Starting chemo February 2020
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Thanks for everyone sharing their thoughts on surgery. Still so much to learn and absorb about all this. I've been told surgery 3-6 weeks after last chemo. My oncologist told me to meet with breast surgeon after #5 (next week) but breast surgeon said "no, get MRI after round #6, then meet with me". I am meeting with plastics surgeon same day as round #6. I'm looking at a BMX due to PALB2 mutation, and radiation due to "area of enhancement" of 5cm around my 2cm tumor (??????). I'm a D and would probably like to go down to a C at least. I hardly have any idea of what can happen in what order (reconstruction, radiation) or whether they are checking nodes, etc. during BMX.
Round #4 hit me way harder in terms of nauseous feeling, fatigue and lack of appetite and everything tasting/feeling so dry in my mouth and throat as to be inedible. I'm expecting it to be worse after #5. I've been trying to think of "wet" foods that I can eat after round #5. I'm thinking cottage cheese, sweetened yogurt. What foods are you all able to eat those worst days? I can only drink so much Ensure.
"Constipated diarrhea" is a perfect description for what I had this last time too - for the first time. Was like my body was contracting and cramping for 45 minutes, but produced nothing...
I feel so lazy and bored too. Every day I tell myself I'll do yoga or some simple workout.... but I don't. It's going to take a while to get strong again after all this laying around. Plus I imagine lots more laying around after surgery.
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On the bad days I seem to like cold/sweet stuff. I was eating lots of cantaloupe, jello, canned fruits and I would drink carnation instant breakfast (I like those the best).
For surgery there's a section here for all Breast Surgery questions.
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I had my surgery prior to chemo. Before I met with my BS I was overwhelmed by the options. My first meeting with my surgeon was such a relief. She laid out the options for me and guided me through the decision process. I think you are wise to research the options, but don’t pressure yourself to make any decisions now.
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Got my labs today. WBC is perfect, Hemoglobin went up a bit from last week, still down from where it was before #5 but, hopefully it will go back up by next week. My Platelets are holding steady and, up from #5.
My MO feels that since next week is my last treatment we should be good to go, even if my levels are a little low. Unless something turns up on my Echo but, he doesn't expect any issue.
I'm excited but, also dreading the downturn I'll take after #6. I will just have to stick to my mantra, "last one" hopefully that will make the bad days easier to tolerate.
My Insurance wouldn't give out of network approval to my preferred PS because my BS is part of a group that has Plastic Surgeons that are In Network. So I had to switch, PS. New guy's work looks good and, he's in the same group as my BS so they should be able to line up their schedules. My appointment got pushed a week, so I'll meet with my PS in 2 weeks instead of next week.
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Had my radiation consult and planning today. Very fascinating. I’ll be doing 33 rounds starting mid June using the breath hold technique to reduce chances of hitting my heart. The science and preciseness behind it all was very interesting. They didn’t seem concerned at all about me having implants already and doing radiation.
I’m 7 days out from round 5 and it’s been so rough. I’m super fatigued. Nothing tastes good and I can’t get my diarrhea under control (sorry-tmi!). I’ve been super miserable. Anyone have any tips besides the BRAT diet and Imodium for diarrhea? I am waiting for a call back from the nurses line because I am out of ideas and need to get this to stop. I dropped 12 pounds since I was in last week and while I’d love to lose some lbs, this is not the way to do it
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My MO gave me diphenoxylate/atropine 2.5mg tabs. Works great. I still get diarrhea but, when I do 1-2 tablets will stop it. Before I was going through 8 Immodium and, still having issues
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It's been awhile since I posted anything. I finished my four TC treatments 4 weeks ago. Fatigue is much better but I must pace myself. My taste buds are still off which is quite annoying. Is anyone else further out and have news on when the taste buds get better?
