Starting Chemo May 2020
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Hi Ladies! Odd question, but have any of you experienced pain in your teeth? Today I have been feeling "twinge" of pain in my front teeth (both on the top and the bottom). This is new and not welcome...lol. I feel like I have been vigilant with my dental care throughout the chemo, using a soft toothbrush and enamel restoring toothpaste after each meal, and been quite mindful of my need to be extra attentive to my mouth. I have chewed ice chips during Taxotere infusions and thus far only had a couple mouth sores. Hopefully today is an anomaly? I'll mention it tomorrow at what should be my last infusion. YAY! Then RO appt. and Neulasta injection on Wednesday.
I hope you are all feeling good and staying cool
. Cheers,
Sabrina
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Done. With. Taxol.
Have spent all afternoon sitting on the couch in kind of stunned exhaustion. Twelve weeks of blur. You ladies have been such a wonderful group and tremendous support. I am loving watching each and every one of you make it to the chemo finish line. Keep going, rock stars!
--Judy
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Judy - CONGRATULATIONS!!
Sabrina - I have not had any teeth pain, but I have had mouth sores. I think today may have been your last day. Thinking about you.
I will finish setting up Facebook page tomorrow for anyone who would like to stay in touch. I will post the details at the end of the week.
Take care and thinking of everyone.
Paula
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That's awesome Judy! So happy for you!
I had what I believe was my last infusion today too (pending the appt. with my MO on Friday). Like an idiot, I forgot to bring my phone with me! I was so panicked about not having it, but thankfully I could order a taxi home with my laptop. I chose not to ring the bell since I couldn't memorialize it in a photo or video....lol. The nurse suggested coming back in a week or two when I actually feel like I am done with chemo and they will film me ringing that bell
. Thanks for setting up the page Paula! I am looking forward to joining
. Have a great evening ladies! Hugs to all.
Cheers,
Sabrina
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Yay, Sabrina! And whew! Fingers crossed for your appointment on Friday. You'll deal with whatever your MO says, but, sheesh. No advice on the teeth, but maybe if you really are done with chemo, that will abate before too long. I was going to ask if you are clenching your jaw, perhaps when you sleep. That sometimes makes my teeth hurt. (And, really, who among us is NOT a wee bit tense these days?) Then I saw it's your front teeth, so maybe not... Share that bell photo with us?
--Judy
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Sabrina - Congratulations!! That stinks about not having your phone with you.
I set up the Facebook page. I have attached an image below of our page. Those who would like to join, just need your email address to send you an invite.
If all goes well, my last chemo tomorrow. Week 13 will be Herceptin alone and then every three weeks for the next 9 months. I am finally beginning to see the port as a good friend.
Thinking of you all.
Paula
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HI everyone-jumping in here after a long time away! I was feeling so great with the AC and just finished the second of 4 rounds of taxol and my legs are sooo sore! I hope it's not cumulative or anything that will last beyond the chemo. The Neulasta is also making me very dizzy.
It is inspiring to see some of you who are finishing your last treatments. I will be getting radiation too.
Julie
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Hi Ladies! I am slowly starting to feel a bit better. Round 4 of TC has really kicked my butt! So exhausted, lots of neuropathy, eye throbbing, teeth pain, constipation, neulasta bone pain, etc., but the chemo brain has been absolutely ridiculous. I certainly hope that passes quickly! Finally getting some energy and able to feel human again, just having trouble focusing and making sentences....lol. My MO is NOT ordering 2 more rounds of chemo. Yippee!!! She is putting me on Anastozole for the next ten years, which sounds just lovely..... I had a productive phone call with the medical representative today and she seems hopeful that my return to Belgium may be approved in a couple of weeks and I might possibly be able to go home before the radiation therapy starts!
Hi Julie! Only two more to go! Yay! I hope the legs feel better soon. Neulasta leaves me very dizzy too. Learning more about the radiation process and getting very nervous about it, but I know it is for the best, so I have to do it. We got this!
Hi Paula! I didn't see an image attached in your post for the FB page, but I would love to join. I'll send you a message via this forum to give you my email address
. I hope your last chemo went well! Congrats . All my best and big hugs to everyone!
Cheers,
Sabrina
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Hi everyone!
Sorry to have been MIA. I’m feeling quite a bit better and am 3 weeks out from my final TC chemo. I have a follow up appt this week to find out what kind of endocrine therapy I’ll be doing. Fortunately, I will not be needing radiation.
Sabrina, huge congratulations on wrapping up chemo and not needing additional sessions! And your Belgium news is fabulous - fingers crossed that works out for you! I haven’t had the tooth pain you describe but I’m convinced I may have a cavity so have to ask MO at my appt this week when I can go to the dentist again!
