November 2019 Chemo Club
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Dixie02 - constipation is no fun. I agree. Do you feel tired? Are you able to do your usual stuff every day? Let us know.
I did my CT scan yesterday. Results will go directly to my oncologist. Hopefully everything is okay. I have an information session coming up on December 5 th and then I start on December 17th. Going wig shopping this weekend.
Lisa, Karen, Charliebug - hope you feel good today.
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This week has been back to normal for me. I do feel a little tired, but I've been anemic also, so that could be the cause of that.
Let me know how wig shopping goes. We have some wig stores here but I've never been. I don't want to spend a lot of money on one, and I feel like they'll all be expensive in a shop.
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I have a great wig shop where I live. Very Nice wigs for $150 average
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Hi all! I wanted to update...I had my second A/C infusion on Friday, and so far I've had less side effects than with my first on on 11/8. The only thing I've noticed is that I'm pretty tired. The first round made me pretty nauseous that afternoon/evening. I'm cautiously optimistic though, since I've read many people have their bad days on days 3-5 (Sunday, Monday, and Tuesday for me), so I'll see!
Charliebug, I'm sorry you experienced the constipation. It seems as if this is a total balancing act. I was taking Senecot with my first infusion and all was well till I was hit with extreme diarrhea days 5-6. I noticed constipation trying to kick in with this past treatment, so I started the Senecot again. Something else that really helps is Smooth Move tea (by Traditional Medicinals). It has Senna in it, and it is my go-to!
How are you feeling, Lisa?
Wishing everyone a great week and a Happy Thanksgiving! Hopefully we will all feel well enough to enjoy that day!😊
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Hi, Starting chemo 12/2. Need advice on CMF or TC effectiveness, not side effects. Oncotype 15. First MO said wasn't sure what to do with me but if I did chemo either CMF or TC. Sent me for second opinion with top doc at research center. She said NO CHEMO. I wasn't at peace so went to Sloan for another opinion. She said YES CHEMO. She said CMF every other week. So my first doctor was agreeable to this plan and I went back to him. But now I am questioning, if I am going to do chemo am I wasting my time with CMF and should go with stronger TC? Most CMF people I have read couldn't tolerate TC. I also read a few CMF stories and those people were Stage IV 15 years later. Is that just a bad coincidence on the stories I read? These recommendations also appear to be consistent with Sloan or CA, which is a good thing as they are ranked No 2 in country.
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Hi ladies, I hope everyone is ok today. I had a semi-bad day yesterday (day 3) and stayed in bed with bone pain, tiredness, general "yuck" feeling. Today I feel a fair amount better so I'm going to run to the grocery while I have some energy.
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Karen - keep strong 💪 we can do this! Hope you feel better soon.
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Day 4 post AC infusion 1: I'm doing great! After night one feeling “almost nauseous" I haven't had any nausea at all. It was my biggest fear! My only symptom has been verrrrry tired and lethargic. I'm listening to my body and averaging 15 hours of sleep a day! Some bone pain from my hips down last night but Aleve took care of it. The oncology nurse told me don't bother w Claritin because a recent study showed it doesn't help. I'm still taking it just in case.
I ordered wigs online. One long, one short. I'm decently pleased with them. Getting my head shaved Wed before my hair starts falling out. I'm sending my chopped hair to ChemoDiva and having a halo wig made to wear under hats (my work is allowing me to do baseball caps...my style). Super excited to be able to keep somewhat of my normal look!Butterfly - Glad your 2nd round seems to be going better! I second your Smooth Moves tea recommendation! It's working for me (though I'm a lil afraid of diarrhea kicking in so only drinking it once a day.)
Karen - Sorry about your setback! You go girl, still running errands! Don't let the yucks beat you! I'm a little jealous you and everyone else are getting Neulasta via auto shots. My cancer center discontinued doing that and told me it had something to do w expense and insurance. Wonder what's really going on w that. I had to drag my tired butt back there to get a physical injection.
Eigna - Did you find a wig?
Charlie - Kudos to using this opportunity to quit smoking! I hope that's going well for you, and that you've found a good balance to balance your constipation.
Hope everybody else is doing well!
