Sept 2012 chemo

whenlifegivesyoulemons

Patin, Jojo, Toastiecat and everyone else wrapping up - CONGRATULATIONS!  Only those who've been through it can really understand how hard chemo can be.

Marian - good luck with your counts, hope you're able to go ahead with treatment.

whenlifegivesyoulemons

Two questions:

• I was told today that my counts are so low that I am neutropenic.  And that's after only 1 of 4 AC treatments.  My temp was just below the threshold to require admittance so they sent me home wiht antibiotics, but am now told I'll be on antibiotics to get me through the nadir phase of each treatment.  Has anyone else had this happen?
• How to get rid of that taste?! I remember several of you had suggestions about that, but I don't have the energy to sift thru all our posts. Please remind me. 

Melrosemelrose

DOING THE HAPPY DANCE FOR ALL OF YOU WHO FINISH CHEMO TODAY!!!!!  HOPE YOU GOT THE CHANCE TO RING THAT BELL LOUD AND CLEAR TO LET THE WORLD KNOW THAT YOU HAVE FINISHED CHEMO!!!  WELCOME TO THE PFC CLUB, MY SISTERS!!!!

Thinking of all of you today and hope each of you are doing well.  I know it's hard at times to keep moving forward but each of you have the "it" factor inside of you that will carry you on.  Sending lots of HUGS and positive healing and calming thoughts and energy.  Have a good restful weekend!!!!!

Melrosemelrose

whenlifegivesyoulemons-  Your onco may have opted to give you antibotics after each round rather than have you get a Neulasta shot or Neupogan shots (WBC bone booster shots) to help keep your WBC counts up.  It is a much cheaper and easier route to go.  I did get one round of antibotics after I had a high spikey fever/chills episode after my second round of chemo.  I received a Neulasta shot after each round of chemo after that. 

As for yuck taste in your mouth, sucking on peppermints/lemon candies will help.  Rinse your mouth out with baking soda + salt + warm water may also help.  Brush your teeth after eating.  Use plastic utensils when eating so you can avoid that metallic taste in your mouth.   If plain water tastes blah.... try lemon or orange slices in the water.  I'm sure there are other things you can do but I just can't think of them right now.  I'm sure someone will chime in soon with other suggestions!!!

Hope this helps and you feel better soon!!!!!

jojo2373

Thanks to all for the well wishes, the Yew Tree bark is flowing and I will update later when the bell has been rung. Geez that IV benadryl makes me loopy! Counts were lowest ever, but still passed.

PatinMN

Taxol and Herceptin are finished and I have 2-1/2 more hours of cold caps. My helpers want to check out how the cold caps feel, so we'll do that before we leave. I hear that we will get serenaded by the nurses, too!

Timbek2

Go JO JO!  That benadryl kicks my bootie every time.  Wish I didn't have to have it!  So proud of everyone for pushing through!  I found this great video on FB that I think we will all enjoy rocking out too.  I think she has lymphoma?  Very inspirational I think.  I hope I can get the link to post here.

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We will see if that works?  Love to you all!  Proud of all of us!  We are so much bigger and stronger than this!  Fighters 100%

I don't think it worked.  If you go to facebook look for Megan Kowalewski and the video STRONGER.  It's worth checking out!

Becki

Mariposa123

Congrats Jojo!!!!

Congrats to patin & Toastiecat too!  I imagine you are also about finished up:-)  I can't wait to be where you all are.... just four weeks away.

And Thanks Timbek for the video!  That was so awesome!  the facebook link didn't work - but if you do a search on youtube for Megan Kowalewski stronger - you can find it:-)  I was crying and smiling all at the same time.  I don't know why BC.org doesn't make it easier to post links.  I hand typed the link below - cause it was super worth watching!

http://youtu.be/BaQdwTsVtCY

Whenlife:  I have a lung disorder that makes my doctors pretty scared about my getting sick during chemo- so I have always done both Neulasta and I get a prophylactic antibiotic every cycle- I usually start it about seven days after chemo.  I just make sure that I take plenty of probiotics.  and I  could also use help with the yucky taste.  Last time it seemed to last forever! 

Chemobrain has been very frustrating.  I walk into lots of rooms and have no idea why I am there.  I went to a store yesterday and they needed my phone number to get my membership number and I had no idea what it was.  I started tearing up.  It felt so weird.  Anyone else noticing these types of things?  I hate it.

Next chemo will hopefully be better.  My doctor is giving me less since my neuropathy was so bad this last time (for part of the cycle I was having a hard time walking) a little worried about how it will impact my overall treatment, but he said it wouldn't make a difference (which has me wondering why are you giving me so much if it doesn't make a difference???)

Hope everyone is doing well!

Cherioo

Yeah jojo, I bet you are the happiest person today. I met with my RO today and we have planned out my radiation. I go for 28 days starting Jan 4th . In speaking with my RO she told me that the best thing to get while taking radiation is pure vitamin E oil so I will be starting to take that now to smooth the skin. Two more chemo thank god

Neta69

Congratulation to all of you finishing chemo today! You did it! Yay!

jojo2373

Mariposa, that video is great and I hope you will take the family to Disneyland(where everything is magic)!



