Starting Chemo October 2021
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Hi everyone!
Yes, done with chemo and most side effects. Once I finished with the shots I felt improved, and now, 12 days after infusion everything is better: fingers still tingly though and foot rash not gone. But I feel so much better. Glad you didn't catch your son's illness. I think it was smart to wear your mask while he was ill. I've gotten used to them. Merry Christmas! Happy Holidays!
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Thank you, noodlesg, for posting what to expect with the neuropathy. It helps. I had my fourth taxol infusion today. The frostbite is getting better. Redness is gone. It's still tender and a little swollen, but improves every day I did ice today, but I wore a pair of warm cotton gloves to protect against further frostbite. It was still painful enough to make me cry during the infusion, but my fingers weren't as painful afterwards, so that's an improvement. Hopefully, I haven't done further damage.
Apparently, I am getting neuropathy in my face instead of my fingers and toes. My oncologist had to do some research to find out if that is even a thing, but apparently it is. I am feeling numb from my lower nose down to my chin, most dramatically in the upper lip area. Since it's only topical numbness and isn't affecting function, she isn't planning on changing the treatment. It's mostly just a strange sensation. It does motivate me to keep suffering through the icing, though, because I don't want it in my hands.
What is everyone doing for the holidays? My youngest sister brought her darling little boys down for Christmas, so we are going to go see them at my father's house for a family celebration. Hopefully, nobody gets sick again.
My sons are returning tonight from the US Open table tennis tournament. It's the one international tournament that we host in the US each year. That's another risk, so I will make them mask for a few days and get tested tomorrow. But, aside from nationals, it's the biggest tournament of the year in the US and one they really wanted to play. They won gold in both the junior doubles and Jr teams events. My oldest won silver in men under 21 years old. His little brother knocked him out in junior singles and took bronze in that event. It is strange for me not to be there, but they are old enough to handle a Vegas trip by themselves, and I don't honestly miss watching the games, as the ups and downs are stressful. It's actually kind of nice to just get the reports afterwards and watch their favorite points on their videos.
Happy holidays and I will pray that we are all able to enjoy our families without getting sick. That's my biggest fear at the moment.
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Hope everyone had a good Christmas! We kept it small, just a very close friend and her family, and we split the cooking which was nice. We also missed seeing family though. I think we over compensated for the fact that kids are not seeing grandparents for Christmas with an over supply of pressies. They had a blast
GRZ7279 - You must be so proud of your kids! How amazing! I'm glad they were able to get home and avoid all these flight cancellation nightmares I've been reading about. How are you doing this week?
I kinda get the feeling that most of the ladies in this thread have finished their chemo? I did my first AC y'day. Holy smokes this is the pits. Admittedly, my bloodwork was not stellar, and this was the first time my onco had offered to delay treatment for 2 days. I reconfirmed that my bloodwork was good enough to start, and just went ahead and did it, just to be over and done with. But wow! I've read up about it, but it's definitely something else to actually go through it. And I'm still on steroids. I will definitely not be doing the NYE countdown this year. Haha
Hope everyone is having a good week.
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Hi Noodlesg, glad you had a nice Christmas. Mine was very quiet too, we gathered at my son's house in the backyard and did our gift exchange. No cooking there, just a visit for the 7 of us. Yeah, you will most likely not want to celebrate late on NYE. I hope you feel OK and your side effects aren't too bad overall.
GRZ7279 wow, wow, your kids did great going off to the table tennis tourney and doing well! You can be justifiably proud. I am sorry for the frostbite and neuropathy troubles. I still have it in my fingertips and toes, and expect it will slowly improve as time goes on, at least I hope so.
Happy New Year! I won't be celebrating, there's no way I can stay up till midnight this year. So sleep with a pair of earplugs and a sound machine to drown out the fireworks is what I'll be doing.
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Happy New Year everyone! I had my last carboplatin/taxol infusion right before the holiday, so I was definitely not celebrating anything except being done with that part of treatment. I have one more taxol-only infusion later this week, and then on to AC next week. Has anyone had AC after Taxol yet? I'm nervous :-/
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Hello Ashbenderantsy,
I had the AC first and then the taxol. I've done 6 taxol treatments now and have 6 more to go. At the moment, I am waiting to see if my treatment will be derailed by COVID. My daughter tested positive on Friday. I still have no symptoms and have been self-isolating from my family, but am waiting for the results of the test to see if I can continue treatment or not.
