May 2010 Chemo

Beanius

Good Morning, I have some decent news: I had a sentinel node biopsy about a week ago and the surgeon had said the nodes were positive, but I didn't know the extent till late yesterday. One had a 2-3 mm tumor with no evidence of "extranodal tumor extension." One had a 3-4 cell micro cluster, and one had no evidence of carcinoma, so 2/3. Axillary dissection is scheduled for May 12. Could be worse ;-)

Drim - Thanks for the encouragement and reality check. My mind does go a little into paranoia with all this waiting for tests and test results. I hope all is going well for you!

Mcsushi - Thank you also for the reminder to stay positive and I will definitely bring a snack!

JennyB - I will say what these other smart ladies have been telling me: stay positive. I'll be sending you good vibes.

Redbarb - Oh Happy Day! I'm so glad you've had some good news - that is fantastic. Thanks also for the reality check as I go through this uncertain time. I will try not to worry.

Sunflower - Congrats on getting a week in! How are you feeling? Sincere hopes that all is going well for you! P.S. If I can take on the anxiety for you I surely will, I'm an excellent worrier J

Njbhwgirl - I think I start in May too, maybe late May. Sorry you have to do this, but hope I can be of help.

Hope you all have a wonderful day!

Beanie

Beanius

RRMom43 -- What a beautiful story. Thank you for sharing your success, it is very helpful to me. All the best to you! Bean

Redbarb804

Beanie: Looks like you got news like I did tonight.  My surgeon called me at 7:00 tonight(knew this couldn't be good).  He said he had some news for me. He said when he did the reexcision he took 2 layers out.  In the first layer they found 2 additional tumors.  One around 2cm the other around 1cm.  The second layer had clear margins.  I was very upset because this is the second time his nurse called me and gave me "false or imcomplete"  results.  Needless to say he was upset about that and said he would talk to her about this.  He told me I have 3 options.  1 continue with our original schedule (chemo, rads) then recheck.  2. another re-excision then chemo, rads.  3.  mastectomy.   I feel like I am back where I started from.  I am so confused on what direction to gol.  I am so frustrated at this point.  I feel like as soon as I am at the top of this roller coaster I get pushed back down and have to start all over again. It's so darn frustating.  Has this happened to anyone else?  Anyone have any advice? I go to the ono. tomorrow so boy do I have a lot more questions to ask him. 

Jenny B: Good luck tomorrow.  I will be thinking of you when I'm at my ono!  what time is your appointment scheduled for? 

RRmom43:  Thanks for the story.  I really needed a positive story at this point!

Hope everyone has a great day tomorrow. 

mcsushi

redbarb: so sorry to hear your news. i have a strong family history (my mother died when she was 39 and i'm the 6th woman in 4 generations of my family to be diagnosed) so i chose to have a blm. i have no regrets whatsoever in my decision. make the choice that's best for your health, but at the sametime, the one you are the most comfortable with. whatever the choice, no regrets. that's the best advice i could give anyone.

i'm also really concerned that this nurse has repeatedly given you incomplete or false information. that's just unacceptable.

sacphotomom

Add me to the list of may chemo gals!  I go to the Onc tomorrow to get my start dates...I'm really nervous.  But I like the thought of thinking that each treatment is a coundt down to the end!  Thats how I will look at each treatment form now on!

Have a great day ladies!

Redbarb804

sacphotomom: Good luck at your appointment today. 

fotopet

Redbarb - ll I can say is - damn.  I had the rollercoaster before my mastectomy.  Every time they did a test the results were bad.  It is an awful feeling but it does eventually stop.  Ask tons of questions and, maybe its time to consider a second opinion?

sacphotomom . . .  Welcome.  Let us know your start date and programn when you get it.