Yes, I am so happy, but when I rang the bell the emotion got me and I cried. Part 1 of the journey complete. Will try to post pic tomorrow.



Cherioo, I to met with my RO and learned alot. I will do 4 to 6 weeks of 5 times a week. After discussing the internal rad options, I felt radiating the whole area sounded better. I will start 4 weeks after surgery if the healing is good. I cannot finalize though until after surgery when the complete path report is back. They said they want to know about all involved nodes, type of cancer ( which many times is diff than core biopsy report), and how close the tumor was to chest wall. He did say if i keep my cancerous breast, it will be smaller after rads - nothing is perfect with cancer.

allurbaddayswillend

twinsplus, did you ever find info about AI's vs. tamoxifen? There's good info, I thought, on the breastcancer.org pages. hmmm, the first link looks pretty short but there are more:

http://www.breastcancer.org/symptoms/diagnosis/hormone_status/treatment_hrpos

http://www.breastcancer.org/search?utf8=✓&amp;term=aromatase+inhibitor&amp;commit=Search

My MO originally was recommending I get the oopherectomy and go on an AI sooner rather than later. He has slowed down his opinion on that but only because he wants my heart checked out more thoroughly since I did AC. I, on the otherhand, come from a line of women who think having 1 or 0 ovaries was great from their late 40's on so I am not nervous about that at all. I know it's not true for everyone but my mother thought having no ovaries was great and my oldest sister (now nearly 60) had one removed in her late 40s and is fine with it. But we all had bad PMS and I had bad cramps and etc.

Cherioo

Jojo just to ease your mind, when I had my double mastectomy which was what I chose , I had no pain at all. The expanders feel a little weird but I know they are temporary. What ever decision you make please know that the surgery is a quick recovery. I like you am so glad that my RO wants to do what is best for me and hit my neck, chest wall and u der my arm where they took out the nodes to be sure they she gets everything .

Toastiecat

Last taxol today Felt very good. Unplanned swap of my left expander happening in the next week or so, then radiation for 6 weeks starting Jan 2. But I'm going to stick around here!

I want to say a big THANK YOU to all you beautiful people. This is truly been a safe, supportive place to come. You are some of the smartest, funniest, toughest women I've ever known. This is a pretty bad ass group, and I've been proud to be a part of it. Hugs to everyone.

Mariposa, yes, the chemo brain is terrible! I tried to read long-osh article this week, and couldn't follow it at all. I kept confusing the names! Sometimes when I'm on the subway I forget where I'm going, or if I've already changed trains. Also today at chemo I'm pretty sure I forgot to flush when I left the bathroom! LOL, yikes. I ordered this book from Amazon about chemo brain: http://www.amazon.com/gp/product/0738212598/ref=oh_details_o02_s00_i01

The cruel irony is that it's a BOOK and I haven't been able to read a book in months! We'll see. In the mean time, my hospital is doing a presentation on chemo brain sometime in the next couple of weeks which I hope to attend. I'll report back if I do...

xoxo

Hopex3

Congratulations to everyone on being done this week. I am so ready to be done. Not having a good day. My toes and fingers are so numb. My tumor has been pulsating all day! Feel like crap. All my friends went out for happy hour but im just not in the mood to be happy and smiley. Sometimes I feel as if I'm losing touch with my friends during all this! Cried all the way home from work and then crawled in bed. Hoping to get all my Xmas shopping done this weekend as I know having chemo next week, I will not be feeling well all weekend. Sorry to be such a downer! I will pull myself up tomorrow and it will be a better day!

Amy4978

So happy for all of you beautiful ladies who have completed and can close this chapter! You did it... You are strong! Much love to all of you. This is one bad ass group and will continue to be one! We got this no doubt. On to the next step for you with much support behind you!

jojo2373

Congrats Toastie!  Agree on the bass ass group - yes we are!

Been up since 4:30 on a steroid buzz, maybe a nap this afternoon.

Cindy - the idea was beautiful, someone just beat us to it.  Was thinking during my early morning steroid rush - would anyone be interested in doing an informal doc of all of us with pics of choice (bald or not) with names, personal email, location, info, etc?  Something we could have for ourselves?  I want to remain strong about our survivor reunion and with chemo brain for us all, the doc would be a great place for reference and to remember.  The ultimate goal would be to maintain it ongoing and add our group pics from the reunion.  Just an idea so if anyone wants to put this together I would help, but am not the creative one in the group.

Happy days and no SE's to all.

bearcub

Congrats To you All of you that are done chemo....wow a long haul but you did it!!!

Neta69

Hopex3, we all have crap days, I'm sorry you feel bad. For me the trick is to remind myself that the feeling will pass, breathe, and take a moment at a time. You will get through this, it will end and we are all here for you.

