Chemo in May 2014

debiann

You look beautiful lespring! I didn't shave my head yet, but I went really short and I absolutely love it. I finally get a haircut I like, and its going to fall out!

debiann

You look beautiful lespring! I didn't shave my head yet, but I went really short and I absolutely love it. I finally get a haircut I like, and its going to fall out!

noonrider

Thanks debiann! I have to say, I am liking the wash-n-wear! I have such bad hair - extremely thin and straggly - that this just feels so much better! I might think differently when the stubble falls out and I'm left completely bald, but at least for the next couple of weeks, I'll be happy. ;-) Port placement is in the morning, then chemo starting Thursday. 

Missyjean

Girls I'm feeling the same way! My treatment was on 5/5 and I had been doing fairly well until today. I woke up thinking I must be under the wheels of a Mack truck. I made it to the hospital and my white count was really low and I was very dehydrated. They kept me for quite awhile rehydrating and drawing labs. I go back tomorrow for more fluids. I got things to do this week, I just want to feel better. I too was with you ladies, thinking I'm done, I can't keep feeling like this but we got to keep plugging along 

noonrider

Missyjean, I'm sorry to hear the truck hit you! I hope the fluids get you turned around. This is one of my fears. My blood pressure runs very low and on a good day I have trouble staying hydrated. Hang in there! 

debiann

Hydration does seem to be key. I keep water by my bedside and drink throughout the night. I even had to get up one night to eat a coconut water popsicle! They are very refreshing, btw, highly recommend.

nancybel

Hello everyone.  Sorry to be joining this group, but so thankful for it.  I received my first round of TC on May 12, and so far so good.  I haven't had any SE yet.  I've been staying as hydrated as much as possible and eating small snacks/meals a few times throughout.  Was told not to take my nausea meds unless I needed them, but have been taking them anyway because I don't want to NEED them. I've been using the Biotin mouthwash after every meal.  No metal mouth yet, luckily. Praying for no serious side effects.  I'm pretty sure I'll be cutting my mid-length hair short this week to avoid help alleviate the weight.  That's probably been the worst for me so far.  I'll keep you all updated on how the days go.  I wish everyone here the best.

debiann

My personal victory for the day? I drove the 50 minute commute to and from work, a drive I hate on my best days. While I was physically present, I was pretty much useless. My gratitude to compassionate co-workers who cover for you and an amazing husband who holds down the fort at home. Feeling much better now that I am home and on my couch.

Welcome Nancybel, interesting that they told you to hold off on the nausea meds. Zofran is added  right to my infusion. I'd be afraid to not take them too.

Missyjean

The fluids did make a big difference! I'm here again getting 2 more liters for good measure! I felt like I've been drinking but truth is I've been sleeping more than anything else for a week! I need an iv running while I sleep or something!! Neutropenia and severe dehydration =  a very bad day!!

Thanks for the support ladies!

noonrider

Got my port placed today. Ouch! The whole are feels so 'tight'. Like I was in an accident. Its really a good thing I got one. The nurses couldn't find a vein to start an IV, and the two tiny ones they did find they blew. They used those little light thingies to try tracing them and that wasn't much help. They finally had the doctor come down who used ultrasound and found a hidden one. A bit deep, but since he was using the US he didn't have to dig around to find it! So glad I had the port placed and I don't have to go through the fiasco of finding veins for every infusion. Chemo starts in two days. Feeling anxious. 