At any rate, of the two AC is probably harder, but it's not unmanageable and some things are better. You won't have to ice anymore, so the infusions themselves will be much more pleasant. Mostly, AC reminded me of being pregnant with my twins because of the constant, mostly low-grade nausea. Since your body is already worn down from the taxol, you will likely be more fatigued also. My oncologist says that's the only difference from doing the AC first versus the taxol first. You'll be more tired by the end either way. I found that I had to take the first four days off work after treatments. On treatment day I mostly just slept. After that, I could go for a walk or something for exercise, but would then need a long nap. Eating was challenging. Try to mix up your diet as much as possible to avoid forming bad food associations because everything tastes awful and makes you nauseous. Protein shakes are important to help slow the weight loss. Generally, forcing myself to eat and exercise was my primary goal of the day.
The nice thing about AC is you do get a longer break. The first week sucks, but the second week everything becomes a bit milder. Mentally, I got through it by planning something fun to do near the end of the cycle when I felt decent to celebrate completing another one. And there are only four treatments so it feels a bit more doable than 12, which is just really long.
Ask for fosiprepitant. It's an anti-nausea drug that they infuse just before giving you the AC. Unlike the anti-nausea meds they send home, I didn't notice any extra side effects from it and it really worked wonders to keep me from vomiting those first few days. By the time it wore off, the nausea was annoying, but not unbearable. I hated the rest of the meds they gave me because they made me so drowsy that I couldn't really function.
I didn't have any trouble with the shots they gave me to boost the white cell counts. Those were no big deal. A quick jab for seven days in the belly fat. All in all, a breeze compared to everything else, but keeping track of all the meds and shots was a lot.
Best of luck. It's really not as bad as it sounds. Much shorter than a pregnancy and more breaks.
I know this thread has gotten quieter now that most have finished treatment. For those of us still slogging through, the end is within sight. We will get there! Unfortunately, I may not leave my room other than to go to medical appointments for the rest of this. And that will make it the longest period of abstinence by far that I have experienced in my marriage, which puts a strain on the whole family because my husband's temper rises in direct correlation with a lack of intimacy. A Covid surge was seriously the last thing we needed just now! Thank God for work. At least I have something to do and can answer phones and talk to patients.
Here's hoping that the end of this year will be far better than the beginning!
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Hello ladies, I hope everyone is doing okay? It's been a while since my last post. It seems that most of the ladies have finished their chemo. Yay! I've got 2 more to go, and I can't wait. Getting tired of this.
ashbenderantsy - I did Taxol before AC. I've just finished AC #2 3 days ago. Have you started AC yet? I would agree with everything that GRZ7279 advised. I am definitely more tired. My nausea has been manageable, and after about week or so, I start to feel more human again. My white blood cell booster shot is pegfilgrastim, so I only needed 1 shot 24 hours after infusion. To be honest, what's annoying me the most this week is taste changes. I've lost all interest in food. Even water tastes weird, and to think that I have about another month of this is just demoralizing. I need to change my mindset.
GRZ7279 - How are you doing??!! I hope you have managed to stay covid-free? I know we started chemo about the same time, and you must also be close to finishing. I hope your treatments aren't delayed. I am also scared of catching covid. My son starts school again this coming Monday, and with so many families having travelled over winter break, am scared he would catch it from school.
I am doing neoadjuvant chemo, and so I need surgery after all this is done. I had a visit with my breast surgeon a couple wks ago, and with the plastic surgeon this week, and it seems a bit surreal. I'm nervous about surgery, but I've been told that chemo is way worse. I have appointments made for CT scans and MRIs and it's all reminding me of the scans and tests I had to do when I was diagnosed. It's giving me quite a bit of anxiety.
Thanks for reading! Sending lots of positivity to everyone here.
