Starting Chemo April 2016
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Best of luck to WERWARRIOR's Mom for tomorrow starting her AC chemo. Come back and tell us how it went.
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Hi everyone!
Looks like I am joining your club just under the wire - my start date is Friday, 4/29/2016.
I delayed my start date to do a cycle of fertility preservation. It was... unpleasant. But, it was successful and it's over, so onward and upward, I say.
I saw my med onc today - even though my ER is weakly positive, he is convinced (based on the proliferation and recurrence ratings) that it is more like a triple negative, and he wants to treat it that way. So, I am starting A/C this Friday -- we're doing dose-dense, so it will be once every other week.
In preparation, I got an awesome shorter haircut on Sunday, which is serving to help me put my game face on for this. I'm scared, but not terrified. My med onc is optimistic I'll tolerate everything well, and I appreciate that outlook. I'll be reading through the threads for tips.
Anyone else starting this week?
- Liz
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Kidsid22 - My first chemo was on the TCHP regime ( perjeta as well) and I had several side effects day 3-10, including fatigue/ significant GI tract issues, heartburn etc. Spoke to my oncologist and she recommended going for a short walk outside even if I absolutely felt I had no energy and I have built strength now. I swear that it has helped considered, stay hydrated and eating anything I could bear to at regular intervals ( tried healthy eating but could not bear some foods- advised to eat whatever I could and worry about healthy eating post chemo). I am also going to take Nexium for heart burn next round of chemo. Last 10 days have been much better and I feel fine now. I am doing a little bit of work from home but not working full time and based on my side effects I would not have been able to.
Next Chemo is tomorrow 27th my regime was changed from 6 xTCHP, 4x THp and 4 x AC as I have a heterogeneous tumor both Her 2 positive and parts of it negative.
WeRwarriors - good luck for your mom she is lucky to have such a supportive daughter.
Cjsharma you really are an inspiration for all of us and your posts keep me going.
Numb glad you are better.
Now off to prepare bag for chemo tomorrow.
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I have an interesting question for those who are entering the hair loss stage. Apparently my MMM chemo causes hair thinning, but probably not total loss.
My scalp has been very itchy the past few days, and now my hair is all standing on end! I have always had quite short hair, but before chemo started I had it cut even shorter than usual. It's normally very straight (obeys the laws of gravity and not much else), but now the really short bits on top are starting to stand up. It looks ridiculous, so I might have to start wearing hats sooner than I was expecting, just to hold it down. Thankfully New Zealand is heading into winter, so I won't look too silly wearing a woolly hat all the time.
I've heard that people experience the itchies, but not the standing up part - is that normal, or is it because I have been sleeping most of the last few days? I wet it down all the time, but it isn't helping.
Suggestions? Ideas?
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Welcome NWGoldfinch! Sorry you had to join us, but I'm thankful you did. We have quite a few starting this week, and Zoziana is starting with you on Friday. Fingers crossed for you! Sorry your fertility preservation was unpleasant, but you'll be glad you did it, I'm sure. We have a few triple negatives on here as well. I'm going for my 3rd round (same regime - dose dense AC and then T). I tolerate the chemo fairly well. Only words to the wise I have is make sure you take all of the meds they tell you to.
PositivePower - what a sweet thing to say, thank you! You made my day.
You are on round 2 of TCHP? Almost half way done with that one? I actually found the symptoms were less after the second dose - this one should be interesting, too. Good luck! I'll be thinking of you tomorrow.SueMS - you had me chuckling, and I know it's frustrating. I'm sorry. Would some gel help? Just a light layer to make those errant hairs lay flat? The itchy part I can absolutely relate to - my head still itches even though I have about 50 hairs total on my head.
I'm better today than I was yesterday (probably because my report went well). Ready to go home, take my hair off and relax.
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Gracietoo
Thanks For your positive words. Looking at the big picture is an excellent idea.
Have a great & healthy day
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Hi everyone,
Just catching up with everyone. I'm on day 13 off Round 1 (TCH, every 3 weeks). I'm feeling great. Been really enjoying work although its been busy. I had fun Sunday spending about $150 on art and wall decorations and put everything up yesterday. Its such a great difference, I love it. I have a seat cover coming for this ugly old loveseat and that will make a difference. Then next month, I am going to get seat covers for the ugly old chairs.
