Chemo starting December 2017
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Daniz, I’m struggling with WBC count as well and it’s so discouraging. I was scheduled for round 2 tomorrow but we have to delay it a week because my wbc count has not rebounded enough. The docs were a little surprised as we've only just started and I would've been at my strongest this round and she wouldn't expect this issue so soon. She said there's not much to do but wait. I had the neulasta shot and it seemed to function properly. It's possible that whatever was going on with me last week was an infection and messed with my immune system. I'm scared this will happen every time and that I won't be strong enough to endure the chemo or too many delays will make it less effective
I saw the recommendation for bone broth which i’ll give a try. I’m wondering if maybe some excercise would stimulate some new cell production too?
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Hi Ladies,
Like clockwork on day 14, my hair started fall out. It was physically painful and kind of depressing to see and feel my hair falling out with every move. Fortunately I am not wanted to a crime because I left my DNA in a lot of places this weekend
. Although my closest girlfriends offered, I already promised my boyfriend that he could shave it for me. But he was working out of town all weekend so I had to wait 2 LONG days for him to come home. I couldn't wait to get rid of the thin limp strings that were left behind, weakly griping onto my scalp with their last breath. I cried when he turned on the clippers, but once the hair was gone, it was such a relief! I still have poky Velcro like hairs on my head but I am basically bald. I wore a ski hat yesterday and tried a halo wig with a cute hat today. I got hot and itchy, so midday I took off the hat/wig in the office and I was comfortable rocking my baldness. In fact without hair falling everywhere and without any major side effects this week, dare I say there were actually moments that I forgot about cancer???!! It was awesome!Have another set of labs and see my MO on Thursday, then chemo#2 Friday. My WBCs have bounced around drastically. No idea what that means for me, but I am feeling strong so I am crossing my fingers hoping for the best. For all the ladies with low WBC counts- my fingers are crossed that you are able to boost them up enough to get your next treatment. Sending healing thoughts your way.
Oh and I have to warn you, MJB- be careful because you must be contagious! … after reading your post, I think I "caught" your cute hat addiction! (HAHAHA
) I just went to amazon and bought a bunch and I can't wait to get them! My BF's cousin knitted 2 hats and they arrived today- also super cute too. I am having fun trying out this new for me accessory trend. The wigs are kind of itchy and I can't wrap a scarf to save my life so hats are a fun way to cover up when I don't want to be bold and bald. In fact, I may wear them all at once and write an update to my favorite children's book, "Caps for Sale!" Sending positive thoughts and warm wishes to everyone.
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Again the depression sets in. D 6 post #2... yes I'm doing it every 3weeks Daniz. I hope all these end fast!!! Just sick of it! Oh dear Lord....
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Hope you feel better soon Hariry. I’m also suppose to be getting infusions every three weeks, #2 is scheduled for this Saturday. I’m not looking forward to next week but I’m anxious to just get it done and get through it.
Awesome you are rocking the bald LAMinders. I would like to have the option of wearing nothing on my head but I live in northern Alberta where -30 degrees Celsius is not abnormal at this time of year. I found my wigs a bit itchy at first but got used to it, don’t know if my scalp acclimated or the wigs stretched a bit. I can’t tie scarves either but I did buy one that’s sort of pre-tied, it is colorful and has sparkly bling, I look like a gypsy or a pirate in it.
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EJean, so sorry you’re struggling with your WBC too. It’s awful that your treatment was postponed a week but hopefully this will give your immune system enough time to get build back up soon. You know I am freaking out a it this as well. So so scared Bc I actually have a weird cold this week, I’m coughing and nose is stuffy so I’m worried that it’ll be like you said this effects my immune system so much that I won’t be able to do my chemo like with you.
I am going to the local store today though and get some bones for the bone broth to make today. We gotta try anything
))I recently met a young girl who went through this last year and had issues with her WBC as well. She said neulasta wasn’t working for her, she had to inject herself for 7 days after her chemo therapy for the WBC and had no problems after that. I’ll see what MO says after my blood work Thursday but I’ll ask about whatever is out there to help I really don’t want delays. May is so far away and I hate the thought of going past that.
