January 2013 chemo group

Keke713 - I haven't had AC so I can't help you much there.  I'm a triple positive and my regimen is Taxotere, Carboplatin and Herceptin. 

I saw your post earlier today on the tissue expander thread and just want to echo what SpecialK said to you on that thread:  I am so very sorry you're having to go through this at your young age.  I've been thinking about you this evening since reading your exchange on that thread. 

Several women on this thread have had AC and will be able to fill you in better on that regimen. 

Here's something I can pass along - 

A friend of mine - also triple positive - was diagnosed back in 2006.  She had a large tumor - 10 cm - and they started her out with AC followed by Taxol (I think) and then Herceptin.  She has told me that the AC regimen was actually easier for her than the TCH regimen that she ended up having to do when she had a recurrence last year.  So, that's one "good" AC story I have to share.  Also, Shannon on this thread (smethot is her username) seems to be faring well with AC as well. 

The good news is this:  the anti-nausea drugs do a good job of keeping that part of it at bay however, there are other annoying side effects, i.e. taste bud issue, eye twitches, muscle aches, fatigue - and that big, big physical change of losing your hair.  That was a hard one for me and many others here.  Some in our group have had success with the Cold Caps - you might want to check out the cold cap threads. 

There's a Facebook page for the women who started chemo in January but it is not exclusive to January starters and you might enjoy getting involved in that as well.  You can send a message to Skigirl (Debbie Inzana) for more information.  

I've just finished four of six treatments and although it isn't easy - it is doable and there are always people around who are willing to pass along advice and support. 

Wishing you all the best as you get started.  You are exactly half my age and it just kills me to see you having to go through this - but you will make it through.  You are young and strong and determined!  

I realize that I cannot let my friend's status affect my attitude because I know that negativity affects outcomes.  I was really down yesterday, and I am trying to pull myself up because I know I have to concentrate on me first.  It still seems selfish, but it's also not good to be down.  SO, today, I am promising myself that I will try living with GRACE. 

I was thrilled last week when I was able to go back into the office, and I need to embrace each day as a new one.

Thank you all. 

Kathy, thought I'd chime in to let you know that I also had ILC - not that many of us on here. I was diagnosed in September, bmx in October with TE. Started chemo (TCH) in December. My last TCH is this coming Friday, then continue Herceptin through November.



Any questions, happy to try to answer them, although my regimen has been different from yours.



Martha

Keke713- I am a week out from AC#4 and I feel ok. LeeA is correct. The anti nausea meds do a good job of keeping things under control. The annoying SEs are just that- annoying. The anticipation is awful and you will do fine. I was a total mess worrying if I was going to be sleeping on the bathroom floor. Turns out it's been ok. Just take the meds like they say, call your nurses with ANY questions and you will be ok. So, drink lots of water (I drink 3 liters a day), sleep, take the meds. Get something to help you sleep. I was given Ativan. Also, add a colace to your pills. You want to stay ahead of the constipation. The drugs will stop you up if you dont. My biggest issue was loosing my hair. That totally sucked. I am used to it now and I wear a wig to work. I am in a ski cap or nothing all other times. It's going to start falling out about 2 weeks after your first tx. I had really long hair and I had a pixie cut the week of my first tx. About 2 weeks after my first tx I had my DH buzz my head. I wanted to take control of my hair loss. I am not a shy person, so after the buzz I posted the pics on facebook... lol. Feel free to join our craziness. Just send me a friend request if you want.

Day 6 after #4 AC and I feel ok. I am tired but I am assuming that is from working till midnight then stopping for an adult beverage. Taste buds are almost back and so far no effing headaches like last round. Keeping up with the water and my vitamins.

My left top lashes are half gone. I feel like I'm using a paint brush to put on eyeliner to compensate for the lack of lashes. DH says I look fine. He is a smart man .

Wishing everyone minimal SEs.....

Skigirl: congrats on being done with AC#4! Let us know how your first Taxol goes!

