September 2013 Chemo Group

hockeymommy

hi girls,

Kjsimpson- I have surgery on the 16th too!! We are going to rock it together!!

LHL- I am so glad you are doing well!!!

I am finally getting my energy back!! Went for a 10k walk today!! Had to bundle up because its so friggen cold out! But I did it. We are suppose to get a big snow storm tonight.   I went to get a few groceries so I don't have to go out tomorrow, man was that a bad idea. I think every other person in town had the same idea..lol... my poor son has the flu. Praying it doesn't go through the house!

Hope everyone is feeling well!!

kjsimpson

Hockeymommy,
Yes!  We will rock it together!!  Trying not to get too nervous.

Alfranco,
Having your port taken out is a good sign.  :-) Congratulation!

LisaSp

Happy New Year everyone! So glad we're here to greet 2014 together.

Peacock: Sorry to hear about the jerk MO; get rid of him! LHL: Yay being released! Hope recovery progresses smoothly. Just be careful and don't overdo.

KBeee: Taking biotin here and iron, and using Nioxin shampoo. I'm now three months PFC and hair is filling in, especially  on the back. Glad to hear the hair is coming in for others too. Mine is so gray in the front I definitely have the Jamie Lee Curtis thing happening. Think I'll trying a temp dye next week to see what it looks like. 

Hockeymommy: Glad your energy is coming back! I finally feel like my damn backache is subsiding now that I've been done with rads for about three weeks. I also felt more normal today, regarding energy thankfully. Having a hard time sleeping though.

I've decided to train to walk a 5K in the spring with the local runners club twice a week. I'm excited to start as part as my new emphasis on exercise. Yay!

Hope we all continue to feel at least a bit better every day.

mercedes60

kjsimpson, thks for the update on LHL, and glad ur feeling good all the best for your surgery may i ask exactly what you are having done?

Hockeymommy, good to hear you are doing well and yes we're feeling that artic blast also, crazy weather this year, good luck on your surgery, didn't you have surgery already and are you having another masectomy?

Knightzoo, thks for the info. Yes the AC are hard and i found #3 and #4 to be the worse, but you'll get thru, remember as much as we think this s#%%#% is killing us its saving our lives.

Simplelife. Yah one more to go must be a good feeling, i did #5 taxol last thursday and im counting them down 7 more to go snd im done. Well still surgery....

We rock, we fight, thru tears of joy and despair we conquer, we are women.........

simplelife4real

Hi All....just checking in.

Lighthouse, I bet you are glad to be home by the time you read this.

Knightzoo, AC #3 has made me very tired through the first week. I hope I pick up the pace a little during week 2.  My mouth feels like cotton.  I keep sipping on fluids. Rinsing with Biotin helps too.  At first, I thought I was dehydrated.  Now, I think it's more a matter that my salivary glands aren't producing as much fluid.  

I'm getting to the point where I want to count the days down until I'm done with chemo.  I figure since my last  AC infusion is Jan 14th, my real "done" date will be two weeks after...when all chemo has left my body.

I meet with the surgeon Jan. 15th, the day after my last AC.  I figure the steroids from the AC the day before will give me the energy boost I need to get through those appointments (ultrasound, mammo, doctor).  I believe the plan will be lumpectomy and lymph node disection.

I have to say, the AC seems to be doing exactly what we wanted it to do.  I can just barely feel where my tumor used to be.  I'm keeping my fingers crossed for a pCR.   If I don't get one, my oncologist may give me more chemo afterward with a platium-based chemo.  Not looking forward to more chemo, but if I don't get a pCR, I'm going to want it.

BabyRuth....I hope your heart scan turns out okay.  I have a friend who is a 9 year Stage lV survivor of BC.  She credits herceptin to saving her life, but she can no longer take it due to heart issues.  She has been off the drug for 5 years now and no mets.

kjsimpson

All,
LightHouseLady is being discharged today and heading home.  Appears that all went really well. I imagine she'll catch everyone up soon.

Mercedes,
I'm having a modified radical mastectomy on my left side and a simple mastectomy on my right.  The cancer is on my left side, involving both the left breast and up to the axillary lymph node.  Since I have inflammatory breast cancer (IBC), there will be no skin or nipple sparing.  IBC invades the skin, so they want to take as much as is necessary to get really good 'margins' between where the skin was involved and where it was 'clean' at the time I was diagnosed.