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Hello Noodlesg,
I can so relate to the taste changes! I had the same experience with water. Honestly, by the end of the AC that's what bothered me the most, too. Not being able to enjoy food really sucks. I've been taking Zinc-Carnosine supplements for it, which seemed to work fairly quickly, although I didn't start them until a few weeks after the AC so it may have just been the timing also. Perhaps my body just finally got over the AC and the taxol isn't as bad with the taste changes.
I did my surgery before I started chemo. My cancer was multi-focal and with six tumors in there nobody thought that chemo would spare me from needing a mastectomy, so my doctor thought it was better to cut it out first. I didn't get reconstruction, though, and my understanding is that makes recovery more challenging. I figured I'll decide about reconstruction after I'm done dealing with the things I have to do. Honestly, I'm really glad I didn't do reconstruction right now because living with one breast is not nearly as bad as the idea of it was in my head. The recovery from the mastectomy alone was very easy. I was just sore and itchy for the first couple of weeks. Compared to chemo, it was a walk in the park. The prosthesis is comfortable and easy so nobody outside of my family would ever guess that I'm missing a breast. However, I'm also very small-chested to begin with so I can go out without the prosthesis if I wear a thick jacket and nobody notices that, either. I mostly just use it for work, given that my social life is still nonexistent.
As far as recovery from surgery goes, my one piece of practical advice is to make sure you put some gauze or something between the drainage tubes and your skin. That tube irritated the heck out of my skin and I still have a scar from that. The drains are a pain, but mine didn't need to stay in for very long. I was taking long walks pretty much right away and that seemed to help me recover fast. You really can't lift anything, though. You'll feel like you can, but it's probably best to listen to the physical therapists and exercise some restraint for a while. I did hurt myself one day by carrying a water bottle on a hike all afternoon without thinking about it. My shoulder was very painful for a while after that.
I did NOT catch Covid, thankfully. However, I had a heck of a time convincing the nurses of that fact. The demand for testing has far outstripped the supply in my community, so they couldn't get PCR results back in time for my treatment last week. After about 3 hours on the phone over the course of two days, I finally managed to get the charge nurse on the phone and she agreed to let me take a rapid test after I explained the limited contact I had had with my daughter and the way I'm self-isolating. So I was able to get my treatment and then finally got the negative PCR test back later that night. The nurses did tell me that my treatments would be delayed by a full month if I actually caught Covid, though, so I'm not leaving my bedroom until I'm done with chemo. I only have 5 more treatments to go and I really don't want anything to get in the way of finishing now that I'm so close. Besides, the kids have the week off of school the week after I finish and we had planned to go visit my mom in Arizona. I really need a vacation with my kids and I'll be in the middle of radiation for their spring break, so this will be the last opportunity before summer to escape and do something fun. Holding on to the promise of that trip is what's keeping me going right now and a delay would screw everything up, so I'm not seeing anybody, including my husband.
Other than being scared of Covid, taxol is going fine. I still struggle with fatigue, but I'm so used to it by now that it doesn't seem like that big of a deal. There are odd things, like my face being numb and my hands looking like I'm 95 years old, but those things don't really bother me that much. They're just a little weird is all. But this whole thing is just LONG. SO ready to be done!
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Hello all, checking in to say that 1 month after chemo ended I am feeling way way better. Still drinking lots of water! I am slowly getting stronger and less times I am fatigued or out of breath. So glad!
I have 6 more radiation sessions to go.
It is funny that now that I am nearing the end of "active" treatment, the horrible days seem to be "way" in the past already.
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Oldladyblue, how many radiation sessions did you have to do? Glad to hear you're feeling better. Looking forward to joining you in the post-chemo world in another month!
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Hi GRZ7279, I was scheduled for 16 sessions of radiation. It is going very well, I almost can't tell I am being treated, my breast has only slight swelling and no burns. So glad you will be done in another month with chemo! It is a tough thing to get through. Radiation is much easier in my opinion.