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Karen2019, Please speak to your MO about taking the extra large bag of fluids during your next infusion if you have not already done so. Also, if symptoms are really bad, you could ask for a 10% reduction in chemo. It should not affect effectiveness at that little reduction. I wish you the best and can only empathize with you having gone through it myself. Stay strong!
Pat
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Back from my errands and still feeling pretty good. Certainly better than yesterday. If that could be my worst day, I'll be thrilled. Doing my best to keep up with the pain meds and water. Having a little nausea but not bad. My ears feel very full today for some reason, even on Claritin. Anyone else having that? My numb tongue is somewhat better today, thank goodness.
How is everyone feeling driving? I can't really tell if I feel "off" or not. I have a weird sensation of the car and steering wheel feeling light, which is bizarre, though I don't necessarily feel unfocused or unsteady. Anyone else having anything like that? Just for safety I think I'm going to drive into work after rush hour tomorrow and see how it feels.
I am so inspired by everything everyone is doing while slogging through all this. I was worried I would just want to crawl into bed for three months but y'all are showing me that we don't have to, particularly since we have each other. It sounds like, while we may all be having slightly different SEs, we all have found some tips to help others cope. (Super-crazy-extra-kudos to Charlie for even considering quitting smoking through all this. I can't even imagine trying to make that kind of life change right now!)
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Lisa - yes I found a wig. It looks exactly like my hair style and colour. I am totally happy. One less thing to worry about. Need to order a few beanie caps and I am all set.
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Hi Karen,
Thanks for your helpful tips for TC. I have my first treatment next Monday, so I have a week to prepare and get things I need.
December is so hectic, I’m canceling some activities. How do you handle crowds? Don’t go or wear a mask? What days are worse for low white counts?
I’m really nervous and overwhelmed. I can’t remember if you were one of the gals that said port or no port on that topic I’m facing this week. Oh yes and Thanksgiving! But I’m thankful for all you helpful people
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Day 8
Well, the quitting smoking thing was just a little too much for me at this point. I gave it a pretty good try but I just couldn't do it
I experienced the true meaning of fatigue this morning. I guess I was a little too active yesterday (went out shopping, made some soup, watched the Grey Cup- things that would normally not be a big deal) and today I only managed to get two spoonfuls of oatmeal in me before I needed to lay down and rest before getting up to finish it. Now THAT is some kind of tired!
Other than that, I am feeling okay. No aching or neuropathy (I have had that mildly on and off over the past week in my left foot and hand), no nausea or constipation (yay!).
I guess the first round is the one where you might push your limits a bit because you don't really know what you can or can't handle. I will know better for next time to not try and do so much in a day. Rest is good...and necessary!
Back to bed for a bit and then hopefully will be restored enough to prepare some parcels for mailing
So glad to hear so many of you are doing well.
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Margo,
I've only had my first infusion so far, and don't go in for the follow up blood work until the Monday after Thanksgiving, so I don't know what my blood counts will be. I'm certainly hoping that the Neulasta will keep the white cells decent. In terms of crowds, I'm trying to avoid them completely. I am single and childless and I work in a tiny, four person office, so it really shouldn't be too hard for me to do. I knew I would be canceling the holidays for myself as soon as I calculated my treatment regimen. No way was I going to add extra stress to my body or my mind trying to drive eight hours home to a family of relatives (some of which are always sick) that don't even get along during non-stressful times. This year I am pulling the cancer card and staying home with my cats! (However, if something comes up where I would have to be in a crowd for a long time period of time, I would probably just wear a mask, particularly further into treatment, when I will probably be more run down than I am now.)
I am one of the people who did get a port and for the most part doesn't mind it. It is somewhat of a bruised mess this week after my infusion last week, but I guarantee it doesn't hurt as much as my arm would if I'd had the IV there. It's somewhat annoying to have it there all the time, but I still think I would do it again, just to save my veins.
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Round 1 AC, day 5
I feel so fortunate to be mostly symptom free still. Little less tired but sleep pattern is thrown wacky by the steroid/olanzapine combo. Finished those up last night for this round. Yahoo! I work in the main office at a school and thanks to the sick bank have flexibility to stay home if I feel I need to. Stayed home today but planning to return tomorrow.
Eigna - Happy you found the perfect wig! I have two ready to go, although neither are exactly me. I’m kinda plain Jane and straight haired and feel the part/hairline on straight wigs looks too fake. There are some really cute beanie options. I may just stick with those.
