Starting Chemo September 2019
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Just a quick check in to say thanks and I hope you all have a good weekend. Hope everyone struggling gets better and everyone delayed gets back on track.
My body is quickly losing energy. Going into my 48 hours of "hell" where I feel just awful. But, I will bounce back and do a proper check in once I do. Hugs!
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Hope y’all are doing ok today,, I feel better today than yesterday, got a question for y’all, anybody craving sweets? We have been sugar, and low carb for over a year now, so why am I craving this?? It’s like I could eat a dozen of Doughtnuts with chocolate, crazy stuff,
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Hi Maggie,
Since my dx I have avoided sweets, anything with refined sugar as best as I can. But I know it would all taste good (not like most other things I cannot eat in chemo week and thereafter) and I crave it too... I indulged in a package of sugar free shortbread cookies last week (do not like the thought of artificial sweeteners but it “calmed” my cravings for now)
My kids love Nutella - me too - wish I could eat it on toast on those days when hardly anything goes...
Greetings to everyone - stay positive! We’ll get through this!
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Hey all, the taxol has caused severe pain in muscles and joints, other than that side effects are few
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Checking in and hoping everyone is having a restful weekend. As expected, this last TC has knocked me on my rear end. I was able to chaperone my oldest's band Friday night and go to my youngest's soccer game yesterday, but other than that I've pretty much been in bed since Thursday. I'm weak, shaky, and I ache. I also have thrush fir the 3rd time, but my MO gave me a prescription so i was able To treat it as soon as it showed up. I know I just need to ride this out, but I'm so ready to start feeling good again.
OK, pity party over. Hugs to all of you...Tracy
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Dear Tracy,
Hang in there just a little bit longer!
Sometimes I like to think of this as a relay race (watching our small chemo room group at the Ob-Gyn taking turns with infusions every week). So, as I go in tomorrow morning for TAC number 4, pass the baton on to me and get rid of all ailments and feel grrrreat...
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Peggy - good luck with your 4th TAC today!
I feel better today, I just rested and slept yesterday and today I feel better.
i hope everyone recovers quickly from their latest rounds of chemo
Tracy
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Good evening, ladies!!
I hope you all have had a good day. I’m back from my trip to Amarillo and had a great time! I was worried that my Perjeta diarrhea would rear its ugly head during the 9 hour trip or at an inconvenient time while we were there but the Immodium kept it on track.
I’m glad to be home and starting the week where so feel most normal. Treatment 4 is a week from tomorrow.
Currently sitting at the urgent care clinic with DH. He had food poisoning on our trip and is getting fluids. We’re joking how unusual it was now for me to not be on that end of the IV pole!
I hope you all have a restful nights sleep!
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Hi everyone! I have been around since the beginning but haven't posted much. Congrats to everyone that is finishing up. Have to say I am a little envious--if everything goes as planned (ha!) I won't be done until Jan 20th.
I finished my AC and 2 taxols so far and thought I would update for others on how that went. I know I have been compulsively reading others updates on here the whole time.
AC#1: Didn't know what to expect but I tend to nausea so was planning to take the meds with an alarm around the clock. Came home from infusion feeling ok but tired and strange. My md started me on Zofran and Compazine. Spent most of the week in bed watching the clock until my next dose, mostly felt awful. Infusion on Tuesday and did not feel better until Sunday evening. Following week was mostly ok but had to call nurse to add Ativan and Phenergan.
AC#2: Same feeling post infusion. Set up alarms to take meds around the clock. May have caught a little bug. Felt awful the entire two weeks. Maybe had 2 half days where I felt normal.
AC#3: Best one overall. They gave me an extra bag of fluids with my infusion. Don't know if it made that much of a difference but felt normal from Saturday until the following infusion. Also added a scopolamine patch which I wore for about 6 days. Took meds around the clock for about 9-10 days but was able to back off. Developed a rash (itchy, red raised) on mastectomy side around back and down arms. Called it in and nurse thought it may have been from my laundry detergent which I disagreed with. Mentioned it to PA at next visit and she agreed. Not a common side effect from AC but it is in the literature.
