first chemo done

Hi Deb and tickled to hear you feet are better. You could try lots of vaseoline and the socks.

Sorry I didn't write back last night. I guess the fatigue has really set in since my chemo last week. Not sure but it is a struggle to do much.

Feel better Deb,

Jerri

Hey everyone.    I just had my first chemo tx yesterday, scheduled for 4 tx of FEC then 4 Taxotere.    Have to go at 2:00 for the Neulasta.    I forgot about the Clartin!    I have to go get some - hope it's not too late.   So far I've felt great.    Took my ani-nausea stuff even though I felt fine (on advice from the chemo nurse -- doc prescribed as needed) and so far, no problems.   Drank about 100 oz of water yesterday!   Then instead of my usual glass of wine at night I had a wine goblet with 1/2 grape juice and 1/2 sprite!   Chemo nurse also said take a good B-complex vitamin.  

I'm gearing up for the hair thing, and will schedule a short haircut for this week.    Oh well.... we can deal and I figure its the best reason i'll ever have to buy a Dolly Parton wig!   

I see some folks are near me!   I'm in Dayton, Ohio -- not far from Loveland and Cincinnati!   

Best wishes to you all.  

Well Gang, glad to hear everyones hanging in there.....Jill sorry you're feeling so bad.......and I'm getting more and more mad at that "witch doctor" by the day....all day yesterday this port hurt, then last nite the side of my neck swelled up, so called the oncs office, got a different doctor who called me back, he said to go to the emergency room, that it could be a clot....so I go, went at 10:30, they accessed the port, took blood outta it, left it accessed (why I have no clue) then started an IV in my hand, used it to draw more blood....gave me more liquids, and once again told me my wbc was low....they said it was hard to tell if there was an infection in the port or not as my wbc was low.....gave me morphine for the pain....LOL, kinda over kill......but at any rate, got outta therre at 4am with instructions to call for an ultrasound this morning, got up at 9 and had to be there at 10:30, they found no blood clots so that was good.....and the witches office just called back, just told me to just watch it AND that the doc from the hospital had said my white blood count was in the normal range.....I just love a doc that tells me one thing and tells someone else another thing!  GRRRRRRRRRRRRRRRRRR!

Luv, hugs and prayers

Deb

Good morning, Ladies !

Feeling rather philosophical here this morning.  We have had our first really good snow of the year here today.  It made me think about how quickly this year has gone.  When I started down this journey, it was in the middle of summer in the sweltering heat.    Now I look at the quiet woods behind my house and am surprised winter is here.   (Did we even have autumn ?!!).    Kristi - as a fellow bird lover, you will like this.  I have a bunch of Cardinals that come to my bird feeders.   I love the striking red of their feathers against the white backdrop of the snow.  It is like something right out of Currier & Ives.   They are beautiful.    My son just bounded down the stairs to the refrain of "it's snowing, it's snowing".    He is not even stopping to get breakfast.  Already has his winter gear on and is going outside to play in the snow. 

Anyway, this chemo round has been the worst yet for me.  Ladies  - I am flat out depressed.  Really hit bottom this time.   Most of the physical stuff is the same - the tingly/hands and feet, the extreme fatigue, sore bones/joints, loss of appetite, sore mouth,  stingy port, blah, blah...  But, this time I did get a little nauseated which was quickly counteracted by those wonderful drugs they give us.     However, it is the mental stuff getting me this time.  I can hardly stand to get out of bed in the morning.    Don't want to be around anyone despite everyone wanting just to help.   Even my dog is annoying me.   My husband, bless his heart, took the cue last night and took the kids out to the movies and dinner just so I can have the house to myself (or perhaps save the kids from my rather ascerbic personality at the moment).   Then I make the mistake of watching the news last night  - which served only to heighten my anxiety further (job losses, terrible economy, terrorism, etc., etc., etc.).  Think the best thing for me is to stay in bed and watch sitcoms.    

Anyway, I have had my little rant for this morning. 

