Chemo Starting August 2019
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on target take Magnesium Citrate at night (2-4 400 mg capsules) -- it is a constipation aid. Two-fer!
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Re nail issues: after some research I plan to get some vitamin E oil and tea tree oil. The questions is: is it better to ingest it ,(oils appropriate for ingesting of course) or putting a cream on my nails?
Or if anyone has insight on preserving nails, please share! I am concerned about the pain and suffering more than the unsightliness.
And - just had my husband shave my head! The poking feeling was drivingnme crazy, and the anxiety... Much better now. Do I need to put anything on my head though? I am thinking don't need to wash it .
Thanks!!
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Re nail issues: after some research I plan to get some vitamin E oil and tea tree oil. The questions is: is it better to ingest it ,(oils appropriate for ingesting of course) or putting a cream on my nails?
Or if anyone has insight on preserving nails, please share! I am concerned about the pain and suffering more than the unsightliness.
And - just had my husband shave my head! The poking feeling was drivingnme crazy, and the anxiety... Much better now. Do I need to put anything on my head though? I am thinking don't need to wash it .
Thanks!!
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I had my 3rd neoadjuvant TCHP chemo yesterday, and got great news from my MO! He said he was VERY impressed with how well my tumors were responding to chemo; my main largest mass has softened and shrunk and is "turning into (hopefully) benign fibrocystic tissue", and my cancerous lymph nodes went from being quite easy to locate and feel, to difficult to find. He had originally prescribed only 4 neoadjuvant sessions, but feels I stand such a good chance of reaching full pathological response that he wants me to try for the full 6, and reduce or eliminate the perjeta part as I've been having a hard time on that (had diarrhea and deyhydration so bad after round 2 that I needed to get IV hydration). I'm excited about the progress, but nervous about extending chemo with the risk of amping up SEs, but my MO was impressed with my proactive supplement care and thinks they are helping me handle the chemo well (besides the perjeta part, which I can bomb with immodium, but then just plug up totally and bloat horribly til my next bout of diarrhea).He also cautiously downgraded me from stage 3a to stage 2b, although nothing will be"truly" staged til surgery shows us what's what.
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Santa, thank you! I was taking the magnesium citrate in the AM, but I'll switch to PM!
Heartshaped- awesome news!!! So exciting to have such a great response to chemo!
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In2earth- congrats on just 4 more left! I have to admit that I'm not bothering with icing my mouth during Taxotere, it just seems like too much in addition to feet, hands, and head. I can't figure out how to keep my mouth iced that long! Luckily my mouth has been ok other than some loss of taste.
On the hands and feet side- I put those lower in the dry ice this time and they were a lot colder and unbearably painful. I am not doing them below -5C which is more bearable! They were more like -20C this time!
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Flowerkid - I can't recall which chemo you are doing. But some studies show that Taxanes make the nail beds very sensitive to UV light which is what causes the lifting. I have been keeping very dark polish on mine the whole time. I start with a 2 base coats of OPI Nail Envy Strengthener. Then add 2 coats of dark polish (black, wine, navy blue, dark green) Then a top coat. As the nail grows I just add more polish. I change it out every 2 weeks to a new color. And thus far, no discoloration, or lifting. Could be a fluke, but I'm going to keep with it. I also use a cuticle oil 2 times a day.
Heartshaped- That is amazing news. So glad to see that you're tumor is responding so well. Do you know what kind of surgery you plan to have?
OnTarget - Glad you are able to get your next chemo! It's must be exciting to be halfway!
in2earth - Good luck with Taxol!
I'm in between rounds right now. Feeling pretty good. A couple things I noticed. 1 - my resting heart rate has skyrocketed since starting chemo. It was around 63 pre-chemo days. It hovers around 75-78 now. I know that chemo, especially Herceptin can be rough on the heart. I'm still trying to get all my workouts in on days I feel well. I ran the other day, but it seemed way harder than before. 2 - I miss food so much. I still eat obviously, but it's the most unsatisfying experience ever. The food all just tastes like cardboard. When all the other side effects go away, the taste issues remain.
