January 2016 Chemo!

fightergirl711

Good morning! I know many of you have already gone through the AC - I had my first infusion last Thursday, and although that burning feeling in my sinuses, eyes and chest is now manageable (I thought I was burning from the inside out this weekend), I'm noticing extreme bloating since yesterday. This is beyond constipation, which I'm feeling a bit, but my stomach is completely distended. Has anyone else gotten that crazy bloating? Eating and drinking is ok.

kellychameleon

Good luck with your surgery, Paulinek!

I had my 3rd (of 4) Taxol treatment yesterday and had a nurse I'd never seen before. I usually have my treatments on Tuesdays, but had to do Monday this time. Anyway, her mood was really short, and she kept complaining about how tired she was and being overworked. I wasn't paying attention to the bag or the time on the monitor, and when it started beeping that it was complete, I realized that it had only been two hours instead of three. I asked the nurse why (we had talked about the fact that we were doing three hours this time instead of 3.5 because I hadn't had any prior reactions), but two? She accidentally had put in the time wrong, and since she never really came and checked on me, she never noticed. Last treatment the nurse was so attentive and took my blood pressure several time and checked on me. This was so weird. Thank god everything seems okay, and it didn't seem to affect me negatively, but what the hell, lady? I'm going to call my doctor today to discuss it with her.

Anyway, after this, only one more. Woohoo! There hasn't been a trace of the tumor since after my 3rd AC treatment, and we're still good there. My MO said that if I'm getting neuropathy symptoms and assuming everything still feels good, she will lesson the dose of the last treatment to try and avoid lasting side effects.

I'm just so excited to close this chapter and move onto the next. I'm already getting pretty nervous about surgery, which is still 2 months away. Then after that radiation, then reconstruction. I'm hoping by this time next year, I can be settling back into a relatively normal life.

Valstim52

fightergirl

I finished 4 dose dense AC in February. I had the bloating sometimes. But once my bowels moved good, it went away. Did mention it to my mo. I also had a lot of gas. She told me to stay ahead of the constipation, I took senokot and it relieved all of it. Then later infusions I had very loose stools so had to do the imodium.

LoveMyVizsla

Wow, Kelli, I would definitely talk to your MO about her. But, my first taxol infusion is supposed to be three hours and the other 11 are only supposed to be an hour.

kellychameleon

I just left a voice mail for my doctor, so we'll see what she says. I'm on dose dense taxol (only four treatments), and it was my understanding that 3 hours was the minimum. I could be wrong though.

MissBee123

fightergirl, I'm so sorry to hear about that much bloating! I keep a bottle of stool softeners on my nightstand and take one every night before bed. It's really helped to keep things as normal as possible. Are you taking something daily to help things move? I know a lot of people recommend daily Miralax, too. I found laxatives to be too much, but stool softeners seem to be just about right.

Kelly, YIKES!!! In both hospitals I've been in they do a double nurse check: one nurse reads aloud my wristband and the paper orders, the other nurse listens to confirm and then reads aloud the prescription on the infusion bag, including the time. There shouldn't be that kind of mistake with double checking. I'm so glad you're okay but that is a rather serious error. Definitely talk to your doctor.

I had a job interview today. I have been struggling with whether or not to discuss my diagnosis, since ethically I don't feel right about concealing it but legally know I don't have to. In the end I did the interview but didn't wear a wig so I figure they can draw their own conclusions...seemed like my own little gray area. If there is a formal job offer I will discuss it with them at that point, but only if I think I'll need accommodations. The interview went well so we shall see. Cross your fingers for me!

kellychameleon

Oh yeah, MissBee, that's a hard call, but good luck! Job searching is so stressful in "normal" circumstances. Fingers crossed for you.

I put a call in to my MO's office but haven't heard back yet. Every other treatment I've had, the nurses have continuously checked in on me and checked the monitor, but this one just couldn't be bothered to do anything. It was really strange.

fightergirl711

Great to hear about your interview MissBee! I think keeping the diagnosis out of the process is smart.

I've been taking Miralax each night, and Colace. There has been "movement" but the bloating has been bad, I could barely sleep last night. Hopefully this will pass soon

buttaflydiva

i went to my surgeon to see about my flipped port. unfortunately when flipped to correct side, it will flip back upside down again. so going in for another surgery Tuesday to replace it. which means my chemo will have to be given in my arm again this week. ive always had a feeling something wasn't right with this port because it has always moved around too much, but my concerns have always been dismissed.

