Cytoxan Taxotere Chemo Ladies- February/March 2013

TeamKim

Hi CT sisters -- Thought I would check in and say Happy Valentine's Day!  I've been hanging out on the Winter Rads thread, but it was nice to read a few pages of posts and see how you all are doing.  

I am two months post chemo, and other than my microwaved boob, feeling pretty normal.  About a half inch of hair has sprouted on my head, and eyelashes are beginning to grow back too.  The hideous orange color of my nails has almost all grown out.   I put on some pounds when I got the taste buds back (which unfortunately corresponded with Christmas cookie season), but I have been walking a lot and those are gradually melting away.  I would like to lose about 10 more, but don't want to diet until rads is over with.  I started Tamoxifan and rads on Jan 20, and have only 10 more rads zaps to go.  Compared to our chemo regimen, rads has been a walk in the park.  I have had some mild insomnia a couple nights from the Tamo, but my body seems to have accepted it without complaint.  

The harrowing months of chemo were only possible with the love and support of all my BCO friends -- thank you again and again for being here for me!!  To those currently in the chair every few weeks, I just offer my (((hugs))) -- you can do it, just keep your eyes on the finish line.

momat927

Hello Sisters.   Final chemo was last Monday.   Genetic testing was done Tuesday.  Awaiting pre-cert for Lung Cat Scan.  I am feeling very sick to be honest but know this is the final round.  To be honest, it is hard to see beyond my current side effects but once I feel like myself again I will fully grasp chemo's completion!  It seems crazy to do genetic testing now!   I am not sure why it wasnt done in the beginning as that may change my surgery choices, but relieved it has been done now at least.   So, if test negative & Cat Scan benign, on to Radiation.   I could NEVER have gotten through this without all of you. momat

Headeast

Momat, a few more days after you feel better and you will be so happy chemo is over! Yay!

About genetic, after I finished chemo I went to see my new OBGyn and she read my genetic test and told me she might do another one more complete than the one they did for me. Then she said ot was ok but not too convinced. Oh well...

Melrosemelrose

momat927- At some point, you will start feeling better and you will look at your life in more than 3 week intervals.  I know it's hard right now because no more chemo but yet the lingering side effects are still present.  I'm hoping that your body starts to recover soon and are able to look back and shout out " I did it..... I really did it..... I'm on the other side!!!"  Hang in there..... good days are coming.......

audra67

minus two-  I've already flown to Colorado and back twice for my mastectomy and then exchange!  Who knew!  I will get them from the PT...she said I only needed it on long flights...and my congestion is WAY better from seeing her 4 times!  It's amazing...

I am worried about the blood clot thing with flying 13 hours though...

Haven't started Tamoxifen yet but had it filled, he said I can wait 2 weeks to start it...so I'm seeing my ob/gyn meanwhile to get opinions on ovarian ablation instead of Tamoxifen...we will see..

momat927

Thank you Headeast and Melrose. 

Headeast why do you need further testing?   Was this discussed in past posts?  Thanks. momat

keepthefaith

Audra, will be curious to know about the ovaries. I had an oopherectomy(sp?) and hysterectomy 8 yrs ago and MO still wants me on hormone therapy after rads... I asked her if she would test my estrogen levels and she said no need to do that. I guess my BC liked the amount of estrogen I made, no matter how much it was. You should probably get up and walk around if you can while on your flight, don't cross your legs for too long, etc.

I hope you all are enjoying the week-end!

 

QuirkyGirl

Final chemo was yesterday with my taxotere reduced by 25% due to neuropathy concerns. I'm wondering if the reduction might make any difference with my other SE.  Anyone have any experience like this?   So Vlad to be done. Going now to joyfully unpack my chemo bag!

keepthefaith

QG, I had my T reduced by 20%. I'm on day 5. I don't seem to be achy. I think I am still tired from the last round though; fatigue, heavy legs, thrush, consipation. My MO said it probably wouldn't change the short term SE's much...so far, just waiting on the steroids to wear off so I can sleep! I hope you can ward off the neuropathy. I had some tingling on my feet the first day, but nothing since. Good luck; glad you are done! whoo-hoo!