One other thing I wanted to ask if anyone else has experienced. So usually about a week after I have infusion, I have a day where I have waves of pain radiating all the way down my body. It usually happens after I change positions from sitting to standing. I double over it's so quick and hard. I definitely will ask my MO at next appointment. It just seems odd that as Neulasta pain is starting to wave, I get this random day later with major pain. It has happened both rounds of chemo too.
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AutumnGal- I haven't had the pain you have described. Thanks for the info on UV! I will change out my polish for a darker color! My nails are doing great, but no reason to jinx it!
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i still need to get genetic testing to weigh in on my surgery decision, but I do know my left (cancerous) side will be a mastectomy (very small breasts and relatively large mass with satellites, even though they're shrinking). I'd like to keep my healthy breast if possible (and take my chances with recurrence there), and just let the left stay flat. But if genetics show a BMX is a good idea, I may consider implants...
I had similar standing-up/moving around pain my first cycle, that blended into my week of neulasta pain, but nothing my second (nor ANY neulasta bone pain!) since switching from claritin to hydroxyzine (& nothing so far cycle 3 day 3).
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After the allergic reaction to my second cycle of Taxotere, my MO is switching me to Abraxane. I will continue with Cytoxan as well. The first two cycles with Taxotere basically don't count.
Beginning next Wednesday, I'll have infusions three weeks in a row. She is still working out my schedule, she said it might be two cycles, or four, or more. She does not yet know if I'll have a break after the first cycle or just go right into the next.
I am happy to be moving forward, but honestly I've been so fatigued after treatments that I feel weepy at the prospect of being exhausted non-stop for potentially months.
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I hate to be a broken record but I will again say that fasting or semi-fasting (Fasting Mimicking Diet) for a few days prior to chemo and through chemo day can be a BIG help in reducing SEs. A fast is protective to healthy cells of the body, and makes malignant cells more vulnerable. Anyone feeling really rotten should give it a try. It kept my SEs very decent though my anemia got bad by the end.
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Does anyone have any suggestions for liquids that are bearable? The thought of water gives me nausea so I’ve tried crystal lite which kind of works but I can still only take small sips. I really want to stay hydrated and the only things that sound good are root beer and lemonade! I really want to limit the sugar which I can’t with my current preferred drink choices
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elc75: Sorry you are having trouble tolerating water. I found Gatorade, Fresca, and water with fresh lime/lemon to be tolerable at times. If root beer sounds good to you, try it. Your taste buds will keep changing and you might be able to try other drinks as time goes on.
Good luck.
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Gingerade: water heated with slices of raw ginger in it, & strained hot or cold
kombucha (watered down)
smoothie with berries and lots of ice and a little kefir or yogurt
green tea
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When water started tasting off for me, lemon lime soda on ice was tolerable but super sweet (I normally never drink soda), and electrolyte packets helped make water taste a tad better. Going savory with broth was a better way for me to get hydrated without all the sugar- I made a lot of miso, chicken or veggie broth. I'd also make ramen and just make it more watery and add some extra miso, ginger and diced carrots.
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I had my third round of AC last Thursday, and this one kicked my butt. I was frighteningly weak and out of breath all weekend, having trouble even walking from my bedroom to the kitchen. Even today (day 6), doing the smallest chores has me gasping for breath and needing to sit- just things like standing to make a sandwich or taking out the trash or brushing my teeth are an effort. I’m fine when I’m sitting or resting, but just being up and walking is an effort. I don’t feel safe driving myself anywhere like this. I have another round of AC next week, and the thought of it scares me if this is cumulative. I know some women continue to work during this treatment, but I don’t know how they do it
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TexKat- are your red and white blood cell counts low? I'm sorry you are having such sucky SEs.
It definitely causes anxiety to think that the next round will cause wore SEs. At least at the end of the day you just need to show up. That's what I tell myself.
