Who is starting chemo in September 2016?
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HopefulYogi..I'm a Taurus too, so believe me I understand
. I dialled down this board right before chemo because I found it more distressing than helpful to read everyone SEs. What I found most helpful was to download the tips and tricks sheet..can't remember where the link was but seems to me it is at the top of the section above this topic?...and stock up on various items that I *might* need. Good luck on Friday..we are all in your pocket and just take it moment to moment. Remember that we post when we are having trouble on here and sometimes when we keep silent it's because we are managing and feeling okay!oceanSky, thanks for the L-Glutamine tip! I will investigate. It's passed now of course but will look into for round 2.
I also like the Cancer Fighting Kitchen cookbook..received it right before chemo and have tried a couple of recipes..can hardly wait to taste more
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Looks like day 12 for the CT cocktail is the day. My shower today was as described..squirrels and puppies left after it...so now I am scrambling. Stupid I didn't pick up my wig yet..now I have to hope to get out of work before they close..otherwise I have to wait another day and not touch my head...and my son's birthday is Friday..would like to have this under control before then. He's already sad I will lose my hair!
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lmencken mine was day 14. I tried combing my hair, then stopped out of fear that it will all go. My son is so incredibly sad about my hair too. I am not washing my hair this week if I can help it - last time was Monday night. Had a little cry yesterday. DH is trying to encourage me by saying that it will grow bag thicker and better, even my boss told me that his friend's hair came back without any greys (and my hair is more than half grey now despite my age) but now I understand what the other women were going through. All my positive self-pep talk has evaporated . My skin is papery too -but at least i can do something about that..
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I'm sorry that the discussion of side effects has scared off some. I find it helpful but I understand and try to walk that fine line when I post. My side effects have been mostly mild except for a half day of bone pain. My hair is 90% gone but I'll spare you the pictures; instead here's one of me getting my second treatment (where I'm at as I type this.) I'm feeling good and anticipate even milder side effects this time.
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You look great Bagsharon!
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Questions:
Hey, ladies! Although I don't have a lot of time to get on this forum, I do continue to enjoy your stories of your experiences. This is my "go to" place when I'm down or when I'm curious. I have a few questions for those of you who have more knowledge of the whole chemo:
1. When does "Day 1" start? Is Day 1 the day OF CHEMO, or does Day 1 start the day AFTER chemo?
2. Which days does the hair typically fall out completely? My chemo (cytoxan, taxotere) was September 15, and mine is starting to come out a lot when I brush it.
3. When do eyebrows and eyelashes start falling out?
Thanks to anyone who can fill me in. Hope y'all are having a great day!
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GonnabePoz,
Day one is day of infusion. aka day of chemo, My MO told me 12-14 days after first infusion. My buzz fell out day 13. I dont know on eyelashes and brows, but mine are still there. I will let you know, since I have had two infusions now. Mine is AC chemo so it may be a different time line than yours,
love and light.
xoxoMichelle
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For those with questions about hair loss-I am one day behind Bagsharon on the CT treatment, I go for my second round tomorrow. Everyone is different and we may not follow the exact same path, although I think we are all pretty close together in the hair loss. My hair WAS very thick and has been an advantage in my hair loss. I still have hair, although to my distress it has thinned a lot in the front. I look like I have a major receding hairline and the back and top is much thinner as well. I am wearing a cap today, just because I am tired of the shedding. I was going to buzz cut it, but if I did I would have nothing left in the front at all. As it is, I can cover it with my longer sections of hair. I still have my eyelashes and eyebrows and haven't completely lost my nostril hair as some have.
I have been keeping up with posts, but have been focusing on deep cleaning my house and meal prep before round two tomorrow. I know I will be down for several days afterward and want to be as helpful as I can. My husband works 13 hour days and goes to work at 4:00 am so I don't want him to have to worry about cooking after such a long day.
Don't let our posts of SE's scare you off. SE's are different for each of us. I prefer to see the what ifs and what might happen so that way it doesn't come as a surprise.
KDTheatre-wow! I'm so glad you're ok.
For those of you with chemo this week-I hope for minimal SE's and abundant energy.
Stay strong, stay positive, and keep fighting!