Paula, thanks so much for setting up the FB page. I’ll message you with my info to join. Did you have your last chemo? Hope you’re recovering as well as can be expected from that.
Julie, great to hear from you. Glad you’re plugging along! All of the premeds and Neulasta always made me feel awful but then again I guess you come to realize the devil you know is better than the devil you don’t in terms of side effects?!
Judy, hope you’re continuing to do well!0 -
Hello Everyone,
Judy - I did have my final chemo last week. I continue on the Herceptin every 3 weeks for a year. I will be finished in May. I will also start the endocrine therapy soon.
Sabrina - I don't think I was supposed to post the image and the moderators probably took it down. (Oopsy). CONGRATULATIONS on finishing. I sure hope you are approved to go home.
Hope everyone is doing well. Always thinking of you. Cheers to us!!
Paula
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So happy to see more of you crossing the finish line of this marathon, or at least getting close! I know the weekly Taxol was not as bad as those of you getting big doses every three weeks or so, but it still went out with a bang of nagging side effects. About 10 days later, I suddenly looked around and realized that... I did not feel miserable. Such a low bar, but it was a strangely happy moment.
Julie: Even the weekly Taxol made my legs incredibly achy for about 2 days. It was manageable with Tylenol/ibuprofen, but just no fun. I hope that you are feeling better. Sabrina: You must be longing to get home to your family. Hope that day comes soon for you. Bon retour! Paula: Just YAY!
Met on Wednesday with the radiation oncologist and now sport 4 tattoos so that they can get me lined up properly. It's funny that I did so much preparation and research for the chemo, but with radiation, I don't have it in me. First treatment will be Aug. 26 (with next Herceptin on Aug. 25), so am just trying to enjoy nearly 3 weeks without anyone poking, cutting, poisoning, or zapping me. It's the little things...
Hang in there, everyone. Sending you all good and healing thoughts!
--Judy
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Judy- I think I will ask for a smaller dose next time- the oncologist offered it but I thought taking some pain meds in advance would help. Got a chuckle out of your statement of enjoying not being poked/poisoned etc for three weeks- the little things for sure! Good to hear you don’t feel miserable- I have been getting ‘anticipatory’ misery before these taxol treatments knowing it’s gonna kick my ass for a few days.
Sabrina- I hope you get good news and can go home soon- your story gives me goosebumps
So glad to be coming up to the finish line! We have been through quite a journey in such crazy times!
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Hi Ladies,
Just thought I'd check in. I've been reading everyone's posts but just haven't had the energy to respond. The AC is still kicking my ass. I'm getting IV fluids at home for 5 days and continue to try new drugs each cycle. I have felt the least nauseated but most tired with this round. My last one is 8/21. I totally get the anticipatory misery before infusions, I have been feeling that way as well. The Neulasta hasn't been bothering me as much as it did with the Taxol, I think because the Taxol has its own bone pain side effects. I should be starting radiation mid-September.
Any hair growth/peach fuzz from those that are finished? I kept about 5% of my hair, so that's still growing LOL. It's starting to look a little silly so I may shave it down before the rest of the hair comes in. I've heard that it may take 2-3 months to come in and that it may come back in reverse of how it went out (for me the sides fell out, then the back, then the top). My eyebrows are getting more and more sparse, mostly on my left side. I had been doing full makeup every time I wore my wig but now just do my eyebrows and eyeliner on top with a swipe of lip gloss (I'm still keeping my diagnosis quiet).
Congratulations, Sabrina and I hope you get to return home soon!
Paula I'll send you my email address for the Facebook page. Thank you for setting that up.
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Hi Angela, I was wondering the same thing about hair/eyebrows/lashes. I have about 10-20% of my hair, and mostly eyebrows and lashes are still there so I'm really crossing my fingers they stay! I too have been keeping it quiet because I have a wellness practice and have told clients I was just taking the time off to avoid covid. Sorry to hear the AC is so horrible for you-we are almost there!
I asked my MO and she was very comfortable that there is no risk with reducing the intensity of the taxol by 15%-the leg pains even though just 2-3 days are off the charts no matter what I take, and I had so much dizziness/stomach problems in between.
Julie
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Good to hear from you, Angela. I've been wondering how you were doing -- and am sorry you've gotten hit so hard. This isn't for the faint of heart.
The hair report from 12 weeks of weekly Taxol: I felt the first little sprouts start pushing through between weeks 10 and 11. Happiest day of this whole stupid ordeal. I've still got a few fluffs of hair here and there. It looks AWFUL, but is making it hard to tell quite what's going on. I'm with you, Angela, and may just get rid of the stragglers at this point. My eyebrows held in there right up until about the last 10 days and now they have gone from really thick to noticeably thin. It seems so unfair. Also unfair: I was promised I wouldn't have to shave my legs all summer, but that hasn't been the case...