AC sounds really tough.
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OnTarget- my white count and ANC were both high when I had chemo on Thursday (Neulasta does a pretty amazing job of boosting those.) I’m breathing a lot better today, even went out to listen to music with friends and did okay. My oncology nurse fussed at me (very nicely) for not calling with my symptoms, and said they would have done scans to be sure I wasn’t having lung issues. I promised to be a more proactive patient next cycle, but it’s hard to think straight when you feel that tired and beat down.
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Hey everyone!
Hope the best to you all and minimal SEs. I still love reading all the posts, so nice to not feel alone in this!
I just woke up after my first Taxol and I think it went super well! I had a few depressed days last AC cycle, but now feeling much better. I have 3 Taxol treatments left now and then I am finished!
My biggest concern now is I did get my period and it has been in full force for 8 days now. My doc said don't be too alarmed unless it continues this way another day or two. Super annoying when I'm used to my extremely predictable cycle.
I also have to ask if anyone else has expereiced hemmoroids during treatment? I had a few very bad days of a flare up and found a good creme on amazon thank god because wow this is a pain I am not trying to relive haha!!!
Much love to all
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After the rash I got three weeks ago after my second Taxotere infusion, the MO changed my to Abraxane (still with Cytoxan), going to 3 consecutive weeks.
I had Abraxane #1a yesterday afternoon. I was feeling okay, a bit hot and sweaty in the evening but okay. I woke up at 1 am itchy. Yes, the rash is back, and unlike last time, it had me scratching myself raw. Benadryl at home did nothing. MO wanted me to come in. Now she thinks I'm allergic to the ondansetron (antinausea pill). I don't think so, because last time I continued taking the ondansetron for a week and the rash faded and didn't come back. I asked if it could be the Cytoxan, and she said no. Odd.
In the end, they gave me benadryl through an IV (had a long wait for a chair). I have to pick up RXs for hydroxyzine for itching and prednisone (which will keep me up every night) for 5 days.
So I don't know what happens next Wednesday 10/2. It might be Abraxane #1b, or maybe back to Taxotere??
Also, I have to switch to a new health insurance on Oct. 1. Abraxane needs preauthorization, which I've been pressing all involved to get in the works. If I'm staying with Abraxane, I don't want to miss it 10/2 because it hasn't been authorized.
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TexKat- interesting about the SE's. I have really high RBC and WBC after Neulasta and I have been getting really out of breath, tired, weak on day 2 after chemo. I don't know if it is the chemo or the Neulasta. I also get a low fever that gets worse if I exercise or do much of anything. After two days it goes away and I get back to normal.
i2earth- I've had major constipation, but no hemorrhoids yet. Sorry for the endless period, that sucks!
GoMama- I hope that they motivate to get your stuff organized on time! And I hope they figure out the rash- having an itchy rash does not sound fun at all.
My update: I'm over a week out of TC #3. My SE's are minimal- just the fever/tired/weak/headache for two days or so (days 2 and 3 after treatment). I also get hot really easily for the first week after treatment and I can't stand to be in the sun for long. So far no hand/foot problems, and my hairs are hanging in! Most people can't even tell my hair is thinning unless I point it out. So good news there! My sense of taste is impacted but it gets better the further I am from each treatment.
I'm super excited to be done this, so just another week and a half to go!
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Hi August starters!
I just finished round 3 of AC yesterday. One more to go! I'm thrilled to say it has been much easier than I anticipated, especially since MO said it would be the tougher of the two (other one being Taxol). Typically, I've felt good on Fridays and start to get tired on Saturday afternoon. Sunday (Day 4) tends to be my "worst" day, but that has only meant low energy, not much of an appetite, funky stomach, etc. A little better on Monday and nearly back to "normal," whatever that means, on Tuesday. I've just started to have some rawness in my mouth, so they prescribed the Magic Mouthwash that I'll pick up today. I have given up coffee and diet lemonade which were giving me heartburn and started taking a Pepcid each day. Still able to drink water, but have switched to "Smart" water or alkaline water, which another breast cancer patient recommended.