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KD...OMG...I was hoping your absence wasn't because of a reaction..ugh..so horrible...your friend is an angel..thank God she didn't listen and took you;to ER...we all need to have a great support person. So glad ypu are okay!!!
Your daughter did fantastic..not sure I will have my son do mine..I started Shedding today..day 14 I guess...not gping to shower again!!!! Hoping to pick up wig today..sorry you hate yours..I heard they can exchange in some instances.
Smilethru..soooo glad it's benign..how scary..not what you need to be adding to your already full plate!!!!
Cc2016..hang in there...sometimes you just want to say enough already but life sometimes smacks you in the face with inconveniences that are like mountains.during this journey ...like you need more shit to deal with..sorry but that's what is is....One thing at a time..take a.break and blast some music ..that helps me sometimes..I kind of sang loudly while tearing up on way to work after my hairy shower today.
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Emily completed round 2 today. Everything went smoothly. Here she is having a mango Italian ice during the Carboplatin:
Couple of things I want to share:
During our discussion with the MO, we told him about Emily's issues with the D and how she had some pretty severe stomach pain during it. He told us the stomach pain may be a SE all on its own and may be caused by chemo-induced Colitis. He said if it happens this time around, he wants a call, and that (TMI alert) she may need to bring in a sample. He also said severe Colitis can be life-threatening, which is why I bring it up to you all. We just thought her pain was caused by the D because the Imodium helped relieve it and it went away about day10.
We were also visited by a dietician while we were there. She gave us a couple of nice resources for fighting SEs by eating certain foods. The first is a book called, "Eating Well Through Cancer". It is full of great recipes for countering D, C, low WBC, and mouth sores/pain. It is available on Amazon for free. All you pay for is shipping. Just make sure you click on the "other sellers" tab. The dietician also gave us a 68-page printout called, "Eating Hints - Before, During, and After Cancer Treatment". It is available as a free downloadable .pdf/Kindle/ePub at the National Cancer Institute's website here: https://www.cancer.gov/publications/patient-educat... It provides information about dealing with SEs, recipes, and helpful websites. It is laid out in a easy-to-understand format that will point you to ways to fight your specific side effects.
Sorry to read about the difficulties a couple of you have had, but glad everything turned out ok!
Bagsharon - you look marvelous!
Smilethrupain - Emily got this from her nurse for dry skin:
She says it works great! It is available online for about $5.
Good luck to everyone who will be starting chemo soon and those of you who are into round 2 (or 3?)!
Take each day as it comes and stay positive! Think MILD SEs!
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Thank you for all the compliments. I've been embracing bright lipsticks as my complexion changes during the chemo. It really helps me from looking washed out.
As far as the hair going, it started about day 12 after the first infusion with the heaviest loss around the 17th day. Eyebrows and eyelashes hanging in there still. About half of the body hair is gone and what is left has just stopped growing, except for the creepy mole hairs, dammit.
I got the Neulasta pod today. It was quite the spectacle. Apparently it is not offered where I go, you have to ask for it which a lot of people don't know to do. My nurse had to get out instructions on how to administer it. All the other patients watched like it was a show on TV. There was a video and a verbal test afterwards. Staff was asking me how I like it. Surreal. It all seems so stupid. I don't know why I can't just get a regular syringe and inject it myself instead of this circus.
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Wow! Sounds like we are all coming along right on the same path here. I'm glad everyone is managing. I had my oral steroids cut in half for AC round 2. I thought I was going to make it through, but yesterday afternoon I hit the wall, same as last time. Short of breath, heart pounding, shakiness and it felt like someone was sitting on my chest. Kind of like they describe a heart attack. I was so tired and went to bed at 8 last night, slept till 6 this morning and got up feeling like I hadn't slept at all. Today I did absolutely nothing. I did get a nap this afternoon and now, the same as 2 weeks ago, I feel like I've had about 3 gallons of Mountain Dew and am running on a caffeine high. Guess I'll be revisiting the steroid issue again next week before #3. I know they give them for nausea but since I have had none of that at all, I wonder if its the steroids working, or if I'm just not going to get it. I feel like I need to choose the lesser of the two evils.