The difference between modified radical and simple is that the radical takes lymph nodes from under the armpit area too.  So, my cut will be longer on the left side and may involve the pectoral minor on that side being removed or at least cut into.  Thus, I will have to do some extra physical therapy with my left arm.

I will learn more when I visit with the surgeon on Thursday to go over the details.

PeacockGirl

alfranco..im having my port out on weds! Yay for both of us! I really had hoped final chemo was the last time it would  be accessed but they used it when I went to ER last Saturday...I really can't stand the saline flush mouth taste! 

Anonymous

Hi. What is pCR? Thanks.

knightzoo

simple life - do you know the name of the platinum based chemo? 

On the watery eyes/dry mouth - I had something in my eye on New Years eve and went to my eye doc who is a cancer:chemo survivor. He said that the mucous glands that wet the eye and mouth shut down in chemo. The watery eyes are because the tear gland tries to compensate for the eyes but doesn't have good regulation. Fun fun. 

kjsimpson

Knightzoo,

That makes SO much sense about the eyes and mouth, now.  I'm so glad that I'm two weeks out for chemo and my dry mouth and watery eyes are starting to subside! 

HVV,
not sure what you mean by pCR?  I found this, with a google search, though...

http://www.medpagetoday.com/HematologyOncology/BreastCancer/32977

knightzoo

pathological complete response? It means they find no cancer during surgery for those that did chemo before surgery 

alfranco

Peacock congrats on getting your port out. I am a bit nervous, I started disliking hospitals since I got diagnosed.

simplelife4real

Knightzoo...it will be either cisplatin or carboplatin. If I need it after surgery.  I don't know if my MO will be combining it with anything else.  I believe it will be cisplatin, but I didn't write it down.  My MO said it would depend on how much cancer is left at the time of surgery.  I'm hoping there will be none since this AC is shrinking my tumor like crazy.   AC has been hard for me, but I'm really happy with what it has done to my tumor.   One more infusion to go....Jan. 14th.    I meet with the breast surgeon the next day (Jan 15th) and will be having an ultrasound and mammogram that day.  I'm really curious to see what it shows up.  All I want to see is the little ribbon marker they put in at the time of biopsy.

lighthouselady

Greetings chemo sisters!!!

I'm lounging in Hubby's recliner... Feeling so much better at home. The surgery was long (7-8 hrs) but went well.  I've been very sore but not awful and pain meds are keeping it under control. My BS said my skin looks great and I should have no problems healing. I haven't seen my PS because he was going out of town so I saw his assistants all weekend. I will see both him and my BS on Thursday (not looking forward to six hours in the car so soon after we got back) and I should have the pathology report from surgery. 

I'm struggling a little with how much (or how little) I should be doing. I know I just had major surgery and I need to rest, but my surgeon also told me to be up and about (like for meals) as much as possible. I just took a shower for the first time and after putting lotion on and getting dressed, I am completely wiped out. I'm shaky and queasy and feel like I need a ten hour nap. Am I being too optimistic about what to expect? I'm sure it's even worse since I had chemo first so my body was already down and out from that. 

Hubby has been an unbelievable help to me, and my mom is here for two weeks to help me and help with the kids. That's good because I can't drive until I get my drains out.

I thought I would be sad when I saw myself after surgery, but I wasn't. I am more intrigued than anything.... I swear it's like a science experiment. LOL Tape and stitches and tubes and drains and bumps and lumps... :-).  I'm glad the PS was able to fill my TEs a little so I didn't wake up completely flat. It's not pretty, but not horrible either.

Hope everyone is doing well!

PeacockGirl

Michelle, I'm glad you are home and doing okay. Hospitals are no place to heal! You are one tough cookie, I'm not sure how I would fare after chemo with surgery! Let your mom and hubby do things and just concentrate on yourself for a while. you got this! (I'd be the same way though, not so much freaked out as curious and my scientific brain would probably get all nerdy about post surgical stuff)

simplelife-just curious but why did you opt for chemo first and then surgery? Was your tumor large and they predicted a bad surgical aesthetic outcome? I had the option of chemo or surgery first and chose surgery because I wanted the tumor out (2.1 cm) and wanted to know what my nodes were doing. They told me if I waited till after chemo to do lumpectomy my nodes would have been negative (because of chemo) and they would have not known whether they were positive in the first place. that was an odd gamble for me.  It was scary but I am glad I did surgery first and found out my nodes were negative. My tumor was rather 'surface' based though so surgery hardly changed the size or shape of my boob, if not for the scar you would not know that I've had a lumpectomy.

