Mar 16, 2021 03:22PM LW422 wrote:
OK, #5 is done! Still grateful that my SEs have been very mild and manageable. Hope everyone is doing well this week.
Regimens, side effects, and support from others going through chemo.
Posted on: Jan 27, 2021 05:21PM
Thought I would get a thread started for those getting ready to start!
Posts 181 - 210 (372 total)
Mar 16, 2021 03:22PM LW422 wrote:
OK, #5 is done! Still grateful that my SEs have been very mild and manageable. Hope everyone is doing well this week.
Mar 17, 2021 08:33PM LW422 wrote:
Julie--hope your second round of TC went OK today.
AB45--how did AC #3 go? Did you wear the icing socks? I hope this round is easier for you.
Jennie--sounds like you are doing pretty well with your AC. I'm glad the icing helped prevent those mouth sores.
Aviva--I'm glad you did fine after stopping the Claritin. No pain is a good thing!
Hope everyone in the group is doing well and hanging in there.
Mar 18, 2021 04:26PM Jvfireball wrote:
Just a quick note. Had second round yesterday of TC. Steroids have kept me awake and I am feeling kind of mack truck run over. But decent otherwise. Hoping to take the steroids minutes before bed tonight and then be asleep before they can mess with me.
Hope everyone else is doing okay with the treatments this week.
Be well all...
Mar 19, 2021 11:38AM JN5000 wrote:
I hope you're doing okay, AB45. Glad to hear your second TC is done, Julie. I hope the steroid effect is minimal. LW422 -- glad to hear you're done with #5!
I am at day 9 after my second AC. This last treatment was a pounder. I was on the couch for 8 days. Days 1-4 are a blur. Yesterday was the first day with any energy -- today has been awesome. I went for a walk and actually weeded outside for a while though now I'm back on the couch. I'm taking Claritin past the 5 days and so far I've avoided bone pain. I'm taking a leave of absence from teaching and this past week some students wanted to visit on zoom -- I really looked awful and I didn't want to shock them and plus I felt crummy, so I told them I couldn't do it. While this process has been gradual, I think the way I looked just a few days ago would've been shocking if they'd hadn't seen the gradual changes. Sorry to complain. Managing this treatment has been hour to hour, it seems. GasX was a big saver this time -- my stomach and intestines are pretty messed up. it's not consistent with any one thing -- just one thing then another. But I'd advise having GasX available along with Imodium and Miralax -- have all bases covered so you can get what you need when you need it. I can't wait for this to be over --- just two to go then onto phase 2. Reminding myself that every day done is a closer to being totally done.
Thanks for listening!
Mar 19, 2021 03:55PM Jvfireball wrote:
JN500, Thank you, Last night wasn't any fun, but doing better today. No more steroids now till next round so I am sure I can crash hard tonight. Sorry your last round knocked you down hard, but glad you are past the rough part for this round.
LW422, I am glad 5 is done!!!
Good thoughts to all of us, I am so grateful for this group!!!
Mar 20, 2021 10:29PM Mikeysmom925 wrote:
CAWR, I started the same treatment (Taxotere/Cytoxan) last week (3/12). I am cold capping so hopefully will be able to keep some hair. So far I’ve lost less than what I normally lose on a daily basis, but I know not to expect a miracle. This was my first week “ post treatment” and I experienced a little of everything... exhaustion, sore throat, achy muscles and bones, cloudy brain, runny and bloody nose, diarrhea, headaches, and mouth sores. It all came in waves though... one SE would end and another would take its place. Any suggestions anyone has for any of the side effects would be greatly appreciated. I think the worst part was the 6 day headache that nothing made a dent in. I finally started feeling like myself one week after tx and then woke up this morning with mouth sores. 😖😖 Should I try ice chips during my next treatment? I’ve been rinsing with warm salt water all day and I’m praying they are better tomorrow. I’m thankful things aren’t worse but nervous about what to expect with upcoming treatments. Do side effects typically worsen with each treatment, or is the first treatment the hardest? I know it’s different for everyone... I feel like I’m rambling but I don’t really have anyone in my world who understands or who has been through it. Everyone keeps saying they are with me through this, but I feel really alone. I’m a single mom and I’m trying so hard to stay brave and strong for my son.
Thank you for listening.
