**NEW** Starting Chemo March 2009

arnie

Hello all you March Warriors....Congrats ... to those that are done and hang in there those of you who aren't.

I haven't been posting as much either...since the weather's been pleasant I spend most of my time out of doors...

PORT UPDATE: 

My port has been very painful since my last chemo...  I have to shield it the shower and guard it against, animals, kids etc.   I called my onocologist on Friday night and told him that even though I think I have a high tolerance of pain...I couldn't stand the thought of them touching my port.  He said it could be resting on a nerve which happened to another of his patients just recently.  So today I go see him have x-rays taken and we'll go from there.  I'm just hoping they don't have to go back in to reposition it...but alas, I'm not sure what my choices will be...

I do think about you all...and keep this thread in my prayers...hope everyone has a good day.

Janet

PattiB

All: Thanks for all the congratulations for today's last treatment.

MomOBoys - I had some emotional days last Wed, Thus. Ran into several people, I had not seen in a while, and of course they asked about my condition (noticing the headwraps).  I have always been upbeat in that situation, but for some reason It just "got to me" to say I was getting BC treatments and I started a 2 day emotional crying spree.  I hate when that happens at work, sincee I am in a busy office. MaidMarion & MOB - I wasn't worried about hair not going back, more it would be gray, I want my hair back no matter what color!  Don't worry just keep visualizing what you want it to be.

MaidMarion - I just saw my onc and Np this morning prior to chemo.  NP said lot's are anxious about the end of chemo, because it means transitioning to the next step.  I will be seeing the rads onc and getting a CAT scan on Monday AM prior to starting rads eith 5/25 or 6/1.  I also asked for a Gyno Dr. and Gastro Dr. since I still need Colonoscopy & possibly scope because of reflux - I was given instruction in November at my Family Practice to get the Colonoscopy and this came up and put that on the backburner, I will probably have those things done at end of summer or start of fall. Must wait till rads are over - I always get nervous about seeing new Drs.

All - Have a great rest of the week SE minamal or free

Krista

Hey guys, I have a question for those with ports.  Do any of you have problems with tasting the chemo and the saline flush and Heprin?  Just wondering b/c I did.

ginagina

Arnie - good luck with your xray

Krista - yep, defintely taste the saline during flush etc...My nurse has a drawer full of mints and things to suck on, but I usually bring my own box of altoids and pop them constantly during the whole visit. She told me that I was pretty sensitive to be able to smell/taste it. You must be too!

Patti - Yeah to be done with this step!!And way to go doing the Walk for the Cure. Just contemplating that myself (Seattle one is in early June). I used to run marathons but just walking 1 mile right now seems daunting.

Laurie - You too! Congrats to be done!! Hope you are feeling OK? You've been on the chemo rollercoaster like Chick and myself.She ended up with AC on her final dose as well.

At home today and the doorbell has run twice...first was a guy looking for yard work and the other from two Jehovah's witnesses trying to get me to sign up for bible study. She wanted to talk to me about the meaning of death.

Gals, I feel good but I am not happy. And my eyelashes are falling out.

I think I need to go punch something.

Krista

The flush makes me sick every time!  I gag and gag.  Yeah the nurses have told me the same thing about being sensitive.  When I finally finished all my treatments I wanted nothing more than to have that stupid port out of me.  My docs told me that they really preferred me to keep it in for a year after treatments and I told them NO WAY!  They had the last 2 years of my life and I wanted my life back.  That sucker came out 2 weeks after last treatment!  But the smell and taste is like a nightmare that I can't forget!  Nothing would hide it.  Even tried Altoids and still could taste everything.  But finally about the last 5 months of my treatment my nurse told me about this gum to get.  It's called 5 gum.  Wriggle's makes it.  The flavor is called "Rain" and it actually works!  I couldn't believe it.  So any of you out there who are suffering from the taste and smell of the chemo, flushes and all.....get the 5 gum!  It really works!

Mom_of_boys

PattiB... Again, thanks for the affirmation that I'm not going crazy.  Here's to hoping you have a relatively SE free weekend!!!