Lakegirl1

lespring...I got my port "installed" yesterday. I don't know about you, but I was not prepared for the literal pain in the neck.  I had the same issue with veins when I had PICC line and prior surgeries.   Are you having chemo Thursday or Friday ?  

amyo

Lake girl and Lespring - I too had my port placed today. The nurse had 3 tries before she got my IV in, they blamed it on dehydration since it was not til 2:00 and I had to fast after midnight. I'm grateful I won't have to deal with that issue. So far so good with pain but I'm only home about 3 hours.  I will begin chemo next week, the exact date was not given to me yet.

noonrider

I am *SORE* tonight. It doesn't help that "taking it easy" is not really in my vocabulary. I did come home and sleep for three hours, forcing my youngest to watch a movie on mom's bed during that time. But then it wad dinner an getting kids ready for bed. My husband helped too but there's just a lot to get done. Several times I forgot the no lifting thing. Even my laptop seems too heavy. I feel like I'm whining. Guess I am. In the end, I'm glad I got my port. Starting chemo Thursday (May 15)

jasonalun

Seems like an official "port placement" day -I got mine in today as well! Not bad at all as far as the hospital experience but the area under my collarbone aches more than I expected it to - actually broke down and took a pain killer. Hoping it will be better by Thursday when I get my chemo although strangely enough the port site itself doesn't hurt at all, just my collarbone area. Must be where they threaded the line through and must have poked around a lot in there to cause so much discomfort. But overall I can't complain. It was a big nothing-burger compared to what I feared when I first heard "you'll need a port" from my doc...

writinghelps

debiann, I hate hearing the "you're so brave" thing for exactly the same reason. So good to hear another person with the same thought.  I thought it was just me. I don't like the word survivor either, It's not like my plane went down and I survived the crash.

In other news I go to a "chemo class" tomorrow.  I'm supposed to have 1st round on the 20th. I say "supposed to" because it might get postponed because of some kidney pain I've been having upon awakening. I wouldn't mind the postponement.  I don't feel mentally ready or physically after bmx. And reading others experiences is really freaking me out.

I went to the pharmacy today to get my drugs. Ugh. Added Valtrex to the mix because I have a history of shingles and that is a side effect that I would rather put a stick in my eye than have during chemo ( which I hear is worse than the normal breakout).

I am not looking forward to all of these drugs.  I am a recovering drug addict and alcoholic (26 years) and have stayed away from most medications since getting sober.  Knowing how many drugs will be in my body is hard.  I know they're not all mind altering but it's more about putting something synthetic in my body.  I'm a little natural minded (although not super crunchy) when it comes to treating illness and this treatment is anything but. So I have lots of worries.

nanetteb

Hello everyone, I start AC on May 22nd so I am joining the group.  Port will be placed on Tuesday.  I am very nervous also.  I have tried on wigs twice and not having any luck.  It really helps reading all the comments and history of the ones that have already been through this and the ones that are starting soon with the same fears I think we all have.  You all are an inspiration and I too am tired of hearing "you are so brave" when I am screaming inside.  I don't understand all of the acronyms used here but I am sure I will get it soon. 

debiann

Welcome Nanette. There is a dictionary of abbreviations, I think it is on the homepage.

If we are not brave survivors what are we? What would be comforting to hear people say? "You are so unlucky" or even "You are so screwed" at least acknowledges the randomness and devestation of this dx. "Your so brave"says, "Your a better person than me so thats why you got it"

noonrider

This is my perspective of the terminology:

The "Brave" part bothers me. I'm not brave for fighting cancer. I have no choice! Some people call me a "brave" person steps into a situation no matter how scary it is and does it anyway. Strong? Yes, absolutely, I am strong. I am determined. I am taking this disease by the horns not because I like the thrill, but to keep them from impaling me. 

But am I a survivor? Not yet. Right now I'm a warrior. To me, "survivor" means you have come through a very difficult battle and lived to tell about it. A warrior is someone currently in the fight, which is exactly where I am at the moment. I'm battling breast cancer. 

linda505

I know what you mean about "brave" - but I have come to terms with being "brave"  Given a choice I would take the chicken way out and not get BC - as I am sure we all would - but I have become brave because I have to be to survive.  I am not afraid of needles, I am not afraid of surgery, I am not afraid of getting a port, I am not afraid of many things that I was very frightened of a few months ago.  Chemo still scares me - but soon that will be something I have done and not be afraid of anymore.   I think it does make us brave and strong and warriors - we are in a fight for our lives.  We have no choice.