SUE1966

Hello Ladies! I have been a member of this group for a few months, but this is my first post. I get so much encouragement from reading about others going through what I am.

I have finished my AC Chemo and I have had 7 Taxols. After week 2 of taxol I got a rash on the back of one hand that stumped the doctor. A couple of weeks later it started on my left hand and now is on the back of my knees and wrists. Doctor is still puzzled, but he called me in a cream. He did prescribe a 6 day steroid pack, but then advised me not to take it because he believes I have a stomach ulcer.

Has anybody else experienced this and what worked for you?

Smurfette26

Good luck with the job MissBee. My hubby had a job interview back in January. It was for a position he was well qualified and experienced for in our nearest big town which is 2 and a 1/2 hours drive from where we currently live. It's where I have to travel for treatment and to see my specialists. One of the questions he was asked was why he had applied for the position and he answered honestly. Maybe too honestly. He told them I had been fighting breast cancer and a move closer to my medical team was one of the motivating factors. It was also a small promotion, the cost of living is lower in the larger town and our son and his family live there. All points he raised but the interviewers seemed stuck on the idea that he would be taking time off due to my health. Needless to say he was unsuccessful.

My treatment was always double checked by two nurses before being administered. Don't know how many times I had to repeat my full name and date of birth but glad they were thorough.

I'm taking a stool softener each day and will have to continue with that. Dr said not to take laxatives long term as they affect the bowels ability to work and constrict over time.

Nice to "meet" you Sue. I had a different chemo regime so can offer nothing RE your rash sorry. I did get a rash around my mastectomy scar and through to my back after each infusion but it didn't cause me any discomfort.

DFWFLYGIRL

MissBee-Good luck with your interview/job search!

Fightergirl-You got your first AC under your belt......I didn't have bloating but nausea/vomiting and as some mentioned here "rumbly tummy" during AC. I took a regular cocktail of Miralax daily, Nexium and Zofran. Your body might be in first AC reaction mode... keep on your track and tell your MO know if not better.

Buttaflydiva-I hate that you have to have another surgery for your port but hopefully it will be better for you in the long run.:))

Kelly-My nurses do the same as MissBee's recap the name, dose, drug and we discuss the time to infuse it. Sounds like you had a "distracted nurse"....thankfully you didn't have a reaction.

jebrunner

SUE1966 - I got a rash on the back of both hands (small itchy bumps, skin looked pink/red) after 4-5 Taxol treatments (no AC beforehand). I used 1% hydrocortisone for a couple days and it cleared right up with no recurrence. Hope it clears up for you!

fightergirl711

SUE1966 I completed 12 Taxol and 4 Herceptin / Perjeta only recently, I was rashy on my head, face, neck. Some of it may have been from the Perjeta, possibly the steroids, possibly the Taxol. I was prescribed clindamyacin and a topical steroid, and it made a difference. I'm unfamiliar with the relationship between rashes and a stomach ulcers, I hope it gets better soon, and it resolves on it's own.

DFWFLYGIRL I'm hoping it's the "first dose blues" too. I haven't had nausea, just extreme discomfort, to the point of walking the dog in the middle of the night to see if I can relieve any pressure. I also feel perpetual heartburn, unlike regular heartburn - it's beyond my chest (nose, eyes, stomach, even bladder area.) The nurse says this is the mucous membranes all being affected, today is Day 6 and it's still going on. But it's not worse. Zantac helps, but I'm going to buy Gaviscon today which was my go-to while pregnant, maybe it will make a difference, I don't know.

Buttafly so sorry about your flipped port. You were right, it shouldn't move. They should have acknowledged that when you told them the first time.

Maya15

Went for Taxol #6 today. I guess that's halfway but often I feel like I'll never make it to the end. My blood counts have been going down a little every week and now they've told me they're too low and I have to go to the hospital an extra 2 times a week to get neupogen injections to continue the chemo. They have injections that you can do at home but it takes a while to get the insurance to approve those so for now I'm ending up having to go the hospital almost every other day. Also I have to start making appointments to plan the surgery that comes after the end of chemo...not looking forward to all that.

