Starting Chemo June 2019
Hi! I am new to the site and am starting Chemo May 29, but decided to be a part of a June group. I need help navigating this journey. All advice and tips welcome!
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Hi teamortiz, welcome. I'm sorry to see you here, in the club no one wants to join. You will find an amazing amount of information and people to help you move through.
I'm in the May group. You might find it helpful to start by looking in on the May and April groups, as we are mostly "in process" right now. Here is a link to the May group
https://community.breastcancer.org/forum/69/topics/871135?page=1
Also, if you know what kind of chemo you'll use, there are some specific threads that can help with that info. There is one on AC
https://community.breastcancer.org/forum/69/topics/867853?page=1
and another on TC (I can't find the one I'm thinking of, but maybe someone else will link it.) And Tiffany's Terrific Tips on TC
https://community.breastcancer.org/forum/69/topics/839070?page=1
There's also an ongoing one on taxol
https://community.breastcancer.org/forum/69/topics/788735?page=1
and some tips for avoiding taxane-related peripheral neuropathy
https://community.breastcancer.org/forum/69/topics/871625?page=1
If you have questions, people will be glad to help answer. Best wishes to you and the whole June group.
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This is the TC (taxotere and cytoxan) thread I was thinking of
https://community.breastcancer.org/forum/69/topics/800978?page=1
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hi! Thank you for reaching out! I am on the AC + T, 8+12 treatments regimen. I will look at May and April to at least get an idea of what I’m facing. Thanks again!
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teamortiz, Also don't hesitate to drop questions in active threads like the May and April groups. You will for sure get answers there. Some other threads/comments/topics are longstanding and they aren't necessarily active, and it can be harder to get an answer for questions.
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Hi Tea - I will be in the June group also. The lumpectomy/node removal was on May 17th. Starting in two weeks,I will be getting Taxol and Herceptin weekly for twelve weeks, a break for radiation and then finish out a year with Herceptin every three weeks. I just got my pathology report and the BS got clean margins on the tumor and all eight nodes removed were clean. I am researching how to stave off the neuropathy and other possible SE.
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Been lurking for a while, but finally have a treatment path laid out and I feel like it's time to share my own experience. I start TC on May 31st, so I'll hop in with the June group too, if that's ok. I've been recommended 4 rounds, 1 every 3 weeks.
I appreciate the plethora of information found in past threads, it's been a huge help in navigating my diagnosis & treatment.
Strength in numbers, we'll get through this! xoxo
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DogMomRunner, there doesn't seem to be much help for neuropathy other than icing. There is some info here
https://community.breastcancer.org/forum/69/topics/871625?page=1
Aside from that, I have read that vitamin B-12 deficiency is related to neuropathy, but I don't know if there's any research about using supplements to help prevent it. I haven't seen anything else. If you find some info, please do share.
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Thank you MountainMia! I love the quote and the meaning of your UN!!
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We need to build June group and pull all of the incredible tips, advice and encouragement from the other groups. We all are facing different treatment plans, but there are so many that share the same story. My story begins with knock, knock...cancer was at my door. I would've loved to ignore it and remain blissfully in denial, but cancer doesn't let you run away. I am ready to face the beast and scream in it's face, YOU ARE NOT WELCOME HERE, IT'S TIME FOR YOU TO GO! I am beyond grateful for this form of support, I am realizing I am NOT a one man army! WE are an army of infinite numbers. I will take all of the sickening SE's so long as my daughters have a Mother. My fight is not just for them, I vow to fight for all of you too! Let's do this!!! Once I have my port placed and 1st round on the 29th, I will share.
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Hi and thanks Mountainmia! I am planning on getting the icing booties and possibly the mitts off of Amazon (happy birthday to me!) I am no cold capping but I am toying with the idea of getting multiple gel eye cold packs to see if I can keep my eyebrows and eyelashes. My husband is a veterinarian and does acupuncture so I may see if that will also help. I will definitely add the posts you listed to my favorites.
