Starting chemo January 2009?

Misty--I am so glad your son is feeling better.

rsben-8 of taxotere.  I bow toyou!  Omigosh, I have had 2 tx and wow, it is hard. Right not the biggest issue hitting me is the spaciness.  I am shocked at how I forget what I am doing and it is so hard to finish.  I have to focus on one thing at a time and if I get interrupted, I forget what i was just doing.  It is very frustrating. argh!

Hey Alo,lisalisa and everyone else finished with chemo, how are you feeling? 

Hugs jjs!

rsben70-I will also be praying for you,  I had four A/C which I tolerated fairly well.  I had all the same premeds as you and nandy mentioned. I think the emend was they key though.  I did not have much nausea.  I had one treatment with taxotere and had a really bad reaction.  Rash from head to toe and peeling of skin on hands and feet.  Several layers on the hands.  Anyway I only had one taxotere and I was switched (after being in hospital again) to taxol and so far that has been  much easier. Have only  had one  treatment so far next one on Thurs. I congratulate you getting through the taxotere.   I am always amazed at how many different ways we are treated for the same disease.  Did you have alot of  trouble with taxotere?  One can never be sure what is going to hit them hard and what isn't.  Seems to vary from person to person. How many A/C are you having?  Hope you find the one on 4/29 easier.

lisa:  I second the motion on hanging around to cheer the january jewels on who are not quite done yet, especially since I am one of them.  Thanks for hanging in there for us. 

I am having a hard time right now with the what ifs?  When I was first dx. I was like okay well lets treat it and be done with it.  Never really thought "Oh No the big C am I going to die." Just thought I was going to have to go through some rough times (everyone told me a year) so I was going to go through some rough times for a year and then on with life. I am now having What if it comes back? What if they did not get it all? What if I should have done more?  Removed both breast just to be safe? etc,  I am beginning to realize that I may worry about reoccurrence for the rest of my life and I really don't want to do that.  How do we manage to move on and not worry?

Oh how I wish we could all be in the same room -- (better yet, same beach).   

rsben70:  you hang tough!!!.. you have done so much already --- you can and will get through this!!!  Each day is a little better... hold on to that thought.  The ativan suggestion has merit -  it helped me alot.  It is safe and effective for both nausea and anxiety -- you won;t need it forever - but right now, anything that helps -- go for it.  

ladyjane:  wow, the gremlin that was living in my head last week must have invaded yours... how do we move on?   I can't wait for the day that I get to the end of it and I haven't thought about cancer....    i know I will get there, but the what ifs can be consuming.   As kmmd says the dark cloud will pass.. 

Happy Birthday to Lisa's boy child!!!!!   

M&M (that's Misty and Malcolm):  thanks for the update -- so happy that home is in site!   Does he know how many women he has cheering him on???  

Renrel: I know at least some of my belly is fluid.. I have had a pretty predictable pattern of weight gain Days 10-21, then after chemo I lose it all.... til Day 10.   My onc said it should go away 4 weeks after my last chemo.   Am trying to be careful with salt, but like most of us, sweet stuff is ghastly and salty "tastes" pretty good.   My REI buffs arrived yesterday -- I love them -- they are definately going to be my Summer look.  I even figured out how to do that twisty wrap without too much trouble.  The fabric is perfect...breathes through my flashes!!!!!   And they will be great after I get hair back....  

kmmd: how long have the neuropathies been an issuefor you?   How far past chemo are you?   Can't feel my toes these days..... experienced that with round 2 and then the end of round 5 into round 6.  Hands aren't so bad...

Jewels having chemo yet --  I'm just creeping out of the FLS hole to the "other side".... like the other Jewels, I'll be here with you through that last drop!  

Hey Jewels--SO GLAD you're here.

Misty--good news!!!

What a day. 95 degrees in East Oakland where I teach. Covered for 3rd grade teacher today while she was out  (I'm special ed and work in 3 classes). 2 kids have learned  from past years I'm a pushover and started the button pushing. I came SO CLOSE to saying YOU MAKE ME WANT TO TEAR OUT MY HAIR. and then rip off my wig--so hot anyway. I figure I'd get dinged for some kind of abuse. But we found our groove and the morning went just fine. Just got home from a long day of students, meetings, and paperwork. Wig comes off first then foob (so hot and heavy--I need to get something cooler! Any ideas?).