Gina... Yep, my eyelashes are very, very thin.  I have used... and continue to use... the mascara that comes with the white and the black ends to it.  It seems to really help to make the few remaining ones I have look thicker and longer. 

crusader1

Hi All.,

Yesterday my husband and I went to Philadelphia overnight.This was my first time anywhere in quite a long time. Well I cannot believe that when I woke up yesterday morning I had laryngitis. After ten weeks since my first chemo and not even a cold where did this come from. Well Philadelphia was okay but I was sort of dragging around.

I also must say that my husband has been a big help in cleaning , washes etc. but not that great in the emotional department. He is there for me but not really . I do not feel as close to him as before my mastectomy. I think he is not comfortable with everything that has gone down. Yes he is very proud of how I handled myself and put on a good face but I guess deep down all this stuff takes a toll on us. Yes I am thru with this chemo stuff but all I have on my head is peach fuzz. It is a constant reminder of where I have been. MY chest which lost it's reconstruction due to dead skin is hard and not feminine at all. I am also not very confortable wearing my prothesis. It is quite heavy. If I am not seeing people I just put a sock in my bra. Who cares. I do think putting all this behind you is easier said than done..

One other note my oncologist did not fell I should get a PET scan as I had no node involvement and it might find many false postitives. I go back next week and will ask again

Tomorrow evening I am going out to dinner with 8 friends of mine. I am going to pay for all of them as a thank you for all the support they have given me since January. I have not told them ..

Gina- Nice to see you back on the board. I have lost many eyelashes as well as eyebrows.I bought a kit but still hav eenough not to use it..

Laurie, Congrats on your completion ..

Diane- Glad you are done too.

Julie,- How are you ?Hope all went well the other day.  I just loved the photo from the UK ..

Nice to see many back on the board. If you don't want to respond to many postings. Just say hello and tell us how you are doing...

Stay strong...

Francine

.

laurie41

Pickle141...I go back in 3 weeks to see my onc and I'm bring my very pushy sister with me. We'll plead like crazy for any kind of scan just so I know that there is nothing else lurking about.

Didle20Diane.... I start hormone therapy when I start radiation, that's my understanding from the doc. I already have started getting hot flashes from the chemo...not a fun time.

PattieB,Maidmarion,Luv2sing,KJdeking,GinaGina...Thank you so very much...I am so glad it's done and I PRAY that will never have to go through that again.

Now I have to get through the rest of it..radiation and hormone therapy...heard those are not fun either. But I'll do whatever it takes.

Laurie

didle20Diane

Hi gals!  I am back from my final chemo session............WOW I can't believe I am done.  I had a strange couple of weeks myself.....wasn't crying, wasn't upset about the BC, just emotional s**t but I couldn't put my finger on anything in particular.  I think that this is just one of those things we will all go through.....took DH with me today and the day was kinda long....took forever to get the T and C in.  I got there at 9:30 and didn't walk out until 2:45.  Talked to Patti (YAY) while she was up in PA getting her last TX.  After TX DH and I went out to Uno's and I scarffed down an appetizer and a root beer.....knowing my taste buds would start wreaking havoc on me in no time.  I also picked up some new head wraps on my way home......love them and they are cool for summer time.

Home now and having lots of hot flashes today......I hope it gets better.  Asked NP and she said the chemo is doing its job shutting down the ovaries......wow do I wish for winter right now, or do I, then my darn head would be cold.  No happy medium. 

For those that aren't at the finish line yet, you will be and in no time at all. I know it is easy for me to say now but my first 2 sessions seemed so far apart and the second 2 seemed like they were days apart.  I can't wait for all of us to cross the finish line on the chemo!  We will get there gals!

I go in for nuelasta tomorrow and meet with the NP for my next step which is starting tamoxifen.  I have done NO research here so I guess I will be taking a crash course in the next few weeks.  I am interested in the trial to add the meds that may protect mets to the bones....but I would have to switch to another oncologist and I love the one I have.  His whole office is great!  That is going to be the hard part in deciding.  My onc is not a fan of one of the drugs in the study so I will take his input seriously.

Sorry I am rambling all over the place......must be the steroids.

Hugs to all........feel good all!!!!

Diane

buddy1

DIDLE20 Yeah!!! Congrats.  You did it.  Your done.  Way to go.......  I am so happy for you.