in other news I'm coughing much less and finally at the tail end of the cold virus from hell. have stopped eating ice cream for dinner (haha) and have cut out sugar and simple processed carbs. forcing myself to eat spinach and kale (which I detest) in hopes of boosting my iron and hemoglobin. I really want to start running again. Well, it will definitely be more walking than running but I want to get back to it soon. I gained almost 14 pounds since chemo ...have never been this heavy in my 44 years of life. it's bumming me out. My useless MO said my counts should be up in 2 months or so. He predicted I would have my hemoglobin back into the 12's by then. We'll see and hope for the best. I just want my white counts/neutrophils to stabilize after chemo/neulasta and for those liver values that were getting high to come back down (AST and ALT and one other I can't remember) ..but they were crazy high during Taxol.

Still not sleeping well, am trying to wean myself off of Ativan and Elavil at nighttime but it's hard. I can't get to sleep until around 3am and don't really start sleeping well until 6am when I have to get up anyway. Dang chemo (probably chemo pause too) really has messed with my sleep. I used to be such an good sleeper! Guess I will try Special K's suggestion of some melatonin next. One thing I have noticed is I'm not having those hopelessly sad days where all I do is cry so much anymore. Either the Elavil antidepressant has finally built up in my system or lack of chemo and those horrible steroids is finally helping. Hair is growing like crazy. Finally some dark hairs coming in after all silver for the last few weeks.

simplelife4real

Lighthouse, it's so good to hear from you.  I hope you have a smooth, speedy recovery.  I'm glad to hear the pain isn't too bad.

Peacock, I'm not sure if I had it to do over again if I would chose neoadjuvant therapy.  It upside to it is that if the chemo hadn't worked, they could have switched to something else.  Also, if I don't get a pCR, I might end up getting more chemo.  The downside to it is that I have had cancer cells in my body for a longer time period.  The thing I worry about the most with this option is the possibility of brain mets since neither taxol nor AC are particulary good at crossing the blood-brain barrier.  Neoadjuvant therapy seemed like a good idea at the time based on the way they explained it to me.   I wasn't really worried about tumor size and I already knew I was node positive at the time of initial diagnosis, so that didn't play into the equation.  Knowing what I know now, I might have done what you did.  I will be pissed if I get brain mets.  Hopefully, we will both be around 5 years from now thinking back about how this was hard, but we didn't have a recurrence or mets.    Sometimes I feel like I'm just a guinnea pig.  

BabyRuth

Michelle-so glad to see you are feeling good.  Just continue to take it easy.  You will tire rather quickly for a while before you get your strength totally back.  I know my PS wanted me to walk some every day even if it was just a short distance like to the mail box and back.  The worst thing for me was trying to learn how to sleep on my back.  I just propped up at big pile of pillows and slept sitting up for a long time.  That was not fun as I was an avid side and stomach sleeper. It does not seem that important now and I have adjusted to only side sleeping for a short period of time.  I tend to get sore after a while.  Praying for good news from your pathology report!

Peacockgirl- I know what you mean on the weight gain.  Mine just kept going up until recently.  I saw my oncologist today for my herceptin treatment and she came in and said " What is up with you, who loses 5 pounds over the holidays?"  I told her that I still had 5 more to go until I was back to where I wanted to be before she started pumping me full of meds.  I have been making myself go to the gym every other day since early November and I am finally seeing the payoff.  It feels awesome to get on a scale again and not dread looking at the number.  Once you can start exercising you will lose the weight pretty easy.

Tomorrow is my big appointment with my tattoo artist or my medical micropigmentation specialist as she states on her business card.  I can not wait to see what all she will show me and I am very intrigued by the whole thing.   I will let you all know how it goes for anyone else considering doing the nipple tattoos.   I have not decided for sure if I will do it or not.  I guess that will come tomorrow.

Art123

lighthouse: glad to hear your surgery went well and are back home.

I read that you can still do snb after neochemo. My wife had a lymph node biopsy when first diagnosed and it was negative. I'm assuming what she was not an snb. I'm confused now.

Do they put in under for snb? When she had the thing, they didn't put her under but did inject her with something prior to taking the biopsy. 

I'm really hoping she could avoid radiation because she is only candidate for implants.

alfranco

Lighthouselady-glad to hear you are doing great. Wishing you a speedy recovery.