I finally met the new medical oncologist for my facility and he dropped a bomb. What I was told earlier, that this cancer was a new primary, may actually be a recurrence of the 2014 cancer and the only way to tell would be to do something like Foundation One testing. Which I had mentioned to my surgeon but he chose not to pursue. I told the MO I would be very interested in pursuing this. I see him again in a month so we'll take it up then. It will give me time to educate myself.
Today I was supposed to have a breast MRI to give the RO information for my treatment. Unfortunately, my veins suck. The nurse stuck me twice with no luck. We stopped and I called my RO. She is fine, as am I, with doing 3D mammograms instead.
Tomorrow I have my simulation for radiation. And then we're off to the lake!!
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Ajminn3 —
I'm from the April 2020 chemo group. I stopped by to read how y'all who started two months ahead of us are doing. I'm sorry you've had such a problem with diarrhea. I met a wonderful gal from a 2017 group, DodgersGirl, who was hospitalized a few weeks ago from uncontrollable diarrhea. What ultimately worked for her was a prescription medicine called Welchol. I'd never heard of it. She said it is a repurposed medicine used for chemo and radiation induced diarrhea. Also, in my chemo 101 class they were quite forceful when talking about chemo diarrhea; said it's not like regular diarrhea. For example — if I went more than four times in a morning — call them straight away.
Hope you feel better soon.
🌈
j
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@craftylife - i think you're the farthest out. I have my final treatment on Wednesday 🤞🏻. I looked around and mostly everything says it comes back in 1-2 months after final Chemo. However, I have seen people mention not getting their taste fully back for years. I'm hoping it doesn't take that long.
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@craftylife - I hope your taste buds come back quickly. With my chemo, I only go every three weeks and I have found they start to return a bit, the last week. At least things aren't so bad, even if they aren't totally normal.
Does anyone have trouble with watery/dry eyes. I'm on taxotere, which causes eye problems for some. It's bad for me. My eyes water all the time, and they are crusty and dry. I get white tear stains on my face sometimes, and little crystal dry stuff in my eyelashes. I asked my oncologist at my last appt and he says the medication causes a narrowing of my ducts (I think). He was completely unconcerned and said if it doesn't clear after my last treatment, that I can go to an opthamologist and they will help me. But he didn't offer any ideas to deal with it now. I used lubricating eye drops and try to use warm compress at night. But it's very disruptive. I can't go for a walk outside without tears streaming down my face. I have gotten to the point I just ignore. Anyone else, it's very annoying, and I know it's not a huge deal, but was wondering if anyone had tips to deal with it.
I hope everyone else is doing ok. Most of us are done or nearing the end of chemo. My last treatment isn't until 5/26, I feel better now, so I guess I'll just make the best of these days until that final yucky treatment. Sometimes days feel dragging, and then other times I can't believe how it's flying by while staying at home.
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"Does anyone have trouble with watery/dry eyes. I'm on taxotere, which causes eye problems for some. It's bad for me. My eyes water all the time, and they are crusty and dry. "
It just started last week, my left eye is constantly tearing up. I was about to Google. I knew I could get dry eye, even bought Visibe but, never expected watery eyes.
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Thanks Morrigan and Byhisgrace. My MO gave me a prescription and it has seemed to help along with getting fluids on Friday morning at the clinic. I’m feeling a little better. They said they’ll proactively schedule fluids for my next (and final!!) round to try to prevent me from feeling so knocked down.
Fab4mom- I had a lot of eye/sinus trouble rounds 2 and 3. My left eye def has some watering/crust that sounds similar to you. Once my sinus stuff got cleared up my eyes seem to be fine. I also had some eye twitching and swelling those rounds that resolved as well (unless it shows back up for round 6). My MO also said it’s common with the taxotere and should resolve when treatment ends and if not then I’d see an optomologist. I found that doing a netipot rinse (which I really dislike) seemed to clear my sinus and eye problems the beat
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Hi everybody. I have #5 tomorrow. I remember reading that #5 was particularly tough. Has that been your experience?