Dawnmrn1

buddy! so good to hear from you

laurie and Diane!!! You go girls!!!!!!!

Anonymous

Just came home from a long motorcycle ride.  The fresh air feels awesome.  I spent the afternoon doing yardwork , then took a nap in the hammock .  Nothing like the great outdoors for an attitude adjustment.  Maybe it helps flush away the chemo fog.

Buddy  how have you been?  Just thinking about you and your chickens.

Kimmom

Been off the board for a few days and there is alot of posts to catch up with...

Thank you everyone for your prayers and well wishes for my mom. She lives in Wisconsin and I live in California, but she is in my faves and we talk constantly. She and my aunts, all in their 70's, are all internet savvy so we Im and play yahoo cards a few times a week. She is taking this fine and we have gone over her path report on the phone and we are going to get thru this together.

Chris: Taxol #2 tomorrow and like you I had leg and toe cramps but sooooo much better then the AC.

Krista: I was told I was unusual too. I can taste it every time they flush me.

Ginagina: I have a sign on my front door it reads: No Politikin, No Preachin and No Panderin,  friends and family welcome.

Cogratulations to those who have finished!!

Janet0527

I'm reading everything, but not frequently enough to reply individually.  Congratulations to everyone that has finished chemo or is wrapping up soon!!  Yay!! 

Today my hematocrit was way low, so I'm scheduled for a blood transfusion on Friday.  I started to put it off another week and just watch my counts to see if it were really necessary, but then I thought, hey, I feel like crap and this should make me feel better, so why not?  Has anyone done this? 

ChrisC433

Kimmom:

The Taxol was much better...I appreciate all  your info ahead of time to put my mind at ease.  I took Percocet 2 nights...night seemed to be the worst.  As long as I was moving around the pain was easily tolerated, but as soon as I would lay down...the pains would really kick in.  Good luck with #2.  I'm curious to see how much faster the rest will go since I had no reactions.  Hopefully alittle faster...I went in at 7:45 for blood work, saw the Onc. and then to infusion suite.  I left for home at 3:00!!

Sending healing vibes to all!

Chris

didle20Diane

Janet, how low was your HCT?  My Hemoglobin, HCT and RBC were all WAY low even today when I went in for chemo....and they had given me procrit 2 weeks ago......they told me I won't be getting it again since this was my last TX and I am young and should bounce back....please I am getting poisoned by chemo...UGH.  Wow, so 3 weeks of LOW Red counts....my white was even 3.1 today.  I never felt tired but can't believe how low the counts were.  If you are feeling tired, the transfusion will make you feel night and day.  Is your BP low?  You may just need some fluids.........Good luck to you.  I think there was someone that got a transfusion...can't remember who...way back...like page 20 or so.

didle20Diane

Jumping in on the weight gain train.....I gained 5 and lost 5 the first 2 TX's.....BUT after my third......whoa is the weight piling on and all in my stomach area of course.  My mission is to get my butt in shape.  Tonight I feel stiff....I should take myself on a walk but I just feel like lying in bed and being a potato.  Drinking lots of water and gearing up for my trip to the onc's tomorrow for nuelasta.

NanaA

Janet 0527 I had a bleeding ulcer 2 years  ago and had to have transfusions.  They are easy and you would not believe how much difference it makes in the way you feel.  I went from not being able to walk across the room without stopping to rest to walking the halls of the hospital for something to do.  I am doing weekly taxol and so far I have not needed shots or transfusion.  Have been taking iron to keep up red blood counts and white dropped one week but was back up the next on its own.

I think next week will be last of the taxol, only going to get 9 of the 12 weekly done.  The neuropathy is getting worse and it runs naturally in my family,  Dad has to walk with a walker due to neuropathy in his feet.  2nd opinion onc says I should just go to the herceptin only which is due week 10.  So I think this is where we will stop.  The chemo since I was a stage one is the only way I could get herceptin to start.  But now that it was started with chemo I can continue now for the year without any more chemo.  It gives me the greatest benefit of anything because of the HER2+.  I will move on to my radiation and AI (probably Femara) in June.