Hi SIMSAgreen
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Here's another resource I don't think I linked before. It's a site called chemocare, and it has really good information about both the drugs and the SE, indexed to find easily. There's also really good stuff under the "More" tab, including stuff you might want to do before starting your chemo tx.
http://www.chemocare.com/default.aspx
You might be interested that the site came out of the experience of champion ice-skater Scott Hamilton, when he was diagnosed with cancer. He wanted good information that was easy to access, and this was built out of that desire. His foundation also helps fund its existence.
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Thank you for sharing those links, MountainMia. Funny enough, the printouts my MO's office gave me re: TC were directly from chemocare.com.
Anxiety running a bit high this weekend. Not really worried about anything specific, just ready to get this done and over with.
Spending the weekend and most of this week getting the house cleaned up and doing all. the. laundry. so I will have less to worry about while I recover from round one.
I hope you all have a lovely weekend
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Good luck today, teamortiz!
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Adding good chemo treatment vibes for teamortiz!! June ladies getting it started.
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Thank you DogMomRunner!! I’m surprised with my overall calm, I suppose surrendering got me here. Hope you are great, I’ll check in after today.
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Thank you SimsAgreen!! I really appreciate you reaching out! Have a great day and I’ll check in after.
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I hope you are doing well Teamortiz!
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hi all! I’ll close the other June post later when I can log in from a computer. Looking forward to giving and getting support thru this crazy time.
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Well, one round down and three more to go!
Yesterday went well, though it took a bit longer than I thought. Probably because it was the first appt and they had a lot to explain as they went along.
Things started with the NP where she double checked I had all my at-home prescriptions ready. They did lab work by finger prick (which is now the most inconvenient part because they had to try two fingers to get enough blood and now they feel sore like they have a splinter), then did height and weight before taking me over to the treatment room.
The nurses were amazing, they talked me through every step. Got my IV connected, ordered my TC from the pharmacy, and started pushing the other stuff while we waited - steroid, anti-nausea, and pepcid. Once the prescribed treatment arrived, she connected the bag of Taxotere and explained all the potential immediate side effects they would be watching for. Thankfully I did not have any of those issues, and it went by fairly uneventfully. I did chew on a little bit of ice, but that was it for the Taxotere.
Next was the Cytoxan, which would take the longest. She did say it would be easier and they wouldn't have to watch for reactions like they did with the Taxotere. I was warned that it may cause a sinus headache if I was susceptible to that, which I am. It was probably the last 5 minutes of the bag when that happened, and I am still dealing with a killer headache this morning. I was told I could take ibuprofen & claritin-d, which I have and it seems to be helping now. The only other thing was the crazy fast onset of dry mouth, probably about an hour after I was done. So I have been hydrating with lots of water, and I've used biotene mouth spray to help a little bit.
And that's about it for now. I feel a smidge queasy, but not fully nauseas or sick to my stomach, and I've taken my first dose of meds for the day while I eat a light breakfast. Hopefully it will kick in soon. Otherwise, I just feel a bit sleepy and generally "off" from normal but nothing serious or severe at the moment. We will see how the rest of the weekend goes.
I hope you all have a great weekend! xoxo
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I'm glad things went well for you SIMSAgreen. Except for the headache that is. I hate headaches. I wish my infusion place would do them on Fridays but Thursday was as close as I could get to the weekend. I hope your headache goes away soon and that you have a relaxing weekend with no more SE
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SIMSA hope your weekend is not too hard and that you can relax. Thanks for sharing your experience on the first day because it’s really helpful. I start on Tuesday and as much as I’ve told everyone I just want this to all start it’s kinda freaking me out that it’s finally here. I had such a long diagnosis and surgery time that it’s taken months to get here. I’m rushing to get stuff done this weekend cause I don't know how I'll feel next weekend. Had a big dinner out last night with friends and getting a pedicure today.
Now my big question is what is everyone doing about their hair? Cutting off after it starts falling out or jumping the gun and doing it early?
