Chemo Starting September 2018
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I went through round 1 of TCHP on Friday, so glad to get it over with and at least have 1 round and the unknown behind me, I’m tired and aching but the se so far are manageable. You’re strong as you start this fight.
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Piksie, you are amazing! The pictures brought me to tears. Yes, I am extremely emotional these days too.
Dolceb70, good luck on your first round of TC. I hope you won’t have too many side effects.
MtKushmore, FB posts from my friends bother me too. Seeing them living their lives as usual make me feel bad about myself. No, it’s not like I don’t go out and take my kids to activities, but unlike my friends, I don’t feel like myself right now. I have said it many times, cancer won’t kill me, but chemo will.. as it feels like...
As I suspected, my MO will see me next Monday (my 4th and last infusion date) to discuss further with my options. It really makes me mad! I want to know what is going to happen to me now and what are my options! I don’t want to wait for one more week to find out!! Argh!
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Way to go Piksie!
JNKK - I don't think I can do gloves at night either. I can't even fall asleep with socks on. I've been using Gold Bond on my arms and legs, which seems to work okay. It's so thick it's like ream.
Beeline - I've been using coconut oil on my face for a year or so - now I'm also rubbing it on my bald head!
MTKushmore - my heart really goes out to you and others going through this so young. It does seem extra unfair.
Dolceb - Welcome and wishing the best for you. I have my last of four TC this Friday and I am so ready to ring the bell when I walk out. It's no fun, for sure, but so far it's doable. I also found it helpful to read posts of people who were just a mont or two ahead of me.
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Wow Piksie, amazing! You truly are inspiration for us. Way to go!
MtKushmore, I feel the same though I am 40! It feels unfair that everyone else around me is living a perfectly normal life with normal problems while i have to face this. In such low phase i start counting my blessings. Sometimes it works and sometimes it doesn't. But we are with you in this.
Dolceb70, welcome to the group. Hope your first round went fine and wishing that you will have minimal/manageable side effects.
NewfromNY, hope you are coping well after first round. Good to know that SEs are manageable.
JNKK, sorry to know about the rashes. Im sure MO will guide you through this. Hang in there.
Wanderweg, great that you will be done with chemo after the forth one on Friday. Best wishes to have an easy round. So glad that soon will be on the other side.
I am done 50% after the second round on 16thThankfully did not have nausea and managed bone pain well with advil. Flu like body ache and weakness were the worst symptoms. From 8th day of infusion attended 2 day exhaustive classroom training at the office. I was apprehensive to go to office with wig for the first time and irony is that i had to go to a conference room full of all colleagues who were attending the training. But everyone thought I got a new haircut and complemented me!! I personally dont feel myself in the wig, but as no one knows about my treatment, they did not feel odd about this hairstyle!! Also celebrated son's 7th bday. Had a very active and happening week. Currently my only complaint is that my scalp gets v itchy even when im not wearing the wig. I put oil after every 2 days and in next shower i use shampoo. Going to try to do it everyday. But i am not sure how will it impact the wig, i fear oily scalp may make the wig slippery. Will have to try it out. Any suggestions?
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Wanderweg-- I so understand. I sent you a private message...hope you find it!
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I'm better, today. Note to self: I feel better exactly 10 days after chemo. And then have 10 more days until the next chemo. Every time I feel better I feel like God has just come down from heaven to rescue me from excessive chemotherapy. I was at the point where I was beginning to think I'm just a whiny baby....when suddenly.....better. It feels miraculous, especially when I felt so lousy this time.
i sure hope my onc is wrong and these chemos don't get consistently worse. Is anyone almost done? Did it get harder or easier? Maybe I don't want to know. At least I'm glad, so glad I got through this one!
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Piksie - You are so awesome! I love your pictures. I'm motivated to go exercise as soon as my heart rate goes back to normal. I heard exercising does help with SE so you're a great example!
JNKK - So sorry to hear about your allergy. A friend of mine almost died from allergic reaction to his medication (not even cancer-related) so this can be very serious! Take care!
Welcome to all the newcomers, hope you find all the encouragement and information you need here!