Deb - Man.. you have been through the gamut on this.   You fix one thing and another goes whacko on you.  Glad you did not have an infection.   I hope things are better today.    We have talked about the relationship with your doc before.   You have to decide how much grief you want to put up with.

Kristi - You sound so much better this time around than you did the first time.  Seems like all the precautions you and the docs took are working out for you.   And you deal with your hair any way you want to.    We all understand.    The snow made me think about something with you.  As I recall, early on, you were concerned about the holiday ski vacation you usually take.  That was you, right ?    What did you ever decide to do about that ?   My family and I are still on schedule to come to California after Christmas, which is why I had them move my LAST chemo up a couple days. 

Debbie - Hooray !!   A date.. finally.   I know it is a relief and scary all at the same time.    Just remember, it is another milestone out of the way.    Glad to hear your scans went well (guess the part of the scarecrow is out now too!)   I'll be thinking about you next week.   I have missed your posts this week. 

Jerri - Sounds like things are going about as well as expected.   I hope the fatigue monster isn't getting you too bad. 

Barb - You were really down last week.  Are things looking better for you now ?

Diva - Welcome !   Which part of Dayton are you from ?   My Dad lives in Miamisburg - probably not too far from you.  You sounded a bit like you were still on the decadron buzz in your last post  (forgive me if that was not the case).   Are things still going well for you ?

Cristl - Long time, no hear Lady!    Sounds like you are motoring through this thing.  Half way. Wow.   Just seems like yesterday you were agonizing of the decision.   Also sounds like you and I are both dealing with the mental aspect of this right now.   Wonder if the fact that we are both on the Taxol regimen (although different frequencies) is playing into that ?

Well, take care ladies.  I hope to pull myself out of this funk soon.  

Jill

Well the whole thing with the witch doctor is she's going to think I'm one big baby or thinking this stuff up and I'm not.....I mean ya can't think up a swollen neck....have had two chemos and 2 trips now to the hospital each time for one thing or another....Good Lord, does it ever end? LOL

Have spent today just really feeling crappy, no energy.....achey..........guess am just tired.....Think am going to ask her for something to sleep, the xanax doesn't quite help anymore.....I tried without it the other nite and had nightmares that they kept putting me on different tests of chemo......kept waking up, then would go back to sleep and have the same dream....needless to say I gave up......

woo hoo I go back Weds, I can't wait....NOT.......but glad to hear everyones doing ok, and Jill hang in there baby girl, i know that brick wall you explain so well now......

Praying for everyone that time flies by and this is over with!!!!!!!

Luv, hugs and mucho prayers!

Deb

Hi again !

Thanks all..  Your posts were just what the doctor ordered.  Still a little down, but hanging in here.    Just needed to rant a bit.  

Kristi - I am sorry that your are still suffering from intestinal stuff.   But, it sounds like you are suffering the other extreme this time.   Argh.  Not sure which is worse.  That said, I almost puked myself when you said "sushi" in your post.  Normally, I like that stuff, but the mention of it in my current state nearly made me sick.  Weird how things affect you.   But..PLEASE do what you can to stay hydrated.  This is vitally important (as Deb can tell you).    If you find yourself really light headed and/or dizzy, make sure you get somewhere to get you some fluids.   Usually those symptoms are the dead give aways for dehydration. 

As for love of animals - well, that is something that we share.  Remember that darn cat that adopted us?  Well, he is sitting right next to me on the desk, sound asleep and purring away.  I am such a sucker.    

Also sorry about your ski vacation - but right there with you on the "not letting cancer keep Christmas from being special".    I am also doing what I can here on that front as well.   Some things are just too important.   While I will still be traveling, I put my family on notice that I will need some "down time" during the vacation.   They seem cool with that and just are happy I am making the attempt.   Time will tell.   Don't blame you one bit for not wanting to travel long distances with intestinal issues.  If  my vacation was not already paid for, I might have been bagging it as well.  