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Rissy - in regards to hair. I am going to cut my short, probably next weekend. Which I hate because my hair is really curly and I’m going to look like a poodle. I am looking at wigs (short and similar to the new cut but hopefully less poodle) for work and buffs/bandannas/simple hats for everywhere else. The wig will help keep questions to a minimum and won’t frighten residents and families at work. I am a geriatric social worker at a skilled nursing facility and my bald head might make some of them a bit anxious (dementia and anxiety disorders are pretty prevalent here)
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Thanks for the kind words, ladies
So far things are still going well. Little waves of queasiness and sleepiness off and on, but not much else. My husband joined me for a walk yesterday afternoon. It wiped me out for a little bit, but it felt good to get out of the house and enjoy the beautiful weather. I slept great most of the night, but was awake for about an hour or so around 1am. Don't know what was up with that, but I managed to fall back asleep at some point. And for the last side effect so far, I did wind up taking a dose of miralax this morning to help things move along - they warned me that I might need it, and boy do I...
In regards to hair stuff - I've always had really long, stick straight hair. It's all the way down my back currently. The NP (and some other friends of mine who have unfortunately also been through this) recommended I cut it short, at least shoulder length for starters. I think I will likely do that this week... The NP said that with the dose I'm on, my hair is more likely to thin out over the next few weeks rather than falling out in clumps. I figure once it gets too thin, i will just buzz the rest off and start wearing scarves and/or beanies. I have an Rx for a wig, but I've heard they can get itchy and hot and those are the two things I already dislike about my own hair in summer, so I will skip it and try to keep things simple and cool.
I hope you all have a lovely day! xoxo
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I will have my first chemo infusion this Thursday, June 6th. I am interested in anyone’s experience with fasting before chemo. I am seriously considering doing this but don’t know any protocol regarding water, bone broth, how long to fast and when to break the fast. Thanks for any info.
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Hi tennisgirl and welcome. I'm sorry your find yourself here with us, but hopefully you will find the love and support you need to get through this. I don't know much about fasting, unfortunately. There is another poster on the forum who seems to know quite a bit about it. santabarbarian, i think. I would recommend reaching out to her for help with that. For myself, I'm just listening to my body. I eat when I'm hungry, drink tons of water when I'm not, and just overall trying to be gentle with myself.
Following up on recovery from round one - The weekend went better than I anticipated. Everyone I spoke to on Friday made it sound like the first 48 hours would be the worst. Other than the waves of sleepiness and occasional queasiness, it wasn't that bad. Then Monday came. I think it had to do with the massive dose of steroids wearing off, but I just did not feel well. I wasn't physically ill, just an overall sense of being "off". Everything drove me mad - sounds, tastes, even my clothes touching my skin drove me up a wall. I had been prescribed lorazepam for just this sort of thing, and thank goodness. I think it's the only reason I didn't completely jump out of my skin or bite my poor husband's head off.
Yesterday was worse, physically. The mental irritation had mostly worn off, but my whole body just felt very run down. I had waves of feeling cold and hot, but did not have a fever or anything. So I took it easy and dozed on the couch most of the day. TMI alert -I still have been having some trouble with BMs, but nothing outside of what I was told to expect. I keep eating high fiber foods, taking colace and miralax. I've had some success, thankfully. Just ready to have a good "go" and lose the gassy bloated feeling.
Today I seem to have turned a corner. Still feeling a little run down, like my muscles feel a little stiff here and there, but I'm trying to keep moving in hopes it'll ease up. I need to run a couple errands anyways, so it'll be good to get out for a bit.
Also contemplating getting my first haircut this weekend, just shoulder length for now. I'd like to find some nice scarves and learn to tie them, too. I didn't think the hair loss would bother me too much, but as I look at styles and tutorials for scarves and hair care, the more I start to feel uneasy about it all. I've always been very laid-back and low maintenance, keeping my hair in a ponytail or bun 99% of the time. And now I have to figure out something that is just as easy, yet still looks decent... I'm stressing myself out over it.
it is what it is, I guess.Anyways, thinking of you all as you prepare for tomorrow. You're all strong, amazing women and will make it through! Sending lots of love and warm thoughts to get you through the day! xox
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Hi SIMSAgreen - it’s good to hear from you. My first treatment is tomorrow. I’m hoping I will feel like going to work on Friday. It sounds like the day after wasn’t bad for you but maybe it wasn’t good either. Of course I will be getting different drugs so who knows. My ice packs aren’t here from Amazon so I have to figure out if I’m going to get something else for tomorrow. Are you icing your hands/feet? I’m also looking at wigs and hats. I am usually low key about my hair but it’s really freaking me out for some reason.
