Starting Chemo April 2020
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Jana: Hey! Glad to hear from you! It's great that you've been having minimal side effects. Me too, and I also have been super scrutinizing myself like a hypochondriac detective, which is ridiculous! Honestly, I should just go about living my regular life until/unless something hits me. I'm hopeful for you that you will continue to feel ok!
Radiating positive vibes to all of you tonight-- to my new friends in this group and to the random casual readers who dropped in.
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good evening ladies....I love seeing your beautiful faces. I’m going to apologize that when I start typing I can’t remember everyone I want to respond to and I don’t have chemo brain yet.
Lise...Jess and I are both doing taxol first. I had #3 yesterday and I am still feeling well. I haven’t had any side effects yet to speak of and I still have hair(for now ). I keep waiting for the other shoe to drop then I remind myself one day at a time. Prior to starting I read lots of threads and the ladies that seemed to have the least amount of side effects consumed lots of water and kept active. I drink at least 90 oz a day and I’m always going to the bathroom😂. I also try to walk several miles daily or do a strength workout. I’m hoping to continue that hoping to not have major weight gains.
I bought a pair of eyebrow wigs😂...I never thought I’d say that. I worry I won’t be able to draw mine on once I take off my glasses without them looking crazy.
Those of you that are doing ACT and dong the AC first I am watching to see how I goes and any tips and tricks to getting through it.
For those who asked port questions...I was put out. Best sleep I have gotten since my diagnosis. For the first couple of days I really noticed I had a foreign object in my body. That has gotten better every day. The tenderness lasted a little over a week. I’ve had it for a little over 2 weeks and it doesn’t bother me. I know it is there but I’m not bothered by it.
I met with a plastic surgeon Tuesday to talk about reconstruction. I have the PALB2 genetic mutation so I run a high risk of getting another breast cancer. I was hoping to do a lumpectomy before I knew that but I don’t want to do this again so I’ll do a bilateral mastectomy to reduce the risk. The plastic surgeon wants to do a direct to implant at the time of the mastectomy. I don’t know anyone personally that has had that done. They have all had expanders. Just curious if anyone has had that or has consulted with a plastic surgeon and how that went. I must say talking about the surgery left me feeling a little overwhelmed. I’m terrified of surgery and it was just a reminder that chemo is only one leg of this journey.
I appreciate all of you and hope all of you are doing well❤️
Heather
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Hi all! I realize I'm late to this board, but hoping you'll welcome me nonetheless. I'm Vilija (VIH-lee-yah), I'm 40 and I live in Santa Cruz, CA. I've been obsessed with gathering research on all things BC (as I'm sure many of you are too), although COVID-19 did force me to make a quick decision about my surgeon and type of surgery (lumpectomy). Outcome was great though, and I just wrapped up a visit today with a 3rd medical oncologist. I'm pleased to say that I finally have an oncologist that I love and trust as well as a chemo game plan. Start date is ASAP (hoping by last week of April). I look forward to sharing with and learning from all of you. Take care.
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Jess,
What great communication skills you have. Thank you.
Note all: My walkthrough of my chemo session is specific to me; others will have different regimens and therefore your sessions will be different.
Also I see I did not get the first hydration and administration of the anti-nausea meds right: they should be reversed. I had quite a bit of hydration before anti-nausea meds were pushed.
Welcome all new members! Greetings all existing members!
WHAT A HOOT: eyebrow wigs! So whimsical- I love it! Ya' I will likely lose ALL my hair including lashes...but I will say this...what I have noticed about bald people including no "eye hair" is that this actually highlights your features so that they can be appreciated especially eyes!
I will get the eye wigs because I have a curiosity about them...and me. It sounds like fun to experiment with the idea of a personal makeover, from the inside out! Outside in! North and south, east and west!
I am thankful to walk with others in this most remarkable journey and send my best wishes,
Allie
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Allie— congrats on getting your first chemo down! I do AC first and the side effect that bothers me most is the bladder spasms. I get them very badly the first four days. They gave me a script for pyridium, but even that doesn’t cover them completely. As for the bone pain, did they tell you to take Claritin? I know it sounds odd, but taking a Claritin (yes, it has to be Claritin) the day of the Neulasta shot and two days after. I had hardly any aching. I do get a very bad sore throat about day five and mouth sores. The baking soda rinse is a life saver.