Redbarb804

Hi all,

Just got back from the ono.  I have a start date.  May 13.  Looks like we are going to be starting on the same day but different treatment, mcsushi.  I talked to the ono about the new findings.  He gave me a 4th option, start chemo then radiation and then do the re-excesion.  That's the option we are going with.  That way we can start killing whatever is left instead of waiting another month.  I'm back to my positve thinking and ready to move on with our plan.  Talk to you all soon.

Barb

fotopet

Barb - Sounds like you are on your way.  What chemo protocol are you doing?

njbhwgirl

sacphotomom:

I go to onc. tomorrow too!   Feel like you do...get start date so I can calculate end date.

went to PS today and once again denied my first fill...I am healing so slow amd still in  mucho mucho pain.  They claim it is a muscle problem and recommended motrin(which is on recall) so just picked up ibuprofen. Told me to take 800 mg per day and see if that helps. Go back to dr. again next Friday and hopefully get first fill..  Although I am told I cannot get exchange until chemo is done so guess not so important to get fills so fast.

Will report back on my script tmrw....have painless day ladies 

Leah58

Hi, ladies!

Just dropping by your May 2010 chemo thread.  I am a Feb. 2010 chemo sister.   I just finished my fourth and last chemo yesterday.  Yeah!!!    Just some thought to share:

If you are getting TC: Taxotere and Cytoxan, I iced my hands and feet during the Taxotere infusion to help with nueropathy.  I also took vitamin B and LGlutamine.  Check with your oncologist.  So far so good.  My fingers and toes are happy and my nails look pretty good.  I did not ice my head so I have a "pretty" bald head.    Cytoxan gave me headaches so I always took some pre infusion Tylenol or Advil.

I take regular Claritin (allergy) pills before and after my Neulasta injection (which I have the day after my chemo session.)  It is supposed to help with joint pain.  It worked for me.

Biotene mouthwash and toothpaste can help to prevent mouth sores.

Tucks (or generic witch hazel wipes) are soothing if you have diarhea(sp?) or rectal bleeding.

Drink a lot of juice, water with lemon, Propel, etc.  the days before and after your treatments.

Don't be afraid to call your oncology nurse if you are having side effect issues.  They are here to help and they have many medicines to help you!!    Take the meds you need to help you through it.  Ativan (lorazepam) is good for anxiety and nausea.   Ambien or other sleep agents can help you sleep on "those" nights.  You need you rest so you can function and feel better.

I have been researching and here is a partial list of foods that are good for us during treatment:  spinach, yogurt, swiss cheese, almonds, eggs, applesauce (nausea.)  For nausea, some people like to drink ginger tea and I persoanlly like slices of dark chocolate crystalized ginger!!  Many people don't get much nausea but I had some and please check with your doctor for meds until you find one that helps.

If you are constipated, many swear by Milk Of Magnesia, Miralax, Fiber Choice tabs, and stool softeners.  Don't let constipation get out of hand.  There is relief.

Take a light fleece or small throw in case you get a chill during your infusion.  You may sleep during your time there or want to bring some light reading.  Some centers have TVs.  Check to see if you are there during lunch time if you can order lunch (or bring some light food with you.)

I had no big reactions during my infusions but if you feel anything super strange, don't be afraid to speak up and let them know how you are feeling.   They take it easy and watch you each time for reactions... they can slow down your drip and they have meds for reactions.   I sucked on sugarfree candies when started each new infusion, took away any funny tastes.

Also, I kept track in my small journal about my treatments.  I wrote in the time and asked the nurse nicely, "What are you infusing me with now and how much?"  They were happy to share.  It is good to double check for ourselves.   By the time I had my chemo blood draw, doctor appointment, and then infusion session, it would take about 5 hours but every experience is different.  

I just wanted to give you some heads up on your journey.  It isn't fun, not quite as terrible as I thought, and as we all say, it is doable to help stop any cancer cells!!    

Watch funny movies and listen to good humor on those down days.  Also, I was always a helpful friend and it was hard to take the offers of help or dinners, but if someone wants to do something nice for you, let them!!