Keke: AC is hard and SE's are different for everyone. My first round was the worse and then it got a little better each time. The Nuelasta shot really did me in. I do take pain meds the day after that shot, as that is my worse day. I have little nausea but will take Zofran or compazine when I feel a twinge. I have not even felt close to getting sick. I lost my hair about day 14. So far I still have eye lashes and brows but many on here say those fall out by #4 or a bit after.  I have tx on Wednesday and Friday, Saturday and Sunday I am basically a lump or close to it. By Monday I am a bit better and Tuesday a bit more. By Wednesday I feel good. I continue to workout at the gym, lifting and doing cardio, workout with my personal trainer and do spin class through the week until the next tx. I also am back to work part time but very part time. I take sentacot-c for constipation and I did get thrush in my mouth after #3, which have RX meds for. That kinda sucked because my taste buds were pretty shot and the thrush just made it worse.

Everyone is different but I promise you, you will make it! I am sorry this is happening to you, especially at 27 but you will be fine. It's not fun and there are bad days, but those are followed by pretty good days. Eat those good days up and do what you can. Then the bad days will come and you will get through. Then good days again. I'm assuming you are doing AC x4 and Taxol x4. There is a TAxol thread as well. Keep us posted!

LeeA: do they want to do anything about your hemoglobin yet? I have been as low as 7.9!and back up tom8.3 as of last week. A few weeks ago my onc was going to start me on Aranesp to help build my RBC. We did not discuss a lot about it, then the next morning the office called and I needed to sign a waiver because it is a highly controlled drug with side effects including heart problems and stroke. I was very upset about this. To this point I have not done anything about my hemo. I am considering blood transfusion. I get fatigued and a bit short of breath once in a while. I just rest more those days. Still up in the air with that problem. It shouldn't have to be this difficult.



Skigirl72: I hear you about the dark path. I see that too. Try to avoid it, but sometimes things just suck and you can't shake the thoughts. I have 6 kids from 3 months to 13.. I cannot go anywhere. I'd take all the craziness we have here and never complain again if I can have a good life to live. One day at a time right now.



Eye twitching: I had one round of Taxotere (dc) and 4 rounds of carboplatin. I have twitching in my left eye a bit. Heard it was a side effect. So could be so from several of the chemo drugs.



I have two more rounds. I have so much going on in April though and I don't want to be down! I just want to be done with chemo. Will still have Herceptin and pertuzamab for the rest of the year.

Hey ladies!  Here checking in from my lazy-ass weekend and gotta tell you...before i accept congrats on my hour on the treadmill, let me tell you that its the only freaking exercise i did all week....or all weeknd.  Oh, yeah.  Lazy cow.  I SO have to get my shit together and start moving on a more regular basis...come on spring.  Its fricking cold here and we're getting freezing rain/snow/freezing rain in the next 24 hrs...not making me want to walk outside AT ALL!!!  This is my excuse...i'll start to exercise when it gets warmer.  really...i will. 

Keke, i'm on dose dense AC-T and AC #4 is this thursday...that puts me 100% done AC, 50% done chemo and only 59 days to go until chemo is done!  And i've had a pretty easy go of things (knock on wood!!!).  Your imagination is worse than the reality, by far...you're thinking its going to be more difficult than it actually is...trust us.  Chemo isn't like it was in the "old days"...its manageable and the drugs are great.  I'm telling people this ALL THE TIME.  If i wasn't bald, i really wouldn't know i was doing chemo.  I have no issues with food or drink, my tastebuds are good, i sleep (i am a very good sleeper) and i work full time.  I have minor issues with acid reflux but nothing my pepcid can't handle.  I think a lot of this is ATTITUDE- you can choose to feel bad and sorry or you can choose to kick ass and chew bubblegum...and i am ALL about kicking ass.  Our motto here is DEATH TO CELLULAR INSURGENTS...we're here to make sure any little f***ers that may be skulking about are ERADICATED.  We're here to wage chemical and radioligical warefare- and make no mistake- this is a war.  And we are here to WIN.