AC#4: About the same as the first one plus the extra bag of fluids. Was in bed for the first 5-6 days. Felt ok following week off and on. Not great but not nearly as bad as the second one. Continued to take meds around the clock for most of the time until day 10. Able to back off a bit for the last few days.
Taxol#1: Had infusion 13 days after last AC (switched to Monday so I don't have to go in on xmas eve). Felt great after coming home after short nap. I'm sure it was from the premeds of decadron, kytril, benadryl and Pepcid. Able to cook dinner and some snacks for my family. Best day I had in a while. Also felt pretty good the next day. Got up on the 3rd day expecting to do the same since everyone told me the nausea would be much less and I shouldn't need around the clock meds. Felt awful around 1pm (48 hrs after infusion). Never really got ahead of the nausea because I believed I wouldn't need meds. Finally broke down on Saturday and started taking some Zofran. Felt a bit better Saturday but woke up sunday completely nauseated and feeling awful. Was really hoping the weekends would be my good days since I moved the infusions to Monday. Part of me is really hoping it was the last of the AC working out of my system. Since I was DD and only had 13 days. Rash cleared up by the end of the week--started taking Benadryl before bed each night.
Taxol#2: Was yesterday. Felt exactly the same as last week. Great right after the infusion and mostly normal today so far. I am going to start taking the Zofran now and hopefully stave off the nausea. My stupid port is not giving blood return. I should feel lucky I guess that I got through AC with it working but now they have to draw the blood for my labs from my hand. Went for a chest xray today to check the placement but I am not going to do anything if they say it needs to be fixed. No interest in another procedure. I can handle a few pokes for the next 10 weeks.
Overall other than the exhaustion and lack of motivation I have no other major side effects. My GI tract was mostly normal with a few bouts of diarrhea (one after AC#4 was especially bad and I ended up with a hemmorhoid that cleared up on its own in 3 days). I haven't had to take any meds for any GI side effects. No mouth sores either. Using Closys mouthwash several times a day.
I didn't ice my hands/feet for the first two Taxol but have all of the supplies to start. My nails are just starting to look a little dark at the bases and no neuropathy or pain in them yet. Did have some strange shooting pains down my lower left side like where my ovary would be. Hope it was getting a final message to stop
Otherwise just a bit of achiness which I didn't need to take anything for.Wishing everyone a week of recovery/few side effects. Thanks for all of your posts--I read them all daily (in fact, I spend too much time on here
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Hey all hope everyone is doing great. Taxol is treating me ok, except for the joint and muscle pain and the pain lessens each day. Snow here today and cold, it was beautiful with the trees covered with snow.
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Linda - I totally crave sweets right now, mostly because it's about all I can taste. I give in and eat ice cream and dark chocolate every day. But, I make sure to also eat lots of healthy protein and veggies and fruit. I'm giving myself a pass until my taste buds recover a bit. So, in about 3 weeks, I'll go hardcore healthy.
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Angie, glad you had a good trip. I hope your husband is feeling better now.
Tracy, I'm glad you're feeling a bit better!!
Eveldon, so glad to hear from you! I hope the rest of your treatments go well.
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Day 6 of TC #4
I'm coming out of the worst of it. Still have little energy, few taste buds, and some aches and bone twinges. But, happy to be improving.
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Happy to hear everyone is getting through their treatments. I am on day 6 of AC number 4, so half done chemo. This round my stomach was better, but the tiredness is kicking my butt hard core. And yesterday I woke up with my hip aching and it hasn't let up yet. When I'm not moving it's fine, but walking and stairs are a struggle. Nurse didn't seem too concerned today, so I'll chalk it up to overdoing it the day before or sleeping wrong.
I hope you are all doing well. Your progress and attitudes inspire me! 😊🥰
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Congrats to everyone who has finished chemo and positive thoughts to the rest of the September chemo group!