Finally, I had something interesting that happened to me today.  There was this young lady that found me on this board and had been asking me for advice on her case.  It was a classic "mushy middle" case much like mine and Cristl's.   She had been conversing with me on the "private chat" part of this board.   Much like I do with some of the other ladies, I helped her interpret her pathology to the point she could ask her oncologists the questions she needed to have answered (I don't dare try to give medical advice - that would be irresponsible).     Well, I am happy to say that in her case, all the stats and the markers led her doctors to the point that they are saying that despite her very young age, she will be in good shape with radiation and meds - no chemo!  I was so happy for her, I nearly cried.   I guess the reason I am telling you this is that between that experience and Kristi's kind words in her above post, (I have never been a "shining light"), perhaps there is something good that can come out of this.  If we can help total strangers through a dark time and then bond together when it counts most... well... I find that somewhat reaffirming.  So, thanks.  I needed that.

Anyway, enough philosophy for tonight (which is worse - the science or the philosophy?).   Everyone get a restful night's sleep.

Jill

P.S. Robyn - Latin Aerobics?!!!!   I am tired just reading your posts, but you go, girl - and let me know what drugs they are giving you, because I want some of those.   Yes, I know right where Beavercreek is.  Nice town.     

Good morning Ladies !

Jessee - Hi !  Nice seeing you over here on our little skunk works thread.   Interesting that you bring the decadron thing up.  In fact, my doc did lower the decadron amount last time in the IV.  Turns out there is a new protocol when giving decadron with Emend (the drug that keeps us from vomiting).   I found this out last time.   Evidently, Emend has the potential to potentiate decadron, and the new protocol is to lower decadron from 20 mg IV to 12 mg IV when giving them at the same sitting.    In other words, when they give Emend at the same time, it has the potential to "super charge" the decadron effect (as if we needed that further).     At this point, I am not sure what the lesser of all evils is.    But, I know I got ONE more of these treatments before going Herceptin solo.   Can hardly wait to get this over with. 

In my case, I think this time around was a mish mash of a lot of factors.  Yes, I do think the decadron drop off was still there, and because I am a pretty intense individual, this drop off tends to be precipitous.   So maybe I will talk to the doc about lowering the decadron further.  However, this time around was also complicated by hormones.     My period returned with a vengeance.  So, I think the hormonal shift just made everything that much worse.  Isn't it weird how chemicals affect us ?  

All - Speaking of hormonal shifts, I was noticing on the other thread there was a discussion going on about libido and lack thereof on treatment.   I know this is a dicey topic, but this is one that has been really bugging me and I was too chicken to talk about (WARNING: rant alert!).   I know in the grand scheme of things there are more important things to worry about.   But, did they have to take THAT too ?!!   I mean, if they can come up with medicines to help the gents (God, I hate Viagra ads - especially when my 11 year old runs around the house singing "V-V-V Viagra") you think they could come up with SOMETHING for us ladies.   OK.. I guess there is a "functionality" aspect to deal with for the guys, but I think the emtional barrier for women can be just as "dysfunctional".    Maybe I am worrying about this too much.   But, would be interested in perspectives others might have if it's not too dicey to talk about.   (I figured if we could talk constipation, we could talk this). 

Have a good Sunday, everyone !

Jill

P.S. Debbie - Are you still out there ?

I dont know how to do private chats.  God Im sitting here ready to cry after reading all these stories.

HAAAAAAAAY Jill.....

  Yea the hormonal shifts........omg....it's liike it all died.......the hormone pill I was on first was Estrace, simply hormones, no nothing. The second was Estratest...had male testosterone in it......it's what gave me the urge so to speak........so if they have a hormone pill with that in it, that does make you want things.....why the heck can't they come up with a pill for us, minus the estrogen?  bahahahah this is so hard to talk about and keep it uhh, readable........And Jill do they give you more of the steroids then they do me now with the taxol? I believe I get the small bag and that's it......so far, I haven't noticed even being wired............