On my neuropathy, unfortunately icing my fingers during Taxol #8 and 2 subsequent sessions of acupuncture did not prevent it from progressing from just 24x7 numbness to mild nerve pain up to my forearms. Thankfully my MO prescribed Gabapentin and taking it keeps the pain away for now. As a bonus the medication also makes my hot flashes almost unnoticeable, and helps me sleep better. If I do need to stay awake I just drink tea, since my caffeine tolerance is quite low to begin with. So for those of you who are starting weekly Taxol, if you start feeling numbness early (I think Taxol #4 for me), you might want to make sure you have a prescription ready.
Last night I dreamed I was attending some cancer seminar with a bald head. I guess the idea that I'm a cancer patient has finally sunk in to my sub-conscious as well. Recently when I went to the zoo I was told a chinchilla can have 50 hair per follicle. Wish I can share some of that! Here's a picture I found online, wishing all our hair regrowth can be abundant as well!
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JNKK, I hope you got some answers yesterday at your appointment and feel better, that is scary and thinking about you.
Piksie, thank you for posting! I have not been working out as much as I'd like to and need to and the pictures are inspiring. You rock!
KK2018, Hamilton was AMAZING and worth every penny. I went in "cold", had not listened to the music and only knew basic plot and it was 3 hours of pure enjoyment. The fact that my beloved Red Sox later won the World Series made it a pretty awesome day.
My bumps persist. Not bugging me so much physically as the fact that they exist. It is my psychological as I want them to be from the chemo and not from something that will require another biopsy (recalling my experience from a few years ago). I have an ultra sound on Friday am for some abdomen pain I was having consistently on one side, not horrible, but consistent, more during my period. It has lessened - and I have not gotten a period since 9/18 (the night before my second chemo) - but I'd mentioned so I can't take that back from my primary care and have to go and do it. Hopefully it is nothing. I found out a few years ago I have a unicornuate uterus, and it's on that side, so likely the cause. I just have ultrasound/biopsy/medical test fear now. I imagine that won't go away.
Final TC Chemo is tomorrow. Psyched for that, seriously. It'll be Halloween and the Red Sox parade, so will have something to watch on television during the infusions. I had my radiation consult yesterday and that went well. They were super nice and they have a much nicer waiting room than the cancer center and infusion area. So that's a plus. Initially the resident suggested a bunch of creams, products that I said hell no to - why they suggest that I slather myself in petroleum is beyond me. But my actual radiation oncologist - who I love - came in and told me what non-toxic products to use. They all talked about how well I'm doing during chemo. So even though I'm bloated and feeling fat (I've gained about 6 lbs but it feels a lot more) and fatigued most of the time, I know I'm doing well and that was nice to hear.
Dolceb70, I hope that your first round went ok!
And that chinchilla is hilarious. Made me laugh! We can all be so lucky.
Have a good day all.
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Tigerlily, I have to wait until next Monday, last infusion, to find out my options. I emailed my doctor yesterday again asking if she thinks i might be allergic to Neulasta but was told it’s unlikely. I am out of ideas.. I am trying to play doctor right now yet again... I am seriously afraid if this allergic reaction happens again, I will be dead! I too was told how good I am doing with chemo, but look at me now!! Blah!
By the way, congrats on making it!!! Ring that bell tomorrow as loud as you could!!!! And please do post a picture for us to see.
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I’m on day 5 after my first infusion and still have zero energy and almost no appetite, I’ve been having a hard time, feel like I’ll never feel close to normal. It’s really hard to deal with hope I feel better in a few days
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Newfromny - what’s your chemo regime? I’m on AC and only just start turning the corner on day 5. By day 7 I’m pretty much back to normal but still a bit fatigued. Hopefully you’re almost there!
Piksie - amazing! Thanks so much for sharing pics! It’s that’s what a vodka and ice cream diet does, sign me up!
Tigerlilly - good luck on lucky last! Ring that bell!
Brink - love the chinchilla fur. I could def use some of that!
Being positive - too funny about the wig, right? I have mad much the same experience, lots of compliments on something that to me is so obviously fake. I think most people are perfect fly happy to take things at face value which can be a benefit in these situations.