For everyone getting hungry, it’s most likely the steroids. As you could tell from my picture, I’m not a thin gal to begin with, but I try not to worry about it during chemo week and eat what I crave. The next week when I feel better, I eat healthier.
I’m loving all the pictures! Yay! Let’s share our beautiful attitudes and celebrate our changing bodies. Because this too will pass. ❤️
My nether region hair is falling out. Sorry for TMI, but anyone else? It makes the loose stool times a bit more irritating. ☹️ But natural care Huggins wipes have been a huge help.
Love to all this week. My parents are coming to stay with me this weekend to “help.”
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pjb61 -
Erin and I both are the "natural" people! So this chemo thing is killing me. But I'm doing it. You are I are doing things a little differently, because I am HER2+, but I am also getting Taxotere, and I also have lots of plant allergies. I had no issues during my first infusion (4/10/20) - and they take things really slowly to make sure that you are okay. Sugar77 is right - you get that Benadryl right before - that knocked me on my butt! And I took the oral steroids before and after. Mostly, I'm struggling with the after effects on my digestive system - it's been rough this week. Trying to get that all figured out before the next round.
Kris
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jelloelloello - regarding brows, you might be surprised. I never lost all my brows and lashes last time. They thinned but not until chemo was done for a month or two. By then my hair was already growing back. Brows and lashes are in a different cycle than hair.
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Kris - yes, that’s correct, they give the bag of saline before the Taxotere infusion.
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Stacey, all good stuff and not TMI at all! I have been having, speaking of the bladder, little leaks since chemo but I am on both Adriamycin (which gives you cherry koolaid pee for a while) and Cytoxan, various meds, and had a delicious soup made by neighbor that featured onions which can trigger this, heartburn, queasiness, and belly cramps in me anyway...sigh... I believe.
Yes. I started Claritan yesterday and will take it daily to prevent bone symptoms. I had a round of what was thought to be dry eyes and/ or allergies lately and was told I could take it for that too.
I am going to try to get of my backside for a little walk today and that is suppose to help EVERYTHING.
My best wishes,
Allie
MAJOR UPDATE: I gave myself my first Neulasta shot today! I must let you know that this did not hurt at all - more a pressure sensation when I put the needle in and I'll tell you why I think that is in a minute. They taught me how to do this at the cancer center and let me practice with a little belly model and a real (unused and empty practice syringe and needle!
So if you have to do this, I hope to be a reassuring voice. Otherwise, to me, it really would not be a problem to return to the center since I'm so close and nurses can do it without blinking an eye.
SO here's why the nurse thinks it did not hurt. I was instructed to pinch up some belly skin in certain areas (away from the belly button) and keep the skin pinched while putting the needle in and then injecting. I was told I do not need to pinch hard. I then just injected the drug until the plunger was at the end of the syringe and again I did not notice any discomfort. When I took the needle out, there was the tiniest little soreness, but that is it!
The nurses give excellent instructions on this and I found the package insert very helpful too. Easy to follow and understand. They (the nurses and the package insert) give you the whole thing: how to take care of the Neurlasta before you need it, how to prepare your "work area," how to clean your skin, how and where to pinch your skin, how to hold the syringe (NOT BY THE PLUNGER!), how to inject, and how to push the medicine into the pinched area! What a relief to have this over!
One note: the pharmacy gave me slightly different instructions which I checked with the nurse and she said to follow her instructions. I noticed the package insert instructions were the same as the nurse's.
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Jana....I definitely can relate to the waiting for the next symptom or “hey, what’s this?” Sort of waiting on the edge of my seat for something else, something worse. I will admit that I have not felt as bad as I thought I would. Days 4-5 after chemo would be what I characterize as my worst days so far, but they were not nearly as bad as I anticipated...tired, brain fog, weird taste/feel in my mouth. Days 6–8, I have woken up feeling a lot more like myself...with just a few minor annoyances.
On the American Cancer Society shopping page...www.tlc.org...some of their items are on sale today....picked up some skull cap type hats, a halo wig for wearing with hats, etc.
Hope you all have a nice weekend without any complications! Erin
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Quick welcome message to Vilija (sunandsea)! Just wanted to say we're glad you joined us. I added you to our Roll Call list at the top! This is a great group with lots of open, positive, funny and sweet people. It's cool that you were able to quickly get your lumpectomy done and now are ready for chemo. I hope you can start soon! But if for any reason you end up not starting in April, I hope you still hang out with us-- there's no real rule about it just 'cuz we're the April group, haha
-jess
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Thanks, Stacey (AuthorSpot) and everyone else, for your candid stories about side effects, especially the hair and bathroom ones! I honestly need this so much. The other day I had a normal poop after like a week of diarrhea, and I cheered for myself like when you potty train a toddler.