Sorry for the long thread.  I am on a steroid high.  Must get ready fo rmy last Neulasta shot!

You can do this!

Go May Sisters!   I will keep you in my thoughts and prayers!

nanaof2

I am not sure about the Chemo, I will find out on Monday when the Oncotype score comes back.  I really don't know what to expect.  The worse part is waiting to do something.

mcsushi

redbarb: i totally agree with fotopet, you sound like you're on your way!!! glad we'll be on the same schedule (even if different protocols).

 sacphotomom: welcome!!! do you know what protocol you'll be on? curious since we have the same staging...

 jennyb: thinking bout you girl!!! hope you're hanging in there, you're on our minds!!!!

mcsushi

leah58: CONGRATS!!! nice to hear from someone on the otherside. thank you, thank you, thank you for all the great tips!!!

Redbarb804

Leah58: thank you for the info.  I was just looking last night to try to find a thread that gave ideas to do prior to starting chemo.  This is greatly appreciated.

Fotopet: Looks like we will be on the same protocol.  What time is your appointment on May 13?  Mine is 9:00.  I will have a class first and then they will start the infusion. I will have TC x4x weeks, rads x33, tamoxifen for a while and then another anti estrogen medication that I can't remember.  He said I will be on anti estrogen meds for longer than 5 years because of going through menopause during treatment.  Right now i am permenopausal and eventually I will be full blown menopause, boy I can't wait.    Since they found the additional 2 tumors during the re-excsion they have changed my stage to 2 instead of 1b. 

Jenny B:   How are you feeling?  Hope all went well today.  YOu were on my mind all day.   

 Have everyone has a great day tomorrow.

JennyB100104

Hi guys,

 Well, I made it through! It went pretty well & took about 4 hours total--the benadryl knocked me out and I slept most of the time, which was actually nice, because I haven't been sleeping well at all. Then I came home, ate a giant meal (this is not good--the steroids make me feel like I'm starving!), and slept some more.

I haven't felt a hint of nausea or other side effects (except some pretty strange/awful tastes in my mouth, oh, and my chest and face flushed bright red through the first hour of taxotere)--I actually feel pretty good, but I'm ready to sleep again!

 I'm a little nervous about the Neulasta shot tomorrow--I hope it isn't too painful. 

 Leah, thanks for the pointers! Those are great! And congrats on finishing, too.

 I did bring my own pillow and a light throw blanket, and even though they gave me a blanket and pillow there, I was cold (I'm always cold) and my own stuff helped me feel comfortable enough to sleep.

But I'm glad I'm through it. I was so anxious that something severe would happen, but I'm okay--just really, really, really tired.

Hugs! We're going to get through this!

sacphotomom

So I got my start day its next Tuesday May 4th..

fotopet and njbhwgirl:  I will have Adriamycin and Cytoxan every 2 weeks for 4 doses then Taxotere every 3 weeks for 4 doses then radiation 5 days a week for 5 weeks.   then the hormone blocker for 5 or more years.. 

Today I was so nervous with the first time they used my port, since it still feels bruised there  it wasn't bad at all didn't feel a thing I think the skin is still numb there. They gave me some cream to put on it before I come for the actual chemo.  numbs it up !

Still nervous about starting the chemo ..just because of not knowing how I am going to react to it.. guess I'll know next weekend!

Jennyb:  Glad to hear it wasn't so bad for you.  l'm hoping that the way I will feel . 

 Leah58 : Thanks for the heads up Its nice to read.  and congratulations on getting done!

OK good night ladies  

  

JennyB100104

Well, I woke up in the middle of the night sick as a dog. I guess all the nice meds they gave me wore off. It wasn't a fun night. Took an ativan and it helped a little. Still, today I feel about 1000 times "yuckier" than yesterday. Just all-around yuck....