Melrosemelrose

Congrats, Quirkygirl!!!  So happy you are done with the chemo.  Time for a short break to recover before you start the rads.  Now go unpack that chemo bag!!!!

Headeast

Momat, I don't need more testing. The obgyn needed to make  point. She is a very known obgyn in this area and my guess is that she needed to find something. She really didn't. The genetic testing  i did was with another hospital, not with her...

It is their own egos. 

I just know it came back negative and that  i am in the reconstructive phase. I don't want to loom back! 

Susan0369

Hello again!

Thank you all for the responses on my arm situation. I went to my doctor the next day and he looked at the bite itself.  He actually thinks it's a spider bite!  Sadly I didn't gain an amazing physique or had the superhuman ability to climb on walls darn it!  . But I am happy to say the infection/ redness has gone down a great deal, there is just a little dark coloring to my skin but it just looks like a very light bruise. Whew!

Now though I have a different issue.  I just completed session 3 of my chemo and Neulasta. Normally the Neulasta which is done on Wednesday, leaves me in a lot of pain (nothing like the first one THANK HEAVEN), but the pain is normally gone around noon on Saturday.  It's after 8 pm now Saturday and I'm still having pretty bad leg/hip/lower back pains and aches.  I've taken an Ibuprofen 800 and Norco 5/325 (not at the same time, I took the ibuprofen earlier this afternoon), which is what my oncologist gave to me but it doesn't seem to touch the pain at all.  Right now I'm under blankets with my heating blanket going on full blast hoping the heat will help.  Around where I live we've hit the record of 73 consecutive days of being below 32 degrees and while I've limited my outdoor time I wonder if is part of the reason I'm still in pain or could it be that each time I get the chemo and Neulasta it will just take longer to recoup from it? Right now it just feels like my legs and hops have been broken and I just can't find any comfort.

I'm sorry if this is confusing, I'm also having a hard time keeping my thoughts and words lined up correctly. 

QuirkyGirl

Susan I'm sorry you are in so much pain.  Mine was very very bad after my first Neulasta.  Do you have an after hours number you can call?  I know it sounds crazy simple but I always find very hot baths comforting when in Neutasta pain.  I take all the drugs I can and then soak and climb into bed after.  Hope you get some relief soon.  Call the doc if you can.  Hugs!

MinusTwo

Susan:  My 1st Neulasta was the worst - even w/Claritin.  After that I made sure to start the Claritin the day before chemo (2 days before Neulasta) and continued for 4 days after.  It seemed to make a difference for me.  I agree w/Quirky.  Give your doc a call.  With everything else going on, we shouldn't have to live with that much pain.

Palameda

Susan, you can get quite horrid pain from the taxotere, I'm living proof. Take a couple norco's, take a couple ibuprofens (they work differently, it's ok to combine), take a hot bath, use a heating pad. 

Susan0369

QuirkyGirl, I don't have an after hour number, I've just been dealing with the pain the best I can.  After the first Neulasta shot I was in literal agony for 3 days, I couldn't even try to sleep to get away from the pain and pretty much just cried for the last two days.  The second treatment wasn't that bad, I was using the Claritan before and after so I thought I had passed the worse and it wouldn't be so bad for the remaining shots but that isn't the case this time.

MinusTwo, I talked to my dr after the first shot and asked for something stronger but he told me to wait it out to see if the remaining treatments would be better, I have a coworker that goes to him as well for breast cancer and she has said that he doesn't like prescribing stronger pain meds, it's pretty much up just the Norco.  

I think I will follow PatAlameda's advice and take a hot shower, then take another Norco and ibuprophen and hope this goes away.  

This can really end any time now, honestly. 

Thank you all again. 