On another more depressing note I’m with you LAMinders, my hair started falling out slowly yesterday. Tons of strands came out. Not clumping yet but definitly so many strands. I couldn’t go to cut I had to talk to my daughter to explain so she’s not shocked, she’s only 5 but is aware of everything going on. I hate that the loss has to come just hate it
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I bought the children's book Nowhere Hair, it's a great book to read to young kids when you lose your hair.
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It sounds like most of us are on 3 wk schedules but blood work is being checked at different times. My doctor scheduled me the day before planned infusion. I see some day of and some a week before? Is it more advantageous to check at any particular point? I'm wondering if I should ask to have it checked earlier and maybe will need more Neulasta or a different kind of bone stimulant, assuming there are others?
I dread shots, I really hope I don't have to do self injections like you mentioned. I did fertility preservation and it was a week and 1/2, 2-3 shots a night with blood draws every few days. I was worn out from that before I even got to the chemo.
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LAMinders...Let's make a pinky promise that we still rock the hats when we have hair! Ha ha. It's so weird, I'm way more into making my outfits more fun, in general. This is not a bad thing.
Chin up, Hariry! I'm sorry the funk has sunk in again. No fun. I've been working most of the time since #2 and feel great physically. Just a bit hard to get going in the morning, and early to bed. Keep your mind occupied with other things. If you physically feel bad, sleep! Hope you bounce out soon.
Daniz, while I don't have young kids to comfort with the hair loss, I will tell you that once I took charge of it I felt so much better! I had a good cry in the shower when gobs and gobs of long hair were coming out. Once. Then, I was over it. My hair hung on enough for a few days before shaving it. At that point, it was a fun experience. Weird, I know....I just felt awesome! I never bothered with a hat or anything. That lasted 3 days until the shaved haircut started coming out like crazy too....Once patchy, the hat obsession began. Take it one day at a time. This too, shall pass!
EJean, I'm on an every 2 week schedule and get a Neulasta shot the day after each one. It's working well for me. I did get sick (nasty chest cold) day 6 Chemo #1. By day 10 I had a fever and was going downhill. On day 12, my blood was checked and WBC were still good! I was put on a zpack and still able to get Chemo #2 a few days later. Regularly, my blood is checked the day before chemo, and that's it.
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Swewing, yes that book is great. A sweet friend bought me two books to read to my daughter. I read her both and explained it to her. More hair is coming out today. I hopeeee that it doesn’t start falling out I chunks over night or tomorrow. I am wanting to go get it cut tomorrow evening to save my long ponytail. 😫
EJean, I’m on a every other week dose dense schedule and my doc also checks my blood day before scheduled infusion. I think after my first one she just wanted to check me 7 days after to see how my WBC was. I think what you’re doc has you sounds about right. I’m so sorry you had such a hard time with the fertility iinjections the girl who told me about those shots said it was super easy and very painless. We shall see what happens tomorrow hopefully I won’t need those either. Fingers crossed.
Mjb1018, oh gosh that sounds awful the patch part and the clumps. I took a shower tonight and was sooo careful not to tug pull or really do anything. I hope I handle it like you and get into hats and stuff I do have a wig which is looking amazing but I can’t help but be upset and sad. I definitely want to save the hair not sure why and I may be insane. But eh.
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MJB- it's a deal!
Hariry- sending big hugs
SSWP- 30 below???? Thats just crazy. How on earth do you function in that? People in LA wear scarves and boots when it hits 50 F (above). And this weekend it may get up to 80. So much for the cute sweaters I bought. Colorful bling makes me happy! I bet its super cute.
Daniz- let me know how your broth turned out AND if it helped with your counts. The hair loss is very hard. I cut mine to my shoulders a week post chemo and I am really glad I did. The long strands falling out were bad enough- could't imagine what it would be like seeing my full length hair on the floor, my desk, in the shower, etc. I shaved it down to little fuzzies and now they are coming out too. But honestly those falling out don't bother me. I can't imagine doing this with kids. It's hard for adult friends and family to deal with, but the little ones do tend to bounce back pretty quickly. Your daughter will see you kick cancer's ass, then come back to be stronger than ever for MANY years to come.