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Hi GRZ7279, thank you so much for your always super encouraging post, specifically the part about surgery. They always help me feel better, less anxious. Big hugs. I still haven't decided what I wantto do yet, but I will probably opt for recon at the same time as mastectomy because I don't want to go under the knife twice. Funny thing - I've always wanted to lose a few pounds right? Whilst discussing DIEP surgery, people often say the upside is you kind of get a tummy tuck. So at the mtg w the plastic surgeon, I joked "I have enough fat on my tummy for you to make 3 breasts. Ha Ha." He replied that he actually was a bit concerned that there wasn't enough to make one, so maybe I would need fat grafting from some place else. Seriously??!! I told him I have low tolerance for pain. End of visit.
I'm so glad that you didn't catch covid. I hope once your daughter tests negative, you can come out and join the family again. Omicron is starting to get really bad where I am, and I'm also super nervous about having treatments delayed if I catch it. I guess with AC making me so fatigued, I naturally don't go out anyway. I also have only a fewwks until my last infusion.
Your trip to Arizona sounds amazing! I think it's great you have that in the books, something to look forward to, after all this. We haven't travelled in forever, trips just keep getting postponed. I was just talking to my husband about rescheduling a trip that we planned and prepaid for many moons ago. The hotel that we booked isn't going to give us any more extensions, so we will be forced to set a date. Just thinking about a holiday makes me happy.
oldladyblue - Helloooo! Thanks for stopping by to say hi. It's so nice to know what you feel a lot better one month after chemo. During active treatment, it's hard to imagine, but hearing from someone who actually just finished is very reassuring. Glad radiation is going well for you. So 6 more sessions, and you get to put all this in the past?
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Hi to everyone! I'm also a month out from all active treatment and am feeling much stronger and have much more energy. My hair is even slowly coming back and is a pitiful 1/8 inch but I'll take it! I still feel the effects of the chemo, but hope in time that will pass.. Taste and smell is muted, but not completely gone like it was. I know it will take time. Sounds like everyone is getting closer to the end of chemo. Wish everyone the very best.
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Thank you, Noodlesg and GRZ7279! I made it through the first AC on the 21st and the first Neulasta on the 22nd. So far...not awful? But not great either. I'm really, really tired. Thanks for the heads up about the appetite changes - I'm usually a human trashcan when it comes to food, but right now, nothing is appealing!
Noodlesg, re surgery: my current plan is to have the bilateral mastectomy and DIEP flap at the same time because, like you, I want to get the hard stuff done in one surgery. A small problem has arisen in that my surgeons' hospital and my insurance provider are in a standoff over reimbursements, with the hospital going out of network on February 1 if nobody blinks! I am not looking forward to new consultations if I have to find new surgeons. That interview where they check out your belly is so awkward!
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Hi all! I hope you are all moving forward OK. Keep your eyes on the prize, the after-chemo world is so nice. Today is #16, my last radiation treatment. This was easy on me really. Almost no noticeable side effects. I will have Starbucks and chocolate to celebrate, in memory of chemo days when I could NOT have either coffee or chocolate without sad reactions (among lots of my other favorite foods).
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Hello everyone! Thank you Faith-over-fear and oldladyblue for sharing your post chemo stories. I'm so glad you're done with radiation oldladyblue. So have you now moved onto hormonal therapy? I hope you enjoyed your Starbucks and chocolate!
I can't wait until my hair starts to grow back again. I've just finished AC#3 and my eyebrows and lashes are almost non-existent. I only have 1 more AC to go, and the thought that my hair will start growing again in a little over a month's time makes me smile. This week's infusion was hard though, yesterday I slept for 20 hours, and I'm still tired today. I'm so ready to move on from this.
ashbenderantsy - I hope the issue with the insurance and hospital has settled? That's the last thing you need right now, to worry about changing surgeons. I can totally understand how you feel when the plastic surgeon checks out your belly. Eeekss! My husband was with me at that appointment. It was awkward to have (practically) a stranger squeeze my tummy right next to my husband, and also commenting on my body fat. I mean, even my husband doesn't do that! hahahha
GRZ7279 - Hi, I hope you're doing okay? You must only have 1 or 2 more taxols left to go right? We'll be crossing the finish line together in a couple of weeks
I know a lot of ladies in this thread have finished chemo, but if you're still reading, I wanted to thank all of you for your love and support these past few months. They have been some of the hardest months I've ever had to endure, and your words of encouragement mean so much. Sending lots of positivity to all of you!