Mar 21, 2021 03:43AM AB45 wrote:
Ac is a beast, no rhyme and no reason,I finished #3 Wednesday,steroids definitely mess with sleep patterns! I try to start mine earlier in the day. I also take heartburn meds, it helps with the naseauous feelings..The neulasta shot brings on the beating a few days after chemo so that is when I get the feelings of being hit by a truck 🚚. By the time you get on track, it's time to do it again butttttt we are doing it!!!! Keep going,..
My best to you!!
Mar 21, 2021 12:57PM LW422 wrote:
Julie--glad the steroids are done for this round and hope you are getting some good rest. I only have IV steroids before my Taxol and haven't been bothered by it, thank goodness.
Jennie--I'm glad you're hanging in there with the AC. Taking a leave is probably the best thing for you right now; you can get the rest you need and focus on yourself. Thanks for the GasX tip; I'm dreading AC so much so I'm cataloging all the helpful hints! Hang in there.
Dawn--nice that you have joined the group but sorry you have to be here. I hope the cold cap works for you; hair loss is such a demoralizer. I have been sucking ice chips during Taxol and so far, so good; no mouth sores. I think SE's are mostly hit and miss for all of us. I found my first treatment was hardest but I have 7 more to come so I might have to eat those words. If you have baking soda, put some of that in your warm water rinse for your mouth.
You are not rambling, and we all "get" it... believe me, we understand. I'm so sorry that you have to face this as a single mom; hugs to you.
Mar 21, 2021 01:02PM - edited Mar 21, 2021 01:02PM by LW422
Hey AB45! Girl, you are my hero... and only ONE MORE AC to go!! You can do it! I hope you will find Taxol as easy as it has been for me; my SE's are barely noticeable and I'm so grateful.
I have 7 more Taxol to go, so on Tuesday I'll be halfway done. Then on to AC and I am hoping so hard that it won't be terrible. My MO hasn't decided if I will be on a 2-week cycle or 3-week. Not sure which (if either) will be easier to tolerate.
My best wishes to all the group on this week's torture!! We will get through it, y'all. Let's get this done!
Mar 21, 2021 02:06PM JN5000 wrote:
Hi Dawn. We are with you -- you are not alone!! I found that keeping a container of water/salt/baking soda mix on the bathroom counter was very useful witih mouthsores -- every time I went in, I rinsed my mouth. Magic Mouthwash and Biotene didn't help nearly as much as the soda/salt/water did. I got mouthsores the first AC treatment but I only iced during the Adriamycin. The second treatment, I iced during A and Cytoxan and it helped alot. I chewed the ice constantly so that my mouth got as freezing as possible. I started chewing the ice a few minutes before the chemo started and I kept chewing it a few minutes after.
I've only had two treatments, but each had its own problems. I think I kind of am learning to just be ready for change -- each time, for me, is going to be different.
Some day in the not so distant future, your son will see a very healthy mother who was brave and strong during a difficult time because she endured and made it through. Every day done is one day closer. You will make it.
Mar 22, 2021 01:16PM LW422 wrote:
New week, everyone! Time for more torture to begin!
The good news (for me), is that tomorrow I'll be half done with Taxol, so yay. Of course, then I get AC, so boo. My "pixie" is coming out in handfuls now, so that's a big downer. I knew it was going to happen but the reality bites. I'm wearing knit caps so I don't leave a trail of hair all over the house.
I hope everyone is feeling OK and not having awful SEs. Check in and let us know how you're doing. Good luck this week.
Mar 22, 2021 03:23PM Mikeysmom925 wrote:
LW422 and JN5000 thank you both so much for your well wishes and wisdom. It helps so much to know we are all in this together. Sending prayers for strength and healing to everyone here... I will continue to check in, but today is a really good day and I’m going to get outside and take advantage of it! 🌺🌈
Mar 22, 2021 04:40PM - edited Mar 22, 2021 04:40PM by AB45
Good Luck all on chemo this week, may the side effects be minimal and we get through this 💪! Day 4 after Ac, exhaustion has hit but I think this is from the neulasta and chemo. I am hoping to get some relief in a few days and maybe just a little more energy, 🙏 be waiting for updates to read on you all..
Mar 23, 2021 05:32AM Moderators wrote:
Zoom meetup TODAY for those about to start, or going through Chemotherapy!
The registration link may not have been working, so re-posting!