I’ve had some of the “Taxotere tearing” but it’s not awful. I don’t have tears streaming down my face. I chocked up the crusty eyes etc to losing my eyelashes. I’ve seen advertisements on FB about joining a lawsuit against the makers of taxotere because of the excessive tearing, but hadn’t really investigated it.
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has anyone taking Taxol experienced twtiching eyes??
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dysonsphere I did! It was very annoying. It went away eventually. Maybe after a month and a half or so
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morrigan2575, thank you for doing some research on the taste buds and congrats on your final chemo Wednesday. I have realized the taste bud thing is worse with more processed foods so I’m sticking with chicken, sweet potatoes, baked potatoes and fruit.
Fab4mom, I had trouble with my eyes,too. I would have to wash them out in the morning and then use drops to clear them some more before I could put my contacts in. I would have to clean and rewet the lenses midday. I can’t wear eye makeup due to all the moisture. Dysonsphere, I had and still have the twitchy eyes. Sigh.
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I'm one month out and my eyes are still tearing up, mostly when I'm sleeping and first thing in the morning. I wake up with the crusty goo and then the watering starts. It ends about 30-60 minutes later, I believe. I wear contacts and have trouble focusing at first but it gets better within a few minutes.
Hope everyone gets some relief soon!!
I go in Friday for my 6 month mammo - CAD assisted and 3-D. I’m worried about the pain. I have a lot of scar tissue from radiation and cording in my armpit and bicep. Should I request an ultrasound now?? I can’t imagine putting tissue anywhere near the vice grips of a mammogram.It hurts to do lymphatic massage even.0 -
If you google “Taxotere watery eyes” a lot of law firms pop up. Here’s one:
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Went in today for #5 and my platelets were a very low 47 so I got sent home. Practically ran out of there, crying. My bloodwork has been good so far and platelets had hovered at 115, 117 past two rounds - so I was not expecting that at all. Anyone else have that happen? How much did your platelets go up in a week? 47 seems so low...
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for #5 my platelets were 82 but, they still went ahead with treatment. The NP wanted to delay a week but, my MO gave the OK with a lower carbo dose.
I'm surprised they didn't suggest a blood transfusion to get your counts up.
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Final Chemo today. My counts were a little low. My Platelets were borderline (79) but, the MO decided it was OK to go ahead (full dose) since it's my last treatment. My WBC was good but my Hemoglobin dropped 1 point from last week.
I'm excited to be done with it. At the same time I'm worried about the next part. Not the surgery but, the not knowing if I'll stay on H⚡P or have to go on Kadcyla. I'm trying to psych myself up for Kadcyla think of it as a benefit (which it is) but, right now I just keep focusing on 14 more cycles of chemo and I dread it.
Brightside, last day with the dignicap
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Congrats on your final chemo! Did you ring the bell? Seeing as I’ll be doing H/P for the duration, ringing the bell doesn’t seem like a big deal. I might ring it to commemorate the last Neulasta and last Dignicap. We’ll see.
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i was told I won't ring the bell until end of treatment so whenever I'm done with HP or Kadclya if that ends up being my post surgery treatment. Best case I'll ring the bell in February, worst Case May 2021.
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Just a check in from week #8 of my Taxol. I guess Taxol is ever changing. I don't think I've had 2 weeks be the same. This last week I had bad constipation, eye twitching, started to drop a lot of things like spoons or pencils if I wasn't mindful. The Dr. lowered my dose and prescribed some medication for neuropathy (I don't think I'm going to take it because of it's side effects). I also woke up with red cheeks this morning after my infusion yesterday. So I'm sure this week will have some new surprises. I have 4 more infusions!!!!!!!!!!!
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Dysonsphere- sorry to hear your side effects are changing every cycle! That’s no fun. Hopefully they start being more consistent (and minimal). I’ve had the eye twitching with taxotere. My eyes have been one of the most annoying side effects of my treatment!
Morrigan- congrats on the final treatment!! Hopefully the side effects were tolerable. Onto the next step!
MNSusan- how did round 5 go? That one was the hardest for me so far. Hopefully is was okay for you.