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Hello Noodlesg,
Glad to hear you're doing okay. They weren't kidding when they said chemo is cumulative. The 4th AC treatment was definitely the hardest for me, but unlike me, you'll get to focus on recovering from it instead of diving right into taxol! I slept a lot with the AC, too. Actually, that was one silver lining. I slept really well when I was on the AC.
I'm doing alright. I don't have any eyelashes left, either. Wait, that's not entirely true. I have exactly one on my right eye and three on my left:) However, my hair is starting to come back. Just a little light peach fuzz right now, but it's a start! And I had to shave my chin this week. Go figure, those would be the first hairs to return. My nails don't like the taxol much. The fingernails on my thumbs and forefingers are way below where they should be, which is odd because I can't scratch things and picking up stuff is weird without nails. But that is honestly pretty minor compared to what the AC was. Thankfully, no neuropathy. I still cry during every treatment because the icing is so painful, but that's better than neuropathy.
I'm still self-isolating. Covid is sweeping through my office, so I'm definitely not going in to work or getting anywhere near my husband, as he's constantly exposed. The daily reports from the kids' schools indicate that they are also constantly exposed, so I'm staying put in my bedroom. I have 3 more treatments to go, so if I can just avoid getting sick, I'll be done on February 16. My birthday is the 17th and I'm feeling like being done with chemo will be the best birthday present ever!
I'm definitely tired of being stuck in my bedroom and missing my family, but I'm grateful that I've been able to come through this without anything going seriously sideways yet. The finish line is finally in sight!
Wishing you all the best and sending healing vibes!
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Oh my goodness GRZ7279 I am so sorry you are having to be stuck in your bedroom, but I certainly agree with you. I was hiding out from Covid too all during chemo and especially after my hospital stay. I am lucky that my daughter and husband were willing to help me stay safe by curtailing their activities also. I have known 7 people to have covid in the last month, including my son and his fiancee. It is sad to lose all of your hair, all over! I still don't have much, but it is coming back now. Finishing my radiation was so uplifting. The hard stuff is done.... wow, what a journey. Glad you are still icing, the neuropathy following me still is very annoying, so avoiding that is smart too.
Noodlesg I see my doc on the 2nd and will start hormone suppression pills then. I am hoping it will be easy for me, I don't take any daily medication, so it will be my first.... Yes, the Starbucks and chocolate was great! I did get heartburn after, but nothing that Rolaids couldn't handle. I keep stopping in this thread to offer a bit of rah rah rah!! keep going with a good attitude stuff. The end of chemo for me had me feeling like the struggle was getting to me, especially at night when I could barely turn over in bed from the fatigue, so I do want to share the hope with you that recovery goes well once the "self poisoning" is over.
Faith nice to hear your recovery after is going well too. I have a bit more hair than you do, but still feel like a bald man....
Try to be nice to yourself Ashbenderantsy getting through chemo involves a lot of being nice to self in my opinion. You made me laugh with your "human trash can" comment about your former appetite! That describes me well too! I too hope your insurance issues get sorted out quickly.
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Hello hello! Just stopping by to check on how everyone’s doing and to give an update on me! It’s been 2 1/2 wks since I finished chemo, and it’s so nice. Hair is starting to grow again starting with eyebrows and eyelashes, but it’s super thin. Getting more strength as well, and able to walk longer distances. Taste is also coming back, but the sides of my tongue is still kinda black. Some of my nails sadly are lifting off the nail bed. I don’t think they will fall off, but they are very tender. On the whole, am feeling much better.
I have surgery schedule on Mar 7, and had a covid scare last week. So I am now isolating myself, just like you did GRZ7279! A little over a week to go for me, and I will only leave home for dr appts. I have 2 next week, and need to also stop by to do some bloodwork.
How did your last Taxol go? You must also have completed chemo? That means everyone in this thread has finished
. How are you feeling? Would you be needing radiation next?