The hair issue--Today is day 20 after first infusion. It started shedding on day 14 or 15, but I have not cut my hair nor worn the wig yet. I still have about half of it firmly attached to my head. It is noticeably thinner but I have no bald spots. I wonder if on AC if it is possible for some of the hair to remain. I doubt it but wishful thinking I guess. I also have not had the tingling or sore scalp that some describe. I'm sure my day is coming soon. I figured it would be long gone by now. Still a depressing thought to me.
Here's sending everyone best wishes for their next round.
By the way, I love that all of you are sharing such wonderful photos! You are all beautiful. I don't think I will be that brave to post a photo of myself as I am very self conscious about my looks the way it is, but I truly enjoying seeing yours.
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kdtheater - Please keep us updated! Glad that you had someone there to fight for you! I think sometimes Dr's just assume that we are exaggerating or that things are "normal". From everything I have read here and from everyone I've spoken with... We all have our own "normal". I say stick with us if you don't want to get to know an entire new group! We are all in this together and are spread out time-wise anyway! :-)
Balbina - Welcome! I am one that has just started telling a few people here and there (since I can't hide anymore, if I'm being honest). I keep most things pretty close to the vest and up until the day I had the surgery for my port, hadn't told anyone but my immediate family (husband and kids). I wouldn't tell the world if I had another disease and I hate that the treatments for this one make the fact that something is wrong so blatantly obvious to the world at large. There are groups that are out there to help. I have an ACS Look Better, feel Better group class scheduled and hope that gives me a positive attitude boost. Look and see what is available in your area - but I find that coming here and interacting gives me great peace. I would recommend a port if you are having long term chemo. Are you just set up for 8 treatments? I have a port, but I am looking at chemo every 3 weeks for an entire year (Herceptin only after the 6 rounds of TCHP), but so far I am thankful for the port which has been used for my 2 rounds of chemo and today for hydration therapy.
VLH - I can't wait for cooler weather! I would love to wear some cute wool hats.
GonnaBePoz - I'm sure that your hair is NOT your best feature, but I know exactly how you feel!!! I was always partial to my boobs too, but they turned against me! :-) I still hide what I have from my kids under a hat or wrap, trying not to traumatize them to much (or at least that's what I tell myself). It might be fund to share the "dyeing of the hair" with your daughter. It may be a very nice transition for both of you... just don't wait too long! I consider Day 1 as Chemo day. I am on TCHP and my hair started coming out Day 13, by Day15 it was coming out in clumps :-( I haven't had an issue with ANY other hair falling out yet - I am on Day 6 of Round #2.
CC2016 - I have been worried about delays and numbers. I'd love to hear any suggestions too!
smilethrupain - you are in my thoughts. Scares like this are why I am leaning toward a bilateral MX. Previous scares, "dense, lumpy breasts", misc cysts... I really just want it all to go away.
Bagsharon - you look great!
Sam13 - glad to hear (and see) that Emily is doing well. I am going to try the cold thing next time during T&C (snafu happened this time around). Please let us know if she thinks it helps with the taste issues!
Happy thoughts to all of you! Hang in there! and Thank you!
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Ok..bagsharon..your look wonderful!!! Really cute in that scarf....needed to see that today cuz...
I have to admit a minor breakdown because it surprised me....I RAN out of work today to get my wig before it closed..all my coworkers rallied to help me get out because they knew the shed had started ..so I'm driving like a mad woman and absentmindedly touched my hair and started to cry amd couldn't stop..I am NOT a cryer..never!! I was talking to myself saying darnnit.stop it..you're fine. I was putting songs on loudly to pump me up but i swear they were all sappy sad. I even had to stop before I got home to freshen up in the car before my kids would see me come in. Was very weird..that's not me at.all. I was looking for a neighbor to smack me for being so silly. My husband was excited I got my wig..all I can think is that tomorrow is the big chop!
I'm strengthened by all you ladies looking so strong and beautiful in your short hair and scarves and hats..I'm going to get there too. I am so mad I am getting sappy...but I'm putting it out so people know even if we are typically strong..there is something that can always sneak up and derail us.at.times...maybe because I had a busy week and am really really tired??
Hugs to everyone and Sam thanks for the book info!