And we've all been talking about how we are vigilantly watching for symptoms... I feel like I'm constantly playing the, "Is it chemo?" game! Like, my throat hurts... ugh,chemo. My scalp is itchy... ugh, chemo. My lower back is sore... ugh, chemo. On Wednesday, I was sluggish and grumpy, kinda crampy and sore, just feeling like laying around doing nothing, and I was like, (shaking fist in the air) "ugh, chemo sucks" ...but it turns out my period was starting and I honestly just totally forgot that it even exists! hahaha
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Gogomb.(Marybeth) [Greensboro, NC]!- 4/21
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Jess - be prepared, chemo could temporarily stop your period or end it altogether. I was 45 and had one a month and half after my first infusion and then never got it again. That was 10 years ago.
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Thanks, Sherri. Yeah, I remember my oncologist telling me about possible early menopause and then in my head, I just kinda wrote it off already! But nope, here we go again!
Also- I’m glad to hear that I might not lose my eyebrows, that it’s not all connected at the same time as head hair loss. Fingers crossed!
Ridiculous thought of the day: Wish we could choose which things we lose and which thingswe keep from cancer. I’ll gladly lose periods, body hair, some weight and, of course, the tumor! But I’d like to keep head hair, eyebrows & eyelashes, feeling in my hands & feet, my appetite, and my sanity!
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haha Jess. That made me laugh. I was thinking the same thing the other day!!
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Hello,
I am happy to see a group for newbies! I am terrified and have so many questions and look forward to going through this part of our journey together. I will be starting chemo this month. I am having my port placed on April 22nd. I have IDC ER/PR+ HER2-. My Onologist is waiting on my Mammaprint to determine type of chemo. I was diagnosed on 02/08/2019, started Anastrazole in April 2019, and recently had a left breast partial mastectomy and 5 lymph nodes removed on 03/19/2020. My pathology came back with clear margins and micrometastasis in 1 lymph node.
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Hey Dawn- welcome to our group! I'll add you to our Roll Call at the top. This group is a good mix of total newbies and some people who've been through chemo and/or other treatments before, so you'll get lots of good info and support. And a super big congrats on the successful mastectomy and lymph node removal!
I will be doing that, too, after chemo, and I'm super nervous because I've never had surgery before. I've never even been admitted to a hospital in my life-- never even sprained an ankle, never had tonsils removed, never gave birth (no kids) or anything at all! The biopsy I did in February to find out I have cancer was my first ever procedure. And now two months later, here I am a frequent flyer, walking into the hospital cancer center every week like a PRO. I know the fastest way to the labs for my blood draw, what to tell the check in desk, how to fill out the newly required forms about coronavirus, and how to ask my chemo nurses for my preferred placement (left forearm) for my IV, if possible (no port, yet, but hoping to get it next week). I'm a whole different person now! I'm also suddenly the cancer expert with my friends and family, even though I literally just started learning all this two months ago, haha
Like how Allie (BostonGal) is now the self-injection pro for her Neulasta shots, we all are learning quickly to adjust to the millions of new things thrown at us, and I'm so proud of all of us! Even if we're scared, we just take a deep breath and do it. That's what a warrior is, and that's who we all are now. : )
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Tx for the warm welcome and roll call addition jelloelloello!
I am so grateful to everyone for sharing what their experience has been like for their first few sessions. Really helps me wrap my head around things.
Sugar77 - I'm so sorry to hear that you're back for another go around. BUT, reading your calm and determined words shows me that you're more than up for the task. It also gives me strength to do the job of healing myself.
Jelloelloello and JustyneF - I love hearing that you both looked into and ended up enrolling in I-SPY2. I had emailed Dr. Laura Essermam (she emailed me back asap - fan girl moment) and had met with Dr. Ewing at UCSF to learn more about the trial. I was on the path to signing up when COVID-19 really started taking off and I made the difficult decision to scrap the trial in favor of surgery ASAP (which of course excludes me from the trial). I was heartbroken, but seeing that the 2 of you still managed to enroll is awesome! I know you will be receiving the best of care (cutting edge stuff...plus helping future cancer pts!)