Today is day 2 of AC #3. This one was so hard to make myself do. I wanted to blow raspberries at my onc (who I really like) like a kid. Things have definitely gotten progressively tougher for me but I am just hoping that as with the last 2 I feel ok today and can take the kids trick or treating before the worst of it sets in tomorrow.
Thinking of you all!
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MtKushmore: I'm also in my 30s and have felt similar this week. Although I know at any age, there is such a range of emotions. I started thinking about endocrine and other therapies that will be coming next year and that kind of bummed me out, just thinking about the different options and more decisions. I'm trying to just focus on the step I'm on now.
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Fairchild: I was wondering how the chemo infusions will progress as well. My oncologist actually said not to fear the worst. Though it is of course different for everyone, she said she has lots of people who proceed similar to the first, that sometimes fatigue accumulates and temporary neuropathy symptoms - but to not assume it will be awful each time. I can only hold on to that hope and hope I don't learn differently! :-)
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beeline: I’m on TCHP it’s rough hope I turn the corner tomorrow, no energy and no appetite, I feel so useless
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So I have passed the 24 hour mark of my first TC infusion. So far things have not been bad. I slept well after taking melatonin to counteract some of the steroid buzz. When I woke I expected to feel some nausea but thankfully it was not present. I took advantage of the lasting energy from the steroids and took a 3 mile run this morning. I saw my nurse this afternoon for my neulasta shot(taking claritin to counter bone pain) and she said to be on watch for the nausea tonight through next Friday. I have my pills on hand for those first signs so I can counter the blow. I have been eating to keep things in my stomach and drinking a TON of water. Feeling tired tonight, with some occasional mild/moderate stomach cramping/pain but nothing that is too overwhelming. I ordered some scarves and hats tonight and trying to decide if I will purchase a wig at the end of the week for the days I feel like I want to have hair. More than anything I am savoring every minute I feel good. Never realized how much I took for granted the power of a good minute.
To everyone on their last round, first, second, and then some, I am in awe and so grateful to read all of your posts. I see through all of you that I will get through this when I read all of your stories. The good, the bad ...all of it. A struggle beyond what anyone would wish for but it can be conquered. Big hug to each and every one of you. Positive vibes and love always to each and every one of you. I truly believe it helps.
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@Newfromny - I'm on TCHP too, and it's totally normal! I feel like liquid dog sh*t days 5-6 (no appetite, zero energy, can barely reach the controller to tell Netflix "Yes, I'm still watching"), and it starts getting better Day 8ish, and by Day 9 you'll be feeling magically almost back to "normal". It's wild. I was just thinking a couple nights ago that it's mind-boggling how much "better" you can feel after a night's sleep, and your body has had time to sort out X, Y, and Z. But yeah, you're in the worst of it-- but it'll get better!! I can only say that because I'm on Day 8, haha. You can see my post from two days ago where I was ready to crawl in a hole and bury myself for eternity.
@BT39 and @BeingPositive - I'm so bummed to see y'all here in this club. Worst. Club. Ever. But yes, this is a garbage time for everyone, regardless of 20-90! It's so unfair no matter the age. I am always incredibly cheered when I see people pop into these forums like 10, 15 years later still cancer-free. I'm incredibly blessed that other aspects of my life are going well right now, but boy, I wish my only troubles were like... getting a flat or... getting the wrong Starbucks order or something. The other day, one of my friends was having the "worst day ever" because she accidentally put her ice cream in the fridge. *sad trombone*
@BrinkOfEternity MORE CUTE CHINCHILLA PHOTOS PLEASE. Ladies, I'm ok if we just agree to start signing all our posts with cute animals. Just gonna throw that out there.
To all you headed towards your last infusions, congrats!!!!!!!!!
Regarding wigs, I recently met a friend of a friend who was visiting from out of town. Perfectly lovely girl, had a lovely conversation. Later that week, I was at the friend's house, where she was hosting her pal, and there was wig chilling out on the couch, air-drying! I didn't ask about it, but the point is, I never would've guessed in a billion years it was a wig. It just looked like normal hair!
I've been cold capping this whole time, and I am shedding like WHOA, and I feel like a total creature, but no one's noticed yet. So yeah. I guess I'm happy people in general just aren't that perceptive.