Speaking of WHAT IFS. Today is the first day that I really felt I'll survive. I felt good, and I hope the feeling continues for at least a few more hours because I've been so absorbed by the what ifs, especially after doing one of those online calculators that showed 50% recurrence risk before chemo or homonals for me in 10 years. Crap. I need to have an honest talk with my onc, but maybe not. It will return or not. But it might help me with deciding if I should do the bisphosphonates trial.

I also found out this weekend that a friend of mine who moved to Toronto and I lost track of died of bc 2 years ago.  I was trying to look her up becasue her major field of bioethics at Oxford is what my dd wants to study there during her quarter abroad in fall. I feel so bad for losing touch and the world has lost a truly beautiful, smart, generous soul. i hate this disease. I was in a tailspin this wkend but feel better and positive today and I don't really know why.

BerkeleyKim--LOLOLOL!!!! I laughed at the image I had of you and the wig.  Yeah, you'd probably get in trouble for traumatizing the little buggers. 

K57- Hope you're feeling better with the numb toes and all that .  I have numb pinky fingers.  weird sensation as I type. 

Alo--soo coool on the running .  That has to feel great.

Lisalisa---hope you have a nice birthday dinner. 

Yeah K57,  a beach  and a cabana--(with a cabana boy????)  all of us chatting.  Now, that sounds like fun.

 A mixed drink has a bit of merit, but I gotta stick with the red wine---Michigan has several great wineries, can you believe it you California girls?    When we get together, I will bring a couple of savoured bottles. 

Renrel--As always, you say something with deep meaning. 

Alo123:  Keep me postd on how the arimidex goes.  That is one of the pills my dr. said he is considering for me when I finish up chemo. 

Its hard to believe you've been done 4 weeks already and kmmd is 8 weeks out already.  Did that time pass faster than the weeks of tx?  I imagine it did.  8 more weeks to go for me.  2nd tx tomorrow and I am now hoping I do not experience the neuropathy that kmmd and kt57 experienced after tx #2.  I have really felt pretty good after #1.

Kt57  Thanks for sharing the Grelim with me.  I would like to say I am happy to take it off your hands but it would be a lie.  How about I keep it awhile and then give it back to you for awhile?

I was so freaked out last night that I got out my pathology report and googled every word I did not understand.  I came across a ki67 test which I had noticed before but paid no attention to and I googled that.  Should not have!  It apparently is some kind of tumor marker which indicates possibility of reoccurence.  Mine was high at 72%!!!  Guess my dr. figured that in when he planned my treatment but it kind of freaked me out.  Put that together with my onocotype test score of 47 and I feel really doomed.  Trying not to think about it but I have to tell you all its there so maybe it will not be so scary.  It is hard to share with those around me.  Have to keep on that everything is fine face.

I also got two buffs and I love them!!! The are very comfortable.  I must admit I had to watch the video several times before I could do anything with them lol.  Slow learner or chemo brain not sure which.

BerkeleyKim:  I loved the "you make we want to pull my hair out story"!  Can you imagine the looks on their faces lol.  Too bad you are right about getting dinged for abuse though.  I had a good laugh envisioning it anyway.  Thanks I needed that.

My students are starting to notice something is wrong with my head.  Several have asked why I have "that" on my head whatever it is and I have just said to keep my head warm.  This last time I was asked and replied to keep my head warm one of the little boys said "Do you have hair under there?"  A couple of them asked when we were having snack yesterday if I had hair and I said no and they asked if they could see so I pulled my scarf back a bit and their eyes lit up.  The next question of course was WHY don't you have hair and then WHY did it fall out?  Not sure how to answer that one.  I really don't won't to say it is the medicine as I can see one of them freaking out next time they have to take medicine thinking their hair will fall out.  Anyone have a good answer to that question for a 3, 4 or 5 year old? That won't scare them.  Also I have some hair starting to come back (very little) looks like little black dots so one of the girls told me she saw poka-dots.  That was funny.  Made the kids laugh so did not have to answer the WHY question.  I am sure it will could up again though.