I spent much of yesterday debating whether to cold cap. I had never even bothered considering it since I have short hair and going bald doesn't really phase me. That said, my onc mentioned the possibility of permanent alopecia with TC and I freaked out. Odds are low of course, but still! In the end, I've come to the decision *not* to cold cap. The Dignicap isn't available at my preferred center and the manual options aren't really options to me given that we can't have visitors and I will have no one to help me. Plus, I really don't want to spend any more time than I have to in the clinic. COVID-19 strikes again! Instead, I'm going to focus my time in these next few months on doing me best to protect myself from covid, continue my diet, moving my body regularly, reading up on the radiation and endocrine therapy to come, and even trying to work a little. Oh! And be present for my kids the best that I can. Phew! That's a lot.
Seeing you ladies do just that gives me hope. Hugs 🌈
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Happy Saturday Everyone
Please forgive me for making a suggestion y’all probably already know. Authorspot, when you mentioned Huggies Natural, I thought about it. I learned the hard way with a $600 plumbing bill.
When my GrandChuckles were potty training, I used flushable baby wipes. They’re flushable, but they’re also stay-in-the-pipe-able. The plumber said no baby wipe should be flushed, not even the flushable ones.
Thanks everyone for sharing how things are going. Update on me: I’m one week past my lastest round of radiation treatments and feeling stronger every day. Gastro issues almost over. Pain in my Lumbar spine where the Mets are is much better. Won’t be taking my second infusion on Wednesday because I’m seeing my new medical oncologist on Thursday.
I’m a happy woman!
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Hi all! I'm Kelly. I'm switching over to the April chemo thread. I attempted Taxol first in March but after 2 severe reactions and a week break, I started Taxotere yesterday. Success! No reaction so on we go. So far my only side effect is body aches and a little heartburn.
Love reading all the tips and stories. I see you guys post a lot. I need to catch up!
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Hi all,
I am lifted up by your posts. Thank you. You are all extraordinary.
I am having more heartburn than I usually get (I'm prone to it) and that alone is making me a little queasy. So far managing with Rolaids without the Compazine.
The bladder leaks continue and are maddening when I get up in the morning. Nurse knows about this. I am just going to have to set my cell phone alarm to get up periodically before my bladder starts nagging me. Better to be dry than cry!
I've been prone to that too and so I think it's not unusual given the amount of drugs and chemicals that have been pumped into me since Thursday yikes!...Plus all the anxiety. There's an old saying btw: if it burns the stomach, it will burn the bladder...please don't take anything I say as medical advice. Always, always talk to your medical team!
Good news: I was able to eat with more enthusiasm today. No BM since Thursday and so will up the liquids if that is at all possible and will take a little more Colace.
Fondly,
Allie
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Jess - I laughed at you comment about choosing what we keep and what we don't - because I have had that EXACT conversation with myself, too! I would gladly lose my hair for no digestive side effects, no neuropathy, no heart issues with the Herceptin/Perjeta. It's funny what starts to matter.
Allie - I have never dealt with heartburn, and I have had it something FIERCE this first week after chemo. It's finally going away (I hit one week yesterday) and the biggest thing I discovered is that I need to keep food in my system all the time. So I'm eating every 3 hours - just a small amount. As long as I don't let my stomach get too empty, it stays away.
Vilija - Welcome! I also made the decision not to try the cold capping. I am using the cold mitts on my hands and feet to try and prevent any neuropathy from the Taxotere, but I really didn't care if I lost my hair. That seemed way less onerous than dealing with the cold cap.
Reporting in at the end of week one - by Thursday, I actually felt pretty normal, energy wise. Today was a pretty regular day around the house, so that felt good. I'm still sleeping pretty well and my appetite is good. I was still struggling with intermittent diarrhea up through this morning, and I finally caved and took an Immodium. I hate using that, but I'm hoping I am turning the corner there.
So all in all - things are looking up for weeks 2 and 3 - until I head back into the belly of the chemo best on May 1st! I have my mid-cycle lab appointment on Monday, so hoping my numbers look good.
Erin - how are you feeling?
Kris
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Faith2020, FallasTexas, 4/9/20
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Opps, chemo starts 04/20
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Kris,
Bless you for your advice. I think my GI track
is starting to come back online. I had a cup of coffee today and did about five or so minutes of gentle dance moves in the kitchen much to the enjoyment of my cat who rolled around on the dryer making happy paws at me. I will try to do this several times a day. Also... lots of water.