@Fairchild, I heard from my friend who's been through this (AC+T, though) that chemo doesn't necessarily get "worse." Things are just vaguely different each round, but more or less follow the same pattern. She did warn me ahead of time that the halfway point sucks the most mentally, because you think, "Wait, I have to do all of this #@$# AGAIN?" So I'm looking forward to #4/6 (not).
Interestingly, last round I had really bad headaches almost the entire time, which I eventually blamed on the Herceptin. This round, I haven't had any......
Ending this with a picture of my dog.
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dolceb70: I'm 8 days past my second round of TC. Glad to hear your first infusion went well so far! I think staying active is super helpful. I took Claritin for 4 days the first time and ended up getting a day of bone pain on night 6 into 7. Very manageable still, took 2 Advil twice and still walked a lot with my kiddo during the day. This round I kept the Claritin up for 7 days and didn't - at this point - get that day of pain, just a few minor twinges here and there. I did get a mild fever both times with Nuelasta, ranging from 99.4-100 on day 5. So you might notice that as well.
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Hello all, especially those who've recently joined. Sorry to meet you this way, but delighted you, like all of us, have found your way here for knowledge and encouragement. And most importantly, community. We all need our tribe!
I've just graduated from dose dense fortnightly AC to weekly Taxol (first Taxol 24 hours ago). I have to say each AC round was completely different. In the end I only did 3 of the 4 scheduled because of effect of my heart muscle function. First round was awful, lots of nausea and trouble swallowing meant i was dehydrated and not eating enough. I had additional anti nausea meds for the second round, and felt 150% better. then the third round left me really fatigued (maybe associated wiht the heart stuff?), and also with milder but more persistent nausea. So the main thing I learned was to accept that I am now unreliable - can't really commit to anything with any certainty.
Miraculously, my sore mouth has instantly improved with the Taxol (and accompanying meds), and the cough has reduced a little! I soooo hope that continues!
The other thing I have learned is to take people at their word when they say "let me know if you need anything". They mean well, and I'm sure they don't realise what a burden that puts on us. But after I spent too many days feeling miserable and isolated, I started reaching out. I'm a people person, that's where I get energy, and if I sit at home for too long I start to spiral down. I had depression in the past, and do NOT want to carry that again. It's not easy asking, but I have said "I'm walking out for a coffee tomorrow morning. Would you be free to join me?', and "I'm at home this afternoon, would you like to drop in for a cup of tea about xx?'. Keeping it simple and specific seems to work, and it helps me to have (non medical!) appointments that are not too big and within my energy levels to cope with. I have also taken up a program my employer offers where I can have 6 free counselling sessions. I've been for the first one, and it was really helpful to make a space to talk about what is going on (lots apart from treatment) in a safe space to someone who's not involved. Tiring, but will be worthwhile, I think.
Most joyfully, we've welcomed our 9th grandchild 2 weeks ago. A beautiful little boy, Nikau. He's our daughter Sarah's fourth son! The big brothers are doting on him. Here's a picture of the smallest big brother, doting. I think he's even as cute as the chinchilla:-)
Blessings and courage to all.
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Tigerlily - good luck on today’s last round! Ready for mine on Friday.
Brink - they have therapy dogs come through the chemo waiting room but now I’m thinking they need a therapy chinchilla. So cute.
MTKushmore - I have that same internal reaction to minor complaints from people. “Oh, you have a cold. Gee, poor you!” (Gorgeous dog, by the way).
Sue - good idea to issue those invitations. I was given the name of a mutual friend who is early in her chemo and sent her a message suggesting a coffee get-together. Someone did that for me early on, and it really helped. Great photo of the grand babies.
My most recent chemo weirdness: my younger son called after I got home from work and said he’d lost his truck keys. He gave me the address of his new work and I looked up directions. Except I misheard the number and got lost. I was in an area of town I’m reasonably familiar with but once I realized I didn’t know where I was going, I just melted down. Couldn’t think clearly, couldn’t stop crying. It was crazy. I just could NOT get myself back on track, which is very unlike me. It finally dawned on me that the confusion and emotional stuff was all a chemo effect.