Drim

Hi all,

I feel like I've been gone a while so I've just caught up on the goings on. 

njbhwgirl:I did have my surgery at Beth Israel in NYC but I'm probably going to do my chemo at Weill Cornell on the east side. It just seems a lot nicer there and they are very supportive of the cold caps. There is a great thread in here on the cold caps (I don't know how to provide you with the link but if you google it, it will come up). I have not actually received the caps yet but I've spoken with the company and I've provided them with my information. I think I will get them next week. Feel free to PM if you want to discuss this further.

Leah58: Congrats on being done. Thanks so much for stopping by here and giving us all so many great tips!

JennyB: So sorry you are feeling crappy at the moment. Hopefully you will be feeling better soon!!

sacphotomom

I hope your feeling better by the time you read this...I have heard that sucking on candy will help with the strange tastes....

TriciaB

Going in today for port placement and Sentinel Node Biopsy.  Start Chemo Monday at MN Oncology, Minneapolis.  AC x 4 over 8 weeks; TH x 12 weeks, then surgery +radiation, then H for another 39 weeks. I wish you all (and me) a smooth (or at leat not ungodly) and successful journey through chemo.

njbhwgirl

JennyB:Many hugs and happy thoughts coming your way.  Hope you are better today

My onc. appt got cancelled...but going this afternoon..I am so so nervous...on one hand want to get protocol and get moving..on the other hand I am still recovering from bmx...I just can't seem top shake the consistent pain in the breasts. Drs. told me ibuprofen only but today when I see onc. going to ask for something stronger.  It is draining me and it has been ovedr 3 1/2 weeks since surgery.

Leah: Thanks for the tips...So nice I can  come back to these boards if I forget any of them

Drim: I am going to pm you about the caps.  will probably do chemo in Sloane's auxillary office in NJ, but if Frank is considering putting a freezer in your facility... east side of NYC is only about a 40 minute ride for me.  I spoke with Frank on the phone for about an hour yesterday. I am just awaiting my cocktail today to see if the drug is compatible for the cap. I also am a 55 yr old woman with thick hair so I might need mucho mucho caps(lol)..

mcsushi: I also have strong family history of breast cancer. My sister had her bmx 2 yrs ago, my mom 15 yrs ago and my younger sister has had DCIS two times. She laughs because she says now she is the only one in the family with breasts...gets to be a joke around the family..hey you gotta laugh right?

Hope it is a stress free day for all

fotopet

Well, my chemo start got put off until May 18th beause of one stubborn section of the abdominal incision from the DIEP.  Ugh.  More antibiotics and silvadene.  I have an appt with the PS on the 17th and she expects to spprive me to start on the 18th.  Have to bring my pre-chemo meds with me so I can start taking them right away, assuming she approves.

In the meantime . . . I updated the intro post with all the info you have been posting.  Let me know if anything needs to be added or fixed.

njbhwgirl - I still get quite a bit of aching pain in the mx breast (which was reconstructed with a DIEP).  PS says to expect this for awhile.  Fortunately for me, the pain is manageable with tylenol.  Hugs to you - pain sucks and sucks all the energy right out of us!

Leah58 - Thanks so much for stopping by and the words of encouragement!

nanof2 - Agreed -the waiting has definitely been the worst part of all of this. Hang in there and let us know what the onco says on Monday.

Barb - I already had my teaching sessions.  Now just waiting to heal up enought to start.  Not sure about my hormone drigs after. I had a hysterectomy a few years ago - kept the overies, so they have to do a bunch of tests to see where I am at menapause-wise.  Gotta love all these tests, right?  I.ve never been poked and prodded so much in my life. 

JennyB - CONGRATS on being 25% done with your chemo cycles!!!  Sorry the SE's are hitting. Cyber-hugs!

JennyB100104

Tricia, I hope all goes well today.

fotopet, sorry about your delay. The waiting gets to me the most out of everything, I think!

sacphotomom, you're right behind me. I'll be thinking about you on Tuesday. Glad to hear your port is in and working well--I'm sure that will save some agony in the long run.