Palameda

Susan, If you call the regular number for your MO there should be a referral to an after hours number (at least mine has one to reach the on-call Dr.). Some of us hit the lucky lotto and get pain from the neulasta that claritin doesn't stop or just from taxotere. Mine is from random muscle cramps caused by taxotere. I take baths with epson salts, use my heating pad, take a muscle relaxant and pain pills. Mine persisted for more and more days each cycle. I hope yours resolves soon.

QuirkyGirl

Chemo stole my sense of taste.  Gets worse and lasts longer each time.  I know in the scheme of things it's a minor SE but tasteless meals for 4+ weeks is a drag.  Just needed to vent.  All told its been since before Christmas since any food tasted right.  This has gotten old.

momat927

hi all.  Now it is true this has been an impossible winter at best in my area & cabin fever is at all time high for everyone but in addition this last round of chemo has opened Pandora's Box in terms of very low stress and frustration tolerance, lots of anger, and poor impulse control when reacting to others.   I am looking for a discussion about this. It is chemo brain+.   It feels as though chemo is ripping into me for final act & going for every single body and brain part.  Jekyll & Hyde anyone???  Thanks

Melrosemelrose

momat927- Know what's happening to you and what you are feeling all too well.  You are not alone in wondering why you are letting loose when you normally wouldn't behave that way.  I know the chemo can make one very moody and cranky.  Been there and did that.  I always knew I was having one of those "I"m cranky and not very nice right now... so leave me alone" moments and always apologized profusely afterwards.  My family did not get angry with me or hold any personal grudges for my not nice words; they understood and accepted that it was part of what happens when one is going through chemoland.  You see, those who know you will continue to love and support you unconditionally just as you have shown to them.  Hang in there..... it does get better!!!! 

momat927

thank you Melrose but i can hardly live in my own skin.  I am more than irritable. I am cantankerous and yell so easily.  Like no volume control!   You are kind and i hope you are right. Xo momat

Melrosemelrose

momat927- You are okay..... please don't be too hard on yourself.  I am assuming that with the weather being so cold and snowy and just plain yuck, that you have stuck in the house .... you are just plain frustrated with everything and everybody.  Ease up on yourself.  You are doing nothing short of a primal scream..... you know the one that some need to do to let off some steam and frustration.  You are okay.  What you may want to do is have a little family meeting with your loved ones and just tell them...." please don't take what I'm about to say the wrong way but I am having a tough time.  I am tired of this chemo, I am tired of feeling not great, I am tired of being stuck in the house.  I love everyone here but please don't take personally some of the words that are coming out of my mouth or misinterpret how I am behaving.  Please understand and just let me be for a while."  You are not alone..... we are here and we get you.  You are okay....... just hang in there a little longer and of course keep coming back here.....  HUGS!!!! 

momat927

Ok Melrose, you did it!!!  You made me cry.  I needed this cry.  Thank you so much.  & yes, I am about to say those words - to ask family to just know I need to get through this.  xoxo momat

Melrosemelrose

momat927-    Awwwww..... didn't mean for you to cry.  I'd be hugging you right now if we were in the same place right now!!!  If you find yourself struggling with words..... just read out loud or show them what I wrote and tell them " This is what I want to say and love all of you dearly......"  Like I said before, never meant to bring tears to you.  Let me know how you are doing.  Just remember, you aren't alone and you are doing great.  Hang in there!!!!

MinusTwo

Momat - Hugs!!  We don't have to be so strong & brave all the time.  Some days i wanted to kick a hole in my wall.  Hope the family talk went OK and they understand you just want to be left alone for awhile, except when you want to be cuddled.  

Melrose - as always, you are great!!

SchoolCounselor

Hi ladies,

I have been away for a while. I am so battle weary.... I get it though, we have ups and downs and the downs can really take us to the brink. I guess I was naive about BC. I am far from that now. This Friday I was supposed to have reconstruction but that is off the table now that I lost my left TE to an infection. I now have to wait 2 months until reconstruction. I have been diagnosed with lymphedema, I'm tired. Did I mention my wonderful wonderful dog Casper died, same day as my surgery.... he was only 5 years old.