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It is funny that even though I enjoyed the time with my family at the zoo, what impressed me the most was the chinchilla. All I could think about was how much hair it has!
On the accumulative effects of chemo. For me the only thing accumulative is the neuropathy from Taxol. My body overcame the joint pain early on through exercise and nausea/fatigue have gotten better as well.
Tigerlily318 - Congrats on your last infusion!
SuefromSydney - Congratulations on the birth of your grandson! I’d say he’s cuter than the chinchillas
MtKushmore - These are for you!
Hope everyone can feel better from looking at these!
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MtKushmore Thank you for your encouraging words felt a little better last night and then today day 6 the exhaustion seems to come in waves where I can barely move, hoping to turn the corner
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@BrinkOfEternity That chinchilla butt had me laughing out loud. Amazing little critters. I may not have their hair, but this feels like a good consolation prize.
@SueFromSydney - Congrats on the grandchild!
I just wanna say I'm jealous of all of you who have therapy dogs and TVs in your infusion centers. Mine is so boring in comparison. They don't even have music! I don't think they even have a bell.
Is anyone here doing the Neulasta On-Pro patch instead of the shot? I was very vocal at the start of my treatment about using this, so my infusion center used me as the guinea pig. It was kind of funny, because the first two times, I had a giant crowd of nurses around me gawking as it was applied, because no one else had asked for it! It's been great so far. I only live ~40 minutes from the doc's office, but it's nice not having to go in the next day just for a shot. The only weird thing is smacking into walls because my brain forgets there's a thing sticking out of my arm, but it hasn't caused any inconvenience other than that. I even went to a conference with it under a long-sleeve shirt and cardigan, and no one noticed it (or the blinking light).
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Quick question for y'all-- has anyone else doing chemo neoadjuvantly felt more... hyperaware of their tumor site? When I mentioned site soreness to a friend, she said her MO had said it was a combination of inflammation, apoptotic response, and that you're a little more aware of things happening in that region since you're probably thinking about it. At my last MO appointment, when we were talking about how the area where the lump used to be is still kind of "thick," he also said it was basically inflammation and cell death.
This past week though, it's felt a little... fuller? I can't feel a lump at all, though. So maybe it's just another manifestation of the hyperawareness, or just general paranoia. I see my MO tomorrow, but I just wanted to see if anyone else has "felt" anything in the boob area.
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MTKushmore - The Neulasta on-pro is standard where I get chemo. Although I don’t care for the feel of the cannula being placed, I’m super glad not to be coming back for a shot each time. I have really thin arms, so mine goes on my belly.
Tigerlily - Did you ring the bell yesterday?
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I wasn't expecting the cannula at all the first time so it totally freaked me out. None of the nurses really knew what to expect so they all jumped when I yelped. I don't know why they designed the darned thing to beep......... wait in complete silence................. and then BAM! when you're least expecting it. Come on, guys. Just give me 3 beeps and slap it in. It always reminds me of when people do the thing where they threaten to flick you on the forehead, and you start squirming from the anticipation.
Update: I asked my MO about the fullness/heaviness, and he just sort of waved it off. He says he can't feel any lump at all anymore, or any thickness.
I'm also in a great mood because while I was sitting at the doctor's office, I got an email saying that I scored a hiking permit for The Wave in Arizona, which my partner and I have been entering the lottery for every single month for almost 2 years. So we're finally going in February!! It's so exciting to have something like that to look forward to after all this chemo nonsense.
Next year's already looking up!0 -
MtKushmore – I also get the On-pro patch. The first time on my arm, but the following three were on my belly. I never realized how many doorways I run into in a day! The company is supposed to provide a sharps container to return them in, but I just got mine yesterday after the nurses made one online request and two phone calls. And congrats on The Wave permit!!!
SueFromSydney – congrats on the beautiful grandbaby! Xoxo
Tigerlily – done??? OMG! Yay!!! Can't wait to hear about your radiation adventures.