Art- before surgery my BS did a biopsy on  my lymph nodes and said they were negative. When he did the actual mastectomy 6 were positive, but your wife is doing chemo first so that may be a plus. My PS  said I have to wait a year after radiation to do my permanent.

VintageGal1111

Good to hear from you! You sound fabulous & I am sure you will have an easy post op with that attitude!

Take care,

VintageGal

alfranco

I had my port removed this morning, I felt no pain till now. Taking some ibuprofen now. 

LisaSp

LHL: Great to hear from you and glad you're recovering well. Just take it easy and let your mom and husband do everything; you will get easily tired. It takes a while for your strength to come back after such a major surgery. Small walks to meals are good, eventually a short few steps down the block. But you can always rest!

Peacock: Good luck to getting back to exercise. I've promised myself to try to exercise regularly. First step, today I actually went to a yoga class for cancer patients -- so great! It took some doing to get out of bed, but I did it. Wednesday, Pilates and next week, start training to walk a 5K!

Alfranco: Glad there was no pain with the port removal. Everything should be fine. I had mine removed in October. If anyone had theirs out a while, has the scar healed? I think the surgeon didn't do the best job on removing mine; scar still is tender.

mankatostate

Lisa-my port scar is tender too. I had mine out a few weeks after yours...during Thanksgiving week. I too have been wondering if it should be feeling better by now. It seems my scar from my lumpectomy healed quicker. I did have a different surgeon for both though. It could also be that the distraction of chemo took away from me noticing when my scar from my other surgeries started to heal. Are you healed up from rads yet? My skin is peeling but really doesn't hurt any more...well maybe a little under the arm yet.

kjsimpson

mankatostate,
How many weeks of rads do you have to do and how far along are you? 

KBeee

LHL, So glad all went well.  Praying for favorable pathology results and continued rapid healing.  Let others pamper you.

Alfranco, Great news that the port is out...one more step closer to the finish line.  I hope the pain eases quickly.

Yesterday was the frist day I had to put m,y airpack on for a call at work since I have had my TEs.  I thought for sure they would freeze, crumble, and break since it was about 16 below zero out, but alas, they held and were fine.  That was a relief!  16 days until exchange.

alfranco

Kbee so happy that you are going to get your permanent so soon.

lighthouselady

LOL KBeee.... that was funny about your TEs.

Hope everyone is doing well. I was so happy when I looked in the mirror at the back of my head, it looks like a five o'clock shadow!! At first it was all coming in pure white. It still looks white from the front and sides, but at least it's hair I can SEE!! My mom just washed my hair for me since I can't lift my arms. It feels so good to have a clean head!!

My biggest complaint after surgery isn't the pain or discomfort or even the stupid drains.... I'm just so shaky and get weak so easily. I know my stamina was already shot from chemo so it'll take a while, but it's bad when you need a nap after showering and getting dressed! :-)

Art123

glad you are doing well lighthouse lady.

we met with radiation onc (he's the chair at ny presbyterian and used to be at md anderson) today for a consult, we were there for awhile as he was patient with our questions.  he examined my wife, no lump felt (nat said the same thing last night).  she advised him she was leaning toward bmx.  he said with the great response you had to chemo, neg pet, neg lymph node biospyand no family history, youd be an excellent candidate for breast conserving surgery and should not do something drastic. he was pretty adamant but said we will know more after MRI. he didn't seem to think it would impact recurrence or change 5 year survival rate.

the med onc mentioned lumpectomy last week too when it was the size of a pea.so we don't know what to do.  i'll leave it up to nat, on the one hand I don't want to see her go through any more pain and uncertain procedures than necessary and on the other, don't want her to go thru this gain 3 years from now.

I need to get the magic 8 ball, maybe that will know the answer.

stay strong and healthy ladies

kjsimpson

KBeee.... very funny!

I just realized something!!  I have an herceptin infusion on Friday and on Saturday I do NOT have to get a bone-crushing Neulasta shot!!  YIPPEE!!! SKIPPEE!!!  I am grateful for the Neulasta because my WBC never dropped too dramatically, but that was amongst the most painful part of chemo.

Did I really say, "YIPPEE!!!  SKIPPEE!!!" outloud??  ;-)

warrior70

Hi everybody!  Any September 2013 chemo starts still doing chemo?  

I have 4 Taxols to go...next one is Thursday, 1/9.