Starting Chemo in April 2014

lots of Jamie and Claire fans on this thread:-). I am still getting through her latest book and did get a chance to watch the series premiere.  I thought it stayed true to the book story line but it did take awhile to reconcile my mental image of the characters with the actors.  I agree with Blueberry on the voice overs but think in the beginning they are needed for those that haven't read the book to not get confused.

Clarrn, your panty story is a hoot! Thanks for sharing.  I also had similar reaction when I received my news yesterday. I was so happy for the light at the end of the tunnel to open up even further but the "what next" is a bit uncomfortable.   When asked how do I know if we got it all he said "do we know if you are cured? No, I can't tell you that.  But, we killed all the cancer cells we could and I don't think more chemo would provide any added benefit." Now we wait to see if my body tells me something through a lump, bump, unusual ache or pain and then we check.  That's the scary part for me.  At 52 when don't I have a ache or pain? When is joint or bone pain not a side effect from tamoxifen and something else.  This is when I am glad I enrolled in the RxPonder trial.  At least I know that I will have a few more doctor appointments, bloodwork, exams to help me ease through this next transition.

Timbuktu - sorry you have to go through all of this!  Someone else mentioned it too, but it is like the waiting to hear what the game plan is that should only happen at the beginning of all of this! :-( 

My hemoglobin has gone up and down and I have had to have two blood transfusions.  You don't get a blood transfusion until it is down to 8.  Depending on your age, they might let you go down to the high 7's.  I am hoping mine hangs in there.  Went from 8 to 11.2 after my last transfusion, then 10.8 last week at which time I had my last Taxol, then 9.9 yesterday.  I get Herceptin again next week, so hoping the hemoglobin hangs in there as I won't get another blood draw for 3 weeks after that.  However, I know what it feels like, so I can always call. 

Met with my new RO yesterday and really like her.  Simulation/setup will be tomorrow with rads to start Aug 25.  My trip to California in mid October is now still in the cards which made me very happy!  I had been worried due to the delay with the breast infection.  This trip has been my goal through out all of this and has kept me going!   Now need to figure out if I should join the Summer or Fall RADS groups :-)

The organization that I work with regarding the trip doesn't know about have breast cancer and I had been dreading having to send the email telling them I couldn't go.  But came home happy that I will be able to go, and there were my flight arrangements in my inbox :-) 

Have any of you felt betrayed by your own body?  The breast cancer and then two subsequent breast infections has me feeling betrayed by myself.  I don't know how to describe it .... It is one thing when I can't run without getting winded when I am "healthy". Heck, I am an overweight, out of condition, middle aged woman .... So that is my own fault and I can understand it.  But this .... I look at this left breast and have to ask "why!?"  Seems like a separate entity just doing its own thing and not being a team player!

Now am hoping that I have no further set backs. This breast needs to behave! LOL

Makelemonade: I totally understand when you say you feel like you've been betrayed. I do too. I feel like my body has betrayed me, and I don't know if I can ever trust again. Every single twinge, ache, itch, bump is going sent me into a 5 day frenzy.

I'm also meeting with my RO on Friday and will find out more about RADS. I want to start, but honestly I'm still so fatigued I'm not sure that I can drive there every day. OR, maybe by doing so I will start to get my energy back??? does it work like that with this fatigue? The more you work out, the better you feel?I don't know, I've just been so emotional  the last few days. I just want to be able to get out and do stuff. 

Everforward: I hear you!!! LOL! I live in a Cul de sac and one single girl lives in the house across from me. She's tall, skinny as hell, long blond hair and works out like 2 a day! she's either coming back from yoga with her matt, or from a run. So annoying. I can't be friends with her. when I look at her, I think, all she has to worry about is what color work out clothes she's going to wear with her shiny new sneakers. UGH! I don't want to be bitter, but there it is. 

I feel fat, bald, out of energy, not very motivated, really don't want to be around anyone, and I cry at the drop of a dime. How's that for amazing a brave? This is not like me, and I have to turn this around somehow. 

Timbuk2 & clarrn: Sorry to hear about all the recent troubles and stresses. Sending positive vibes your way. 