Fight the good fight ladies...xoxox  Shannon

Keke: smethot is right. I have to say my AC hasn't been horrible, other than round 1. As I said, for me, it's the Nuelasta shot. But I got pain meds to help manage it and that helped. I have AC#4 Wednesday and will be 100% done with AC!!! Then 4 Taxol as well. Hoping Taxol is easier for me as it seems to be for most on the same tx plan and schedule. I am back to work part time, working out on my good days (did spin yesterday, worked out with my personal trainer today and will do 3.2 miles of walking jogging on the treadmill tomorrow.)

This is very doable. Yes some experience more SE's than others and smethot is certainly one of the more fortunate ones, but you will be fine. Stay here with us, you will get through!

ywheels- I am getting rads after taxol and axillary nodes surgery. They found one of the sentinel nodes positive so out they come. I never questioned the rads but do need to meet with the RO and discuss all the benefits/drawbacks...

Keke713- If you are on dose dense AC (every 2 weeks) you will likely get the shot the day after tx.

http://breastcancer.about.com/od/treatments/p/neulasta.htm

I was every three weeks, so no shot for me. I asked my MO about it and she told me they like to do AC every three weeks to give your body a chance to recover from the previous tx on its own. I was ok with that knowing so many of the ladies had pain associated with neulesta. There are remedies that they have come up with to lessen the pain and make it manageable. I would see who chimes in with that info.

I also had clear margins and no lymph node involvement but am a triple positive so am getting 6 TCH chemo treatments, one every three weeks, herceptin for a year, Tamoxifen for 5-10 years and 30 radiation treatments, 5 days a week for 6 weeks.  They said because of my age they were treating aggressively.  I said, cool. 

I get the Herceptin shot the day after treatment.  My insurance covered it an my sister in law in a Medical Assistant so she gives it to me since I live almost an hour from the hospital.  Didn't make any sense to drive almost two hours for a two minute shot.  I get the shot on Friday and it kicks in on Sunday for me.  Causes bone and joint pain, normally for me it's my knees, neck, shins, hips and fingers for the most part.  I try to stick with Advil, but normally end up taking a pain pill by Sunday night.  I feel like I'm 90 and have trouble getting in and out of the chair and walking across the room without it.  This last treatment on Sunday I ran a low grade fever but it never got over 99.4 so the MO wasn't worried about it. 

#4 is next Thursday and I'm hoping everything stays the same.  With everyone saying #4 is more difficult, makes me a little nervous, but it is what it is and I will just deal with whatever comes my way.  Here's hoping though!!!! 

Hoping everyone is doing good this week and SE's are minimal.  So happy for everyone that has reached a milestone and are either done or moving on to the next phase. 

Made my reservations today for a trip in April to Pigeon Forge, TN.  I can hardly wait.  Then about 10 minutes after I make my reservations I hear that there is a wild fire there.  WTF, seriously?  It appears the fires are up the mountain and not really in town though so hoping the town will be safe.  I guess it got 30 or better cabins and a bunch of residential homes but everyone was evacuated and ok.  Still looking forward to it even if we have to sleep in a dang tent.  Don't care at this point.  The worst part is the day after I get home I have a treatment, but I'm not going to let that get to me, I'm going to have a blast.....period!!!!

Keke why can't you shower? Did your surgeon tell you not to? When was your surgery? The incision sites get irritated sometimes. I had more problems with the drainage sites then the bmx. My bmx was in October and I still get a little sore sometimes.

Yeah PS said cant shower with Drains in...so yeah I've been sponge bathing in the tub for the last 2 1/2 weeks..ugh! But I actually just thought of something too..I had my echo u.trasound today that was ordered by my onco for chemo...and she worked onn

That side with the jell and wand...I was covered in jell that I had to wipe off afterward....soo maybe that just irritated the incision site...only thing I can think of that's been different than any other day...idk I gues Ill just keep an eye on it and see what he says about all these concerns I have on Wednesday...lol I'm going to have a book of questions for this poor guy!