Gotta get some lesson planning done for next week.  I am off to Texas again and need to leave some plans for my sub.  Hope you all have a great day.  Alo123 do some running for me I need it.

Patti

Ladyjane - maybe something along these lines..

 .I had a very bad kind of sickness that is really really strong called cancer.  So the doctors made up a very very strong kind of medicine for me that could kill this sickness.  It is called Chemo.   But the medicine has bad eyesight and sometimes it hurts some of the cells in my body that look alittle like the sickness.  Luckily our bodies are tougher than the canser and they come back.  My hair cells are some of the cells that looked like the canser.  So the chemo medicine attacked it and it feel out.  But as you can see, from those pock a dots it is already growing back.  It is kind of fun to be able to start my hair all over again like a baby.  It was a bit surprising for me at first to see myself looking different I know it is still me and now I like how I look both with and with out hair.

 Not sure how that will work with your kids.  I read a bunch of stories to my son (5) before the chemo to get him ready for it and he had no problem with the hair loss.  His teacher talked to his class about my being sick, and getting medicine that made my hair fall out, so they knew why I was wearing hats and scarfts and turbans and wigs everyday.  When I finally went into school bald last week most of the kids barely noticed.  One child who is special needs asked why I did not have hair.  All I had time to tell him was that I had taken a medicine that made it fall out.  As soon as I said that I realized it could back fire and make him scared to take medicine.  I wished I had time to say more to him but it was a moment when he was coming in to school with the class and I was leaving with my son.  One other younger girl, (2.5 maybe) pointed at me with a smile and said something about my having no hair.  She seemed amused, which was fine. 

  Hello ladies! Well I am joining the ranks of those of us who are going through radiation and Arimidex/Tamoxifen. I finished chemo 4 weeks ago and just started radiation this past Monday. My bone density scan showed osteoporosis and a high risk for fracture so since I started Arimidex I need to get clearance from my dentist to start Boniva. I am not one for taking meds so this is driving me nuts!

  It's good to hear we are moving on with this 'business" so we will be able to enjoy the remainder of the year without weekly or daily treatment visits.

  I have been following the posts and am glad to hear the good news ( ie Misty and Malcolm and others) and the not so good news ( the what if's,etc). The week after I had my chemo treatments I would feel sad but now that the chemo is over I haven't felt that way. I try not to think about the what if's or the future. It will drive you crazy.

  I went back to work 3 weeks ago and tonight I'm starting with sniffles! It's supposed to be beautiful here this weekend so I don't want a cold right now!!

  I was driving home the other day from work and it was sunny and warm out so I had my car windows open. Well my hair (wig) was blowing in my face so I thought " I don't have to put up with this" and I whipped the wig off and let the air flow over my beautiful bald head. It felt great!!

  Warm thoughts are sent to all of you.

Once you start going bald it gets easier and easier.  I went bald at the mall today.  Just a dinky one with a Target and Best Buy.  It might have felt different if it was an upscale one with people dropping big bucks to get "the look" but I was fine.  If anyone batted an eye I did not even notice.  And it would not have bothered me if they did.  I want people to know that there are people walking around dealing with canser, and chemo, and  hair loss, and other big deal medical issues.  It gives life perspective and reminds them/ us not to get so upset because our hair is frizzy, or we did not get the parking spot we wanted, or the sales lady was a bit uppity.  When we hide the pain in our lives it makes it look like life is supposed to be easy peasy and then we feel put upon when our own lives of downs as well as ups.  There is nothing wrong with us or our lives when things go "wrong,"' it is normal for things to go "wrong" as long as they don't always go "wrong."  And I put "wrong" in quotes because wrong is only relative to what we assume is supposed to happen or what we assume is for the best.  Anyway,  I was hot in my ketchif and/or hat (I often wear a kerchief under a hat because it makes the hat look better, give the impression of hair. ) and was not going to be uncomfortable just to comform to some concept of beauty or normalcy.  I also wearing heels as soon as they started to cause me foot and back pain, so this attitude is not new to me.  I like to look good but not at the expense of reasonable comfort and health. 