Karen - I feel the same when I drive. sort of surreal, maybe, but not in a dangerous way. I’m wondering if it’s a motion factor from the meds.Margo - My doc said WBC danger will be days 7-11. That puts me right smack at Thanksgiving family gathering (where I’ll feel ok wearing a mask) and Black Friday (where I won’t). May just skip BF this year cuz I imagine I’ll be preoccupied with germs too much to of enjoy it. Then again I’m telling myself — hell no will I let fear of germs control me.
Charlie - Yes, first round is for sure feeling out how to juggle the sudden onset of symptoms and what your body can tolerate. Are you keeping any kind of journal? I’m trying to so I know for future rounds.
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Lisa, I like the way you're posting your rounds and days. Gonna copy it to try and keep better track of things myself. Glad to know my weird driving feeling isn't just me.
So...Round 1 TC, Day 5 (part 2): I've managed to make it through a whole day at the office, feeling pretty good and actually getting work done! A little tired now, but not nearly as bad as days 1 and 2 last week. The worst part of today is that my tongue is still really sensitive, which makes eating not as much fun. However, it is giving me the added advantage of not wanting to eat as much, which is definitely a plus for me, as, prior to chemo, eating my fear was not doing me any favors. Tastes haven't really changed a whole lot yet, but cold things aren't as cold and hot things aren't as hot, which is odd.
Interestingly, my coworkers were apparently expecting me to come in without hair today, which was funny. I've told them all (all 3 of them!) the basic schedule for that, but clearly no one remembered. They were all geared up for a wig today and I think I disappointed them! As someone who hasn't really worn much makeup in several years due to hot flashes, they're going to get a really big shock if I come in next week in both a wig and full makeup! (I plan to spend Thanksgiving weekend relearning to apply everything, because my pale, naked face is pretty scary without it under a real hairstyle!)
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Too funny about the coworkers, Karen! So far we still look “healthy”. You think after tx 2 it’ll start falling out?! I’m not good with makeup either. When it comes time to draw on eyebrows I’ll be a hot mess! The hot/cold taste thing must be odd!
My coworkers organized a weekly meal train for me and I received my first delivery today. (If there’s such a thing as a perk of cancer, this is one! Ha!) But I almost felt guilty answering my door because I was good enough today to have made dinner. The shopping, the prep, the dishes, maybe not so much. It’s hard for me to allow help from others when offered. Trying to get better at that
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Haha! My husband and son tease me about eyebrows. I mentioned that I have very basic makeup skills, and they said that they will draw them on for me. They'll have me looking surprised even if they aren't trying to be funny. I won't even bother with lashes.
My hair is starting to fall out now. My scalp feels sore, like I've had a ponytail that was too tight, and now I can run my fingers through my hair and get some in my hand. I've been looking on the bright side, it'll be convenient, and I'm curious to see how I'll look, but I'm still kind of freaking out a bit too. Soon I'm going to look sick. It's surreal because I feel fine.
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Oh Dixie02.... 🙁. It sucks losing hair. Did you cut it short before starting chemo? Which day are you at ? Day 21 round 1? Did you have your second cycle or not yet.
I think for me losing my hair would be so hard. I don't want to look sick. I don't want people to know. It really sucks all of is. But we have no choice but to go through with it.
Hang in there Dixie02. P.S Me too I won't know how to draw eyebrows. 🤔
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TC Round 1, Day 6
I think I pushed it a little too much at work yesterday and ended up feeling like crap last night. Particularly the sore tongue and throat again. I was scared it was new SEs starting, but after getting a little sleep, I feel better today and will definitely not be staying late at the office tonight.
Dixie, I think losing our hair while still feeling decent is the ultimate blow. I am trying to make myself excited shopping for wigs and caps and makeup, as "back in my youth" I thought hair and makeup, etc. were really fun. I'm telling myself I can let myself have a real midlife crisis through all this and treat myself to things to make me feel less sick. I would also love to try to milk the humor out of all of this craziness - maybe start a "check out these eyebrows" photo page for those of us (like me!) who are bound to draw humorous things onto our faces. However, I'm not sure once it all starts in earnest in the next week or two, whether I'll be able to keep up the energy and enthusiasm to make the effort, particularly if my scalp is sore and sensitive. Guess we'll see.
