September 2013 Chemo Group

I also saw some of you have started Tamoxifen already. My MO hasn't even talked to me about that yet. He also held my Herceptin that I should have gotten last Wednesday because it was too close to surgery... KJ you got yours though, right. and even closer to your surgery date. I am really kind of freaking out now. I feel so unprotected. I'm not even supposed to see him until the end of the month. Maybe I really need to get a new MO. I feel like I got abducted back in September and ran all over the country blindfolded and then one day I just got dumped at the side of the road in an unfamiliar town without a word. That has been my cancer experience.

mamastewart - that is such an apt description (I feel like I got abducted back in September and ran all over the country blindfolded and then one day I just got dumped at the side of the road in an unfamiliar town without a word).  It seems like even when there are answers, there are still OTHER answers, etc.  It drives me crazy.  I will be thinking of you & KJ this week with your surgeries.

So I think I'm going to be racing against the clock (or calendar) with my radiation.  <sigh>  I haven't met with the radiation onc yet, but my breast surgeon said with so many nodes positive, we don't want to wait too long for radiation.  And yet the plastic surgeon wants me to be fully expanded before I start radiation.  Wonder which doc will win that argument?  I don't know yet when they will start filling... PS said my cancer side is way too tight right now because they had to remove so much skin.  Ugh.  

I'm supposed to be on antibiotics as long as I have drains in.  I had a 1 week prescription we were sent home with from the hospital (which would have run out yesterday but PS told me to cut down from 4x day to 3x day so I have a few left).  My insurance won't refill it until Wednesday.  Um.... so I'm just supposed to be without antibiotics for two days for what reason????  I sent a message to my PS office, we'll see what they say tomorrow.

Is it a radiation thing? The not starting Tamoxifen? I thought I remember a looong time ago reading that you weren't supposed to start it until after rads, but I was thinking that wasn't true all the time. Every doctor has a different idea, I guess. I just feel like I am not in the best scenario: no Tamoxifen, no Herceptin, surgery so far away. I am having my lumpectomy Wednesday, but I just want them off. I have felt pain between 11:00 and 1:00 all through chemo (my tumor is at about 3:30 and nearly in my armpit) It is the kind of pain that I felt in my tumor. I am sure they will find cancer cells there. 

Oh, something else I have run into, and I don't know if anyone else has experienced this... I started having nipple discharge in June. I don't know why I didn't put two and two together and check my breasts then. My brain was in a total fog; I just thought "oh my milk has come back" (my daughter had been weaned for two years, but htat is besides the point) Anyway, I guess after I found the tumor I felt like the discharge was a mute point so I never mentioned it to my MO. So, while I was at my surgery clearance appointment I mentioned it to my PCP. He said that he thought I should talk to my MO about it. He also said that since it was bilateral, he didn't think it was due to the cancer, and would likely be a brain issue, maybe a benign tumor on my pituitary gland (nothing strikes fear in a cancer patient like the word "tumor" and I don't care if you put the word "benign" in front of it until you know for sure!) . So I called MO's office and he told the nurse to tell me that I need to call my BS and make sure she knows this before surgery. So I did that and the nurse calls back and says I am still okay for surgery. BUT I still don't know what this discharge means, and I am still having it. Has anyone else had it at all?

I started tamoxifen Christmas day and will be starting radiation this week. Dr said it was fine. 

Wishing you the best in your surgeries, mommasteward and KJ

Lhl how long did it take for your eyebrows to come back in? They had stayed in place until a week after my last infusion and I also got neuropathy.

Nice to hear from all of you. Hugs.

onto  radiation....taxol 2 month holiday.  still ggetting herceptin and perjeta chemo during rads.  best of luck to all with surgies upcoming

Positivenegative:  Yahooooo for clean scan.  Wonderful news!

Mamastewart, I an sorry that the surgery staff is so rude.  I think sometimes places forget that they are dealing with REAL people and froget that we have lives that have been severely disrupted by this.  It may not seem like a big deal to them, but it is a big deal finding someone there the whole time.  My husband apparently has people coming in from out of town fo ra conference at work that day, which has me fuming mad.  He told me to try and reschedule my surgery, but the next available date was a month away, so I told him no way.  A friend will be coming and staying with me until he arrives in the afternoon sometime.  It took quite a few phone calls to try and find someone available for that amount of time.  I understand the reasoning, but they need to be more compassionate to people.   It sounds like your surgeons are more compassionate that the other surgery staff.  I hope your cold clears up, and that all goes well with your surgery.

LHL, Has your fluid bump gone down?  It sounds like a seroma.  It may have to be drained if it hasn't gone down.  I had a lymph node removed a few years ago and developed one.  Once they drained it, it didn't come back.  I hope you get more firm answers as far as start dates for things.  They don't realize that we are women...moms...moms like to plan things!!!!!!!

Simplelife, So glad that tomorrow is your last day in the chair for AC...yahoo!  iI wish you minimal and managable side effects.

