TCHP Ladies Late 2014 / Early 2015

CassieCat

Amy, I'm right about where you are, though I only have 5 rads left (woo hoo!). Physically I feel pretty good most days as well, though I'm finding my GI tract still isn't 100%. I went to the dentist today and have one filling to get and one crown to replace. My dentist said it isn't unusual to see some decay after chemo, but that all in all I fared well. I was due for my 6-month checkup in January but needed to wait until blood counts were back to normal and I had gotten through surgery and all.

Lorie, I think generally everyone getting radiation for breast cancer goes every weekday. The number of weeks seems to vary.

DaisyQ

Hi,

Lorie: Yes. Radiation every day (M-F) for 28 treatments. I will be done on April 20. I am doing rads based on my staging at the time of diagnosis. I thought I might not have radiation since I had a complete response to TCHP, but not so. I am okay with aggressively treating this to reduce the risk of recurrence. So far, so good! And I hope you are feeling okay.

Cassie: We are on a very similar schedule. I started TCHP in early September and have attached myself to the August 2014 Chemo discussion since you are all so active with updates. It has been helpful to read your experiences both physically and emotionally. I don't feel so scared and alone.

Keep it up TCHP ladies!

Amy

CassieCat

Amy, that August group is an awesome group of ladies. I'm glad you felt like you could join in.

IndyGal35

Thank you so much for the info on radiation.  I have heard a lot of mixed reviews about chemo vs. radiation regarding which one is tougher.  The more experiences that I can read, the better it makes me feel as well.

I am almost 3 weeks PFC.  I go back for round 2/6 on Tuesday (3/31).  I hear that chemo is cumulative, so I am a bit worried about round 2.  Did any of you feel significantly worse as your doses went along?  Also, I can't seem to keep my fevers at bay.  They're not enough to send me to the ER (<100.4), but they sure do wipe me out!  At least I can tell that my body is trying hard to compensate for the low WBC's.  Is that something that is to be expected until chemo ends?

MaryJC

hi ladies, so that sluggish gi track is really a Herceptin se and not the chemo? Ugh if true, that's discouraging knowing I have a year of it after chemo.

I have CHT #3 this Wednesday. Wishing everyone well through this. I hate it, I swear!

CassieCat

IndyGal, for me, chemo was tougher than rads by far. I found that as my 6 chemo cycles went by, I got more tired toward the end but was also getting better at managing some of the SEs, and I had less anxiety. Big C and Big D got worse toward the end, but they weren't much of a problem at all for the first 3-4 cycles. I think it really does depend on the person. I walked as much as I could throughout, even if it was just to the end of my street and back. I think that helps keep the fatigue at bay and also helps tell your body that it is time to heal! I liken it to how they want you up and moving as soon as possible after many surgeries. Radiation has been tiring, mentally and a little bit physically. Going 5 days a week for 7 weeks is wearing on me. When my skin started to look really bad, my RO had a plan to help with that. So It has been tolerable and for me, easier than chemo. I had some low grade fevers during chemo as well, but never high enough to have to call the doctor or go to the ER.

My MO doesn't seem to think my GI issues (mild diarrhea) are from Herceptin. I'm over three months out from finishing chemo, so perhaps my system is still recovering overall. Hard to say.

Good luck to you both as you head back in for your next infusions this week. We'll be rooting for you.

IndyGal35

Chemo #2 is done! Hooray! I'm 1/3 of the way through it!

My infusions yesterday lasted about 5.5 hours. (It was 7.5 last time!) Now that my Perjeta/Herceptin doses have decreased and their infusion rates have increased, it's really cut a lot out of my chair time. My onco has agreed to bring me in for fluids this Friday and next Wednesday, so I really hope that helps.

It took about 3 days after round one for the SE to kick in, but I already feel like the chemo bus is running me over this time. I'm exhausted, and it's being worsened by diarrhea today. I'm pounding fluids the best I can, but my appetite just left the building, and I'm just stuck in the fatigue and chemo fog right now.