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My hair was long, and I got a shoulder length bob because I wanted to see how it looked. I plan on shaving it before it becomes annoying, but I'll likely wait until after Thanksgiving. I don't have a dramatically emotional family (the complete opposite, really), but I am the youngest child/sibling, so I do sympathize what it'll be like from their perspective. I'll play it by ear, though, because I don't know how fast it happens once it starts. I can keep you updated with how it works for me if you're wanting a frame of reference. But, I don't want to be annoying with a day by day of how my hair is doing LOL, though if you're curious, I don't mind.
Yesterday was two weeks after the first chemo, 14 days. As far as I can tell, it started all of a sudden. Showering and brushing it the day before led to the typical amount that I would always get falling out. Then, on Monday, every time I checked I would get hair in my hand. Today, I can already tell that there's more coming out than yesterday. And, easier than yesterday, I'm barely checking it. Pretty soon it'll be blowing out in the wind.
Last week my scalp was sore, like that feeling of having a too tight hairdo, or the way it hurts when you have a fever. Today, it hurts more than it did yesterday. Almost as if I can feel it hurting without even touching it. If Thanksgiving wasn't coming up, I'd probably shave it now just to alleviate the increasing soreness.
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Karen: I am eager to play around with hair colors. I have two "fun" colors right now, and a brown. I may also get a blonde or a red. And, yeah, they won't look nice without makeup. And, let's face it, some new clothes too. LOL. We are lucky to be going through this in the winter. I'm in the New Orleans area, and summer would have been too hot for anything fun.
My sore tongue, and throat, cleared up after the first week. Do you have the salt/baking soda/water to gargle with? It helps. I just put some in a water bottle and kept it in the bathroom. And, I think eating ice chips during chemo helps lessen the side effect a bit. Like cold capping your mouth.
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Day 9
I feel soooo much better today than yesterday. I managed to get a few little errands out of the way at home like wrapping up some Christmas parcels to mail out and washing some dishes that have been sitting for a couple of days. I am trying not to push myself too hard as I don't want to get as worn out as I was yesterday. I didn't sleep very well last night but that was mostly due to worrying about family members who are going through some tough times right now. I am hoping tonight I will rest much easier.
I made a doctor's appt today as I have an ingrown hair in my groin area that appears to be getting infected. I want to stay on top of that as infections can be serious I understand. I will run out for that later and pick up some prescriptions.
I was thinking of getting my fiance to shave my head sooner rather than later. I am not expecting my hair to fall out for another week at least but would rather avoid the mess and hassle if I can. I will ask him how he feels about helping me. Maybe we can make it fun somehow? I will probably cry but then would like a treat of some kind for getting through it. I am definitely motivated by reward lol.
I received a weighted blanket as an early Christmas present but I haven't put it on my bed yet. Does anyone else have one of these? They are supposed to help with restful sleep and anxiety. I am worried it will be too heavy for me to move around but maybe that's the point lol. I would like to hear from anyone who uses one and if they noticed a difference in their quality of sleep. I am usually a very good sleeper but I am all over the place since starting chemo.
Lisa- to answer your question about keeping a journal- I am kind of using my posts here as a journal. I find typing is easier than writing these days and this way I can look back from week to week and see where I did well and where the wheels fell off.
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Dixie - I would definitely like to know about your hair loss as it happens and don't mind day to day details at all! Also, I grew up in NOLA (my family is still mostly there) so I 2000% get how awful it would be to be going through this mid-summer! I consider going through this in winter one of the tiny silver linings that the universe granted me when giving me BC. At least I won't be a complete sweaty, miserable mess while attempting to wear wigs and makeup! And I'm definitely going to hope that my sore mouth gets better soon like yours did. I did indeed "cold cap" my mouth with ice chips during my first infusion, and plan to do it for the rest of them too. I have been doing the baking soda/salt thing 3-4 times a day, even at work, which I'm sure no one appreciates. (Sorry coworkers, cancer card!) The mouth sores are my biggest fear.