I don't post a lot, but reading everyone's posts has been so helpful to me. I am leaving for my final TC in a few hours. The steroids are keeping me awake. I was supposed to finish last week, but my MO let me delay one week to visit my son for Parents Weekend at his college. The visit was great and the extra week was very helpful as my husband needed emergency eye surgery the day after TC 3. He is just recovering now. He apparently didn't want to let me have all the fun! It sounds like some other husbands wanted to get in on the medical fun too.
Although I am thrilled to be finishing chemo, I am also feeling very nervous about moving away from regular treatment and check ins. I go back in 2 months for a check up and to start hormone therapy but nothing until then. I was wondering if anyone else was feeling the same?
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Cat, yes muscle and bone pain, it started 2 days after the taxol infusion, it was really bad at first, ibuprofen did not help the pain. It's 7 days post taxol infusion and the pain is starting to ease up.
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Hi gals,
Just had a midway through chrmo mammo to check tumor sizes which Did show a reduction but not a significant one. That was depressing news - has anyone experienced anything similar?
Thanks
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Patty
I had a mastectomy before chemo so I can’t help with experience. I will say though, not to get discouraged by sizing based on mammograms or MRIs. They can be different from what the tumor really is when removed. I’d also think that imaging could pick up portions of a tumor that were “dead” from chemo, so it’s possible not all of what they see is active tumor.
hugsTracy
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Closing out day 8 of TC # 4
One week after my final TC and here's where I am:
- Fatigue - the fatigue is bad. I'm not just tired, it goes beyond that. Walking from my car into work wears me out. It is getting a little better each day, but I could seriously just stay in bed (which, in all honesty, just makes the fatigue worse)
- Reflux - I'm having bouts of reflux at night. I had this when I was pregnant too. The other night I woke up choking because I had a reflux episode while sleeping and aspirated it into my windpipe. I'm now taking Prevacid daily.
- Thrush - arrived on day 3, started treatment immediately and it's 99% resolved.
- Taste - my tastebuds went on vacation last week and didn't invite me.
- Neuropathy - I have developed neuropathy in my fingers and toes. They feel weird/numb. I hope it's temporary.
Overall, I'm doing good. I know the side effects could have been worse, and I'm grateful they haven't been. I'm hoping in the next few weeks these SEs decrease and go away. It'd be nice to feel relatively “normal" for the holidays.
I have an appointment with my PS Friday to talk tissue expander fills and eventual exchange with implants. I'll have my port removed during that surgery. Next week after labs, I talk to MO about anti-hormonal meds. I was on Tamoxifen for 2.5 years when this tumor showed up. It's highly ER+/PR+, so clearly Tamoxifen didn't work for me. I believe we'll be looking at AIs assuming chemo put me into menopause. If I'm not in menopause, then it'll be an AI plus ovarian suppression. Sounds like fun either way (not lol)Hope everyone is doing well
Hugs to you all
Tracy
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Monkey0299 - I hope your final TC went smoothly and that your SE's are mild! Congratulations!
Patty66 - I was going to write exactly what Tracy wrote. The truth of the situation could be much better than it look on imaging!
Tracy - I hope you're feeling better every day. The fatigue is no joke. My tastebuds are also on vacation (hopefully having a horrible time so they come back home soon)! I'm sorry you developed neuropathy. I really hope it's temporary and clears up soon. My fingers and hands are fine, but I have a tiny bit of weird feeling/numbness in my toes and the balls of my feet. I felt it after TC #3 and it went away within 2 weeks, so hoping for the same result this time. My feet also swelled a bit with each treatment, so I'm wondering if that is part of it. You had swelling, too, right? Maybe your nerves are temporarily unhappy because of it.
I had a blood test today, then another next week along with meeting with my MO to set up a future appointment for the start of hormone therapy. I'm looking forward to a little break over Thanksgiving week. Although, they are encouraging radiation as an "insurance" because of my one naughty lymph node. I thought chemo was my "insurance". Hmmm. Haven't decided. Meet with RO for consult in early December. We went full force with a double mastectomy, lymph node removal, and chemo, so I need a few weeks to just relax and let my body heal. RO is pushing me to get started ASAP. It's a bit annoying, actually. I've barely had a chance to think and breathe these past few months.