LoveMyVizsla

Maya, I didn't have any trouble getting neupogen approved. I have twelve doses sitting in my fridge, waiting for me to start taxol. How far is it to your hospital

DFWFLYGIRL

Maya --Hate hearing your levels are dropping and have to trek back and forth to hospital for shots:(( . I had #5 today and my levels have dropped but not low enough for shots. It does feel like this will never end.....kep pushing ahead!!!

phaila

TC CHEMO hi ladies, I was wondering if any of you could do kinda list of symptoms of TC. Like when they started and ended? Things like hair loss, naseau, tingly fingers toes, fatigue etc... Also how many of you were hospitalized with netroponic fevers? Did any of you ice or cold cap? And if so, how'd they work for you?

Thank you so much and hope many of you are nearing the end of your treatments❤️❤️❤️😊

Vick

zinny

fightergirl - how about a stronger acid blocker - when my heartburn persisted, they put me on pantaloc - works great!!

jensgotthis

phaila,

I didn't have a ton of SE from TC (just to confirm, for me this was Taxotare and Cytoxan). Day 1, just tired out from all the Benadryl and the alcohol base of the Taxotare. Day 3, starting to come down from the steroids would leave me tired, emotional and a tad shaky. I would also be constipated due to all the meds (found I need to start taking stool softener before chemo day and keep taking it for about 4 days). Days 4 and 5 felt like I had the flu with body aches, sore throat, bone pain (from Neulasta, be sure to take Claritin to hep ease this; others have found Aleve helpful). Day 5 or 6, my tongue would be coated white (like thursh) but my energy would start coming back, Getting better and better over the next two weeks until I was basically normal. Also around night 5 or 6, I swear I would be up once per hour to pee at night.

My hair came out cycle one starting on day 15 and took a couple of days to fully fall out. I didn't cold cap.

The more cycles I've done, the drier my skin has become especially my hands and feet. Moisturize like mad or you risk becoming a lizard like me.

I found that drinking water (3 liters a day) and exercising (at least 30 min but ideally an hour of walking) made enormous differences in how I felt. A soft tooth brush and Biotene also were very helpful as was Ayre nose gel because the first couple of rounds my nose completely dried up to the point it would bleed spontaneously. And I can't overstate how important the head game of all of this has been for me - when I feel strong emotionally, the chemo is not bad. So I've been investing in doing stuff that helps with that.

Ativan helped me sleep the first three nights after infusion day (the steroids messed with my sleep a lot) and short naps on days 6 through 10 were helpful. My worst feeling days were days 4 and 5 and I would sleep most of those away.

I started getting hot flashes around cycle 4 in the middle of the night. They are annoying but not horrendous.

I eat a lot of soup because it's easy on my tummy and lots of veggies and protein. TC wasn't too horrible - I had zero nausea, which is what I was afraid of. I just finished my fifth infusion last Wednesday and spent days 6 and 7 at Disneyland (walking 24 miles Over both days) and I feel fine. No hospitalization for me so far.

Good luck. You can do it! I realize I've written a book when I said I didn't have that many SE lol...

Cathytoo

phaila....I just completed my 4th TC infusion.

My side effects with TC were as follows:

FIRST INFUSION: No side effects at all. However, I stopped taking Clariton one day early and had very bad back pain from the Neulasta patch, which I've reveived each infusion. I took a Clariton and Aleve and the pain went away within the hour. After this experience, I begin taking Claritin the day after the infusion and continued for 7 days.

I did lose my hair right before my second infusion.

SECOND INFUSION: Days 4,5 & 6 I felt slightly tired for a few minutes at a time. It passed quickly. I began to feel slightly constipated and started taking one Senokot and Clariton each evening. I developed a very painful burning feeling in my face which lasted about four days. Just when I was thinking I couldn't stand it any longer, it went away.

I developed a bad dry taste in my mouth. Didn't make anything actually taste bad, but it was hard for me to taste anything. This began going away on the second week.

THIRD AND FOURTH INFUSION: Felt more weak on days 4,5 & 6. Didn't have to be in bed. It wasn't a feeling of being tired...more like a vacuum had drained every bit of energy out of my body. Again, it would pass quickly, but it was strange and exhausting. Bad taste came and lasted for about a week.

I've been very lucky. I didn't experience any pain, nausea, constipation, mouth sores.

I DID NOT experience the buzzing feeling some of the other women have mentioned. I had no sleep problems. I did pee every two hours during the night on days 5 & 6.

My MO told me TC was well tolerated and i found that to be true. i still have two more infusions and I'm hoping for the same easy time.