Neta69

Bearcub, happy to hear you only need 16 rads! You should sail through. I'm getting really sore now but I only have one week left and have done 24 so far. Next week is boost and then Im done! My MO wanted me to wait a week after rads to start Tamoxifen. Wonder why some start it before rads and some want to wait? Enjoy your break from treatment!

Cindi74

One Taxol and a lot of tingling in from feet to hips and in arms.  No nausea, but crappy feeling.  Dreading 11 more.  Chemo brain definitely, and disequilibrium.  Friends who have been through it assure me this will pass. 

Read a suggestion that has helped me.  When going to do something (get jeans in laundry), say it out loud.  Another pathway to the brain helps.  I read somewhere that when one changes locations, it's like refreshing the computere--but it wipes out the current thread.  So reminding yourself out loud will help you remember what you were intending to do.  It is helping me.

My chemo nurse insists this 12 weeks will fly by.  (I was very cranky because I had to wait more than an hour and 15 minutes past my scheduled appointment.)  Our time means nothing to them.

For you all who are struggling with jobs and kids, you have my intense admiration.  Hugs and no SE

PatinMN

Cindi, I sure hope the taxol gets better for you. Maybe the AC hasn't completely left your system and combined with the fresh taxol the effect is worse.



Something funny today--I really didn't think I had chemo brain, but in today's mail I got back a check I had sent to a charity last month. They couldn't cash it because the date was screwy. I had written the date as 11/12/17. :-). They should have just made that 17 into a 12.



This afternoon I took 10 friends who helped me get through this (so far) to lunch. They variously sat with me on surgery day, went to appointments with me, brought me food, helped with cold caps, provided little encouragements along the way. We had a great time, and lots of laughs. Now--on to radiation in January.

Cherioo

Congratulations to all of you beautiful women who have completed chemo. Yesterday when I met with my RO we went over my treatment plan and I will go through 28 days of radiation. She stated because of the size of the tumor that I had and what my margins were they will radiate from the chest to my underarm and up near my clavicle. neta69 does it hurt at all? Are you more tired now then when you were on chemo?



I have two more Taxol the. I start on the 4th radiation. I have noticed this last chemo I had my fingers hurt and toes are a little numb . I hope that goes away. What is good to take again for this? I also find myself when speaking or writing having major chemo brain. It drives me crazy . I was having trouble helping my eleven year old with math , totally forgot how to do it .



Well other then that I feel so happy that we are all almost done . Hope you all have a great weekend.

Hopex3

Cherio: I have been taking l Glutemine for the numbness but I don't think it is working.

It is so annoying! I also have bad chemo brain for about five days after treatment. I wouldn't know how to do the 11 year olds math even if I was well. Lol. I work in a middle school office and the kids will ask me for help and I have to send them elsewhere.



Speaking of chemo brain. You know how you have automatic locks on your keychain for your car. Well, it doesn't work for your front door.

PatinMN

Cherioo, I'm taking L-glutamine and vitamin B6 for the neuropathy.  The recommended dose of L-glutamine is 30 grams per day, divided into either 2 or 3 doses.  I've been doing 15 grams morning and evening.  It's a powder, and it doesn't dissolve so it's a bit gritty.  I've been mixing it with about 8 oz. of Crystal Lite and I keep stirring so that it doesn't all end up at the bottom of the glass.  Vitamin B6 - I've been taking 100 mg per day.  My neuropathy has been fleeting and mild - I don't know if I'm just lucky or if the L-glutamine and B6 are helping.

jojo2373

I did not take anything with Taxol other than post chemo steroids and claritan. Even though I struggled with muscle pain, I never had any neuropathy at all. I think its all individual regardless of what you take. Just know it will be behind us soon!

bearcub

Neta thanks for the info, have you done any saline soaks?...what kind of cream have you been using? Both the MO and the RO and the pharmacist said okay to take Tamoxifen and herceptin thru radiation. I have been taking the tam before bed, had to set my cell phone alarm to remind me. No issues so far.



Cherioo you start rads a day behind me.



Hope, I had a good laugh at you trying to open the house with the car keys.



Everyone have a great week!

Timbek2

Anybody else have terrible taste in mouth from taxol?? I get the worst taste in my mouth from the chemicals and it drives me crazy. I did try to rinse with saltwater baking soda last night. But it's temporary. Just wondered if there was anything else I could do. Hope everyone is having a good weekend.

Neta69

Cherioo, no the actual treatment doesn't hurt at all but over time my skin has become very dry and a bit "burnt" in places. I'm much less tired than during chemo. Feel so much better.

Bearcub, I haven't done saline soaks. What are they for? Using Glaxol base and Calendula cream and got 1% cortisone cream for sore spots. Only one more week to go!

Foreverchanged72612

Timbek: in the beginning with the Taxol I discovered a bit of a difference in taste. It either went away or I got used to it. I started FEC and herceptin last week and in the past couple of days I have noticed a distinct different taste in my mouth. I have read about drinking lemon water and using plastic cutlery when eating. I will try that today.