MomMom

Hello Ladies,

I'm relatively new to the website and just started reading this thread today.  Hopefully I can offer some words of encouragement to you who are just beginning chemo.  I've completed 4 rounds of DD AC and will have my third of 12 weekly Taxol infusions tomorrow.   So far, I'm discovering that chemo isn't as bad as I thought it would be.  I have managed to exercise daily since I've been in treatment, and find I have more energy and a much better appetite on Taxol so far than I did on AC.  My MO said that the exercise, which I've done my entire adult life, would serve me well and I think it has.  I have not been nauseated, which is a real blessing.  I think that may be one of the worst fears - so good to know that not everyone gets nauseated.  This is thanks to the anti nausea meds in the IV before getting the AC(and after in pill form).  Even if you are not an exerciser, my MO recommends it for everyone on chemo.  The RX for fatigue is actually exercise:-), counterintuitive as it sounds. 

The week after my AC ended, I did get a few pesky SE's which delayed my starting the weekly Taxol by one week.  I lost a big toe nail and the other one may go too, but it's hanging on now.  I'm using the Elastogel frozen booties and gloves during the Taxol infusions to hopefully prevent more nail loss and lessen the chances of neuropathy (others use frozen peas or ice chips).  On the advice of others, I have my first ever acupuncture treatment scheduled Friday - also in an effort to lessen any neuropathy.  Had some mouth soreness issues (which the break and RX Magic Mouth Wash helped), some sensitive skin issues and the toe nail, but all this was manageable.

As others have said, it may be difficult to find what food appeals to you while on AC.  Just experiment and you'll find something that tastes good.  I couldn't wait to rinse my mouth out with my salt and baking soda rinse and brush my teeth after I ate, but that's better on Taxol.  Taking good care of your teeth is important and if you are just starting chemo, it would be a good idea to get a good dental cleaning before you start, since you can't get any dental work while on chemo.  As a daily flosser, I had to give it up shortly after starting chemo because it made my gums bleed. 

So far, so good on Taxol!  I'm amazed at how my appetite has improved and how much energy I have - at least at this beginning stage.  It's all doable.  Best of luck to you all!

MomMom

Another note - I'm with you ladies on the "brave" front.  While I appreciate the well meaning comments, I don't feel brave.  I'm just doing whatever I have to do to hopefully prevent it from recurring. 

debiann

Well lespring, I certainly feel like a warrior at the moment, but the battle is with chemo not cancer, heck, I didn't even notice the cancer was there, lol. I know this perspective is wrong, the chemo fights the cancer, but in bed all day with digestive tract issues that are too grusome to describe, chemo is the enemy today. Looking forward to the day I can look back and say I survived breast cancer AND chemo.

debiann

I just got a "chemo sucks" card from a friend. Leave it to hallmark to always know just what to say, lol

Kazzy115

I, too, find brave a difficult term to wear.  I like warrior a lot but not sure I feel strong enough to wage the war.  It's more just showing up and I'm not feeling the rage or fight. Infusion #2 is tomorrow and I am not looking forward to continuing the journey..  I had a good 2 weeks with minimal SEs but concern that cycle 2 won't be as easy.  Also, while I am trying cold cap therapy, this is the week we start to see how successful it will be.  I am full of dread for the physical manifestation that announces to the world I'm fighting cancer.  

debiann

I am using Nioxin shampoo & condtioner. While I'm sure its not going to keep it from falling out, it is really soothing as my scalp is starting ro burn.

Kazzy, good luck with round 2!

lesliecusana

Hey all, well I get my port put in early am tomorrow and then straight to round 2 of weekly taxol & herceptin! Was trying the no port thing but that sucked! I have been following the thread and getting much inspiration from you all! I maybe the only taxol&herceptin in the May group! 

