Chemo starting October 2017
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So I made it to the grocery story today. In lieu of my usual chemo cap, I opted to wear a ball cap with hair attached. similar to this.
https://www.headcovers.com/cardani-classic-bob-bas...
I felt less conspicuous, which was nice, but midway through the store I started to overheat. I had to get to the bathroom and take off the hat for a few minutes. Now I'm not sure I could make it through a wedding and reception with a full wig on!
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Thank you Peoy,
I'm on the very same plan. Just didn't understand that it extended the infusion time. Now it makes sense.
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How’s everyone REALLY doing? Like emotionally? I am more emotional than I’ve ever been. I’m trying to give myself permission to do that but it’s hard. Was round two more emotional for you all than round one?
Sitting in my comfy chair, knitting, drinking my green juice after a good cry.
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Hi,
I hope everyone is doing well. I was hospitalized again for a febrile neutropenia after treatment #2. So next week my taxotere will be decreased by 25% and I will be put on neupogen for a bit longer and on antibiotics preemptively. Next cycle is my last taxotere, after that it's supposed to be CEF which isn't as bad on white cells as taxotere is.
Regardless of that, I will still be on neupogen because my oncologist doesn't want to take risks any more.0 -
dya. Other than the hospitalization show have your SE’s been on Taxotere? That’s my next drug. Glad you are on the mend.
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Joyseeker- the emotional hit me hard during round 3. It was a rough week or so for me. I also had my uncle tell me that week, I needed to make all these family nofications that I have cancer. I was feeling so low, I couldn't even deal with making normal phone calls, paying bills, getting errands done.
Round 4 was yesterday and feeling better. Maybe it's the steroids or thinking more about thanksgiving, spending time with husband/daughter and a little online Black Friday shopping planned.
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Lisa- I like the hat. I was given my beenies from that company Headcovers unlimited and they are all nice quality. I returned everything I bought from tlcdirect because they were such poor quality.
I have buyers remorse with my wig. Paid a lot and I find wigs uncomfortable and hot. I still need one for holiday parties and such, I know I would feel more conscious in wearing beenies to events.
I find I get overheated more now. I was just running errands with my AC on in my car and it's 50 degrees outside. I get woozy and nausea sets in, if I get hot.
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Joyseeker - I am on herceptin as well as taxotere so I'm not 100% sure if the side-effects come from the taxotere or the herceptin, but here they are:
- I developed a reaction to taxotere on the second cycle. After 5 minutes in, I was gasping for air. They had to give me Benadryl before resuming the infusion. The second time I noticed it really burned a lot close to the insertion spot. I was ok afterwards though. Next cycle I will get benadryl before taxotere. It seems to happen fairly frequently, there was a gal right next to me that was getting her first taxotere and she got a reaction too.
- There is this weird symptom which lasts maybe 2-3 days, which I can only describe as time being dilated. Music appears to play slower than usual, as if I was in an inception dream. I have a heart rate monitor and during that time my heart rate goes way slower than usual (my average is ~78bpm, during that phase the average is ~50bpm).
- I get a little bit of tingling in my fingertips the first 3-4 days. Right now, though, my fingertips skin is flaky and breaking. It's really wierd. I still have normal sensations though.
- I get really dry and pasty in my mouth. My cycles are every 21 days, but it lasts at least 15 days. The inside of my mouth gets super wrinkly, any fatty food tastes like eating a cold stick of butter. Unless I didn't take care of keeping my mouth moist and clean, I'd be full of sores.
- The obvious one is that it completely wrecks my white cell counts apart. Being hospitalized has been the worst side-effect for me. I have a young daughter that goes to daycare, so it's like an open bar for contamination.
Despite all that, taxotere has been working really well with my cancer. My tumor has shrunk quite considerably, and has lost a lot of density. All that after 2 treatments.0 -
Thank you for starting this discussion board, it helps to know I'm not alone in this - strength in numbers!
I'm tired of not feeling like myself and that's mostly due to not getting a good night's sleep for over three months, I am definitely on edge! Like others I've struggled especially in the first week of treatment but I take the anti-naseau meds and Claritin and the second week gets better and then I start over. I mostly always have a stomach ache and eating and lots of water seems to help.
I don't like wigs, beanies, or hats, I tend to overheat, but it's harder for a woman, I see bald men walking around all the time! So far a ball cap has been most comfortable and I guess that's because that was the only hat I previously ever wore. Enough about my life has changed, I don't feel like wearing scarfs! I wish I could embrace it and wear the flame covered do-rag but that's not me either.