Please join today by using the Zoom Meeting ID: 852 4261 3568
You can also register in advance for this meeting!https://us02web.zoom.us/meeting/register/tZEvc-uur...After registering, you will receive a confirmation email containing information about joining the meeting.
Hope to see you today, and apologies if registration wasn't working
Mar 23, 2021 08:25AM - edited Mar 23, 2021 08:25AM by Jvfireball
Sorry Guys for my absence, been busy with work and tired so hadn't popped on here much.
Dawn, Welcome, I am so sorry you need to be hear but so glad you found this group. These gals are amazing and it's exactly what we need to know we ARE NOT ALONE!!! We got your back and will walk this with you every step. This group you can share and ask anything...so wonderful.AB45 and LW422....congrats on #3 down!!!! You guys are rockstars!!
LW422 so sorry about your pixie cut falling out...I get it......hang in there!!!
Jennie, hope you are doing well this week too!
Prayers for us all....
Mar 23, 2021 05:48PM LW422 wrote:
Hey Julie; sorry you're tired but it's nice to hear from you. Thanks for the praise, but AB45 is the only rockstar; I can only wish I was halfway done with AC!! (I am halfway with Taxol, though... so woohoo!)
Hang in there, everyone!
Mar 24, 2021 08:27PM LW422 wrote:
AB45--girl, you are definitely a rock star! I hope that when you get to Taxol, you'll have as easy a time as I have had so far. I almost feel guilty because I expected it to be so much worse than it is. I'm very grateful so far, and dreading AC... but we all are going to get through this!
Mar 25, 2021 06:09AM Mikeysmom925 wrote:
Hi again all... I hope this finds you all feeling strong, beautiful, and optimistic today.
I have a few questions about side effects ... I had my first treatment with Taxotere and Cytoxan on 3/12. I felt a little tired but generally good for two days, and then the body aches, headaches, bloody nose, brain fog, and sore throat kicked in... nothing terrible but definitely noticeable. After about 2-3 days of that, I started with diarrhea (sorry if that's TMI) and still had all the other side effects except the body aches... I started to feel almost 100% better by a week after treatment, and then I broke out with mouth sores. By day 10-11 after treatment, I started feeling really good again, and I anticipate I will feel good until round 2 next week. Should I expect the same side effects after my upcoming rounds, or do the side effects change with each treatment? In your experiences, have they been worse with each round or is the first round the hardest? I know everyone's experiences are so different, but I'm finding it easier to cope if I have some sense of what to expect beforehand.
Thank you so much for sharing all of your wisdom and strength ...
Much love to all of you-
Mar 25, 2021 10:23AM LW422 wrote:
Hello Dawn. I wish I could answer your question, but as you know we all react differently to the treatments. Plus I'm on Taxol (not TC) so I have no experience with the combination you take. So far, Taxol has been very tolerable with minimal SEs for me, and I'm so grateful about that.
Hopefully someone on the same TC cycle as you will reply, and I hope your next round goes better for you.
I hope everyone is having a decent week!
Mar 26, 2021 10:30AM Jvfireball wrote:
AB45 and LW422, I think you are both rock-stars.....and I agree I can't wait till we are all through with this!!! You two are encouraging to me and I appreciate you both every time I log on!!
Dawn, I have completed two rounds of TC. I had very similar side effects you described minus the mouth sores. I was given biotene oral rinse and I used it right after my first treatment and about every two hours for the first 4-5 days then i drop it to once in the morning and once at night. Day 12 was when my hair started falling out and by day 14 it was coming out in clumps so I shaved it. Of note I had long thick hair and I think the weight was a factor in it falling out faster than some. The second round I experienced mostly the same side effects just magnified a bit. Definite energy drop even more. The second round I did get a sore throat and mouth, not sores but swollen glands and swollen mouth is the best way I can describe it. Also the diarrhea hits at about day 3 after and for me lasts about a week and then seems to go away till the next round. First round's SE lasted about 7-10 days (except the fatigue part I think my energy levels stay lower even the last week or so) 2nd round now I am day 10 from treatment, most of the side effects are gone but a new one today or a rash/flushed face. I am pretty sure is where the tiny micro hair follicles are falling out. I have no leg hair and my arm hair is about 50's gone so that's actually a bonus, but I think my lotion bothered my face because the pores are more open or....not sure but that was a new one this morning. As far as each round getting harder, I think that's true, not an exact science but I explain it to my friends like if you start at 100% the first round, you get back up to about 90% for the second round, then 80% by the third round and so on....so we aren't tackling the infusions at full strength plus the chemo is building up in our systems. Since I am a few weeks ahead of you I will gladly share anything I can to help you anticipate what's to come. Each day is one day closer to the end date, and none of us are alone. Feel free to ask if you have any more questions....anything is on the table...no TMI in this room....we are here to help each other through this.