EJean- Yep I'm on a 3 week schedule too. My WBC levels required me to have 3 shots at home (my BF injected them for me). He will be out of town in the next 3 weeks, possibly when I will need shots. Not looking forward to giving them to myself. So far, I had labs done before chemo, and once a week since to check my levels since my WBCs have been all over the place.
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All clear for Chemo #3 tomorrow! WBC was 13.7...Neulasta is definitely working for me.
Feeling so great this week! Learned more about the fibrin sheath on my port. MO says as long as it accepts flow, we're good. Since I have so many treatments left and it could continue to develop, the surgeon may want to replace it. I'm meeting with her on Monday, so will ask. Plan would be to just replace it when I have the lumpectomy and sentinel node biopsy. That will be scheduled a few weeks out from my last AC which is scheduled 1/26. Then a small break before starting Taxol and Herceptin. I know I have a long way to go, but feeling good that the AC will be over soon. If my next 2 treatments go as was as the last one, I really have no complaints in the big scheme of things. I hope everyone is having a good day. 0 -
mjb1018, wohooooo yay for #3 one step to being closer to #4.
I also have some great news just spoke to my nurse she said my WBC is great it’s in the normal range and great. Ready for #2 tomorrow!!! WOHOO. BUT Dallas TX is apparently having sleet and they are now saying they may be closed 🙄🙄🙄🙄I am totally rolling my eyes Bc this is just what I needed. I want to do this without delays so I can get it over with quicker.
LAMinders, I ended up making the bone broth yesterday. I was kinda exhausted afterwards I ate a giant bowl of it. And idk if the neulasta did it alone or the bone broth helped but my WBC is apparently back to normal. Give it a try.
My hair is definitly Fallon out. I have it wrapped up trying not to brush or do anything until I can get it cut tonight. 😔 I’m so depressed about this. I know it’s part of it but it’s depressing.
Anyway have a great day everyone!
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Hey there,
Whenever I feel burned out I come here and knowing what you girls have been talking, being so positive.... I get empowered. You girls are simply amazing!!
Been to work today for the first time ever with the wig. Can't help the self-conscioused and feeling awkward. Then started meeting some colleague and friends, and surprisingly being praised for the new hairstyle. Most have no idea about my condition. Ahem.. not too bad actually.
even though it is a long journey but it'll eventually come to the end. And, yes, we'll kick the cancers ass that's for sure. Keep fighting😘
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Hariry: Glad to hear you had a positive experience with the wig at work. I find it valuable to have a way to carry on without advertising to everyone that I'm going through treatment. Without the wig I would have to explain to everyone what is going on and I like to have the option to only share with those I want/need to.
LAMinders: I ask myself all the time how people can live here when it's this cold lol.
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Hello ladies!! Well round #2 is going today. I’m terrified of the nausea I can’t explain it. My WBC was uo to 7.7 yay it worked. The shot worked and bone broth helped! I am praying praying praying for lesser sideeffects this time around. Hoping this vomiting won’t be as bad. 🙏
Hope everyone is doing well.
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Daniz- yeah! I just finished #2 as well! My WBC was perfect so the torture of the shots and yummy bone broth worked for me too. Have to start the shots again tomorrow- so Claritin and Tylenol are ready to go.
Hariry- glad the wig went over well. Confidence is key. Rock it girl! I too love the positivity in this thread. Makes me smile.
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Hariry, you look amazing with your wig! You know, we are way more self conscience than people notice. Truth is most don't really notice! Heck, I picked up takeout last night from a place we've been going to for years...our friendly, regular waitress greeted me like normal. I was wearing my beanie and used to have gobs and gobs of long curly hair. When I told her I'm bald now, she's like, “Really? Wow, why?" Ha ha
Daniz, hope you're feeling OK this afternoon after #2! Stay on top of those meds to ward off the nausea!