Everforward: I LOL-ed reading your post about wanting to punch Miss Perfect in the face!!!

Well, it's a happy day for me today. I am sitting in my chair, getting my 6th and last chemo treatment! Yay! My MO gave me a leia to wear and I get to ring the bell when I'm done. One more journey to the dark place and back, and then...radiation! OK, I'm not looking forward to rads, but at least I've reached a milestone in this journey. Here's a pic from my chair.  Best wishes to everyone for good minimal SE days.

I am posting this on a couple of boards because I think it is interesting and might help someone.

http://blog.dana-farber.org/insight/2014/08/post-traumatic-stress-and-cancer/

Congrats on finishing chemo MommyQ!

I also feel confused ... however, I have not used too much fraganced products.  And no history of breast cancer in my family at all! 

My biggest factor, other than just having breast tissue :-), is late onset menopause.  I had 2 periods while on chemo and I swear it feels like I am getting another period now!  I am so DONE with having periods ... I am going to be 57 soon, so it is time to STOP!    My onco nurses say it is great for my heart and bones, however, having a period is not good for breast cancer.  

I joined the Summer rads group a while ago as I was nearing the end of chemo.  Just haven't posted ... then things got postponed ... 

You mentioned cording over on Fall rads ... see if you can get to see an LE PT before rads start.  My RO said that it is even possible to have a full lymphedema massage in the first week as the skin should still be okay then.

No BC gene here either. I even had the BRCA1 and BRCA2 test - both negative. I have one aunt who had it and one cousin - I never thought in a million years I would get it. 

Anyway, MommyQ and MakeLemonade I believe I will be right along with you in the RADs cycle. I meet with my RO tomorrow morning and I'm assuming they will schedule the simulation for next week. Anxious to get this started, although I'm worried about the fatigue and getting there everyday. It's 30 min from my house. UGH. 

Had some swelling in my ankles yesterday, but it seems to be a bit better today. I'm definitely retaining water. I meet with MO today to go over the end of chemo so I will see what she has to say. I also want to know if I can start taking Biotin for hair/nails. 

Can't wait for the weather to cool down so that I can start walking. I'm jealous of all of you who can get out and do a little walking. It's still in triple digits here!

I think they have not discovered all of the genes.  I know someone whose mother and sister and grandmother had it.  the dr. said it was definitely genetic, they just don't know the gene yet.

Has anyone here had discoloration of eyelids?  My eyelids and above seem to be turning orange.

Hello Ladies, Congrats to all who have just finished chemo.  Fantastic!!!

I started the actual radiation treatments one week ago today (exactly 2 weeks PFC), so I've had 6 sessions and so far, so good - but that's what I would expect early in the game.  I basically did well on chemo, so I'm hoping and praying that rads will go well too.  That's my philosophy until proven otherwise!  The set up session was a piece of cake, then went back the day before the first actual treatment to make sure the measurements were correct.  My rads are an easier commute than chemo - only about a 15 minute drive.  Door to door, the whole thing takes me about 45 minutes total.  I put on Calendula cream 2-3 x a day (once immediately after rads--so they recommend you have 2 bottles & just keep one in your purse) & the ointment version of it at night.  I told my RO that it was hard to spread and she said since I'm small breasted at least for now, I really only have to put on the cream at night too. 

Several months ago, I posted some on the Spring 2014 Rads thread because I wanted to see what's coming.  So I will look for the Summer & Fall Rads threads.  Haven't noticed them??

I thought I'd made a post somewhere about my port removal two days ago in the surgeon's office (rather than the hospital), but don't think it posted for some reason.  It was so easy.  I put lidocaine on the port area few hrs before, still felt some stinging from the Novacaine, but the actual removal was quick and painless.  My husband held my hand throughout.  Didn't have to go to the hospital fasting and run the risk of getting an infection there, not to mention the aftereffects of twilight sleep. 

The suggestion of getting an education and baseline arm and hand measurements from an LE PT is a good one.  Mine was a few months ago, and I have an appointment to have a sleeve and glove fitted next Monday.  I was told to wear it proactively when I fly - my first time will be in early Oct. 