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Tomorrow is infusion #3. I'm going to have to snack on something I don't really like to begin with while I'm there because I've found that the snacks (pretzels and almonds) I had the last two times now turn my stomach when I think about eating them. I really liked almonds too!
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lmencken--WELL SAID! I'm right there with you. Getting ready to leave to go to a function with my daughter tonight. Just combed through my hair to pull it back so I can put it up in a clip. Out came a big tangled up bunch of loose hair. I know I need to cut it off, but it is too depressing and the thought of being seen in public without hair, with a scarf or with a wig is horrifying to me. This is day 20 for me. As I said earlier, it should be gone by now, but about half is hanging on. As my mom always says--"I look like a fright!"
Trying to be as strong as some of you other ladies, but that's easier said than done.
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Seq...the heart pounded, etc is probably low iron (anemia). I have had that too. Mine started after 3rd AC. Had to start taking OTC iron. Check your hemoglobin numbers, if they Ho below average acceptable you will have trouble. Once mine got to 10.0 I could hardly stand for more than a few minutes. Stairs made me feel like I was having a heart attack.
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I took the Look Good Feel Better class on Monday and when the instructor said that this was a safe place where we could feel comfortable, I whipped the wig off my head. The other ladies were fascinated by my hair loss and it ended up being a half hour discussion. They were in so much pain thinking this was going to happen to them. I don't know if I can articulate what is going on in my head with the hair loss. I barely make the cut to get chemo to begin with. I am taking what is considered by many as the mildest form of chemo. Yet, I have pretty severe hair loss early on. It makes me think it might be permanent. Sure it bothers me but when I put in perspective, it's nothing really. I have a husband who adores me and thinks I'm beautiful no matter what. My children are grown and one is even an RN that I can talk to about some of this. I have a job that I like, for the most part, and has cooperated with all my medical appointments. Friends have come out of the woodwork to support me. I'm in a good place. I don't know if all my babbling is of any help to anybody but I hope it is. I hope my pictures show that an overweight middle aged woman with no hair can look good and be happy. Lastly, I hope that those of you who are struggling, find the peace that I have found.
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Bagsharon, love your attitude. I'm glad you are blessed with love and support. My mom is staying with me through surgery and chemo, and as a cancer survivor, she understands me better and it's much harder on her than on my Husband and kids.
and you don't look old enough to have an RN child
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Sorry I have been MIA. I keep reading threads but chemo brain makes it hard for me to follow through on posting or even putting together a coherent post. I start a lot of posts then never seem to send them. My eyesight is blurry and weird when I type.
kdtheathre, so glad they figured out your sodium was low. I can't believe your on-call doc didn't think you needed to to go to the ER! That's so scary when you can't rely on them. Good thing your BFF was there.
Had my second infusion a week ago today. Weird how the SEs are the same and same order and same days. This time was better though because I didn't get the fever (knock on wood) and so far no thrush. The stomach cramps started on day 5 and that is probably my most painful SE but the bone pain is a close second. The PA gave me an RX for Bentyl for the cramps. My bone pain seems to be a bit better this time just like they said it might be with the second dose of neulasta or it might just be because I don't have a fever this time. The most irritating SE is constantly being too hot or too cold. My body can't seem to regulate my temperature at all. Socks on, socks off, fan on, fan off, it is constant and I'm never comfortable. PA said it's a chemo side effect. And my blood sugar feels like it is all over the place, I am soooo hungry and get these huge cravings. I don't need medical marijuana for appetite that's for sure. All my doctor's are happy I have an appetite, well I'm not, that is the only side effect I'd like to have because I feel like I'm gaining weight and I don't need to gain weight, that's for sure. Even when I was a bit quezey tonight, I was still HUNGRY.
HEY I JUST THOUGHT OF SOMETHING! Halloween is coming! I'm going to go bald for halloween and pretend it's part of my costume! I hope the rest of the fuzz falls out before then. What bald person/thing can I be for Halloween? Not Uncle Fester. Or maybe I should do the opposite and be Cousin It. Oh I gotta think about this.