I'm home from #3 and all is well! Actually came home for a bit and then went out for a few errands with my husband. The darn Decadron makes me so tweaky! My main errand was formy husband to take me to the pot shop. Ha ha. I picked up a bottle of CBD oil and some 1:1 CBD:TCH oil. I'm hoping these help with restlessness, nausea and headaches. Super informative and helpful staff at the dispensary. I was very impressed. I'm not a recreational user, so it's all new to me. I've done a bit of research and feel like it's worth a try. I'll be happy to share my experience if anyone is interested.
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Daniz1983 - sancuso patch is what I used for nausea - the oral meds did nothing for me. Ask about it if you have constant nausea
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Good afternoon ladies. Lots of us on the same schedule; I had Cycle 2 (of 6) today as well. Two days ago, my feet, ankles and legs started to swell with fluid so my MO added some Lasix to today's infusion. I was surprised this SE kicked in during Week 3. I've been feeling surprisingly normal from Day 8 after Cycle 1 until today. Each week, I got in a yoga class, 2 group strength and conditioning classes and 2 sessions with my trainer and my WBC stayed high the whole time. My MO was surprised about the fluid too and blames it on the Taxoterre. I'm supposed to call if it gets painful or have trouble breathing. Ugh. Now I've got THAT in my head.
Also, he undid the instruction my PA gave me about taking probiotics (Florastor) because there are indications (studies?) that the live cultures are causing infections around port sites. So, if any of you took up probiotics, maybe you should check with your doc. Regular yogurt with live cultures is still an alternative. Knock on wood, my GI troubles went away starting Week 2. I wound up commuting downtown 4 days each week and taking Friday's off for my Herceptin infusions.
Hariry, I'm glad your wig was not a topic of conversation. It was your post that inspired me to take matters into my own hands, get my head shaved and get on with it. Quite the anticlimax. I was so sure that colleagues were going to realize my hair got LONGER over the weekend. Most people who said anything noticed that the color had changed. I have told a couple of people at work who I work with daily and needed to know why I'll be working at home several days at a time. But I'm with SSWP, I don't have time to explain this to everyone, particularly people who'll only embarrass themselves asking stupid questions. I figure when my hair grows back enough to give up the wig, they'll figure it out and then I can just explain in a sentence or two. With radiation and Herceptin until the end of 2018, I am guarding my personal resources and energy.
Ejean, I think you've had Cycle 2 today? Hope you're feeling OK and can check in with us. Wishing you few SE this time around.
Mindy
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Frus with the short hairs all around. So I took a plastic shaver yesterday and started to shave my head, till the skin. It's smooth now. And I feel good.
Mjb, hope you're gonna get a new port, nicely put (I remember the pain you've been through getting the first one in). And what is cbd, tech? Some essential oils?
Daniz, are you feeling better today? Hope that you recover soon. Have you got the chance to keep your ponytail? Show us.
Diveslikeagirl, sswp, you girls are right. It's us who are aware of the difference. It's just another new hairstyle, maybe not -that-welldone
And how are you doing, Ejean, swewing, Laura, vl22, Mindy and the rest? Sending warm hugs...
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Hariry, CBD oil is cannabidiol oil. TCH is what’s in marijuana. Technically, both part of a medical marijuana routine. CBD oil has no psychoactive effects so can be taken anytime. It’s good for nausea, pain and all sorts of things...The added TCH at night is to help me sleep. It worked! I was able to fall asleep pretty easily last night and slept 6 hours before waking up. The dispensary I went to is very well respected and I feel good about it
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I've been considering actually shaving my head as well. I look like I have a major receding hairline from hats rubbing it off. The weirdest part is that the hairs are just sort of sitting there but not actually attached to anything anymore. If I had one of those lint rollers I'd probably be tempted to use it on my head. Ha.
When I got my mammogram/ultrasound & the doctor told me I needed a biopsy with a face that told me she thought I had cancer, I walked out and got some marijuana before I even went home. I'd had it before but was never a regular user. I swear it's the only thing that got me through the worst times because it let me be able to get to sleep & do things like relax and watch a tv show and actually enjoy it or maybe even laugh when all I could do for most of the rest of the day was cry.
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Thanks girls for your sharing of experience. I doubt I can find any of those dispensaries near my place. No offense but I'm always skeptical about substance use.