Worst part of the whole thing so far has been the hair loss. Around infusion 2, my hair started falling out. I didn't cold cap as MO said it would be a waste of money. By the Sunday after infusion 2, it was coming out in clumps. So distressing. A week ago Tuesday, I had my head buzzed and picked up my wig. Everyone tells me how great the wig looks, but I'm pretty sure they wouldn't tell the cancer patient it looked bad - except my husband. He'd tell me. And, he says it looks awesome. I've been wearing the wig to work and out to dinner, but I braved it with just a baseball cap to the mall last weekend and only felt like I got a few sympathetic glances. No stares. I don't wear it at home.
Big weekend this weekend! It's Homecoming at my daughter's high school. Game tonight and she was selected for the Court. So, my husband will escort her on the field at halftime to be introduced. Tomorrow night is the dance, so lots of pictures and festivities. I think I'll be fine tonight, but am nervous about my energy level tomorrow evening. Any tips for energy boosters? I'm thinking my excitement/adrenaline might get me through, but would love to hear any suggestions you all may have.
Happy Friday to you all and I hope you're feeling good no matter where you are in your cycle!
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HouseOfKards- we're on really similar schedules with AC+T. I get mine on Thursdays, and am one week ahead of you. I have the same experience with which days are hardest, but did find that round #3 left me much more tired than round #2. The effects are cumulative, and we are a little weaker going into each round. My hair started coming out in clumps the same time yours did (right at 14 days after the first treatment), so I also had the rest buzzed off. Doesn't it feel weird? I bought two wigs that I think look good and a lot like my own hair, but haven't worn them yet. I'm finding caps a lot more comfortable.
Be prepared to rest a lot this weekend, and enjoy the Homecoming photos
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I'm on my 2nd day since my first Taxol. I woke up soo sore. My throat and tongue are really stiff. I'm not taking any steroids now so I knew this pain was coming, but it just really sucks. I've been in bed all day. Honestly AC was easier at this point because I had the steroids to buffer the pain. My cat has been cuddling me all day so that's helpful at least
@houseofkards - I hope the homecoming is a lot of fun!! Maybe you could get a nap in before photos and everything to help with the energy. That's usually my go to, or just a teenie bit of coffee. I find even low caffeine levels really help me when I need it.
@ontarget - Haha oh you are so lucky ! I must just be hemmoroid prone or something. Feels like childbirth my god.
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Hi everyone - I am laying around after my 3rd TC on Wednesday. Most of my side effects seem the same - - just getting tired sooner and longer.
I can relate to being out of breath often. Not severe like someone described but enough to make me think twice about stairs and exercise. I am frustrated that I keep gaining weight but have no motivation to exercise.
Time seems to be going so slowly. Used to be 3 weeks would streak by. Now it seems like forever.
@gomama - I am frustrated for you. The set backs and delays feel crushing, plus struggles with insurance.
@houseofkards - pepcid was not enough for me. My doc switched my to prilosec. Much much better on the heart burn and general stomach upset.
@in2earth - thanks for starting this and continuing to post. I feel your energetic spirit and enthusiasm coming through.
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Morning!
I was supposed to have chemo last week, but it got delayed for a week. I almost cried when he told me. I was having some abdominal pain, and they wanted to rule out some things before pumping me full of meds. I got the results, and everything looks good, so I should be set to go for this week. It will be my 3rd round (halfway point) for the Taxotere/Carboplatin potion.
I've been doing well. Still doing cardio exercise daily, and doing some strength training a few times a week. The hot flashes and night sweats are killing me. I am not getting good sleep at all, which is the most concerning thing of late.