Renrel: couldn't agree with you more about people seeing us bald

Misty - that is great news about Malcom!!  I hope he's home soon!

Well, I am about 4 weeks out of the last chemo and I had my "follow up" with the onc yesterday and I have this weird kinda of down feeling I can't describe.  The visit with her wasn't as positive as I'd hoped... certain things she said just jumped out at me... like 'you are not going to be an easy one to watch" and "usually a recurrence for people your age will be in the bone" .... and "reconstruction sometimes makes it hard to find a local recurrence... are you having reconstruction?"....(well, shit, probably not now I'm thinking!!!).....I was hoping for "Cindy, way to Go, you have just gone through the hardest part!!"  But I got none of  that... maybe she was having a bad day, maybe she was offended because I sought out another opinion about stopping chemo at 4, maybe she's too fresh out of med school to realize that right after chemo, patients want to feel cured or at least celebrate being over such a horrendous ordeal ... anyway.... whatever!!!!

I start shots in two weeks to put me into menopause and I start Arimidex then.  I also have to have a consultation with someone to remove my ovaries (she thinks I need to do both as Tamoxifin failed me).  I'm also scheuled for a bone density test and a chest xray. 

So, I tell her about the hot flashes and how intense they are (waking up 6/7 times a night sponging myself off with a wet washcloth, getting no sleep) and she prescribes Effexor... an antidepressant that has shown to reduce hot flashes... so I'm really not into taking an antidepressant but I thought what the hell.... and I took one yesterday.... I was nauseaus and dizzy all day and spent the day laying around feeling like crap.  That's it for me and Effexor.. I'd rather have the freakin hot flashes...

So, I need to start running like Alo or doing something because the end of chemo has brought a little depression my way.... strange.... 

I hope you all are having a SE free week.... it's supposed to be in the 80's here this weekend.. I'm sure that'll help my attitude ALOT!!

Holt....I'm sure she must have been having a bad day.....what happened with the bisphosphinates?  Are you going to get any?  I think the reason I am not having the hot flashes is because I had the ovaries removed completely. I think in women going through menopause the hot flashes eventually stop once the ovaries are completely shut down. The recovery from the ovary surgery was no problem at all.  Nothing worse than having a baby.  I hope the good weather will lift your attitude.  Don't get down.....you're in a good place.  You finished the chemo.  I was in the chemo room on Tuesday to do some blood work....one of my fellow support group buddies was in there.....she was on her fourth TC....so I said "oh...you're done.....she said....Dr. B (aso my onc) and I decided to do 2 more since I was doing fine with the chemo".....so I start freaking out....what you're doing 6 I only did 4.....she reminded me the her IDC was larger....her grade was 3 and she had lymph node involvement.

Put your sneakers on and start walking.....clear you mind  and keep plugging away......

HoltBolt:  I'll say it ------Cindy, Way to go!!! You have just been through the hardest part!!!!  I'd say she's "too fresh out of medical school" to have any freaking people skills!!! All oncs probably think those things -- most keep them in their heads!!   You did chemo -- you killed those cells -- you removed the tissue - you will take an AI and block the food source (hormone) from any cell that might think about converting to a cancer cell ---- you're doing a biphosphanate and research already shows that will additionally decrease the recurrrece rate - esp in the bone.   And you have an incredibly positive and healthy spirit!!!!  There!! That's my two cents!   

And another 2 cents re: hot flashes.   I've been "flashing" for about 4 years - I took effexor (low dose - worked for a while, then I had to double it -- again, worked for a while..   Then started HRT (which took them away)... so I told my MD I wanted to stop the effexor ---- OMG!!! the withdrawal syndrone with effexor is pure h*ll.  I ended up actually taking the capsules apart and decreasing the dose by granules over course of 6 weeks .... Don't want to scare anyone -- but MDs rarely tell you about that possibility  -- it is worse with this type of drug because it's half-life is so short and it leaves your sytem so quickly.    What I find works for hot flashes is 1) regular exercise that increases your heart rate for 20-30 minutes (can't wait to get back to that) 2) sleeping in a cool room with a fan on  3) keep a bottle of ice water in an insulated mug at my bedside at night  4) using ambien for sleep -  I find I can take it as late as 2AM and not be groggy in the morning (I only use it when I am short on sleep a few nights in a row- it can lose it's effectiveness if you use is all the time). 