 Hope everyone is doing welll and getting close to finishing.  Annette

sakura73

Another hair question - I still have hair on my arms. I also still have the light downy hair on my face which has driven me mad for years. Now that does not seem fair. No hair on head, but hair on face?

I also still have my lashes and brows, but I expect Taxol will take care of that. 

What are other people's experiences?

Francine what a lovely gesture for your friends! I hope you all had a great evening.

Buddy great to see you here.

Diane my tummy is getting larger too. Have started with a personal trainer and hoping to get rid of the new flab (and all the old!) soon.

Gina sorry to hear you don;t feel happy. I know what you mean -it is not just the physical effects of chemo that we have to worry about. I hope you are seeing the light at the end of the tunnel.

Annette - great you are able to stop chemo since the SEs have been so bad.

didle20Diane

Sakura,

Regarding hair.....yes arm hair is all there, hasn't even thinned.  Eyebrows and lashes are definitely thinning but still look full for now.  Just had my last tx so not sure what final will bring.  As for the hair on my head, I only shaved once 6 weeks ago and my head is full of hair, thinned obviously but no bald spots anywhere.  I didn't lose anymore after tx 2 but after tx 3 had a few fall out during showers, but not a lot......I was trying to pull it out and could get a few strands here and there.  My husband thinks I look like a monchi chi monkey for anyone that remembers that from the 70's or 80's   I am hoping that after 6 weeks from now I will start to see some real regrowth....a sign that the chemo is really out of my system.

All having tx's today, good luck...I know reeney77 is going in for her third TC.  I "saw" her on FB yesterday and she is doing great!

hugs

Diane

buddy1

Janet  I recently had a blood transfusion.  It takes about 2 - 4 hours a bag.  They have to run it very slow.  I had a lot of blood loss and major surgery.  I cant say it made me feel better right away, but that is only because I was in a lot of pain from surgery and my bowels were paralyzed,  Most people do feel better right away.  Do you know how much they want to give you.  I received 2 bags.

didle20Diane

Hi Buddy,

How are you feeling this week?  I hope SO much better.

Hugs,

Diane

buddy1

Thanks Didle,  I have had blood in my urine (alot) since monday.  My Onc is testing it to make sure augmentin will cure it.  They told me I had a serious infection down there.  I have had so much pain, I just thought it was from the surgery.  I hope it stops soon.  I am worried its from being on clindamycian too long. 

I cant believe my hair is already starting to grow back.  Espically my legs.  I have one more AC tehn 4 taxatere.  Does anyone know if taxatere will  cause hair loss.  If not maybe I can hang on to what I've got.  Which aint alot.................

didle is that a recent picture of you.   Cause you really do look great.....You inspire me to start eating better and exercising.  (tomorrow)  just kidding.

kim40

Good morning Princesses

I've been doing a lot of reading on this board, just not much posting but please know think of you gals all the time.

I can't believe there are some of you are done with Chemo!  What a great feeling that must be!!  I have two more left of Taxotere and then I will be done with this part of the journey as well. 

I didn't get a lot of bone or muscle pain with the first Tax treatment - I'm hoping #2 and #3 will be kind too me as well.  But what I did get was thrush!  The onco perscribed me some special mouthwash yesterday and it seems to be doing its trick already.  My eyelashes have thinned out as well and I'm totally bummed about it.  But knowing that I have 2 left, makes it easier as I know they will start to grow once it is done.

Hope everyone else is doing well.  Have an appt with gyno this afternoon to discuss getting my ovaries removed - hopefully it won't be too long.

Have a great day Ladies! 

reeney77

thank you for the shoutout, Diane! I'm ready for TC #3 today. I'm so hoping it goes like #2 did and not #1. I breezed through #2. Guess i shouldn't have any expectations so i'm not disappointed. I am so anxious for my hair to grow. When i had chemo at 15, i got pneumonia during treatment so they had to stop them. My hair was able to grow back in and stay in for the remainder. I was just hoping it would be like that now -not the pneumonia of course but hair growing in and staying. Oh well. Just sick of wearing something on my head every single day.

Hope everyone is doing well! Are we going to start a new board for the people who finish treatment?