Don't know about orange eyelids someone mentioned, but did have swollen ones, and eye doc confirmed I had an infection in both eyes a week ago - used steroid eye drops 4 x day & infection gone today.  Lost all my eyelashes - again - and thought maybe that clogged up ducts caused swelling, but she said No & to use hot compresses for that.  Eye infection = no liner which makes me look like an alien.  My whitish stand up hair is growing, and I've decided it makes me look exactly like Yoda - the little guy from the Star Wars movie.  Lol!  

No, I don't think they have discovered all the genes either.  I heard a researcher posit that antibiotics were responsible for the increase in a lot of diseases since 1930 - cancer, diabetes 1 and 2, ALS, on and on.  It is his theory that above and beyond the bad and good bacteria that we know of there are other good bacteria that have been bred out of our systems by the over use of antibiotics.  His reasoning and research seemed quite sound. 

I am banking on the potato.  The potato has 2 more chromosomes than humans do and scientists have done a good job of rooting out potato disease.  There is hope!

Hmmm, it sounds like a lot of us are in the same boat. Totally shocked to get BC with little or no history. I sure hope docs can figure out the cause(s) soon. I would like it if my 2 daughters didn't get BC, too. In the meantime, I'm trying to buy more organic foods, and get rid of products with synthethic fragrances, parabens, sulfates, and phthalates; BPA containers and flame-retardant clothing; oxybenzone in sunscreens, etc.

MakeLemonade: My MO sent an order over to the PT office yesterday and I was supposed to get a call today from them to set up an appointment, but I never heard from them. I'll have to call tomorrow if they don't call me first. I want to get rid of this cording now!!! Thanks for the info on LE massage up through first week of rads. Good to know. Wow, yeah, tell your period to stop already...YIKES! I had 2 periods during early chemo and then they stopped. So now chemo is done, I wonder if it'll come back. Probably. Yuck.

Ddkath70: Yay, another rad buddy. I've been lucky in St. Louis this summer to have very mild temps. Usually, it's crazy hot & humid here in the summers (90s-100s), but it's been 70s-low 90s so far, so I've been walking my dog when I feel up to it (when I'm not out of breath taking only 3 steps).

SwissMiss: I think it's gonna take several months before we can ditch our headcovers, unfortunately. I hear it takes a while for the hair to come back. Glad you're feeling better each day, though!

MomMom: That's great that rads are going well for you and port removal was a piece of cake! I haven't decided whether to get mine out before rads or wait until after they're done.

Timbuktu & Mscaruso: I'm always amazed when I find out about others who've beat BC. There are SO many of us out there. You can't tell by looking at them because they've resumed a normal life, and we will too. One day at a time. We'll get there.

It took all week to find out but there was a misunderstanding with my dr and she didn't mean that I had another malignancy!  Alll week!  No one called back!  I got through today by calling the social worker, explaining my situation and she called my dr. for me who had her nurse call me.  All's well that ends well but I wish it had been taken care of sooner!

Linda, I'm saying a prayer for you right now,  Let us know when you find out it's all clear!

As for how we get cancer, what a mystery!  My aunt used to have a coffee klatch every evening in her apartment.  A group of about 5 women would smoke and drink coffee all night.  Four of the women died early from cancer.  My aunt is still going strong at 85, no cancer.  She eats meat and cheese, stays away from carbs.  Smoked for decades.  Had plenty of stress.  No one in my father's family had cancer, just cardiovascular disease.  

Then there's Jimmy Carter.  His father and all his siblings died young from pancreatic cancer.  He's still going strong.  I read that they're studying him.  There is a very carcinogenic fungus that grows on raw peanuts.  But he seems immune.  BTW, my son took a class on cancer when he was in med school.  The one thing he walked away with was to never eat raw nuts.  Never buy unroasted peanut butter.  The professor said Jif, Peter Pan, etc were the way to go, preservatives are good!  

Linda,  Praying for a good outcome on your bone scan.  I have no idea why cancer picks some and not others.  I'm BRCA neg and have no history of BC in my family except for my paternal grandmother.