Had a little fever yesterday for about an hour. Today I went to get my WBC booster shot and was running a low fever again, 99 degrees, like last Thursday when I got the shot. So I just came home from work and am laying low. Its down now, so yay – without Tylenol. Go body! My WBC count last Thursday was 2.2 (low end of normal is 4.0). They didn't even call me about it so it must not be very concerning. The nurse told me to take Tylenol and Ibuprofen and I know to rest and have fluids. I decided to not go to a meeting that I wanted to go to tonight and yesterday just rested all evening.
Hair loss. I've heard day 14 is the zinger day so I'm hoping to see that the cold capping extravaganza is successful. Cold cappers shed around day 20, up to 30% so day by day it will show.
SueMS – You hair is going "VIVA LA RESITANCE!" I'd say color the tips red and go with it! That is great that you will just thin, I'm hoping for that too. If you get a lot of thinning and you feel self-conscious, check out the hairpieces on wigs.com. I went and looked after seeing CJ with her halo and cap. It made me feel less nervous about cold capping results.
Positive power – Round 2! Yay! Check it off the list. I'm on TCH. Let us know how you do. Having the first round behind us is great.
Welcome NWgoldfinch! We're all here for you and then if you jump in on the May forum, you can bring your experience and ally fears! "Scared but not terrified" is great, next comes "Annoyed but not scared" then comes "So thrilled to be half way done" then comes "Its over, it was doable afterall." I hear so much that the worst part is the anxiety, for me I am thinking yes, this is true. Any little thing and I get big fear thoughts – today I had these floaters like you see when you are getting faint – probably related to my WBC shot or something like that, but my mind went "can you go blind from chemo?" I'd like to shoot that part of my thinker!
NJR – YES!!!! Thrilled you are now half way through your AC! Awesome!
NUMB I'm so glad to hear you and your WBC count are rebounding! We'll all be thinking of you on Friday. Thank you for your constant presence on this board and all the support you give.
Creatyourownsunshine – I hope your round well okay and that you can manage the SE. You'll see the port thingy is easy. As hard as the genetic tests results must be, it's a big advance and protective for you to know. Sorry you have to deal with more meetings.
Kidsid22 – I'm sorry that you are having this much trouble but I'm glad that you are able to get the support to take the time off. I'm on TCH every 3 weeks and I'm on day 13 after Round 1, I'm doing fine. I took a long weekend off after round 1 and went back to work last Monday. Yes, I checked it out about women working on this regime and heard from women who managed to do it with some days off. But it's all so personal and who knows? I hope your MO is helping you with your SE and I'm just glad you get to be off and can take the best care for yourself. I'm taking it one day at a time, and grateful that right now I can work.
Hikerchic – I hope it all went okay, how was the cold capping? I remember the first round eve and how busy my husband was and I was getting it all organized – a great distraction! Be up on managing your SE with your round 1, I hope you do well.
Gracia – I'm glad that you got to have a meltdown, I had one too – even my best friend on the phone couldn't help. But then the spirit rebounds.
CJ – thanks for the nutrition reminders about supporting our immune systems and WBC. Sorry you had a down mood day but it'll happen. I'm glad that you have so many people around you, you are such a love and light! Really you just rock. CONGRATULATIONS on your presentation, knew it…told ya! So proud of you!
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FUN FACT FOR THOSE WITH LOW WBC COUNTS:
- Spelunking or cave exploration should not be done during periods of low white blood cell count because of the risks associated with bat guano exposure.
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HAHA! That's brilliant, Annie!
If only I could stay awake to drive the 2 hours to the nearest cave, I'll bear that in mind. Never mind the hip mets, the arthritis, etc - spelunking was going to be my new hobby - NOT!!
On second thoughts, the Waitomo Caves have only glow-worms - were you warned about glow-worm pee too?
Sue.
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See? no bats!
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Happy Wednesday everyone,
I've taken my meds and am now off to face round 2. Feeling nervous but positive. I can honestly say that this positivity us due in no small part to you amazing women sharing your stories and daily encouragement.
Hopefully, all going well, I'll be up to doing some Spelunking later on this afternoon! Is anyone with me???
Have a great day x
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Good morning everyone, you all seem so upbeat, this cancer is certainly not getting anyone down here and that's great. A good few on their second rounds too, we are galloping along. I got my scope done yesterday and pleased to say it was all clear, no need for a biopsy, thanks be to God !!!