Alfranco, My eyelashes and eyebrows are on their way out too.

It is frustrating that there are not clearer standards for things.  My MO told me to stop Tamoxifen 4 days befoer the surgery and 4 days afterwards.  My PS said 2 weeks before, and 4 days after...that is a big difference!  Because the risk of blood clot is more immediate than the risk of recurrence just for stopping for extra days, I chose the 2 week option.  These doctors work together all the time though, and should be on the same page with basic stuff like that.

I have been on  a cleaning frenzy too.  I have been working a lot of shifts befoer my surgery, so I've been falling behind in the cleanign department.  My laudry pile rivals me in height currently, so I have been tackling that. as well as giving all bathrooms a very, very thorough top to bottom scrubbing.  I spot clean them daily, but they really needed a good scrub.  As much as I dislike doing it, I am actually thankful to have the energy to do it, so fo rthat I'm glad!

Hoping to check in more, but if I don't, wishing Mamastewart and KJ (and anyone else I missed) good luck with the surgeries this week.  May all go smoothly with no surprises, and recovery be swift and complete.

MamaStewart,

I had my Herceptin right on schedule (Jan 10th).  The oncologist said it wouldn't interfere with surgery at all.  I'm also scheduled to get the next one on time, after surgery, on the 31st.  I won't be taking tamoxifin (can't even spell it).  I think that is because I'm ER/PR-. 

Sorry to hear about the cold.  I've been staying away from people as much as I can.  Though I did go to watch the Seahawks game with friends at a local pub.  Made sure no one around me was sneezing.  ;-)

Will have good thoughts and prayers for you this week for surgery.  We got this!!

KBee,

I knocked my laundry down to half my height yesterday.  The rest is the kids and they can do their own.  ;-)

I'm also glad to have some energy back.  Grateful that I'm going into surgery feeling so good, too.  Looking back on the past few months... WOW!!... what a ride!!  Looking ahead, I know there are a few more mountains to climb, but I am going to be so glad to have chemo AND surgery in the rear view mirror. 

LightHouseLady,

How are you feeling?  Up and around?  Are the drains slowing down?

warrior - My MO wanted me to keep the port for at least a couple of years because if Her2+ cancer is going to recur, it usually does fairly rapidly so there are a number of MOs who advise keeping it in the short term.  I have not removed it, partly because I am a bit superstitious - if I remove it I will need it - if I don't then I wont, which is not really rational of course... but I also had it installed during BMX so I have no external scar and it is up near the hollow of my throat, so the scar will be visible in any neckline, so I have just left it.  I like going to have it flushed every six weeks because it is an opportunity to stay on the onc nurse's radar - when I call and ask for something they know who I am.  It makes it easier to ask a question or refill a prescription - I only live 10 miles down the road from my center.

Knightzoo,

My understanding, like yours, is that the taxotere is effective as a cancer fighting agent in our bodies for the first 48-72 hours and for the most part it leaves our system.  However, residuals remain that cause side effects (thus, why we are still nauseated and experiencing side effects after the first 72 hours).  In my case, the build up of these residuals is causing the edema (according to the doc).  I was reading today that it can take upwards of 29 weeks for the chemicals to be fully out of our systems and not creating side effects.  I hope the doc was confident in "8" weeks.  Three weeks down... five to go.  ;-)  Better not be 26 left to go!!

hi ladies, congrats to everyone who is finishing chemo this week!!!!

I have been so busy trying to get my ducks in a row for my upcoming surgery. Between the the two youngest kids travel hockey schedules and the two oldest ones exams coming up, I think I may scream...lol... well dh will be busy! The laundry pile has slowly been attacked and the house is clean(for now) . I think I am ready for Thursday.....I hope........ughhh....

To all the surgery girls this week, lets kick cancers butt!!!!

Thanks, Special K.  My dad's wife (colon cancer) has had her port for 3 years and if she passes her next set of tests/scans, she can get it out.

KJ-Seahawks fan?  Pulling for the Niners myself, but I went to college in WA (Whitman) so I have many friends who are Seahawks fans.

Simplelife, looking good!  I found that I had a stork bite too.  Funny! 

Simplelife: I just posted a picture on Facebook of my stork bite yesterday lol. My comment was: "I wonder how many people are unknowingly walking around with a birthmark on their head"

Audra, I think sometimes I "fake it until I make it". ;-)

Warrior, it should be a very good game. :-) GO HAWKS!!

Mamastewart, why did he stop your herceptin? If you are not comfortable with your oncologist, by all means find one you trust. It is your life. There is no room for mediocre doctor skills right now. 

Oh and update on the deodorante I ordered: http://www.bubbleandbee.com/servlet/the-318/%27Pit-Putty-CREAM-Trial/Detail

So far I have tried two of them and the "super pit putty" actually lasts a full 24 hours! That is without anything extremely strenuous, of course. I spent a day in the kitchen and a night full of hot flashes and night sweats though. No smelly pits in the morning!