Wish everyone a lovely weekend. And.... another dilemma I have is whether to tell the neighbors. You see, I am too lazy to wear the wig for morning walk. Neighbors are someone not too close, but near enough to wonder-eh, what happened to mrs xxx? She has been different?
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Chemo 2 day 2: Feeling fatigued but otherwise ok so far. FEC for first three chemo infusions, then taxotere for the last three, three week cycles. Each time I have an appointment with the MO or a nurse, they reiterate that the taxotere has worse side effects than the FEC. Ugh.
Hariry: Concerning your question of whether or not to tell your neighbours - I tell people that I think will be supportive and not stress me out if I disclose. If I think someone might say stupid things, stress me out, or gossip then I don't disclose. Unfortunately, it can be hard to tell who falls in which category, just go with your gut.
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Hello Ladies!!!
How are you guys? Your messages are so sweet. I had my round #2 Friday and agh it's been a rough rough weekend again. Friday afternoon and evening were terrible. So much nausea and gagging/vomiting. I even stayed on top of the meds and still felt like crap. I wore the sancuso patch I put it on night before I just think nothing will help me with the nausea just have to see how to ride it out and get somewhat better. I'm literally in a fog. I lost 8-9 pounds again since Friday. Can't eat or drink anything. This just sucks you guys. Ive been saying that I can't do the last two rounds it's been awful you guys. I just don't know how i will handle two more times of this and then off onto Taxol 12 times. I have been mor negative this time around. 😞😞
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Hang in there, Daniz! I get pretty negative for the first week after treatment but the first few days when I'm on steroids + the bone pain are the absolute worst. I'm super stressed the whole time and cry over everything and don't know how I'm ever going to make it through treatment. It's miserable but you can get through it and it's probably not easy to have hope but it's possible that just the taxol will treat you a little different. I go in tomorrow so I'm dreading the rest of the week. I prepared a bunch of rice tonight and put it in the fridge for when my stomach is much the same as yours is right now. I'm going to try to force myself to eat more this round. We'll see how that goes. I lost so much weight last time that it felt real unhealthy & a bit scary. I made up for that in the past few days and pretty much couldn't stop eating.
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JVP, my hair is like that, too. I had round 3 of AC 2 days ago. Now my scalp is really sore again, so I suspect the remaining fuzz will fall out. When I went to get my injection yesterday the nurse advised against shaving, but close electric clip is ok I didn't ask why, but was never planning a blade razor shave.
The way I'm looking at medical marijuana is if I can use something natural to help me sleep and ease some pain/nausea, while reducing Vicodin and Ativan, that's a win for me. One teeny tiny drop of TCH oil has been so helpful to me. It's definitely a personal choice, though.
Daniz, I am so sorry you are having such a tough go. I lost 10 lbs. between #1 and #2. I was able to gain 4 back between #2 and #3. I think we will have ups and downs. Some days my appetite seems normal, some I can only eat a few bites. My MO tells me that the AC is the worst and Taxol won't be as bad. I've not researched it because I really don't want to “expect" anything. I'm going with the flow.
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Daniz, vent it out, if tears help cry out loud. I find that helpful. You are not alone. It's difficult, I even cursed the drs who told me " chemo is nothing. No one vomit nowadays. Everyone continues to work. "They have never been there!!!
We can survive this. Have faith. There's definitely light at the end of the tunnel.
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Jvp,mjb1018, Hariry,
Thank you ladies. It’s definitely not been easy. I have a question for y’all. Does everyone still have their periods? I was having tons of spotting lately but this morning oh goodness it’s crazy and so heavy. Does anyone else have this?
Today I’m supposed to go for an iron infusion and fluids. I’m honestly terrified of the side effects of that too since my stomach apparently can’t handle anything.
Hariry, I can’t believe What your doctor told you no one vomits nowadays. So rude. And clearly mistaken Bc I’m vomitting like crazy lol.
Mjb, This time around I got some oil in a vapor (e cigarette thing) but it didn’t work so well for me I’m not sure if it’s Bc the concentration is only 50% or what but I tried it I was so miserable I had to give anything a try. I think it helped a bit but wasn’t completely gone.
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