Happy Thanksgiving and thanks again for being here.
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Hi, Trees - Happy Thanksgiving. I'm glad you found our group.
Are you done with your AC now and moving on to Taxol? My doctor told me that nausea isn't really a problem on Taxol so maybe you won't have to deal with that soon.
I get a lot of hot flashes now all the time and they really can make my wig hard to wear. I've done best with light cotton scarves. I also just shaved my head smooth and may go bare out in my neighborhood - not sure I can do work or a social event like that yet.
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Hello AgathaNYC, I have one more AC on Monday and then weekly Taxol for three months. One month of radiation after that. I was premenopausal when diagnosed and I still don't really know what a hot flash is as I usually have that symptom at night. My sister gave me the best advice for the night sweats, I'm wearing old running shirts made of moisture wicking fabric (no cotton!) and that helps a lot. I've been trying to stay up later and actually the last two nights I've slept pretty well, that is with .5mg Ativan which I use sparingly. Taking meds wasn't previously part of my normal either (post everything my oncologist says 10 years on meds!).
I'm still getting fluid build-up post surgery, the drain tubes have been out for a while but the doc is considering another "small one" if this build-up won't stop. I've gone in to have them manually drain four times. I love to run but that seems to increase the fluid so I'm not running until that is under control. Anybody else go back to drain tubes? Doc says run if I want to and we'll do the drain tube like NBD but those drain tubes were no fun.
I want to give props to the women here with small children, my physical and mental energy level has been so low and I can't imagine, though they're such a joy, hopefully it creates some balance and wears you out so you can sleep?
I have found some beautiful scarves but it does feel like Halloween for me, maybe I'll get used to it. I do feel sort of compelled to go out comfortable and let people see, this is me with no hair, it happens!
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Sara, I've been emotional all week, too. It's the worst physically I've felt in years, maybe decades, and it's greatly impacted my mood. I had a good cry yesterday, too, because I didn't want to eat or drink anything cause they taste so bad, and I need both to keep up my strength. Yesterday, it seemed like all the joy in my life had been sucked out by cancer. And I have to say that I felt quite sorry for myself.
I'm hoping being around my extended family today will help lift my spirits. This really is a dreadful disease and it's hard to feel thankful when you're fatigued, bald, and hungry. But I'm going to go take a shower and hope I come out feeling rejuvenated and more positive. It's bad when you can't stand being around your own self.
Happy Thanksgiving, everyone. Hope your turkey tastes like turkey!
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Happy Thanksgiving Everybody,
I'm having a lay low day as I am on day 3 after my last and final AC so I decided to make things easy on myself. Picked up individual turkey and dressing dinners at a high end deli. Made green bean casserole and sweetpotatoes. Bought a pumpkin pie and lefse. My son is coming over today to dine and put up my tree.
I declined invites to the big shindigs. This is exactly how I want to spend my day.
I hope you all are having the exact kind ofThanksgiving celebration that you want to have.
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Lisa. I’ve had a bit of a turn around these past two days. I’m grateful for that. Going outside in the sunshine really helps me.
I wake up at night and all I think of is my diagnosis. It’s awful. I used to be such a good sleeper. I just want a full solid night again. I’m sure that lack of rest impacts my mental health.
My daughter and husband went to Calgary today to be extras on a Canadian TV show called Heartland. I’m so sad I couldn’t go. And I’m so mad about the things I’m missing out on. I just want chemo to be over and done with. I keep thinking that when our baby calves arrive (February) I’ll be finished.
Thanks for everyone who posted about Doxetal. It’s my next drug and it terrifies me. I’ve tolerated this first rounds well but whenever there is a change I am full of anxiety. One more FEC then I switch at the end of December.
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Simbobby. Sounds like a perfect Thanksgiving 💕.
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Lisa- I completely understand how you feel . I'm feeling so down this Thanksgiving. This has always been my favorite holiday enjoying family and friends. But since I had my AC #3 on Monday i am feeling nauseous, tired, and depressed. My sister is coming over and bringing food so I am thankful for that. This truly is a dreadful disease your right. I'm trying my best to be strong. Happy Thanksgiving!
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I want to wish all of you who celebrate it, a very happy Thanksgiving. The rest of you, I wish a beautiful day that brings you much you are thankful for.