BrinkOfEternity – re: neuropathy, did you ice hands and feet throughout your Taxol treatments or start at #8? I'm starting Dose Dense Taxol 11/7 (b-weekly; four treatments) and it's really got me worried. MO is of the firm belief that icing is ineffective based on the biology of the process (specifically, that the damage happens at the spine, not the fingers/toes), but I might do it anyway. Just trying to figure out the logistics as the infusion center doesn't provide it. Maybe a bucket of ice for my hands? All the reviews on gloves discount their ability to stay cold long enough.
My chemo weirdness: I love Halloween! This year, I pawned my kids off on other people, dimmed the lights, and ignored the doorbell. I had so many fun ideas on incorporating my bald head into a killer costume, but when the time came, I just didn't have it in me. I'm sick of being bald. Oh – and I had to get my government ID renewed on Monday which requires a new picture…. The guy taking the pics asked if I could take my hat off. I said, "Um… I can, but I'm bald." He had the deer-in-the-headlights expression, but let me keep my head covered. As soon as I have the slightest shadow of hair, I'm getting a new ID.
Healthy vibes to all of you! xoxo
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Hi all!
Sue, cute, cute babies! Congrats.
Yes, I am done, thank you all for the congrats! With the infusion anyway. Felt decent today. I do have some form of mouth something, but not full on thrush as my tongue is clear. Got the prescription mouthwash that tastes like fruit and looks like snot or regurgitated bananas depending on your point of view, but no antibiotics or whatever else they give you. No bell to ring - just lots of hugs - but it makes sense as I'm not done yet. Looking at having finished round 2/4 - surgery, chemo, radiation, hormone therapy. In addition to radiation mapping on 11/12 and starting 12/3, I scheduled my first Lupron shot for 1/2. Happy New Year to me!
The nelausta (onpro) shot is the standard of care at MGH. I asked yesterday how many get it and was told almost everybody. The thing should go off in about 40 minutes. I love saving the trip and overall it is good. But I hate you can't shower or work out more than walk with it. I would have loved to do yoga today while I'm on the 'roids, but I'm afraid of ripping it off.
Piksie, I hear you about the ID! I got married January 1 and have not changed my name! I realized if I do it, then I need a new license and so I'm delaying. My license which requires a new picture expires on 3/19, so hoping for hair by then!
I am chopping off my cold cap mullet a week from Saturday. The scraggling stuff no longer looks any good under a cap, so hoping for regrowth. My MO was cool with it. I told him and he agrees that anyone doing Paxman needs to wet their hair more than they say to - he's talking to him about it. So some advice. I have thin hair but a lot of hair and I don't think it got through the first round. Minimal shedding (relatively) since the first big loss after the first round.
JNKK, looking forward to you checking in. And Mt. Kushmore congrats - something to look forward to!
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MTKushmore - Ha! I have had that onpro put on three times and I yelp every time! You think I’d be used to it by now. I’m sure he’ll do the same thing tomorrow. Very cool about hiking permit! That really is something to look forward to.
Piksie - I also ran through several costume ideas incorporating my bald head, and ultimately didn’t feel like it. We did go next-door to the neighbors house to hand out candy, and my husband went straight from work. He’s a medical assistant, so he was wearing scrubs. We joked that he could be an oncologist and I could be the cancer patient.
Tigerlily - Glad you checked in,
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Hi everyone. I just had my 3rd round of TC yesterday. Today it hurts so bad to swallow. In terms of side effects, this a first for me. Everything I read pertains to what to eat in these cases, but how do I stop the pain? It's terrible! Thanks in advance to anyone who can help.
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@Piksie- For my hands, I bring a little cooler of ice to the infusion center, then fill ziplock baggies with ice for my fingers. It gets super cold so I'm not as good about keeping up with it the whole time as I should be, but I figure it's better than nothing. For feet, I use these NatraCure socks I bought on Amazon that has pockets for gel packs. When the gel packs start warming up, I toss them back in the cooler and use temporary ice baggies until the packs drop in temp again.
Your comment also reminded me that I never got my sharps container even though I requested it from them almost 2 months ago! They've just been sitting in a Tupperware...
@Tigerlily318 Congrats on being done with this part!!!!!!!
And thanks, all.
I'm soooo looking forward to post-chemo life!!!0
