don't feel well, or my energy is limited, or I am worried about my blood counts.  I think it is great that you are getting to do something fun.

Damiana & AIC :  I hope you are feeling better Damiana- and I hope neither of you get the bug!  I heard a woman talking at my last infusion about how she has her little kids take a bath as soon as they are home from school each day.  Sounds like maybe something I should try!  I wash my kids hands constantly, but really what can we do?  As for taxotere,  every taxotere treatment seems to be getting worse for me.  The nausea lasts longer and the exhaustion gets worse.  It makes me more anxious each time.  I am definitely feeling like it is cumulative.  Which completely sucks.

Neta69:  The decisions about surgery are so hard!  My doctor wants me to do a single mastectomy, but I am pretty much planning on a double after chemo.  The body image stuff is definitely hard, but I am hoping for good results with my reconstruction:-)  The loss of feeling bums me out the most.

Okay- I have the worse head ache in the world tonight, my house is a mess, and I haven't even thought about dinner.  I have zero motivation to do anything.  If it was just me, I would go to bed... but gotta get up and figure it out.  I did see a great documentary on HBO yesterday- called the education of Dee Dee Ricks.  She is a wealthy socialite who finds out she has breast cancer, and then begins fighting to help women without insurance.  My husband didn't understand why I would watch a movie about breast cancer, but sometimes it just feels good to see my experience outside of me.  Does that make sense?

Have a nice night everyone!

Cherioo- your plans sound wonderful.  I think that is one thing I miss so much since cancer.  The freedom to choose.  All decisions now must be based around cancer - as Mariposa said it isolates us so much for the rest of the world.

Yes Mariposa - I will have my surgery in January.  Seeing my surgeon/plastic surgeon/ and radiologist oncologist in December to get everything set up.

Question regarding your tumors for those who haven't had surgery:  My MO noted yesterday my tumor has also "softened". Prior to Taxol, the AC shrunk it, but it remained as a hard firm mass.  The Taxol also started to shrink it again, but the MO was also please it softened.  Did anyone else also note this in their treatment?

I will be taking my steriod and claritan for 5 days this time post treatment so praying for less pain.

Cheers to a great weekend for all!

Whenlifegivesyoulemons, Thank you for participating in a trial. Thanks to all of you who are doing so. I was approached for some other trials - a couple vaccines - and I declined since I already have autoimmune disease and I didn't want to put my system through more hoops. So I greatly appreciate those of you willing to take the extra time and effort to participate.  You and I are on a similar schedule, I have 2 Taxol's left. I have some numbness in my fingers and toes as I'm typing this but like you, it hadn't really showed up until recently. I expect it may even ease up a bit before my next treatment.  I have not been doing glutamine or B6 supplementation but I have been able to eat fairly well on Taxol.

Jojo - WOOHOO!! Congrats! You and Taxol are kicking C's @$$!

Forever - Phwew! and Yay! I'm sure we *all* breathed a sigh of relief with you.

Marian - cool so i am building my dream team? Yes our DX's are very similar. Is yours IIIA due to nodes? I have 3 to 5 based upon MRI, but have had none removed for testing yet. I had a pet scan too which confirmed.

Mariposa, I watched that movie too. I thought it was really interesting...and wound up being a pretty searing indictment of our health care system without really meaning to be. I appreciated Dee Dee (though at times she seemed like a little much!) and the access she granted to the viewer. The toughest part for me to watch was when she takes off her bandages for the first time. The look on her face felt very familiar.

Has anyone watched Pink Ribbon, Inc? I have that one on my netflix queue.

Finally figured out how to put my blog in the signature...

Hope everyone is doing well.

Did anyone get specific advice about exercise while on chemo? I had been walking and that was ok'd by my MO but now that the snow has come, and I'm outside of town, I'm not sure what I'll do. I did my super-old Dance Dance game yesterday and today but keep it low key to not get my heart rate up to high. anyone have specific heart rate recommends?

Watched the documentary Mariposa recommended on Dee Dee Ricks. Agree with Toastie too, she was a little much sometimes. However, admired the full access she gave to her life. I may have to copy her idea for having champagne for my last chemo though. Wondered what chemo she had and why no port?

joj meant to say that yes, IIIa is due to the 6/8 nodes. SNB is normally max of 4 but my BS saw right away in the axilla there were some "pearly" nodes so took 5 plus 3 sentinel nodes (2 of them were positive). Glad she did the lumpectomy and SNB and saw what she did even though mx later.