I'm fortunate enough to be able to work from home since I'm in IT. Even then, it's tough. I have to throw some serious respect out there for you ladies that have to get up, commute to an office, and put your game face on every day.

I'm really praying that this stays manageable and that the fever/aches/chills stay gone this time. Hoping for a better day tomorrow!

wpmoon

Hi ladies! Just thought I'd stop in to introduce myself. I'm 27, and diagnosed 12/1 with IDC, stage 1, grade 3, triple positive. I had a lumpectomy and lymph node dissection on 12/15. I started my TCHP chemo on 3/2. I have infusion #3 on April 13 - I can't wait to reach that halfway point!

I'll catch up on everyone else's posts when I have a little more time on my hands.

IndyGal35

Welcome, wpmoon!

I think I've seen you on another message board too. I started TCHP on 3/10, so you are about a week ahead of me. I got my second round on Tuesday this week. The SE have kicked in a little bit faster this time, but I am hanging in there.

4/21 will mark the end of my first half of chemo treatments. We can count the days together!

CassieCat

Welcome, wpmoon. TCHP worked very, very well for me, and I hope it does for you as well!

IndyGal, congrats on making it to the 1/3 mark. Pretty soon it'll be halfway done! Keep at it.

loriekg

IndyGal35—I finished round 4/6 last week. The difference I noticed between my first and second chemo, was it seemed that certain SE's showed up quicker. I believe the weird taste took a few days to show up after first round…but the food I picked up to take home after round 2 already tasted off! I did not notice any cumulative effects until recently. Now I am noticing fatigue where I really hadn't before. Going upstairs is noticeably different. I got on the treadmill yesterday and was very surprised how quickly I was ready to stop.

CassieCat

How's everyone doing? Just checking in!

SugarCakes

Hot / cold sweats (hot flashes?) irritating the heck out of me

IndyGal35

I'm in the middle of week 2, so I should be getting better every day now. I fought awful nausea this week, but the prednisone I am now taking for a rash really helped knock out the pukey feeling. Now, I just feel like I'm getting over a bad cold.

Sweets, I had horrible hot/cold flashes and fever spikes last round. It just wiped out my body so much. Hope you can find some middle ground there and start bouncing back!!!

SugarCakes

I had 4 of 6 this past Monday. I will have #5 in four weeks. I pushed it back a week to allow me to attend kickoff meetings in Portland, OR for a project team I am on at work. Pushing things back one week will also allow me to have a good memorial day weekend and attend a family reunion in Charleston, SC. MO said pushing things back a week won't hurt anything. Seemed like a good idea at the time, but now I'm somewhat dreading traveling two weeks straight. It's a long to time to be away from my son, though that usually happens once or twice per year.

CassieCat

I pushed my last infusion back by 4 days, so that I could attend my daughter's Nutcracker performances, and I'm glad I did!

I had night sweats off and on throughout chemo, but they have subsided for now. I get mild hot flashes at night, but no sweating. My eyes were just watering and it made me remember how much they watered from Taxotere! That stopped too.

Mardea15

I had chemo #4 last Tues. Seems like #3 & 4 really hit me hard. A week after #3 I ended up in the hospital for 2 days, & #4 made me feel as though I'd been hit with a ton of bricks!. Fatigue was very intense, could barely walk around for several days. I was also highly emotional & crying over any little thing, not like myself at all. Now I'm worried about #5 & 6 as these last 2 have been progressivel worse for me. Haven't even had the energy to write anything on these discussion forums.

However I'm starting to feel better tonight so hopefully tomorrow will be a better day. Hope all of you are doing better with minimal SEs.

CassieCat

Mardea, I hope #5 and 6 aren't worse for you. I felt like they were, in some ways, easier on me. I will wish the same for you!!!

Mardea15

---

Thank you, CassieCat. I hope all continues to go well for you as well!