My third round of TC was scheduled for yesterday. When they took a look at my arm where the chemo leaked they decided they cannot do chemo through IV on my right arm, and the left had lymph nodes removes so that's a no go also. I am having a picc inserted tomorrow and will also have round 3. Upside to the delay is that I get to taste my food today and I'll have more energy than if I'd been chemo-ed yesterday.
My blood work was all clear and good. My blood glucose was high and my onc says this is so normal with steroids she'd be surprised to see it at a normal level. I usually have my blood draws the day of chemo having started my steroid the night before so this was good information to know. I've been eyeing that high glucose and wondering if diabetes was going to be my next hurdle.
Round 2 se's were, dare I say better than round 1. The fatigue however was much worse. It started earlier, lasted longer and was harder. I think I spent about 7 full days useless.
My taste buds were impacted for longer as well and I caught myself not wanting to eat. It's amazing how different the taste changes day to day. I kept sampling things until something was okay. My poor husband. I'd send him to the store with a list to stock up then need him to go back the next day for different options. He hates shopping. That man is a rock though. I'm so fortunate to have him in my life.
I've had minimal nausea and no vomiting for rounds 1 and 2. I took the zofran for round 1 as directed and it gave me a headache for days. They gave me a new script for round 2. Its also an anti-psychotic. I think they are trying to tell me something!
I filled it and kept it on hand just in case but did not need it. At this time, the only drugs I'm taking are omaprozole, claritin, and 1 stool softener ask me about the 3 days I ran out! Never again while in treatment. It ended with a dose of milk of magnesia, the world's most vile liquid. You know what though? I couldn't taste it a bit! Score 1 point to the benefit column of wrecked taste buds.
Again, may you all have the most beautiful day possible.
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Tree100,
I started chemo about same time as you and our chemo regimen is same. But I will have surgery after chemo. My SE is getting harder after each AC round. It seems Taxol will be less harsh. I think you will feel better soon after this most difficult time.
I am fortunate that Thanksgiving is in my second week of the AC3 so I have enough energy to enjoy it. But I try to avoid crowd and most of time I just stay home. I am nervous for next week AC4. I am premenopausal and I have hot flashes at night too.
Tri-lady, my sister is here to help me too. She cooks for me, takes care of my 10 year old. I am so thankful for that!
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@ joyseeker i feel for ya i would have been beside myslef to miss Heartland. I hope your kids had great time being on the set. Letbus know when it airs.
Period started on sunday and is very light woo lol lots os hot flashes at night time. Hope its an end to my cycle. One thing i wont miss!
Happy thanksgiving ro all celebrating Today i hope your dinner tasted faboulas
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Lisa - congrats on getting AC #4 done and sorry to hear it kicked your butt. That's no fun. Period. Baby yourself, rest and sleep as your body calls for it. And know that you are loved and supported here by the rest of us. And thank you for being one of the forerunners in this forum so the rest of us can follow your experiences and learn from them. You have been very helpful throughout this cellular roller coaster ride!
Sara (Joyseeker) - Round 2 was hard for me emotionally too.
While I don't find I can cry much (I'd like to get some tears going longer than 45 seconds, would be a good release!), they were always there hovering and leaking. I was stuck in a major depression, lost hope, wondering why bother with this awful treatment (even knowing that my tumor is shrinking), could not find anything to live for, hating my life and couldn't imagine getting pleasure out of anything - the future was bleak. A week later, I popped out of it, was able to work for a couple of days, go to my improv class, and a women's support group (not cancer), and I'm a completely different person.I'm a cheerful, loving, upbeat person much of the time. I read in a few posts that steroids are the likely culprits and that has me entering the days just after Round 3 with hopefully a new tool to manage when these steroids wear off. Had chemo yesterday and today is already better than was last time. But I also went to acupuncture IMMEDIATELy after the infusion instead of a few days later, and I think it made a big difference too. We shall see. HUGS to you! There was one supplement, Natural Calm (magnesium citrate) I meant to share with folks here that has helped me before cancer hit with anxiety, and it has a stool softner effect when used at maximum dose (find your magic amount and by golly, it's a nice addition to the arsenal!). Of the many recommendations and things i was taking, the naturopath I started seeing just before chemo approved of the Natural Calm (and he only approved of half the things I was taking).