I better post this before I forget what I'm doing.
xxooxxoo
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Forgot to mention my mouth issue. My mouth SEs are worse with this second infusion but luckily no thrush or sores just always have yucky taste in my mouth no matter how much I brush and rinse with Biotene or saltwater, it never goes away. I don't know if this is because I didn't suck on ice chips with my second infusion (I did one ice chip and then forgot about it—ugh chemo brain) or if it is a cumulative thing. I can drink and drink and never feel like my thirst is quenched either. It is so much worse at night, but I do have something that helps tremendously at night, I can't sleep without it because the dry mouth and bad taste. They're called ZyliMelts. I think I learned about them from the August group. They are like mints but also help dry mouth. They adhere to the outside of your back molars or gums and then stay there all night. I know it sounds weird, but if I didn't have these I'd be waking up to sip water all night long and then going pee all night long. I bought mine on Amazon.
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No chemo #3 today. Platelet count was too low. Gotta give it a week and give it another try. 😡😤😠.
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Well, it looks like Day 14 was the big day for hair loss. I couldn't believe how much continued to come out as I brushed it, and... I couldn't believe not a tear was shed. My hair is super super thick so if it would just stay the way it is today (Day 15), I would be ok. Not as much came out today. I've always wanted my hair to be thinner so I can manage it, but it is going to take some getting used to. This shedding is about to drive me insane. Please continue sharing, girls. You are such an inspiration.
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Sam-thanks for the links. Glad Emily made it through round two successfully.
Ware-so sorry that you couldn't knockout round 3 today.
LisBethS-Good to "see" you! I'm happy to hear your SE's were a bit better with round two. Thank you for sharing the Xylimelts. I may have to order some of those. Love the Halloween idea!!
Lmencken-You worded that very well. I've read that we have two different personalities during all of this-roid rage and chemo-sobby. So, you can just make it another SE. I'm typically very strong, but I also cry when I get really angry, or frustrated and that seems to get worse with age, sadly. I HATE crying in front of people. I don't view crying as a sign of weakness, I view it as I've been strong too long. Hang in there, sweetie, we're going to get through this, too.
Seq-I agree with jiffrig, get them to test your iron. I am anemic before chemo, but chemo can cause anemia. My heart races, I'll get palpitations, can't control body temp, get dizzy, really weak. I hope it gets better soon!
Bagsharon-you continue to inspire. You are beautiful!
Welcome to all the new faces!
Round two was today. My blood tests were all great, thankfully. Nuelasta pod on. They said our clinic charges $8000 for that thing, that's mind-blowing to me. Went grocery shopping after treatment with my husband and now I'm resting. Feeling a little fatigue and hot/cold flashes-otherwise, so far so good. I'm aiming for a gallon of fluid intake today to flush out all these chemicals.
You're beautiful, stay strong, stay positive!
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Day #1 of first round down! My cousin and wife came thru town last night and spent the night. It was good because a) it forced me to clean the house so that I won't have to think about that for at least a little while and 2) it occupied my brain so that I wasn't just thinking about today's appt.
Feeling pretty good, but every now and then I feel something weird and think if this is just the start of the SEs. I feel like it's mostly just dread and worry in my stomach, and not actually anything yet.
I limit how much I'm on the internet, looking at this forum and researching cancer topics. When I start to feel anxious, I stop. So far it seems to be a good idea.
I told a few friends, but finally put it on the church's prayer chain on Tuesday. I figure if more people know, the less I will have to explain individually. The lady who put out the request also phrased a very nice note that basically said to leave me alone and I will let them know if I need anything. Which is exactly what I want. Plus, the prayers are definitely needed.
Trying to put a funny quote on fb every now and then, which makes me search pinterest for them and I read a bunch of funny things before I chose one. Which gives me something different to think about...and is funny.
My insurance has to approve my Neulasta, so the doctors have to submit my need before they approve it. Which they say will happen pretty quickly, but no Neulasta tomorrow, anyway.
Take care, ladies!
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"I've read that we have two different personalities during all of this-roid rage and chemo-sobby." I haven't had the rage thankfully though that could be fun at work lol. I qualify on the chemo-sobby, found myself unexpectedly weepy in the office on Monday, and again yesterday at my MO follow-up before treatment #3. All it got me yesterday was a lecture from the nurse about talking to people about my SE issues, and a reminder that they all think TCHP is "very tough" and "about the worst regimen they give to people" which true or not isn't really something I want to hear.