I'm feeling better today. A little strange--like, is this weird-feeling thing I'm living in actually MY body? Are you sure? And my taste buds are completely shot. Everything tastes metallic.

But I'm taking the nausea drugs and they're working. Nausea=no fun!

mcsushi

sacphotomom: looks like we have the same staging, almost the same protocol (i'll be on taxol while you're on taxotere). 

 triciab: welcome! good luck with both procedures today. look like you, me and sacphotomom are all on the same protocol. we'll all get through it together.

 njbhwgirl: you're absolutely right, you gotta laugh. in my eyes, laughter is as good as prayer. 

njbhwgirl

back from onc...here is my protocol  AC x 4 every other week and then Taxol x4 every other week to start May 12th. I have to get a Mugha scan and a bone scan first.  Anyone else have to do this?

Also wondering how many of you ladies got the port. My onc. said it didn't matter if I did it or not. She said why have more surgery.  So wondering what everyone else has done or decided to do

mcsushi

njbhwgirl: a few of us have the same protocol, myself being one. you start the day before me! i had the MUGA scan about a week ago. it's done to get a baseline on how much pressure your arteries are pumping out. the procedure is easy. you get a couple injections and then it's kind of like any other scan (CT, PET, MRI etc). the MUGA is pretty short though, about 10-20 mins.

i had the port put in. it's a minor surgery (outpatient surgery only took about an hr and a half) and in the long run, i think it's easier to have one minor surgery than be repeatedly jabbed with needles. the chemo drugs scar your veins and can really irritate the injection site. some of those effects can be lessened by having a port. something for you to think about and consider. good luck!!!

marmalade_skies

Hi everybody!

I was diagnosed in March and will be starting my first chemo session on 5th May. I'm so glad to have found this forum, and I look forward to reading and sharing all our experiences - good and bad! Will be starting with AC x 4, followed by Taxol x 12 and radiation, and Tamoxifen.

Does anyone know if we will suffer from cold hands and feet during the infusion?

Good luck everyone

lorrhaw

I am a March starter but wanted to stop by and wish all of you May starters good luck.  I am glad that Leah58 posted the tips for getting through chemo because I was going to direct all of you to that post in the chemo forum.  I was prepared, thanks to all of the tips, for all the SEs that came my way and things weren't too bad.  The best tip I can give is to stay ahead of the nausea by taking the meds on schedule.  Also, this is surprising, but eating seemed to be the best way to help keep the nausea at bay.  For those of you who had morning sickness the feeling is very similiar to that so have crackers, cookies, etc. handy to keep something in your stomach.  The other tip that really helped me was gargling with salt water/baking soda to help ward off mouth sores.  The days I skipped I could feel my mouth starting to get sore so I am now a fanatic about gargling for at least the first week.  Otherwise a little dizziness and slightly more tired than usual were the only differences I felt.  I feel like I have been very lucky and wish the same to all of you.

I go in for my 3rd treatment Monday morning and while I am not looking forward to it I am a lot less nervous now that I know what to expect.

If any one wants to PM me feel free if you have any other questions or just want to talk to somebody who has just gone through chemo.

JennyB100104

lorrhaw, thanks for checking in with us.

I'm on day...ughghgh...four? after my first infusion and still feeling pretty awful. The Neulasta shot completely did me in, and tylenol and ibuprophen were not doing anything for me. I need to ask for something stronger next time. I could hardly move yesterday--the muscle/joint/bone pain was so brutal. I couldn't comb my hair because my scalp hurt so bad--and I felt that way from top to bottom. I had no idea the Neulasta SEs were so strong. Today is a little better, but I'm getting these out-of-control headaches...argh.

The nausea/constipation have been ever-present but definitely manageable with the meds. And thank goodness for Ativan!  Even with all the discomfort, I've been able to sleep, which is a godsend--I really haven't slept well at all since I was diagnosed.

I keep hoping every day will get better. If not for this debilitating headache I have, I'd probably feel like I was definitely on the upswing.