Also, My MO got me off of Turmeric and I so I researched that because I had read so many supportive research papers and articles about turmeric. Turns out turmeric does attack cancer cells, but it is contraindicated with some chemo drugs because it makes cells chemo-resistant. Great for the healthy cells, but reduces the efficacy of chemo to all cells, including the ones were going after, up to 70%. Sooooo,.... lesson learned is to add turmeric back into the diet AFTER chemo treatments are done!
Wishing everyone a good to decent to great day! ~ Lea
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Jennifer - I totally know what you mean about picking over your blood test results. I do the same, obsess when my WBC or RBC numbers are below the normal range, etc. etc. But so far I keep getting the go ahead. Yesterday was a go ahead, and then the Manual Differentials results were released today and a few new things popped up. Oh - I just read that you had your last AC as well! Yay! I can't believe you had to do this with small kids, too. Can't even imagine.
Interested to know if anyone has any experiences with some of these test results from their Manual Differentials:
Elliptocytes 2+; Teardrops 1+; Left Shift 2+; Toxic Granulation Present; Dohle Bodies Present
3 of these never showed on previous tests, so I looked online - apparently some are present when there's inflammation and infection present (sepsis sometimes? yikes, or a bacterial infection). Of course, I don't like seeing this, but I'm not symptomatic, no fevers. Might this just be a cumulative effect? I will call the triage nurse tomorrow, but just curious if anyone else has experienced this.
Jade - thanks for mentioning the Glucose results being high on the Metabolic Panel. That was a new one for me too this last time around and now I'm a little less concerned. Thanks!
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Good morning, ladies. It's 5:30am and I'm happy to report that I'm feeling much better today after a good night's rest. My husband and I were able to take a 20 minute walk yesterday, and the sunshine and fresh air were just what I needed. I had to force myself to stay awake til 8:30pm, but I did it! And then I slept through the night, less 2 potty breaks that I can't seem to break out of. I'm so thankful for a decent night's sleep.
Yesterday was good. Spent most of the day with my family either playing games or making food. I still haven't recovered my energy yet, but I'm learning to just do what I can do without feeling too guilty about it. My cousin's daughter has a new baby and I got to snuggle with him a lot. What a stress reliever it is to hold an infant! Dinner was just okay because my taste is still off, but I was able to enjoy a few things, such as the mashed potatoes and pumpkin pie. Other things that I love (fruit salad, chocolate cupcakes!) were bland and tasteless, and finding something to drink that tastes good was difficult, but I'm slowly recovering the ability to taste, and for that I'm also very thankful. I don't think I realized how much food means to my emotional health!
We're headed to our lake house today and I'm looking forward to building fires and watching the birds. My kids are staying back to spend time with their friends, but we'll return on Sunday to spend some time with them, especially our oldest who lives away with her husband. So I do have a ton to be grateful for, and I'm hopeful that the my low point was brought on by the cumulative effects of AC, never to be repeated again. If it kicked my tumor's ass as effectively as it kicked my good humor, then I'm going to be just fine.
12 weeks of Taxol begins next week, so another hurdle has been passed. And every day that passes is one day closer to the finish line! Thank God for that!
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I found baking soda is amazing! I had bleeding gum for several days, then I used baking soda to brush teeth for two days, my gum stopped bleeding!
Next week is my AC4. It will be a tough fight! Then 12 weeks of Taxol starts in a local new cancer treatment center.
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If there are any Christian ladies in this thread, or those who are open minded to faith, this book is wonderful
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Had AC #2 this morning. Was so tired when I went in. I'm not a morning person AT ALL, and my appt was at 8:15am. I got no sleep last night. Not wanting to oversleep, I decided not to take any ZZZQuil or melatonin before bed. Went to bed at midnight (a bit later than I had intended) but couldn't even begin to fall asleep until about 5:30am. With my alarm set for 6:50, I don't think I even got a solid hour of good sleep. Had a nice Thanksgiving yesterday making the rounds among family, but it didn't occur to me until I was getting ready leave this morning that maybe a Pepsi at 4pm wasn't such a good idea.
Infusion went well. My WBCs were back up in the safe level, but I have to go back on Monday for a Neulasta shot (I guess they don't offer the Onpro here; they also don't offer cold-capping). Plan to start Claritin this weekend and hope it works.