All of you who haven't checked in lately, I'd love to hear from you all sometime this month. Just let us know you're okay (or not okay...feel free to vent). Sending positive vibes your way for health and happiness!!!!!!
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Lms I had two nodes positive, they were removed, had double mastectomy doing chemo, my mo said I would not need radiation, now I am wondering if that's ok. I will need to talk with her next week. I sure don't won t any surprises
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Gamb, I was told no radiation, too. Because the cells were grade 3 and 100% ER positive and 95% PR positive, I was told chemo and hormonal therapy only, since I was removing everything. Halfway through chemo, they throw radiation at me. Not sure what to think.
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Leah - I have had leg and ankle swelling after all of my treatments. It usually starts late in week two after treatment and resolves just in time for the next round. If this round follows previous rounds, swelling will start next week. Neuropathy is a known side effect of Taxotere, I just hope it's temporary. In any case, it's mild and more annoying than anything.
To all facing radiation - I had 30 rounds after my original diagnosis in 1999. Honestly, it wasn't difficult at all. I got a little tired towards the end (nothing compared to chemo fatigue), and I had a very mild “sunburn".... but that was it. Radiation is even more controlled and targeted now, as it's advanced in the last 20 years. I can't have radiation again, but I don't regret doing it the first time.
Tracy
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hi tmh0921 and everyone. i just joined and this is my first post/comment.
Was diagnosed early September this year, er+ pr- her2-, ki 67 = 70%, lumpectomy 3 wks ago. Wanted mastectomy to avoid radiation. Big misunderstanding at breast surgeons office. So went ahead with lumpectomy anyway. Tissue sent for oncotype dx , came back, RS 28%. They've already scheduled mastectomy on 11/20, oncologist put me on Arimidex starting 2 weeks ago. now my breast surgeon says I should have chemo , first before mastectomy because of my recurrence score. Onco knows of surgery schedule but hasn't opposed to it. He just said he'll see me a week after surgery.
I've already asked for a leave from work, and was authorized. I've already trained and hired temp employee to take over my position while I'm out. what to do?I feel bad going back and forth with employers who have been nothing but supportive and kind (long story about that). please help! What my breast surgeon explained to me is scaring me, but at the same time, I think she’s just trying to talk me out of mastectomy
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Keyqui
Lumpectomy vs Mastectomy is a very personal decision, but it should be YOUR decision and one that YOU can live with. I had my first diagnosis at age 27, in 1999. I was stage 1 and my tumor was a little less than a cm in size. I was ER+/PR+ and grade 2, with no lymph node involvement. I had a lumpectomy followed by radiation and Tamoxifen. I was fine for 19 years until I had DCIS in 2018, and now a new (not recurrence) cancer this year.
I have "busy" breasts. I always have. I started having benign fibroadenomas in my late teens and had a LOT of biopsies through the years. I then had Atypical Ductal Hyperplasia, and then Atypical Lobular Hyperplasia, and DCIS. This final round I was diagnosed with a new invasive ductal carcinoma (you can see the stats on it in my signature below).
Had I known that I would NEVER have a normal mammogram (because of these various conditions), I would have opted for a double mastectomy back in 1999, but hindsight is 20/20. At the time, lumpectomy was absolutely the right decision for me and I didn't want a mastectomy. 20 years of abnormal mammograms, and biopsy after biopsy however have taken a mental toll on me. This time, I didn't hesitate to demand a double mastectomy and not one of my doctors pushed back on me.
If YOU want a mastectomy, and that is what will make YOU feel comfortable, the you should push for a mastectomy. This isn't the doctor's decision, its YOURS. Don't be rushed or pushed into making a decision you don't agree with. If your surgeon isn't listening to you, find one that will.