Tennisgirl - welcome! I am not planning on fasting unless this first time goes really bad. I agree with SIMSAgreen that santabarbarian seems to be the authority on fasting. Good luck though whatever you di
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So sorry you all had to find this site, but know that there are amazing people here who will help in anyway they can. I am in the starting Chemo October 2018. I could not have made it without the encouragement of my group. We are still communicating with most of us going through rads. Good luck with the SE's and reach out if you need anything,
Annie
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DogMomRunner - thinking of you today!
I did not do any icing of my hands or feet during my treatment, though I did chew a little ice throughout the afternoon mostly because I was just hot and wanted something cold and soothing. I haven't personally researched the icing thing, though I know a lot of women here recommend it and have had some success with doing it. For me, I was stressed enough that day and I felt like adding gloves and socks and worrying about keeping things cold and all of that would have pushed my already high anxiety over the edge. So I skipped it. Whatever will be, will be. Hopefully you will find success with whatever you choose to do!Rissy - I just realized your first treatment was on the 4th! I really hope everything went well for you and you are recovering comfortably!
tennisgirl - I'm also thinking of you today and wish you all the best for your first treatment.
Annie - thank you for your kind words of encouragement!
As for me, I'm continuing to feel lots of little side effects. Things are finally "moving" along again, though still not back to normal. At least my stomach isn't feeling as swollen and painful as it had been. My head has started having a weird tingling/burning/itching feeling. I'm assuming this means the hair loss will start ramping up soon. I was told it would be more likely to gradually thin out over the next couple weeks rather than fall out in clumps, so I guess I'll be cleaning my hair brush lots. I've also started breaking out with acne/pimples on my face. Really big painful ones, too. I have an appointment with my MO tomorrow. Hopefully she'll be able to recommend a gentle cleanser or something to help with that. I'm also getting winded/tired a little easier than usual. Going up and down the stairs in my house leaves me feeling pretty exhausted. My mouth and tongue has the sensation of numbness/tingling that you would get after burning your mouth on a hot drink or soup or something - pretty sure that's a common side effect of the Taxotere though. And my throat is sore, everything I swallow feels scratchy and uncomfortable, even soft foods. Despite all this, I'm still trying to plug along and keep things as normal as possible. I managed to get out and run a few errands on my own yesterday, I've been keeping up with most things around the house (today will be laundry day), and just generally making sure I'm up and moving around whenever I can.
Stay strong ladies! xoxo
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Hi all you June starts. Good luck to every one of you. I have my 2nd of 4 AC tomorrow but had a May start. (Actually I started 3 times, with the first two infusion appts scheduled to do TC. I reacted the the taxotere and couldn't do it, so we switched to AC.)
SE for you all will range from not much to very unpleasant. Some people recommend keeping notes on which days different SE appear for you. Be patient with yourself, assume you will be tired regardless of how bad things are. Try to get a short walk every day, and hydrate as much as you can stand! With the hydrating and tiredness, some of the walking you do may be back and forth to the bathroom! See if you can swing through a few more rooms before sitting or lying down again.
If you're interested in icing to prevent neuropathy, there is a topic that addresses that with tips. Here is the link.
https://community.breastcancer.org/forum/69/topics/871625?page=1#
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So how is everyone doing? I did fine during the treatment. Had to use the bathroom every 30-45 minutes thanks to the steroids and the fluids. The benedryl made me really loopy. The rest of that day, I felt good. Had an appointment with my lymphadema therapist. Friday, I felt good enough to go to work. Saturday, I had a headache and started feeling nauseous but felt well enough to go wig shopping. Sunday, the bottom fell out and it felt like I had a bad case of the flu. Headache, nausea, body aches and I could not move around very well. On Monday, I felt well enough to go to work. If it's only one to two days that I feel horrible then I guess it's ok but I am worried that the cumulative effects might extend those days. No hair loss yet
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