NWKGOLDFINCH - welcome to the group. You will find great support here.
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New to the group and will be starting tomorrow. I would need your positive uplifts - the waiting is tough on anxiety. Wish me luck tomorrow
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Jlb2016 - Welcome to our group. I'm having my second round on Friday so we are in this together. Don't be scared about the SEs, you'll soon see that this is very doable.
I had my bloodwork today and results are just great. My WBC is back to normal (4), and other things are either normal or very close, so enough with the green tea and yoghurt. I'm eating ice-cream today!!
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JLB - Welcome! Happy you found us, so sorry you have to be here. Waiting is tough. I swear it's tougher than the actual treatment. What treatment are you undergoing? Let us know how we can help you best, and know that we are thinking of you!
Annie - you're spelunking quote was hysterical! I promise to do my best to avoid bat guano. I have gone spelunking but I was in high school at the time. We had to go through this one spot that was narrow and my portly biology teacher got stuck and started laughing. His head was clunking on the roof of the cave as he laughed. (Odd things we remember over time). He got out, but he was such a great guy and fostered my love of science.
SueMS - now I need to come visit you and go visit that cave. I looks gorgeous!
Gracie - GOOD LUCK! Keep us up to date with how you feel! We're cheering you on!
Yay Numb! Great news about your scan!! It's always wonderful to have one less worry, isn't it?
I got my results back from my Echo. Everything looks basically normal. So that's good. I have an appointment with my Oncologist today, and will go in early for the blood work. Fun times. Getting ready for round THREE tomorrow. Man! One more of AC after this!
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JIB2016 - You are very welcome. Don't know what chemo you are starting, but best of luck. Maybe if you filled in your profile and made it public we would see where you are at. Don't worry once you start treatment it takes away a lot of the anxiety, it is the waiting for things to get going that is the hard part. We have all come through our first days and so will you.
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AGHARTA - That's great that your blood is back to 4. Mine was only 1.5 last Sunday but they said it would come up during the week, I hope so.
GRACIE - best of luck for round . You are doing well.
CJSHARMA - thanks, yes it was such a relief to hear the words "it was perfect, you didn't need a biopsy". Glad to hear your echo was normal. Round 3 tomorrow for you, I can't believe it, I haven't even done round 2 yet and some of you are on round 3. I can't wait for the day I can say "only one more to go".
ANNIE - thanks for all the encouragement, you do great posts. Yourself and CJSHARMA keep us all going.
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Numb - well, 1 more AC to go. I have more Taxol. And I get to figure that one out, too. Fun times.
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When do the side effects kick in? I had chemo on Monday and did my Nuelsta shot yesterday. I had trouble sleeping Monday night and was tired yesterday, but today I am feeling fine. My mouth states a little funny, but thats it.
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Sheri - So happy to hear you're doing so well! That's awesome! For me, the only real side effects I get are tiredness between days 5 and 7 (last time it was 5 and 7, but day 6 I felt fine... go figure). I lost my taste the first round days 5-7. But the second round I did not.
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Sheri- We are all different. Mine kicked in immediately!!!
I have mostly been active in the FB group since it is more convenient. I had a really tough time with my first round last week. Three hours later, side effects! That was a good 3 days and miserable!!! For a few days, I was a little dizzy & tired, but that was it. Yesterday, I got hit with the worst stomach cramps ever & brutal hot flashes. My mom almost called 911! But it went away after I pooped & no fever, so doc said to keep checking temp. I've been constipated, so he thinks it has something to do with that.
I'm 8 days post round 1. I hope the next time is better because if it is worse, I won't be able to function!
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TWAZ - My first round wasn't great either but I got through it and thinking back it really was manageable. I am still here. I had a bad day on day 6 but I had to go to the hospital for tests and I was both exhausted and nauseated and that didn't help. Next time I will be on better anti nausea and hopefully I won't have the same problems so I am hoping to manage better. Days 5, 6, and 7 were not as good as the rest of the days, now I thought this week would be a breeze as it is my 3rd week past chemo, but I have had to take 2 anti nausea tablets this week so far and I have had an upset stomach too, but I think this is down to the antibiotics I am on. There is always something. I was constipated at one stage two and took 2 Senekot and when they kicked in I went about 7 times in the space of a few hours. So Senokot is out from now on. You learn as you go along. I even thought like you do on my first week that I won't be able to do this again, and certainly not 3 more times, but now that I am much better I can do it.