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Yes, Noodlesg, please do isolate yourself until your surgery. I got sick with Covid the day after I wrote my last post above, and it was bad for me despite the prior shots and boosters. If that was a "mild" case.... or what the news calls mild, I totally understand now how people end up in the hospital on ventilators. The first day of Covid for me was 5 days after I finished my radiation treatments, I had gone out 3 places in those 5 days, so am not sure where I got it. I made it through at home, in bed, with almost every possible symptom. Now I still have breathing and coughing troubles almost a month after the illness started with a bang.
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Oh no oldladyblue!! I had no idea you caught covid. I'm so sorry to hear you're still having side effects, I hope they go away soon. Thank goodness you finished your radiation before. Our immune systems are still weak even though we finished chemo. Has yr doctor suggested any vitamins to help?
The driver of the van that my son takes to school tested positive last week. Driver wasn't wearing a mask, and my son was exposed for 2 hrs. I moved out of the house. Thank goodness everyone is vaxxed and boostered.Sending a hug your way.
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Hello all!
So sorry to hear you caught Covid oldladyblue. I had it about a year and a half ago (before there were vaccines) and had chest pains for three months afterwards. My aunt has had it twice (despite being vaxed and boosted) within the past 6 months. Both times with almost no symptoms, but still having breathing problems. It's a very odd disease. I hope you feel better soon. It took a long time for me to completely recover, but the chest pain did eventually go away entirely and I haven't had any issues from it since, although the adriamycin did give me similar chest pain issues that didn't last for nearly as long.
Glad to hear you finished Noodlesg and I hope the isolating isn't too bad and won't have to last for too long. I find it odd that your eyelashes and eyebrows are the first to come back. It's the opposite for me. My eyelashes and eyebrows lasted for a long time, but they did eventually fall out. I have quite a bit of fuzz on my head now, but still no sign of eyelashes or eyebrows. Still have bald spots on my head, too, so I'm still wearing the caps.
I finished my last taxol treatment 10 days ago on the day before my 43rd birthday. We've spent this week in Arizona visiting my parents, which has been wonderful. We've been out hiking among the red rocks of Sedona all day every day and I feel stronger each day. Today my nose was hardly running at all, which is very odd because I haven't been able to walk around the block without dripping like a faucet in months. For the past two nights I have gone to bed and been able to stay awake for an hour talking to my husband instead of crashing as soon as my head hit the pillow. My nails look terrible, but don't bother me, and no signs of neuropathy. My husband has decided that since I'm finished it's safe for him to finally research all of the drugs they gave me and he's been peppering me with all of the frightening and shocking facts he just learned about adriamycin, so I figured it was safe to tell him the nurses wear hazmat suits to administer it. My family is thus duly impressed and giving me plenty of kudos. So, all in all, I am a happy camper.
Next up is the port removal on March 11, followed by the cat scans for radiation on March 16 and then I'll do five weeks of radiation starting on March 28. I'll be finished at the end of April. I've already made plans to celebrate by going to Disneyland mid-May with my mom, my daughters, my nieces, and my nephew. I figure the end of active treatment is a good enough reason to pull the kids out of school for a few days.
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Congratulations to everyone who has finished! I have 2 more ACs to go. THe first AC was pretty rough, but the second one was more manageable - probably because I figured out how to manage it :-)
I had mentioned an insurance coverage issue previously, but I'm happy to say that that has been resolved. I'm looking at surgery in late April or early May.
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Hi all, I'm sorry I ignored this thread the last few months. Thanks for the good wishes on getting better from Covid. It was awful. I totally see why that horrible sticky thick mucous has killed so many. It was like liquid plastic when I got it up. I seem to have all the side effects from Covid gone now except lingering brain slowness: chemo brain and covid confusion piled up on me.
Did you have your surgery ashbender? GRZ glad you had your port out. Mine is still there, the doc won't tell me when it is coming out, she just says we'll leave it for now every time I ask about it. Noodles I hope you didn't get covid, good that you moved out after your son was exposed. I can't imagine how sick I would have been without the vax and boosters. Gonna get the 2nd booster soon.
I am so lucky that I came out of all of this treatment with only a $321 copay for meds at the VA. I'm glad I didn't have the insurance nightmare some of you went through.
Hugs to everyone.
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