DRINK, DRINK AS MUCH WATER AS YOU CAN HANDLE.

WALK, WALK...

Good luck. ❤️❤️

jensgotthis

oh yeah, and there's this weird buzzing feeling with TC that I've had during the later infusions on days 3,4, and or 5. Can't explain it other than my body feels like it's vibrating

Maya15

Lovemyvizsla-- My insurance won't approve neupogen unless blood count goes below a certain level, so I couldn't get any in advance. How did you get yours? Did it get delivered to your house or do they give it to you to take home at the hospital? My hospital is about 1 hour 15 mins each way, it's doable but 3 times a week is gonna be hard, some of those days between chemos I'm really exhausted.

MissBee123

phalia, I had a really hard time on TC, but my infusions were also accompanied by Herceptin and Perjeta.

What I will also say is that, from reading other posts, clearly everyone really is different so don't think any one experience will exactly match yours.

I got the buzzing everyone mentions from the steroids. The biggest two issues for me were delayed onset nausea and crippling diarrhea. The nausea would show up on day 4 and last for about 5 days before it was tolerable for me to be up and about. I had steroids at each infusion and Dexamethasone to take at home, but it never really went away completely. The diarrhea was horrible. Nothing I took seemed to help and it was so bad I often couldn't leave my home for fear of having an accident. I never had a fever and although my counts dropped after round 3 simply waiting a week allowed them to recover on their own. I generally felt fine on infusion day and day 2. Day 3 was always a bit "off" and days 4-8 were usually in bed most of the time. Day 9-10 was back in the land of the living and 11-14 I felt normal again.

No neuropathy, no cold cap, and my hair fell out on day 15.

zinny

Love day 1 post Taxol when the steroids are still buzzing, and give you a healthy glow! Off to walk and meditate and make muffins and do laundry and….Wishing you all a lovely weekend. Expecting warm weather out here on the west coast!

Frill

Hi, everyone. I'm sorry the Taxol isn't treating everyone so nicely. I wonder if it's because y'all did the stronger chemo first? I really dread the FEC coming up in two weeks. I don't know the logic in the reverse order from everyone else, but there has to be a reason. I have had some dead tired stretches, but not this week. I've worked out 3 times.

Lymphedema is giving me hell, though. Hopefully that subsides after the Taxol. I had 10 days of Clindamycin, that even being on probiotics killed my stomach. I can't imagine how bad it would have been without it. My nails on that hand are killing me. I thought it might be a sign that my nails were going to come off, but it's only the L-hand, so I'm thinking it's the constant bandaging.

Lol my long blonde wig finally came in yesterday. I'm getting it styled this weekend. I have yet to wear any of my wig purchases. I like my scarves wayyyy better.

I've been doing the hospital thing for 7 months now. And now I go 3-4 times a week. I can't imagine what life will be like post-rads and surgery.

Jen: Like JC said, the best laid plans....I was supposed to have a double mastectomy and wake up with boobs. I woke up with one real boob and one missing boob and started screaming. Lol! So, I guess part of this whole thing is going with the flow. Ugh. One day I'll have matching boobs again. I just am not counting on any particular day. I hope that you get to have what you want and WHEN.

Maya15

Frill you look great with that scarf!

LoveMyVizsla

Maya, I have a pre-existing auto immune condition which makes my white counts low. So they knew I was going to need the help of neupogen or Neulasta. The first set of neupogen we picked up at the pharmacy at the cancer center. The Neulasta was overnighted by my mail order pharmacy, same with the next doses of neupogen.

Frill, you look great

LovesToFly

Frill I did FEC first and found it very tolerable, as long as I made sure to stay on top of the antinauseants and take the "as required" one the minute I thought I might be getting queasy, I was fine. My chemo weeks I was a bit more tired than usual, but nothing awful. I also started getting mouth sores on the second week, but I used prescription mouthwash and they never got really bad and went away after a few days. Most of my time on FEC I could barely believe I was actually doing chemo because my life was so normal!

JCS28

Has anyone tried eye drops to curb the runny, watery eyes? My MO said it was from dry eyes and recommended to get eye drops that are the gel kind. She said Systane was one brand. I found them at Walgreen's. So I've been using them twice a day for about 3 days. Just wondering if others had heard this or tried it. I'm not sure yet if it's helping. It's worse in the sun and wind. And it was better when I was outside in the sun this morning. But it wasn't that predictable before.