Berkeley Kim: Thanks -- am feeling pretty darn good on my last Day 8!  

Patti:  One more closer to being done!

Shocked:  Hope your last round SEs are few.

Misty:  so it's four weeks to "fuzz".   I have to shave or seriously trm this kewpie doll style I have - the little I have is about an inch and a half -- and I think it will look weird(er) when it starts spouting.  My DH is anxious to help with that - so I'll probably let him .  Think it's a badge of courage/honor to say "I shaved my wife's head." .

Funny story -- As I've mentioned -- i work in a hospital - a small hospital ( everyone knows everyone's business and they talk about it -- and if there is no news, they make it up ----)  Well anyway -- most know about my bc.. but today, one of the doctor's made a HUGE deal about how good I look today and my hair -- what a great style for me -- how long have you been wearing it that way and  Wow, it really looks good !!!    There were about 10 people there - they all cracked up laughing -- he still has no clue why -- I was going to tell him that I am actually as bald as he is -- but patient care issues came up and he got busy.   Feel bad, cuz he is a really nice guy who is going to feel bad when he finds out -- but it was hilarious..... 

On another note - I've joined our American Cancer Society Relay for Life Team - they needed a new "mascot" since our dear co-worker Eddie died from esophageal cancer this Winter.   We had a soup luncheon fundraiser at work yesterday and I have all my pledge envelopes out.  I learned yesterday that I will get 2 T-shirts -- the one for participating and a "survivor's shirt" to wear for the "survivors lap" -- Jewels, that lap will be be for you --- I will put every single one of your names on the back of that shirt -- going back to day one of this board!! You have been my glue - keeping me together through this ordeal...   Thank you all for that(weepy emotional)..

Take care of youreselves, Jewels!

Wow, I'm blabby today ----  Hope everyone is having a good day! 

  I also work in a small community hospital. The other day a doctor who usually doesn't talk to me (we had a disagreement many years ago) asked me if I dyed my hair. I laughed and said I don't have any hair to dye. He just looked at me so I told him about my breast cancer. He said he didn't know. Everyone else in the hospital knows!! I told him I was off work for 9 weeks but he is so egotisical he didn't even notice! Today I was talking to one of my coworkers and I suddenly took off my wig. You should have seen her face!! It was priceless! She was drinking juice and I shocked her so much she spit it out!! She knew I was bald but she didn't expect me to take the wig off. We had a good laugh.

  I have been dealing with hot flashes for years. I had a total hysterectomy in 2002 and had been taking Premarin off and on since then. Of course I stopped taking Premarin in October when I was diagnosed. The hot flashes do interfere with my sleep and are terrible to deal with at work--I can't really take my top off at work-- I think they would frown at that!! I'm expecting them to get worse now that I started Arimidex.

  My main problem that I have a really hard time dealing with (sorry if it's TMI) is vaginal dryness. I just feel I'm too young to be dealing with that. I know why it's a problem but I feel like a man must feel when he has problems performing. I actually feel less of a woman. I just hate what this is doing to my youth!

  My oncologist is a down to business type of guy. He isn't much of a conversationalist. My family doctor is the one who has been the most supportive and caring. He's kinda goofy but I like him. When I was first diagnosed he made all these strange comments about my life being over as I know it, etc. He was right but at the time I thought how bizarre. My surgeon talked about ordering xrays after my lumpectomy but my family doctor is the one who ordered everything for me right away so I could have piece of mind.

  Have a good evening and a great weekend. The weather is supposed to be great here this weekend so I asked my radiation technician today if I could go sunbathing without a top on. Of course she said no! which I knew she would but at least we had a laugh about nude sunbathing!!

KT- Yeah it is weird to have people ask about seeing your bald head.  I feel uncomfortable being bald, so I always wear a hat except for when I am alone in the car and at home with my family.  I look like my dad so it's not a biggie for my family. 

Yeah, people who don't notice---get a grip!!!!!!  A little bit self absorbed, hmmmmmmm?