Even though I've had a difficult time with last 2 chemo cycles, I'm so thankful this chemo is working. My MO couldn't find any signs of the tumor on my last visit with her. Now I just have to get through 2 more. I've been able to control & handle all side effects except for the new ones so will just continue to ride it through a day at a time with the fatigue & emotional roller coaster. Anyone else having similar issues?

MaryJC

Cassie Cat: are you doing anything in particular that's making you not feel worse with each round like downing extra water, etc?

Mardrea: I don't have what you're experiencing but I too am feeling worse each round and have 3 more to go. My 4th is next week on the 22nd. I'm so concerned about SE's. I booked a trip after my last chemo on 6/3 but thought to push it from 14th to 22nd bec who knows how #6 will treat m

IndyGal35

I had horrible shakes/fevers/chills and a rash during chemo #1. They brought me in for fluids on day 8, and it gave me a boost.

For chemo #2, i had unrelenting nausea for several days. They brought me in twice for fluids this time (on day 3 and day 8), and I started a steroid for the new rash on day 7. The steroid stopped the nausea and rash immediately, and I am bouncing back much faster. Fluids on day 3 really helped!

Since I know I get a rash and that day 3-10 tend to be the worst, I'm going to see if I can get fluids on day 3, 7, and 10 this time. Also, I'm going to see if I can get an extra Aloxi for nausea in day 3. I'll just take the prednisone on day 5 this time since the rash seems to hit then. That should knock out the nausea too.

Everyone's chemo treats them differently, but maybe you can ask for extra fluids to get you through. The SE on my first two were absolutely miserable, but I'm hoping this may be my recipe for an easier #3 on 4/21.

CassieCat

MaryJC, I think it was a combination of things. Headaches/migraines were terrible for me in the early rounds. I always got Aloxi in my IV and then would take Zofran as needed. Both had headache as a SE. I switch from Z to compazine and that helped. The bone pain from Neulasta just eased up in later rounds, despite my not doing anything differently. Maybe my marrow got used to it? And my anxiety around everything got better, too. Oh, my MO also had me taper off of the oral steroids more slowly so that I didn't have the big emotional crash, which was really hard to take during rounds 1 and 2. The things that got worse for me were big C and big D. I tried staying hydrated throughout and did a pretty good job. The one time I got dehydrated was after a particularly bad migraine, so while I thought I was taking in fluids all day, it hadn't been enough. A bag of saline helped a ton the next day.

mousehouse

Hi everyone, I just started reading this thread today--late to the party as I just finished my final round of TCHP last Tuesday, April 7. Feeling generally lousy but am so relieved that this is the last time I'll go through this.

Wondering if anyone else is working full-time through their treatments? I'm a high school teacher and have tried to be at school as much as possible (though I am home today ). It's been surreal bridging the worlds of chemo and breast reconstruction along with work, kids, friends, partner, etc.

Sending healing good vibes to you all.

IndyGal35

Thanks for the post, mousehouse. I always get so excited when someone is able to "ring out" after chemo. It reminds me that this part will eventually end! My last chemo, as long as there aren't any delays, will be 6/23. Then, I will get a few weeks of rest before the dmx. Are you going to have rads and/or the year or herceptin? You'll have to keep me updated as you venture through reconstruction and your next phase of treatment. I'm still struggling with the reconstruction options and trying to decide if I want to go ahead and delay a year. For me, it's making more and more sense to wait, but it's such a very difficult decision.

I'm still working full-time. Luckily, I do IT work, so I am able to work from home. I've had to put work travel on hold until I can feel better about flying. Even then, the days can be very long and difficult - especially the 7-10 days after chemo. I'm trying to save as much of my FMLA as possible since this is a long road, but it's a fine balance. I must admire anyone that has to go into an actual office or work setting and try to grin through the chemo misery - especially when you have face time with teenagers all day! You're a rock star. I hope that your students are taking good care of you and being extra good while you are rounding out treatment.