I still find myself thinking at times that it's the 21st century, for crying out loud, and we should be doing so much better than this at treating this scourge, to say nothing of prevention. But I guess we should be glad it's not 40 or 50 years ago, either.
Judy
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Hope our warrior ladies are hanging in there. I've been trying to get used to the SEs of Taxol, and realized tomorrow will be the final 12th Taxol for me. Then on to AC.. (guess I'm one of the stragglers here) but seeing how it's been on Angela and others.. been getting worried, and emotional.. but it has to be done, right? I've been trying to breathe and go to my "happy place" so that I don't completely freak out.. Where is your happy place? Mine is picturing my two girls giggling and giving me the bestest and sweetest hug. Oh I feel better already. Sniff.
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Cali-
Good to hear from you. You’re final!! How are you feeling? I like your description of your happy place. Don’t laugh, but my happy place is watching repeats of FRIENDS while cooking. I don’t normally watch TV, but when I want to unwind and think of absolutely nothing, I turn on an episode or two and cook! Congratulations on finishing!
Angela- How was your last? You’re done! Congratulations!! How are you feeling?
Thinking of everyone.
Paula
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Hi ladies
Feeling pretty crappy today. I got transferred to an overflow area yesterday and they didn’t have the regular bell for me to ring but they were so nice and found me this small one to ring. My MO wasn’t there yesterday but the nurses and NPs sang Zippity Do Dah and gave me a medal. Everyone congratulated me as I walked around, so it was kind of fun. I’m glad to have 2 of 4 parts of my treatment out of the way. My CT for radiation is 9/8. I’m hoping they’ll remove my port the week prior.
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That's awesome Angela! Sounds like a fun way to end that portion of your treatment. I can tell that you have a big smile under that mask
. I hope you will be feeling better fast. I have been cleared to return to Belgium! Hoping to fly back on Tuesday or Wednesday and after a 14 day quarantine, I will start my radiation. This is such a blessing for my family and I couldn't be happier.
Thinking of you all and hoping that your happy places are forefront in your thoughts
. Cheers,
Sabrina
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CONGRATULATIONS Angela on finishing!! You do look happy under the mask. I'm glad they found something for you to ring and a medal. So fun! What a great way to finish this part of your treatment!
CONGRATULATIONS Sabrina! You are finally going home. Does it feel like you're Dorothy in the Wizard of Oz?
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BIG CONGRATS to all of you who have completed chemo! I'm from the April group just checking in. Most of us are finished, too. and it feels great!
Angelanotangie: I wanted to add that my treatment center (also in L.A.) doesn't do anything to celebrate the last infusion-- no bell, no singing, etc.-- but one of my nurses must work at your treatment center because she told me that they sing Zippadee Doo Dah there! And she felt bad for me for having nothing, so she kinda did a quick little version of the song, along with some cute foot stomps and hand claps! It was super sweet.
Honestly, the treatment center staff I got to see every week/every other week were awesome and I absolutely couldn't have survived this five-month poison torture without them. Especially in this strange pandemic time when visitors aren't allowed... there was no one else to talk to during chemo! I am just over a week out of my last treatment and feeling kinda emotional. I'm just so, so grateful for the nurses and other staff members who welcomed me, supported me, listened to me and laughed with me. Oncology nurses are the best people ever invented.
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I know I haven't posted on this thread in a long time. I'm really happy that many of you are done with your treatments. For me, between dealing with the physical aspects of chemo and the emotional aspects of a second time with TNBC I just felt like withdrawing from the world for awhile. The physical toll is definitely more for me this time around than the first time I had chemo 15 years ago. I was so spacey/dizzy for several weeks after my first chemo this time that at one point I couldn't focus on anything and did nothing but watch TV. I couldn't see text messages to use my phone and couldn't use my laptop. That sent me into a depression of thinking it was going to be like that the whole time. Luckily, that did stop after 3 weeks. The main side effect that is really tough is the extreme fatigue, which has increased with each of my chemo treatments. It hits on day 4 after chemo, the day after I stop the dexamethaxone and lasts for about a week and then improves slightly. By less than a week before the next chemo I start to feel somewhat normal only for it to return more after the next chemo. My digestive system has also been taking a beating. Let's just say I'm glad we're far enough into Covid that toilet paper isn't a scarcity anymore! Tomorrow is my 6th and last chemo. I'm sick and tired of feeling sick and tired! Although I'm happy it's almost over I'm dreading tomorrow and next week. I've been doing the cold cap and it's so painful for the first several minutes of each of the 22 times that we change the cap out that I take two Percocet before I leave for chemo. But it's actually working for me and I still have my hair, thinner but still hair. At least I hopefully won't need to deal with permanent hair loss from Taxotere like I had 15 years ago. I know I sound all doom and gloom but I'm actually doing okay for the most part. Cancer sucks!