Kristi, yes drink a ton of water the day before and the day of and the days after.....it not only flushes that poison outta your body, it will help with constipation..........so please, I beg of you, drink till your ready to puke...........it can even be vitamin water or any of that other fancy water....me myself while I love Vitamin Water, I couldn't drink it after chemo, it made me sick, now back to it though and find I prefer it over coke!

Well am tired and wore out, had company today, my daughter, a good friend came over and brought a couple of wigs over, another friend came over and brought me some hats and jewelry she made for me, so been a long day.......this getting tired and wore out is lasting longer and longer......

Luv, hugs and prayers

Deb

Hey all !

Jessee and Deb - Thanks for indulging me in my rant. 

Deb - In regard to your steroid question - I take 20 mg of decadron orally 12 hours prior to chemo and then have to get up in the middle of the night to take 20 mg more 6 hours before chemo.  THEN, they give me 12 mg IV before starting up the chemo (used to be 20).   Evidently, Taxol can be one back actor in terms of allergic effects, which is why they load you up.   Keep in mind, however, I am taking about a three week course at one shot (i.e. massive dose of taxol).  So, it might not be the same for you.   BTW, you do sound so much better this time.  I am hoping you can avoid the emergency room this next time.

Jessee -  I hope I did not mislead you.   This last treatment (Dec. 22) is my last regular "chemo".  I also have 6 weeks of radiation coming up, starting in January, and then Herceptin (once every three weeks) for a year.   So, I won't be "done" until this time next year, which just depresses me further if I let it.    I read somewhere that Herceptin is technically considered "chemo" by definition.  However, the thought of taking "chemo" (as light as it might be) for a year bothers me. So... I prefer to think of it as a drug I just happen to get every three weeks - a little brain gymnastics. 

As for the libido thing - thanks for having the courage to speak out on this.  I really just needed some calibration.   This is going to sound a bit corny, but for me, what was bothering me was the potential for loss of intimacy.   That is important to me.    I will say that the (ahem), physical "plumbing" has been working just fine, even through treatment.   To Deb's point, I have been reading about some low dose testosterone approaches to "rev the engine" so to speak.  I am not on the hormone blockers yet and won't be until after radiation.   But, given the chemical imbalances that have happened in the chemo phase, I am certainly not looking forward to the side effects from those things.

Anyway... going to try to go to work today.   Feeling a bit better, but got this lingering fatigue and joint aches.   Will see how long I last.

Everyone have a great day !

Jill

I took Vit E during chemo, but was told not to take it during rads. I am back on it now, along with flaxseed meal and flaxseed oil for the hot flashes "My Private Summers". I have few during the day, but night time is the worse, it doesn't seem to help there. The most sleep I seem to get at one time is 2 hours.

On a funny note, before I go.......I seem to be addicted to this site, just sorry I didn't find it earlier. My fiancee just came in and said to ask you ladies if you knew of a surgical proceedure to have this chair removed from my arse!

Have a great day ladies, hope that brought a smile. Off to work before I get fired.....not.

God Bless Us All

Lori

Well, I just vented a whole page of stuff to you. Hit some key, and it's all gone. Maybe someone was trying to tell me I wrote too much

So- Hi everyone! Its so nice to see you all again. I'm still here Jill..thank-you for your concern. I'm so very impressed with your background. Thank-you for sharing!!! You are a very special woman in more ways than one. Even when you feel bad, you encourage others. You really are special, and I am so happy I have met you here, as I am with everyone. You all have so much to give, and i love it when you all vent, and talk about things you don't want to talk about to any one else. It makes this site even more special. So thank you all.