***Edited after rereading your post: with regards to chemo before surgery. I don't think they are trying to talk you out of mastectomy by suggesting this. Chemo is recommended before surgery in a lot of cases, it can often times help shrink the tumor to improve disease free margins around the tumor, etc.
Hugs
Tracy
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Hello all! Day #3 of TC4 and it definitely brought all the side effects! I feel like I am underwater with weights and every movement is so much harder. I ache and am exhausted, and already lost whatever sense of taste I had.
Each treatment has caused worse acid reflux. Last time I tried Prevacid, which did little. I also OD'd on Gaviscon, which made me sick to my stomach. This time the doc suggested Prevacid. Fingers crossed.
My nails are not darker, yet, but are peeling and cracking and very short. My thumbs are the worst. I already had some neuropathy prior to chemo- it has not been worse so far.
I miss my hair, my head is cold! Although, showers are much faster now.
Because of the stupid BRCA, I need to do a prophylactic DMX and oophorectomy. I finally got MO to agree to hold off on ooph for 6months or so. My brain is in overload and I cannot deal with early menopause too. Of course, I don't want it to metastize. I am very close to hiding under my covers whenever I think too much about this.
They are pushing me to hurry on the DMX but I want to feel a little closer to normal for a short time before something else. I think I want to try DIEP flap, which has long recovery. I made appts with 2 PSs in next 3 weeks.
After all this, vacation to somewhere without doctors and no cancer!!
Thank you all for writing. I am sorry you have to go through this but am happy I am not alone.
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Hey ladies! I just wanted to pop in and see how you're all doin. I've just been workin, workin, workin. I have my 4th TC next Friday (22nd). I went to the ER with chest pain last weekend. Turns out I'm just stressed.
Hey Dotty! I'm having to have a oophorectomy too because of BRCA. I'm gonna talk to my oncologist next Friday about her preferred time frame for that surgery. I've already had the bilateral mastectomy with immediate reconstruction straight to implant. I started chemo 5 weeks after that surgery. We didn't expect lymph node involvement but... here we are. I also have monthly Lupron shots to shut down my ovaries. I haven't had a period since July which is awesome. The hot flashes and night sweats are unpleasant but tolerable. I'll go on Letrozole when all this is over. I get reflux really bad too with my chemo. My hair keeps trying to grow back between treatments but my scalp breaks out about mid cycle and I have to shave it for relief. Showers are definitely faster. lol I gotta do fat grafting to fix my reconstruction at some point too. Girl, I'm tired. I'm single (dating) so I still gotta work full time to make ends meet and pay these medical bills. I just graduated from physical therapy! I had my last session yesterday. My mobility is great. I just need to work on strength. I've been approved for the Livestrong program at the YMCA. That should be fun.
I hope you all have a wonderful weekend! I'll try to stop in more often. I miss goofin off here with people who understand how difficult life is right now. Love you!
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Hi alll. Hoping for a good weekend for us all. I finally got my second Taxol treatment yesterday. Liver enzymes are back where they belong. The spike attributed to oral antibiotic i was taking.
So mow I’m behind on the original schedule. We’ve been optimistic setting up chemo appointments till the end of the year. Baring setbacks I think I will now finish about the end of January. I haven’t counted them out. I feel like I jinxed myself and then lost two weeks.
Everyone I have mentioned to that I want a double mastectomy seems to be on the same page with me. Though, the one person I have not talked to is the breast surgeon. She’s on maternity leave. She will be back before my surgery. So I will have time to speak with her.
So far so good this treatment. Fatigue, but no nausea. No mouth sores yet either. So all going well.
I hope things going well for the rest of you. I’m just happy to get back on schedule.
Marily
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Hi Everyone,
Just trying to resurface after TAC number 4 and sending a quick message. Thanks to Tracy and LMS for the encouragement about the rather disappointing tumor size reduction.
I have started counting down days till Thanksgiving - it will be a wonderful break no matter what. Tasty turkey with fixings is way overrated anyway, right?
Take care
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