About a week out from treatment day #3. Still trying to get rid of the SEs from this past cycle, hoping for those good days we're supposed to enjoy for a while in between. D came back this morning after a few days break. And worst has been having on and off nausea and queasiness for close to 10 days; between that and not eating much has left me feeling pretty rundown. Missed three days I had planned to be at work. Feeling better today after i finally gave in and significantly up'ed the pills (within Dr recommendations). Usually try to take the minimum and ease off it soon as possible. But that wasn't cutting it this round.
Lab tests were good at least, so no big "system" issues on top of feeling run down and out of sorts knowing I have three more months of this to go. Port is still acting up; next cycle will be a test whether they can get it working, or have to result to a scan and see if it needs to be replaced.
I still have a bit of hair left with the buzz look, but it's gradually been thinning. Have not noticed much change to my eyelashes/brows, would love for those to hang on if they can
Wearing the wig to work, but short of piling on make-up there wasn't much disguising how crappy I felt this week to anyone who may have looked. Hoping for better days this weekend - best wishes to all0 -
I just had my 1st round today. It went pretty good but it was a long day. I am tired too and just wondered when the SE will hit. I'm chugging tons of water and started all the anti nausea pills. Hoping to avoid it. I got the Neulasta injector on the back of my arm. It will dispense tomorrow at 5:30. It's pretty nice since my cancer center is an hour away so I don't need to go back tomorrow. I hope you get your approval and have a great week with limited Se's!!!
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Misslil-I hope you round that corner soon and regain your strength and energy. I have had bursts of the roid rage when I was on them for almost two weeks. I quickly realized what it was and just kept my mouth shut lol.Things that ordinarily wouldn't bother me just got on my last nerve. I weep randomly, too. Usually when I'm alone, but not always. Today, my husband and I were in my MO's office and I asked him if he could handle seeing me get chemo and he said "This? This is easy, the hard part was seeing you after your surgery. After having part of your body cut off. Seeing you in so much pain. You don't know this, but I went in the bathroom and cried for a while after that." I've only seen my husband cry twice in 22 years of marriage and just seeing him tear up telling me that, I lost it. Our battle impacts those close to us, too, and I always try to keep that in mind. I know for him, he will never let me see his pain because he thinks he has to be strong for me. I was shocked that he even revealed that to me.
Nottheboss-Sorry about the neulasta, but that will reduce your SE by not having it, so I guess if there is a silver lining. I hope that all goes well. Hydrate! Hydrate!
Lynn-SE's nausea, the big D usually hit after your anti-nausea meds wear off from infusion. If you get neulasta the pain usually starts within a few hours, but for me personally the pain was much worse days 2-3, then it left as quickly as it hit. The more you drink and eat the less SE's you will have. So force yourself. That was my biggest lesson from round one. Walk or exercise is also helpful, but I know it's hard when you are so drained. I walk around my house, to my mailbox (which is a good jaunt) and just sit on the front porch to get out of the house.
smilethruthepain-how are you doing?
As for hair loss-it's considerably thinner on the front half of my head, see through in places. My son said I could be one of the zombies on the walking dead lol. I think this round may be its end.
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What a day. I came into work, tired from the steroid deprived sleep after my second infusion yesterday to find everybody in the entire company wearing these shirts:
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Hi Balbina,
Welcome to our little group. I understand why you would keep the diagnosis to yourself - my family and I did the same until chemo came into play. I was diagnosed in June, had surgery in July and waited for a few tests to decide about chemo which is why I just started in Sept. Once the hair loss started I opened up alot more and I have to say it's been a bit of a relief. My husband runs a nonprofit and really kept things quiet until I had a bad reaction to the chemo and he had to take a few days off unexpectedly with me. We have had amazing support from both close and not so close friends. And we've had s few friends drop off. After the first chemo debacle I realized we could use some meals - my friend set up a meal train and the slots were filled within a few hours. Anyway just wanted to share our experience - but this is such a personal decision and you will do what's right for you and your family.
Second, I am doing an IV infusion and I don't even have great veins
. I do try to hydrate a ton the day before and day off but not sure that actually helps - the oncologist nurse just said to do it.Big hugs to you. Keep us posted on what you decide to do
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