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Grateful my slight fever went down, had some sweating during the night so my limited WBC army is working. Have a tiny sore throat but that's one of the Taxotere SEs, and a tiny mouth sore. Just little annoyances. So today is Round 1 Day 14 and I did not find any hair on my pillow…feeling more hopeful about the cold capping. I know its silly to expect day 14 to be hair falls out day, but I'm not seeing anything.
I'm hopeful now that my WBC will rebound and by the weekend, I can take this trip to meet up with newly pregnant and very nauseous daughter J. Thanks Numb for the info that WBC come up after 2 weeks post. So I'm in that week 3 rebound of my TCH regime. Feeling a bit tired today but Monday and Tuesday were way too busy. Gonna be a nap time at lunch for me today at work. I tend to overwork until I am all caught up and then relax but I think today I will pace myself.
Gracietoo – Yes! Spelunking right after chemo rounds! I'm in! We will just have to wear bat guana protection masks – bright pink ones.
Suems – You can descend into the cave upside down so your hair will be pointing in the right direction! Very cool pic…I'm claustrophobic so that's the only way I'm going to see the inside of a cave in New Zealand!
Numb – that is super good news!!! I'm so glad. One annoyance DONE!
JIB – Welcome!!! You'll do fine, its crummy but if you keep up on the SE and use the regime, its squashes the SEs until they start to pass. Most people it seems have some down days, maybe 1 to 3 at different times during that first 7 days. Once you go through it, anxiety goes way done because you do get to feeling better again and can be more in your life.
Sheri – I love that questions! "When do the SE quick in?" You're doing great and that's awesome. A bunch of woman get their second round and are asking the same questions which helps me when I think about next Friday.
CJ YES! Three down and have way through AC already! I'm more the tortoise pace on this but that's enough for me. Yay on your echo! Yay exercise!
Twaz I'm so sorry that it was rough, I had some totally miserable days but I have some regime changes that will help, plus knowing that it will pass. One of my coping skills is thinking of OTHER health problems I've had and how I felt worse then. It sounds funny, but it helps me put it in persepcttive. I really don't do "sick" well at all. Most of what I'm hearing is that Round 2 is way easier.
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Day 3 round 2 - doing pretty good. I was really tired day 1 - went to bed by 9:15 and slept pretty good other than bathroom trips! I now have something to help with sleeping while on the steroids - my biggest issue last round - so hopefully that will help. Definite movement on the hair front. Had a good dozen all over my shirt after blow drying yesterday (day 15) - and yes I've been paranoid about the whole washing and styling thing! Knowing perfectly well that cutting back on all that isn't going to make the hair last longer! Then when I brushed this morning a small clump pulled out. My husband just says that shows the chemo is working. Sure but it still sucks. I'm a pretty low maintenance person and having to figure out all this wig and hat and scarf stuff is just too much work! My son's last high school orchestra concert is tonight and I may just wear a hat there depending on what continues hair wise today. More to remind me not to touch it - since I got it cut shorter I've had a habit of constantly tucking it behind my ears. I don't need to be sitting in the auditorium with strands of hair in my hands! But I guess I have an old school mentality about it being rude to wear hats indoors so i'm thinking I might feel weird - oh well, the kids these days wear hats everywhere, don't they? My husband agreed to buzz when the time comes and I'm already anticipating a meltdown when that happens - I get teary now just thinking about it.
Annie - so glad I didn't have a spelunking trip in my immediate future! But suems that place looks amazing!
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Hi ladies,
Reporting in after my 2nd round. Last week was all about hair loss so I wasn't up to posting much and probably spent too much time sulking. It was something I expected of course, but once it finally started happening I did not handle it well. Plus, I had some serious brain fog.