I know its a little early to be worrying, but I can't stop stressing about the anti-hormonal therapy. I'm only 37 and the thought of menopause scares me. My ER and PR percentages are so low too, which frustrates me that the anti-hormonals may not be very effective. My turmor was more HER2 driven. It's looking like I will be doing OS+AI. I'm not a good candidate for Tamoxifen due to severe endometriosis. Everyone says to take it one step at a time, but it's difficult to not worry about the next step.
It's been a few days since anyone posted, so for those of you who recently had infusion, hoping you're all feeling better.
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@TexKat - Yes, my Sundays keep getting slightly worse. Nothing terrible - just really tired, funky taste in my mouth, no appetite, etc. Thankful that I just have one more to go! Then, I'll need to adjust to the Taxol SEs... Please keep me posted on your experience when you switch to Taxol.
@in2earth - I was able to take a little nap and made it through the photos. We went to a friend's house afterwards for wine (I didn't have any - I do miss wine!) and cheese and I hit the wall around 8 pm. Could barely keep my eyes open. I made it through the important part though. I love seeing my daughter dressed up since she is normally an athletic shorts and t-shirt kind of girl (lacrosse player). : )
Hope everyone has a great week!
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@houseofkards - that sounds like it went pretty well! besides missing the wine. I'm sure your daughter was so happy to have you there
Personally I am having such a hard time on Taxol. I thought AC was a breeze compared to how crappy I've been feeling. The actual infusion went better than AC, but I'm just so achey and so exhausted with no motivation now. I'm not taking any steroids which I believe is the cause. My resting heart rate seems really high too. I just overall feel super weak. I have 3 more and I'm dreading it. On AC I was freaking unstoppable haha I think Taxol is managable though, I haven't needed any nausea pills. I'm just in that almost done but not quite done depression. I think I stopped gaining weight though
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AutumnGal- That is really tough to be low ER/PR and still have to do the OS + AI. I'm dreading it as well, but at least my ER/PR are very high. I would feel pretty unhappy to have to take them if the benefit was very small. I've already started the OS (although I'm off it during chemo and instead in "chemopause"). The sleep problems are pretty bad and it is daunting to think that bone pain may come next.
in2earth- my heartrate goes up too the week after treatment. I also get out of breath easily. I hope yours levels out soon! I had a friend who went through AC+T and she said that Taxol gave her the "blahs" and she just laid around and had zero energy for anything. So you sound pretty normal, although it sounds sucky. You'll be done so soon!!! Yay! I'm trying not to worry about it too, but I feel like I'll end up aged early. Does a lack of estrogen make you look old in addition to feeling old? I've been wondering..HouseofKards- I'm so glad the wig looks good and that you made it through the event!
My SE report- my hands have started itching on the palms (1.5 weeks out of TC #3). The balls of my feet too a little, but mainly the hands. They don't look dry or anything, but they have a burning/itch. I'm trying to leave them alone. Sometimes it is almost as bad an itch as poison ivy!
I also have a weird gastro thing- maybe it is heartburn? I've never had heartburn so I don't know. But I have this sort of pain in my chest/sternum area that feels like it is in my esophagus or something. It is worst at night when I lay down, but I can feel it lightly all day long. I tried TUMS but that didn't fix it. It isn't terrible, but it is uncomfortable. I sleep slightly inclined because it feels better to have pillows under my TE's when I turnover, so theoretically that should combat acid reflux (whatever that feels like). I'll mention it to the MO when I see her Friday. I'm wondering if they'll let me take B12.
My resting heartrate is back to a lower number, which makes me happy.
I've also had a little wine at various parties I went to last week. No idea if that is tied to any of the SE's, but I'll be wine free until my next chemo so maybe the SE's will go away.
My hairs are not coming out too much these days, so still a full head o' hair mostly. Just one more treatment, so I hope they'll hang in there.
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@in2earth - Are you doing weekly Taxol or dose dense (every 2 weeks)? Why did you stop taking steroids with Taxol? Was that your choice or the doctor's?
MO keeps saying that Taxol is easier than AC, but the more I read here, the more nervous I'm getting!
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