7timewinner

Janet,

I had severe anemia after my seconf TC Tx, and recieved 2 units of blood (transfusion) for it.  Before the transfusion, I could not even get up out of a chair without being exhausted. I mean EXHAUSTED. 2-3 days after the transfusion, I felt better than I have felt in 3 years...when I first started having babies. My body had been "beaten up" for 3 years from 2 pregnancies and C-sections, and now with the BC, surgeries, and chemo.

I HIGHLY recommend a blood transfusion if you need it. It's painless, easy, just takes a lot of time.

Good luck,

Nadine

7timewinner

Hi, Reeney77!! Good luck with your TC! I'm just one ahead of you...#4 is a week from today.

Cheers,

Nadine

Janet0527

arnie - I had a PICC line a couple years ago that was sitting on a nerve and it hurt like hell.  I had it removed and redone, and the relief was well worth having to go through the procedure again.  If that's what happens with your port, definitely let them fix it for you.  I have no pain or even awareness of my port - it's been bumped and grabbed by accident, and it's just fine.  That's how it should be.

Gina - I hear ya on wanting to punch something.  I mostly feel good, too, but am getting sick and tired of all of this, and I'm realizing I'm still at the early stages of all of it with tx into August and followup surgeries after that.  It sucks - no other way to put it.  But, instead of punching something, go get a massage.

Eyelashes - Mine are thinning, too.  What I think happens is eyelashes fall out normally just here and there and they grow back.  During chemo, they continue the falling out part but not the growing back part, so it's really gradual until one day, woops, they're all gone.  Then when tx is over and they come back in, since they all come in at once, they tend to fall out many at the same time again, until gradually over time the cycle adjusts and things go back to normal.

Diane, NanaA, Buddy, Nadine - Thanks for the additional info on transfusions. Diane, my HCT was 25.6. It would probably bounce back some on its own, but it's been steadily dropping since the beginning of this all, hence the transfusion suggestion. My WBC was 2.1 - typically has been in that range on my in between AC weeks, with Neulasta then kicking in to bring it way way up by tx day. Buddy, I think they plan to give me two bags, as it was described as a four hour process.

Sakura - My arm hair seems unaffected by all of this.  Underarms and legs are smooth with no shaving (which is great).  I'm expecting brows and lashes to continue going with Taxol - I start that for 12 weeks next Wednesday, so we're essentially on the same tx and close schedule.

Kim40 - I'm looking at an oophorectomy, too, so I'm very curious what you find out about this in terms of risk, how the procedure is done.  I have an appointment with my GYN next Wednesday to discuss.  Maybe we can compare notes.

My mom is a 1.5+ year pancreatic cancer survivor and yesterday she had her semi-annual CT scan, which was clear.   She told her surgeon what I was up against and that I tested positive for the BRCA mutation, and he suggested that I should start these 3D CTs that my mom does to screen for pancreatic cancer, another flavor of cancer I have an increased risk for with the BRCA mutation and family history.  She does these scans at Johns Hopkins, and they do something much more comprehensive than the average CT.  I'm only 45, so thoughts of regular screening for the rest of my life, well, shit, not what I had in mind, but then again my mom is alive because of early detection and surgery, and so will I be because of the same thing with BC, so I s'pose I'll add this to my list of things to do.  I feel like a lab rat sometimes.  I also had this weird feeling yesterday when I was in the hospital for my echo - I felt comfortable there.  Yuck.  I don't want to feel comfortable in the freakin' hospital.  I don't want to know where every department is, and the best place to park, and have people who work there start recognizing me.  Hmmm, maybe the massage I recommended to Gina is something I should look into for myself.  Ahhhhhhh.