My first round, I took my anti-nausea pill (ondansetron) before bed the first 4 nights just to be on the safe side. Then by day 3-5 I was taking oe during the day as well for stomach discomfort that wasn't quite nausea, but I didn't want to risk getting sick. It turns out I had developed acid reflux (never had it before & rarely ever had heartburn before my first chemo). I decided this time to trust that the ondansetron & steroids given in my IV pre-infusion would be effective for 48 hours as the nurse had told me. Had lunch this afternoon but then later started having some stomach discomfort. I thought it might be the start of another acid reflux attack, so I took a pantoprazole for that (probably should have started yesterday or sooner). But as I was just plating up my dinner this evening it became actual nausea & vomiting. UGH!!!!
Took an ondansetron as soon as I felt it was safe to do so without immediately getting sick again. A couple hours later, tummy still feels a bit unsettled, so now having some ginger tea, since I can't take another ondansetron until 2am.Upon doing some online research I discovered the fluoxetine (generic Prozac) that I'm on can compromise the anti-emetic effect of the ondansetron, so I guess I'll have to go off that for the next several days. There seem to be no adverse reactions with alprazolam (Xanax), so if I feel my depression coming back on I can at least use that in the short-term. As soon as I can I'll be taking a list of all my meds & supplements to the pharmacist to determine any other potential interactions.
Thank you Voilalia for the info on turmeric. I've been taking it daily for the past 8 months or so for aching knees. After a few weeks I noticed my knees weren't bothering me as much. Over the past month or so I've often forgotten to take it and have noticed in the past couple weeks that they're frequently aching again. In researching online, I found that it apparently doesn't interfere with my chemo regimen (AC, then Paclitaxel & Herceptin), but I'll definitely discuss that with the pharmacist too.
Fingers crossed I can get a decent night's sleep tonight & keep ahead of the nausea from here on out.
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Also, I started shedding the beginning of last week. By Friday my scalp was feeling quite tender and by Saturday my hair looked like hell and I was fed up with the scalp discomfort. So I cut it off with scissors as close to the scalp as I could (looked like a baby bird
) and then shaved with electric razor. Still had quite a bit of stubble, so waited 24 hrs before shaving again with my regular Venus disposable razor, but didn't want to apply too much pressure & risk cutting myself, so I do still have some short annoying stubble. Will that eventually shed out as well? For a couple days it was still a shock to catch sight of myself in the mirror, but I've started getting used to it. Though living in the Great White North I won't be going out in public without a head covering any time soon! 0 -
re turmeric, I started that also and then found it interfers with protein pump inhibitors, I'm on nexium for chemo induced gastritis which my dr advised I'll need until one month pfc. I had a gnawing pain and discomfort that occurred even drinking water, felt like a narrowing, and finally was waking me up. No acid reflux at all. The 40mg nexium daily is amazing. I had mylanta for the first 1 1/2 days before nexium kicked in and haven't looked back. I'd encourage anyone with similar symptoms as me to talk to your mo if youre not getting better. And will start turmeric after drugs are done
When I went for my first wig try on day the owner said some women will soak their wig liners in cold water before putting them on during hot weather. Haven't tried it but can see the need in summer, when herceptin and eostrogen blockers start. I keep wigs for out side the house and love head covers bamboo turbans which I jazz up with a scarf for around home. I'll only go 'free ' if it's just hubby and me. I detest being balD!!!
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TabzIsMyAngel - congratulations on being half done with AC! I hope you got a good night's sleep.
Please be careful with not taking the fluoxetene consistently. Antidepressants are tricky and it's not good to start and stop them unless you are doing it just as a doctor advises. Unfortunately I have a bit of experience with them.
As far as the stubble, I just finished my AC treatments and I didn't lose all my hair. What I have left is still growing!
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Thanx Agatha. I'm hoping to only have to skip today's dose. I only had some minor nausea today and a bit of acid reflux. If I don't have any nausea tomorrow I won't have to skip another dose.
I didn't get to bed till 3am last night. I got sick again about midnight when I decided to try to eat a few saltines in hopes of settling my stomach. I only managed to get down 3/4 of one cracker before I got sick. Stayed up till 2am so I could take another Ondansetron, but still wasn't comfortable enough to be able to lay down. Once I felt ready to try to go to bed, I took a Xanax & slept pretty well. Woke up with no nausea this morning, but really no appetite either. I've noticed since my first chemo that I now have very little appetite early in the day, but it improves after 4pm so I try to have at least a small dinner & snack throughout the evening.
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killer antacid attack.. I have never had this burning feeling. Hubby went and got zantak for me and just made it worse.. Finally went away enough to sleep. Woke up hungry ate orange.. Woops antacid is back sooo emotional this is terrible.
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