Authentic and transparent helps us all....
Here is to all of us!!!!
Mar 26, 2021 01:03PM aviva5675 wrote:
Im doing TC and after first round was foggy, fatigued, sort of constipated, bad headaches. Took claritin for the neulasta, no bone pain. I was told we are all different but probably same side effects each time possibly worse tho, as it is cumulative. My hair at day 18 on the dot started falling out and thinning, shaved my head on day 21, after my second round. So glad its gone, I feel much better.
For mouth sores I swish 1/2 t baking soda, 1/2 t salt in glass of water off and on during the day, that helps. I was on Ibrance for 6 months and did that also and got to no sores pretty quickly.
Also, Ive done the 2 zoom meetings the last 2 Tuesdays and found them helpful and interesting.
Mar 27, 2021 07:12AM AB45 wrote:
For those with Ac coming up, I found these items as a must have, I know everyone is different and you may not need them but here you go: heartburn meds, ginger for naseau, something for constipation, prune juice could be an idea, claritin for joint pain for those who will take neulasta shots, Tylenol for headaches, and be prepared for low energy, I bought a juicer and do green juices or vegetable juices..this has helped me some.. Ac is tough but you are tough!! Anyone who starts Ac or has a question, please ask, I am no professional but I will try to help tell you my experience, o one last thing, I got mouth ulcers, suck on ice during the administration of Ac during the chemo, also baking soda rinses , even if you don't think you need it! Your skin, nasal passages may get dry, so saline spray for your nose and oils for your skin to moisturize may be helpful. I am getting the chemo nails so I am using tea tree oil but not sure that is working, keep you posted! My final Ac is coming up this Wednesday, dreading and excited all at the same time, this has been a rough road but I am so glad I get to share all of this with people who truly understand!! I would appreciate any taxol tips as I will be starting that soon bi weekly, nervous about switching regimens... sending all my positive and uplifting vibes to you alll!!!!
Mar 27, 2021 10:32AM - edited Mar 27, 2021 10:33AM by LW422
Thanks, AB45. I have gathered up most of those things already; I was expecting to need them for Taxol but thankfully I have cruised right through it so far. I have iced my hands, feet and sucked on ice chips during each Taxol infusion since the first one, and so far I have not had any signs of neuropathy or mouth problems. I bought an extra soft toothbrush and make sure to use non-alcoholic, gentle toothpaste and mouthwash. Also I drink, drink, drink water... especially on the day of treatment and the following couple of days. Keep hydrated!
With my first Taxol I noticed an increase in my resting heart rate and had one episode of low blood pressure, which made me dizzy. That was the only time that has happened, but my heart rate has increased over my old "normal." Not sure what that's about but I have seen other people have the same.
You might head over to the "Weekly Taxol" thread and start reading; there is a TON of great info there. I'm so excited that you only have ONE MORE AC!!! Yaaaaaas, girl!
Mar 27, 2021 10:35AM - edited Mar 27, 2021 10:35AM by LW422
AB45--here's a link to the Weekly Taxol Group thread... https://community.breastcancer.org/forum/69/topics/788735?page=1
Mar 27, 2021 11:42AM JN5000 wrote:
I hope everyone is having a recuperative weekend!
I'm done with my third AC dose dense treatment, thank goodness. Now just riding out the side effects. The effects for me pile up each treatment -- more fatigue, more nausea, more discomfort. But only ONE left. One good thing about AC is that there aren't many treatments -- easy to count down, and halfway done after two, then only one to go.
I hope everyone can enjoy the weekend.
Mar 27, 2021 12:45PM LW422 wrote:
Great news, Jennie! I can't wait till I can say "one more AC to go!!" (Except then I'll be dreading my upcoming mastectomy...argh.) Hope you have an easy time of it with the last one.
Mar 28, 2021 06:36AM JN5000 wrote:
Hi AB45!! I'm am so ready to celebrate being done with AC! Congratulations to you on getting to the last one!!! My last is April 8. I hope you're recovering quickly from the last one. We're doing it!