I went in for my 2nd round last Friday and did much better this time. No Migraine! I met with my MO prior to the infusion and she adjusted my anti-nausea medicine in the IV… I forget the name of it. The nurse had mentioned to me that about 20% of people get migraines from that specific class of anti-nausea meds (Palonosetron hcl), so I'm happy there is an alternative option. I also asked the nurse to slow the Cytoxan drip to help prevent the sinus/head pressure (some call this "wasabi nose"). It did help but I think if we slow it a bit more (to 1hr 30 min) it will be even better. Unfortunately, the 2nd - 4th days were tough on me this time, but I also started my period the very next day after the infusion. Great timing! I think I would have done better had that not been the case. And, I kept thinking that the chemo was supposed to stop my cycle, but maybe that happens later on. Does anyone know? I was mostly just exhausted and uncomfortable. I ended up sleeping more and really felt my mind in a fog. I had to take a day off from work, but each day since seems to be getting better and better since then. I'm looking forward to next week when I can feel good again.
It's really interesting to see the differences between all of us and how we respond, plus seeing the differences between the same drugs but different doses of it. I have two more rounds of this regime (AC) all 3 weeks apart, then onto to weekly Taxol. Thanks to all who post your experience as it does help and reminds me I'm not alone in this.
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I'm here to see what other's are going through, that might have a similiar diagnosis or treatment plan. Briefly, my story is that I had a mammo/scan in Dec 2015, which came back as NORMAL, see ya next year. I got the actual radiology report that said no lumps in breasts but had an enlarged lymph node, "PROBABLY benign". I didn't like the word probably. Went to my surgeon who instantly found a lump in my breast. Had 3 biopsies. Came back cancer in right breast which has already moved into my lymph nodes. It's stage 2b invasive ductal mammory, with neg/neg/positive receptors. My HER2 is positive, but also at 100%. Yes 100% of my tissue was HER2 positive.. not 2% or 30%, but 100%. Therefore the fastest most agressive type. Started Chemo March 31, 2016 with Taxodere, Carbo, Herceptin and Perjeta. Had violent reaction that landed me in the ER nearly dead, then admitted to hospital for a week. I had all the possible side effects, to the max, all at once. I lost ALL my hair a week after first treatment. I'm sporting a shiny bald head now. I have now had Round 2 on April 21st, after they dropped the Taxodere, and reduced the amount of the rest. I'm on Zofran, Compazine and Immotil with Immodian and prefilled syringes in fridge for tummy shots of those don't work. Doing better now. Been off work for a month now which was unexpected. Should start next week for a week before Round 3. I get them once every 3 weeks for 12 weeks. Then I have a double radical mastectomy plus reconstruction with implants, followed by radiation, then a year of Herceptin after that. I am an open book, posting everything publicly as I go along. Trying to be a positive advocate. And yes that is Jon Bon Jovi in my profile picture with me
Oh and I have named my tumor one of the devil's names: Beezlebub, b/c he is hated and will die, actually Jesus already defeated him once, so this battle is won. Positive mental attitude is 1/2 the battle. 0 -
Wishing you all the luck in the world. Positive attitude is 1/2 the battle
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I just want to say about your hair loss, that it's ok to "sulk" as you put it. It is very traumatic. I expected it as well. While having major side effects that landed me in hospital a week after first treatment, one night ALL my hair fell out. When I saw 2 handfulls of hair I was in shock and had a little meltdown in the hospital bed. I cried and cried. I was being told, "it's only hair, it'll grow back". Yes I know that, but it was still a shock. Wasn't even about the hair, but another milestone reached and crossed confirming in my mind that wow... this is really happening, I have cancer. The night I was home from hospital, my hair stylist ran right up and finished shaving my scragglies off. I now am sportin a shiny bald head, indoors and outdoors i wear pretty head scarfs, trying to have fun with it. Hang in there! I just finished Round 2...
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JoviChick83
I'm sorry you are having such a difficult time with the SE's. I too am 100% HER2+ and am on the TCH regimen every 3 weeks and Herceptin weekly for a year. I have had a rough time with side effects and am on leave from work until the chemo treatment is complete. My worst days were 2 - 5 I could barely get off the couch. It has been up and down since, not as bad as those days but very unpredictable. I never know how I will feel energy wise or if i will have a fever etc. Thank you for being a positive advocate sometimes I forget how important that is and get stuck in the worry cycle. tomorrow is round 2 for me I feel better prepared but still nervous and dreading the SE's.
Wishing you the best!
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Thanks positive power. I will be incorporate daily walking AND much more water /fluids. I believe I underestimated the chemo process but I am better prepared for round 2 tomorrow thanks to all of the positive and helpful comments here.
Best of luck with todays treatment
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