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Hey congrats, Laurie (Camama2) on your LAST CHEMO tomorrow! Woohoo!!! I know what you mean about being tired of it all. I also was dreading my last chemo and the side effects, and it made it hard for me to even walk in there that day. It did not feel like a celebration at all, and that's the real truth. But... I did it. As we all do, I just showed up and took it, and somehow made it through. Not a lot of smiling, some teary moments with a social worker and my favorite nurse, some sleeping & drooling (haha), and no bell ringing, but I did it. Thinking of you and wishing you the best possible tomorrow!
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Laurie, CONGRATULATIONS on finishing. How are you feeling? Love the COVID TP comment. I'm still dealing with SE from chemo and I finished on 7/30. I'm guessing it will take a while. I'm so glad we're done.
Jelloelloello, I completely understand about not wanting to celebrate the last chemo. I was depressed my last day. What an emotional rollercoaster.
Let me know if you want to join the Facebook May chemo group. PM your email and I'll add you, if interested.
Congrats to us all! We got this!
Paula0 -
Hello all,
Happily my 6th and last chemo is over. I'm doing okay so far but based on past experience I'm going to crash and burn beginning around tomorrow afternoon to Monday morning due to being off of the Dexamethazone for about a week. Hoping I avoid the extreme bone pain I had non-stop after round 5 for 3 days straight (the 2 previous rounds I only had the pain for 24 hours). Not looking forward to the next week or so but at least it's the last one!
Since I'm TNBC and there's no hormone driven meds for me after chemo I did research before meeting with my oncologist to see if anything new has come up since my initial TNBC diagnosis 15 years ago. Back 15 years ago I had surgery first then chemo & radiation. The standard for TNBC now is to have chemo first then surgery but since I had my lifetime of Adriamycin 15 years ago (and it's the gold standard for TNBC) my oncologist wanted surgery first because TNBC is so agressive. Because of this I wasn't eligble for several things. Luckily in doing my research (supported by an article on breastcancer.org) I discovered there as a study in May of 2020 that fits my parameters exactly (surgery first, then chemo). My oncologist didn't even know about it and at first said she couldn't do it because it wasn't "standard of care" but then she realized it was a Phase III study. She said that means within a year it will be "standard of care" for my situation but that I couldn't wait and need to start now. So in about 4 weeks (enough time for the IV chemo to be gone) I'll be starting a a half dose of Xeloda twice per day for one year. The side effects look scary (the extremes being diarrhea that can hospitalize you and hand/foot syndrome where your skin can fall off) but my oncologist (and retired oncologist from 15 years ago) both said because I'll be taking a half dose I shouldn't have much, if any, side effects. The study showed women achieved a 10-12% increase in survival and considering TNBC is one of the most aggressive/deadly and usually comes back in 2 to 3 years I decided the potential benefit outweighs the potential downside. Who asks their oncologist for more chemo? Not looking forward to it but I want to live. Sadly I can't begin reconstruction from my BXM until I'm off the Xeloda in a year. But what good are boobs if you're dead, lol!
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Hi Laurie,
Good for you for doing the research, finding that article and convincing your doctor. We sometimes have to take our health in our own hands! I hope you are feeling ok and don't have to many side effects.
Paula
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Way to go all you FABULOUS women! Thanks for sharing your journeys with me-it has helped me so much.
I am wondering how your eyelashes and brows are- I still seem to have half my brow hairs and most of my lashes but hear they could still fall out? growing back.
Julie
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Hi Julie,
This group has helped me as well. I lost all of my lashes and brows about a month after my last chemo. Eyelashes are growing back quick and eyebrows are beginning to come back too. I never even considered lashes and brows falling out until they did. Hope you are feeling good.
Paula
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Hi Ladies! I didn't seem to lose any of my lashes or eyebrows, at least I haven't noticed any major difference. Mine are practically invisible anyway as they are so light....lol. I had a friend who used to dye hers to make them look more prominent. It's been two months since chemo ended so maybe I am out of the woods on that front, but my neuropathy has picked up a bit, particularly on my right foot. I am almost done with my rads and that is going pretty well. I hope you are all doing well too!
Cheers,
Sabrina
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Hi Sabrina, I am happy to hear that you didn't lose lashes or eyebrows. I have a bit of neuropathy as well, but it seems to be getting better. Glad you are almost done with rads too!!
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