I have my final round next week. I’m excited, yet scared to be done with taxotere and carboplatin. I’m hoping this round isn’t as bad as the last. I’m finally feeling better. They’re going to proactively schedule fluids this round for me, so hopefully that helps. I also only have 2 weeks left of teaching before “summer break”, but I have a lot of meetings and paperwork to get done before then
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ajminn - my final chemo is this week too. I can't wait, even though I'm dreading it all. It must be hard to finish up teaching with the compounding side effects. It feels like it's taken forever to get here.
dyonsphere - you are getting close!
mmorigan - I don't even know if my place has a bell, but I don't want to ring it until I'm done with my infusions. Same as you, I need surgery and then I"ll know if it's HP or kadcyla.
micdpowers - I'm so sorry you were sent home. I would be devastated too. As much as I hate the chemo, I'm so happy I get each one done. I hope you get back in soon.
MNSusan - I agree, ringing the bell doesn't seem like a big deal until I'm done with all my infusions.
CriketDog - I hope your mammogram went ok. I'm hoping your eyes clear up, mine is so bad right now, i'm about to go in for infusion #6. I know that with taxotere, some women have lasting troubles and I'm worried. It's still worth the cancer cure, but really annoying. Mine water alot when i'm outdoors and bad in the morning and evening.
I'm feeling so good this weekend, not looking forward to #6 for the side effects, but excited to get it done on Tuesday!. I have no set plan yet, it's making me crazy. I need surgery, and they told me probably 3-4 weeks after my last chemo. All appts will be made at my last chemo. So hard for a planner like me. I don't even know what kind of surgery we are considering! Only three more days, so I'm just trying to enjoy my good feelings today and let the rest go.
I hope you all have a nice long weekend
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Hit the down days right on time. I really thought being the last treatment would make it easier to get through but, I'm struggling right now. I'm not happy but, I just keep telling myself this is the last time. Just get through the next few days and, then you'll be on the upswing. 🤞🏻🙏🏻
My appetite is gone, which I don't even care about but, my tongue/mouth burns again and food tastes like crap. They gave me a full dose of Carbo this time, I'm guessing that's the trouble maker.
My left eye stopped tearing up, I've been taking Claritin daily for the past week. I wonder if it was Allergies and not Taxotere?
Kind of stupid but, I'm irritated over the fact that once again my Chemo cycle fell right on a holiday. I got screwed out of Easter, Mother's Day and now Memorial day. I know it's stupid but, I'm annoyed that I can't eat anything I like (I'd kill for a burger, fries and milk shake right now). 🤣
MNSusan - i didn't have a hard time with the dignicap but, I'm so glad that's over with.
Dysonsphere - i get rosy cheeks after every infusion for me it's the Taxotere. I just use facial cream to make sure my skin doesn't dry out.
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I’m having some down days too. I don’t care about food and it’s a struggle to stay hydrated. There’s more nausea this time - Zofran mostly handles it. I keep telling myself that everything will feel different in a month I’m counting on most of the s/e’s being from Taxotere rather than H/P. Except the Perjeta poops of course. Fingers crossed
Morrigan, the Dignicap has been the hardest part of infusion day. My onc gave me some pain meds and it helps. My hair has thinned but I’m the only one that would notice - maybe 10%. My hair is fine anyway and I had cut it short before chemo. The hard part now is not to be able to style it. I’ve got a couple of good cowlicks, so .., It’ll all be worth it at some point.
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Same, I'm hoping the worst ends with TCHP. I know HP will still have SEs, especially the Perjeta one which I get all the time. I'm just hoping the fatigue, nose bleeds, mouth/tongue and taste issues go away. I'd hate to have to deal with this for another year.
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struggling on AC today. I got my first AC injection the 21st and I also got the Nuelasta shot and the Zoladex. I’m hot all the time. Nothing tastes good or even like food. I feel like I have a constant saline taste in my mouth. The nausea is enough to just be really annoying but mainly I’m sooooo tired and hot
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