However, yesterday I booked a trip to Barbados with my family for the summer and I/we have something to look forward to.

Oh  I also stopped taking effexor, it was giving me suicidal ideation, really scary.

I know it gets better, because it just has to.

XOXO ladies

Palameda

SchoolCounselor, Barbados sounds wonderful. My husband and I and another couple, good friends with whom I will take off my wig, she drove me to chemos, will go to Lake Louise in August. There will be life, good life, after BC. That must have been rough losing your young dog at the same time as starting this "adventure." You've just about had all the fun side trips available, so sorry about the LE starting. I live in fear of it, and am afraid to sleep on my affected side. It's probebly stupid paranoia, but still...

Too bad the Effexor did just about the opposite of what it was supposed to. I too didn't understand anything about BC, I didn't want to and I knew I didn't have to since no one in my family had had it. Sigh, I fell for all the pink ribbon stuff too, how with early detection, blah blah blah. I had no idea the road could possibly be this hard, and we've "just" got early stage stuff. On tv people lose their hair and vomit, then either die or recover: it all seems so simple. Who knew there could be all these other SE and complications. I had never even heard of LE, and I consider myself pretty well informed. 

My pains are lessening, I hope with all this other sh&t yours are too. I'm so happy when I can get through a day with only a little narcotics. It all just triple sucks. However, I get parts of the day now where I feel pretty darn normal. Yay! I got my infection at the start of the journey, not near the end, but the infection part was the worst of it all. During chemo I actually felt better than when I was infected, so I've got sympathy for you. And then to see your reconstruction derailed for a while. Just another sucky part of this sucky experience. All I can send you is sympathy and empathy. I hope it helps a tiny bit.

Melrosemelrose

Send many many (((HUGS)) and lots of positive calming and healing prayers, thoughts and energy to everyone here!!!!  It truly is  "the winter of our discontent" (Shakespeare); however there are better days ahead for all of us.  I know the frustrations of all with infections, side effects from chemo, drugs, surgery, etc because those are some of the frustrations that I experienced too.  No matter what, we just have to keep pushing forward and savor the good times because those are the glimpses of what will be there in the future.  It is definitely okay to feel frustrated, a little lost and tired of all of this.  I know you have families and friends and are trying to stay strong and do everything you did before you got diagnosed.  Sometimes, we are just tired and need a time out.   Just remember, no one has to be super duper woman here; just being super woman is quite enough.  Hang in there..... the best is yet to come....

MinusTwo

SC - oh my dear, what a trying time you've had.  Sounds like you're back home finally.  And your dear dog on top of everything else.  Hope you have a good LE physical therapist.  We're all sending good thoughts & hugs.  You need to treat yourself like #1 every day until you're feeling better physically & mentally. Hooray for the Barbados trip.  

Pat - Lake Louise was one of my favorite places.  I grew up across the bay from you & we took summer car trips growing up to visit the Pacific Northwest and Canada.

I'm trying to figure out where I'll go in May that has moving water.  Of course I'd prefer the Pacific Ocean, but I know I won't be ready for that kind of a trip yet.  And I'm afraid to get too far ahead of myself since I just started rads.  But it will be moving water - river, lake, stream, ocean - more than a lawn sprinkler.

TeamKim

SC, Momat -- send lots of ((((hugs))))..... We all know how it is to be down and almost out...  Somehow we rebound from it, but I am always in awe of all of you -- such amazing brave women on this thread.  Barbados sounds wonderful, SC -- got any room in your pockets for a stowaway?  

I actually just booked flights today for me & DH to go see our DS at college, playing college baseball.  We thought we would take my Spring break (I am a professor) to go to the other coast for a visit and a baseball fix.  Odd thing is, I had the toughest time committing to make the trip.  I think BC has made me so fearful of all the what-ifs.  It's done now, and the tickets are non refundable, but I can't shake the uneasiness -- weird.  I have always been very decisive -- and not one to second guess myself.  Just one of the ways that BC has changed me... At least in the short run.