SugarCakes

ladies, I get so confused with the sentinel lymph node removal vs. axilla lymph node removal. (Looking ahead). Back when reviewing my biopsy results and laying out my likely plan off treafment over the year, the BS scratched out sentinel node dissection and left on axilla node dissection. What confuses me is this... If in the axilla nodes, isn't it also in the sentinel node(s)? Does acilla node removal include sentinel node removal? If no cancer is found in axilla nodes (after neoadj and surgery) how does one know it's not in the sentinel node? I had one axilla node biopsied positive at the initial diagnosis. On ultrasound, 4 nodes appeared reactive (enlarged). I am trying to better understand how and why a certain approach. Can anyone help clear some things up

IndyGal35

I'm struggling with the exact same worries right now. My MRI showed no lymph node involvement, but the PET showed "some" lymph nodes that fired at a 3. My ultrasound revealed one lymph node that had a little "bump" on it, but the radiologist told me that it was inconclusive since I was still recovering from a really traumatic biopsy on that side.

I too worry about only getting a SLNB performed. If my neoadjuvant therapy has knocked out cancer in the SLN, how can we be 100% sure that there are no other cancer cells in other lymph nodes - especially since the MRI and PET conflict? I don't want LE, but I plan to strongly push for a full dissection/removal on the right. For me, the risk of LE would be well worth the peace of mind to know that there are no lymph nodes left in my arm that could harbor a single cancerous cell that could send me into stage 4 later.

I'm glad I'm not the only one that feels confused and worried. I see the BS in early May since I will be at my half-way point with chemo. I will be sure to let you know how the discussion goes and what she says!

SugarCakes

IndyGal, I have read that radiation of the lymph nodes has the same recurrence / non-recurrence rates ALND. I would rather have the radiation vs. the ALND. The idea of lymphedema scares the heck out off me. I'm not sure when I will meet the BS, but apparently not until my last infusion which will be after memorial day. That's what my MO said. I'm tempted to call the BS sooner. I'm choosing to believe that I'm ony way to a pcr. I read some of the surgery boards but haven't run across details about lymph node removal decisions.

DaisyQ

Hi,

For me, since the cancer had barely started to spread to the sentinel node (I had a biopsy the day before I started chemo), it probably didn't make it anywhere else. Based on the size of the tumor and the sentinel node status at diagnosis, my BS did not recommend axillary node dissection because of potential lifelong complications from lymphedema. She did check out other nodes during BMX. Everything looked and felt normal (plus she could not find the original tumor in the breast tissue so she suspected a good response to chemo). If she did see anything that concerned her during surgery, she would have removed more nodes.

I am in my final days of radiation to take care of the small chance that a cancer may have spread locally. Finishing a year of Herceptin gives me reassurance too. After that, it's diet, stress reduction, excercise. Good, clean living!

You have to do what makes sense and feels like the right thing for you. Gather information, ask questions, listen to your doc, and make the best decision you can.

I will say that mid-chemo were my darkest days, filled with almost constant worry. That's the time I started therapy through my cancer center. It has been very helpful. Things started to get better as I completed chemo and looked towards the future. Cancer diagnosis and treatment is so, so tough. We are all strong and amazing women!

Amy

IndyGal35

I hadn't heard about the negligible recurrence rates for ALND vs radiation, Sugar. That gives me great information to take to the BS next month!

Amy, everyone told me that chemo would be manageable but tough. It is so true. It sucks, but I am just charging forward one day at a time. I have round 3 of 6 next Tuesday, and I am so glad to be close to the halfway point. I will be undergoing radiation after my bmx, and I haven't decided whether or not I want immediate reconstruction yet. I know that everyone handles chemo/rads differently, but how has your experience been with radiation? Is the fatigue more prominent? I'm also curious if the radiation has affected your reconstruction options. Inquiring minds.

SugarCakes

IndyGal, I started a Lymph Node Removal Decisions posts under the Surgery - before, during, and after category.