I cut my hair from shoulder length to a pixie several weeks before chemo, just to start getting used to the extreme difference, and I plan to shave it off as soon as it starts falling out. I hope that maybe the sore head issues will resolve somewhat once the hair is completely gone because I really do want to try my wigs, and can't imagine wearing them if my scalp is sore and sensitive. If everyone will share how their experiences go in this arena as well, I will be grateful.
Charlie, I would like to hear others' experiences with weighted blankets as well. I hear great things about them, but I'm so hot natured, I've wondered if I'd be miserable. Plus, I already have a seven-pound "weighted blanket" named Smudge that sleeps with me every night, so a real one might be more than I can handle!
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You are all to very helpful , because I will have my first TC on Monday. Kinda nervous, but it is what it is.
I just got a call from the MO saying they couldn’t get me in the surgery schedule to get my port this week, so they will use a butterfly for the first one, then schedule the port placement before the 2 nd treatment. I wonder what day I will feel like getting that done and I hate to run the risk of an infection.
Today I went for a routine dental cleaning and ended up having to have a root canal! A blessing in disguise, avoiding an absessed tooth during chemo. Whew!! It’s hard not knowing what day to expect what and trying to keep all these nuggets of information straight in my brain. I’ll be glad when the first one is over
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Although I haven’t started chemo yet, these past few days I felt ok, positive that I will be fine after all this. However today is a different story. I feel weird, surreal that this is happening. I feel nervous. I don’t feel positive anymore. I’m not sure I can do this. How am I going to do this? Will I be okay afterwards? Who knows? Hoping for the best but still scared out of mind.
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Oh Girl, I think it’s safe to say we’ve each had that panic feeling creep in! How tf did this happen to ME? What will my new normal be like? What if I just threw the dice?
When I have those moments I let myself cry it out! The fear and, frankly, the grief are justifiable emotions! This time next year though, imagine how empowered we’ll feel that we got through it all! And the best part, we'll be healthier for it! #thistooshallpass
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Eigna....I feel the same way! That’s the exact day I had! Is the chemo going to be worse in the long run.?
I’m having trouble dealing with people who say “ there are other options”....”natural” this and that..... immunotherapy, yada yada yada.....I mean, I feel like saying wth would you do? Just take my chances and don’t do the more proven conventional treatment.... I know it’s gonna be hard , I’m scared.....
Well enough of my ranting....thanks to all for listening
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Yeah, I've been there too. It's a rollercoaster ride, for sure. I hated the word "cancer" for a while, and I couldn't get away from it. I've had nightmares that made me think I was going to get PTSD. Everytime I went to the doctor I got new news about my condition, and none of it was good. To top it off, I'm doing chemo before the mastectomy, so I worry about it spreading. I've actually had moments where I thought to myself, "This is it. This is how go out". I feel better about things now that I've started chemo. And, I'm generally a positive person anyway.
You can do this. Look for the lessons in your situation. When we come out the other side we're going to be better. I'm glad that you brought this up because I don't have anyone close to me that has gone through this, so I never lay the heavy stuff on them. In fact, I do, and say things, to make them feel comfortable around me (I work with younger adults. I love them, but I remember what it was like when illnesses were something that happened to other people). Lay it on us. We're right here with you.
Margo: I had a guy suggest that I go vegan. I agree that a vegan diet is a good diet. And, he was only trying to help. But, (A) I'm doing so much research on my condition that I can probably pass for an oncologist by now. It felt a little like he was "man-splaining" things to me. Like, "oh, you don't say? I should eat more vegetables and less processed foods? Thanks for the tip". And (B), I already have cancer, telling a cancer patient what they can do to prevent getting cancer is like telling an obese person that junk foods make you fat.
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Hello ladies! I completed chemo Sept 24th and would love to pass on all the wonderful head coverings I have acquired, including one very pretty mid length wig (light brown). The scarves are so pretty and comfy, my friends at work gifted me a dozen of them, they are soft bamboo with a silky scarf over it. The wig I wore 2 times, I live in AZ and between the weather and the hot flashes it was just too hot for me to wear it. Just message me if you are interested and I can send pics of the wig. I'm not looking for any cash, just wanting to pass them on to brighten someones day.
Hang in there! It's not an easy road but it really does end (and your hair and lashes grow back). I am 9 weeks PFC and had my first "trim" yesterday.
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