Krista

Crusader1 ~ What can I say, sometimes men just don't get it.  For most men they are not very emotional on a normal basis and if they are they try to hide it as best as they can.  My husband is like that too. I think I have seen him cry 4 times in the 16 yrs we have been married.  Although I have to say he was truly amazing during my fight.  He was a rock!  Sort of robotic in a way though.  Anytime I would start on the depression line and begin to question things he would be the one to say "No, no, we aren't going there!" and push me along.  He took so much crap from me b/c I was so emotional but he didn't ever really show me his emotions.  So I began to wonder what he was really feeling.  It wasn't until just recently (finished chemo June 07) that I asked him the question that I wondered about for so long.  I said " You were such a rock for me during the time of chemo and you pushed me like no other and you were always totally convinced all would be ok, you took the blows I threw out and never questioned or fought back with me, you just stood there and took it all.  But did it where I never saw any emotion out of you.  How were you really feeling?"  At that moment when he looked at me, his eyes began to fill with tears and he said "Honestly, I was scared to death the whole time.  I never knew if I would be waking up to my wife laying next to me dead or not.  I didn't know how to deal with the children if I lost you and when I began to think of it my heart just broke.  So I tried not to think of those things as much as I could to keep strong for you."  The emotion that came from him shocked the mess out of me.  Something I questioned if he could even do.  But I think maybe your husband is just trying to stay in that "robotic-mode" to stay strong for you.  He obviously loves you.  Just as my husband does me.    Honestly things never really changed for him in the way he viewed me as his wife (if you understand where I am getting at).  But the more he kept trying I kept thinking to myself he must be insane...look at me!  He never stopped once!  Treated me just the same in that area.  Drove me nuts most times!  But he wanted me to know that he still saw me as the sexiest woman and the love of his life.  I couldn't see that part of it b/c of the way I viewed myself and saw the reflection in the mirror each day.  I used to scare myself!  I know I scared others!  Couldn't draw on those eyebrows evenly to save my life!  Trust that your husband is just doing what he needs to do for now to get you through all of this and to get himself through one of the biggest fights he will help you lead.  I have always said that my husband had the much harder job than I did in this fight.  Knowing that I was in so much pain, heartache, depression, mood swings back and forth and that there was nothing that he could do to make me better drove him nuts.  But he stood there and took it each and every time!  Give your husband a big hug and a thank you and tell him how much you love him!

Sakura73 ~ Hair, well I didn't loose everything off my arms but I did my legs which I LOVED!  Lost it everywhere but kept the fuzz on my arms.  I lost my eyebrows and eyelashes just before my last treatment.  But here is the kicker.....they came back literally OVERNIGHT!  I swear to ya!  I went to work on a Friday with my crooked drawn on eyebrows that I couldn't get right for anything in the world, went to bed that night b/c I didn't want to wash off the brows so I could feel somewhat "normal" and when I got up Sat morning and took my shower and was putting on makeup, there it all was.....my eyebrows and eyelashes.  I couldn't believe what I was seeing.  I ran around the house screaming like a complete fool telling everyone I could see to come look, I had eyebrows and eyelashes!!!!  I celebrated by going out and getting new mascara!  So beware the eyebrows come back quick and they come back with a vengeance!!

didle20Diane

Janet,

I have thallasemia minor which is a form of anemia that makes my hemoglobin counts low.....taking iron doesn't increase the counts.  While I was pregnant my docs really wanted me to take iron in case I needed a C Section....luckily I didn't need one in any of my 3 pregancies.  It worried me with chemo but they told me not to take anything.  My hematocrit was about 24-25.....luckily I am not that tired but I bet I would feel better with my counts higher for sure.

If anyone is feeling down it could be that your BP has dropped and fluids are the best for that.....if you need blood, by all means get it early so you can bounce back faster.  Of course we learn all this AFTER our first few rounds of chemo

Buddy, thanks for the compliment.....After having my 3rd I lost my pregnancy weight pretty fast...then in the fall I lost 10 lbs by no real work on my end...I think it was the BC really.  During chemo I have gained and lost but this last 3rd round I didn't lose what I had gained.  I think it is the hormones stoppage from the chemo.  I did join a gym and will start up in Mid June because I really want to get and stay in shape.  Legs and arms look OK, it is my gut that needs a lift....Or should I keep it for my recon surgery??????

As for the next stop on my journey....Tamox....going to onc next Thursday to discuss what is involved with when to start and also the trial if I decide to participate.....then I need to figure out what to do about recon and removing my other breast.  I would rather deal with all that next Spring at this point.  I need the rest of the year off if that is possible.

Good to see so many checking in on the boards.  Thinking of you all time and always sending my good vibes to you.

hugs,

Diane