Chev0814

Oh man I am starting to get anxious about chemo. Everything seems to be coming together. I have my port, got my MUGA scan, went and had my chemo education, met with my MO to verify my chemo regimen last, got fitted for a wig that I originally didn't think I would get (but why not have one just in case), I have lots of different head coverings... I still need to get my nausea meds filled and my lotion for my port to help it be numb when I get chemo... Everything seems to be coming together...I don't feel like I have cancer... Not now not before my partial mastectomy... The day of the big surgery I felt awesome... I will say I have been more tired then normal lately.... Not sure why... But 4 days and it will be treatment #1... May 19...TCH here I come... I am sure it will be like everything else... They tell you your going to do it and you do and you get thru it... We don't really have a choice... 

And on a side note I can't believe how many May people are in this group... Welcome All... As crappy as it is to have to be here I am glad this forum exists because reading your posts give me strength Hugs to all...

oddducklady

Hello to all of you in the May group (ladies and gentleman). I have been looking at posts since early March trying to learn as much as I can since then. My DH was diagnosed with Breast cancer mid-Feb (one of the rare men with this and it turned out to be Stage III c). Wish we could wake up from this nightmare but doesn't work like that. Every month I follow I am saddened as more and more names join in. Hang in there. Try to be flexible-we had a tx plan in the beginning that was TAC every 3 weeks for 18 weeks and focused on the end date (this tx was chosen as we travel out of state for tx). Turned out 7 days after tx #1 my husband's WBC's bottomed out and next 5 days spent in local hospital. Next appt with MO and he changed tx to AC for 6 more weeks followed by Taxol for 12 weeks. The change was hard to accept but the MO was right and it's been better. Just finished AC and start Taxol next week. I can recommend Neulasta inj in abdomen and using Claritan-I gave the first one in my DH's arm and didn't give him Claritan-he had lots of muscle and joint pain. He has had none on any txs since. He also had nausea for several days after the first tx- for tx #2 I started giving him ginger capsules starting 3 days before tx and for several days after-he hasn't needed anything for nausea the last 3 txs. May work for some of you if you want to try. I bought Biotene-he hated the taste and how his mouth felt afterward. I bought the smallest bottles of H20 I could find (10 oz) and poured a little out and put about 1/2 tsp of salt in-mixed it up every morning and that worked better. I also bought Vit E oil (you can also open a Vit E cap but this was much easier) and using that on a Q-tip several times a day healed up the one mouth sore he had pronto. Don't even get me started on the stupid drain-my husband had his almost 8 freaking weeks (surgeon said he set a record-crap on that). Wish I had any words of wisdom for the emotional rollercoaster ride and insomnia due to steroids. We just ride it out. When he tries to quietly get up before 3 AM (like this morning), well, the cat and I are right behind him. You do whatever you need to do to get through this!

BooBearMay2014

Just joined, this is all new, so let me just say I'll be starting my Chemo Regimen on 22 May. My port will be placed this Friday, Chemo Training next Tuesday followed by first session on Thursday. Coming here to learn and find others to join with for this journey. I plan on kicking its ass.

noonrider

Yes, I agree Debiann! I have a good friend who keeps asking, "How are you feeling?" Ummm I feel fine. Because I haven't started chemo yet, I feel the same as I did before I was diagnosed. (well, minus the itching of my port today which is going to drive me INSANE!) Then yesterday she finally said, "No, how are you *really* doing." Umm I'm not sure how to answer that. I feel like "F*** this! Why do **I** have cancer?" and I feel like that every single day. There are very few moments in my day where "cancer" is not echoing in the back of my mind. But I could pretend for awhile. For awhile my life was normal even with cancer. But now this stupid port tells me every time I move that I have cancer, (it is still SO sore today. Should it be this sore?) and tomorrow when I start chemo there were be more reminders. I don't feel anything other than shock.