Hi to the newcomers! I'm very pleased to meet you   Have been in a funk lately. High points from my full page dialogue - am happy that I'm finally starting chemo, am scared that this has taken too long and it's microscopically spread everywhere. Happy to be able to read and talk to all of you since you are my only outlet, as others just don't understand. I'm totally optimistic to everyone in the family - and they are all so very happy about that. Inside I'm rather the opposite. How can I be one that has always maintained that living better chemically is the way to go. worried that I caused the ca by taking hormones to stop the infernal hot flashes that are so horrible! I believe I am personally responsible for global waming  And now I'm scared to death about all the stuff I'll be getting. Worried about the trial drug Avastin that I may be getting (70% chance of receiving it in the study). The new information about the venous thrombosis concerned me, not only because the percentages were so high but that the research nurse had no idea about the new findings. Three people had called her, and I had to send her the links to the study findings, because she couldn't find them. Incredible. Doc says the benefits of receiving the med still out weigh the risks. I know the risk increases, but they never said if the risk stops after you stop receiving the drug. Oh how I hate partial information!!

I did get the dog groomed...and found out that he doesn't mind a rototool for his nails. But try and clip his nails and he turns into devil dog. Go figure- we now have an original As Seen On TV rototool for dogs nails.

I put up a Christmas tree too...an 18" silver tree with mini decorations and everything. When we moved to Mo from Ca, my darling husband decided to have a garage sale while I was out of state. One of those "lets get rid of the junk so we don't have to pack it" things. And he sold my silver 6 foot 1950's silver tree. One of the few things I remember from my childhood was having one of those trees with the colorwheel. And he sold it. I wanted to beat him!! He said he would buy the little tree if I wouldn't bring up the garage sale. I agreed, but what he thinks is that i won't bring up the garage sale at all...ha, I never made that deal, he just made assumptions .  I still have plenty of ammo related to that sale and intend to bring it up when appropriate.

So, my life is in turmoil, wanting one thing and not wanting it at the same time. maybe I need a drug for that too. Christmas is coming, and will have no kids here, but will get up when they all get up, and have my son and daughter put the phone on speaker so I can hear all that is happening. Thats fun, because the little ones bring their presents to the phone to show me. Hoping my daughter has her computer fixed so she can use the camera and I can watch. But if not, hearing them is good.

On to wig shopping today. And since today is my post op 6 week day, I can finally rid myself of camisoles and fiberfill. YEA!!!!  

I hope you all have an awesome day, feel as normal as possible, and I do need to admit that I loved Deb's comment .

Thank-you Kristi for the hair info. Guess I'll start the New Year wearing hats. Seems appropriate somehow.

Debbie

Hey Kristi,

I just wanted to tell you I did hear about the proton beam cancer treatment, they interviewed Dr. Wm. Hanson on NPR and I didn't hear the whole thing, but it sounds pretty exciting. It's still in the experimental stage, hasn't been approved yet. I am going to listen to the whole interview on NPR.org.It should be available as a podcast. It was one day last week that I heard just the end of it.  I didn't even get the name of the book that he wrote. He did say that the most promising use for it would be for prostate cancer, since it does not destroy the surrounding tissues, for obvious reasons.But I don't see why it wouldn't be perfect for BC too.

Jessee 

Just got a call from my doc, pap had abnormal cells of unknown origin. promised me it was not pre-cancerous cells.  Seems to be my lot in life, cells of unknown origin. Need repeat pap in 6 months, but I cried just the same.

Kristi, your hot and cold symptoms seems exactly like what I have been having for months. Its like my internal thermostat is totally out of whack.

Your definition of yourself is not correct - you are a strong woman, going thru incredible trials, and beautiful. I'm sure your husband looks at you as the same beautiful woman he married, no matter what you think. Am sending many hugs to you. Hang in there, ok?

Debbie

Hi All,

I really Hope you all are Doing Good! A Wonderful Thing Happened today I wanted to share with you all and it brought Happy Tears.

When I went to get the mail there was a package from My husbands Aunt in Houston which really she is only about 15 years older than us. It was a Beautiful Pink Shawl called a Prayer Shawl Ministry. Covered in Prayers. It has the name of all of who Blessed it and the Aunt is the one who knitted it. Also has a Prayer along with it to say if you feel the need while wearing it. I will be wearing this Beautiful Shawl next week for my 2nd Chemo. I feel so Blessed. I think we all need a little Pick me up sometimes huh especially around the Holidays.

Sorry I just wanted to share.

Jerri