I cherish you all and send my gratitude and best wishes...
Allie
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Good morning ladies! How is everyone feeling today?
I had my second taxol on Friday and have been feeling pretty good. It’s been rainy in Florida so I haven’t been able to go for my walks but I’ve been constantly moving and cleaning up the house. I feel like I have endless energy, maybe from the steroids in the premeds. I had a reaction during my first infusion and had to get a second dose of Benadryl which didn’t happen this time so that could be it too. I was lethargic for a few days after my first round
I saw the PA at my appointment and said I was surprised how good I feel. She said that I still feel good through about 3 treatments this is what I can expect. She also told me to take advantage because when I switch to AC I will likely feel BAD for several days.
Still have my hair but was told it will probably start to fall out next week.
Stay well!
Lise
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Lise,
Good to hear from you. I want to tell you that I am on Adriamycin and Cytoxan now and am surprised, at this point four days out from my first session, that I am doing well, in general- all in all. Perfect? No. But I have a microscope on everything now and I wonder if that I didn't have cancer and chemo, I would just be ignoring everything? I'm on a pretty standard after chemo regimen: a steroid, Neulasta, Claritan, Colace, etc., and have been told to do the usual things to keep my GI track working and stay comfortable, including some exercise. I try! But I too was so lethargic after the first session and all I wanted to do was sleep!
I too was briefed thoroughly on AC and what to expect. I think they want us to be thoroughly prepared and to make sure to take preventive steps to counter the side effects early and not "tough it out" as I and many will try to do..
My bothersome symptoms have been constipation and heartburn with slight queasiness - not enough to take Compazine I think but enough to worry about. I tend towards heartburn anyway sometimes but I'm usually like clockwork for BMs and so any disruption bugs me because I don't know if it is chemo or "something is wrong." I had much more heartburn than I usually get. My appetite a little down but is now improving. I had to learn how to give myself a Neulasta shot (easier than I thought and surprisingly painless for me. What helped me do it is knowing all the good the shot can do!) I am prone **at times** to bladder leaks and they were very annoying for a while for a a couple of days following chemo. This too I feel could be due to all the irritating substances being pumped into me and the havoc they can cause on our non-cancer cells.
I've been told though, that I might expect some symptoms when I stop the steroids and their beneficial effects wear off and as the Neulasta stimulates the bone marrow to crank up production of the wonderful white blood cells that protect us. So far, I'm holding my own with the Claritin and was told to take Tylenol or Ibuprofen if I get into some pain. I will take Tylenol because my tum bothers me with anti-inflammatories. They say also exercise and hydration will help. The med team is the go-to guide on all this, They know the patient, the therapy, the eceteras that make all the difference.
I think all chemo is the toughest battle, irrespective of the drug. don't think that any one of the drugs they use is a walk in the park at all. Chemo has come a long way from what I've seen and know. I was in healthcare in the 1980s and definitely the path is somewhat to much easier but anyone who goes through it deserves several blue ribbons in my book!
Here's to the best!
Fondly,
Allie
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Jess, I also laughed about your wanting to choose what to keep.
To everyone with heartburn, I’m right there with you. So far tums help, but I will try the smaller, more frequent meals.
I don’t flush the baby wipes! They have these odor blocking bags I get from Amazon to put the wipes in. They work great!
So, I ended up in the hospital. Yesterday, day 5 after my second round of AC, I started feeling really nauseous, then started chilling, and realized my temp had spiked to 101. So I called the on call oncologist and he sent me to ER. I had a 103 fever by the time I arrived, and it took them hours and three bags of fluids to break it. They admitted me and I spiked again in the night. Still running one off and on, but not as high. I have pneumonia. But they are also, of course, waiting on a Covid test. I have no idea how this happened, but I’m so thankful for competent medical staff! It’s like being in prison because no one can visit and you can’t leave your room, but honestly, I feel so wiped out, all I’ve done is sleep when I can. They said I may get out Tuesday.
Take care, lovelies!
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Authorspot — Oh nooooo —- Bless your heart, this is a wretched time to be in the hospital — there all by yourself. Prayers it isn't Caronavirus and your pneumonia will respond quickly to antibiotics. I’m sending you a virtual hug and blowing you a kiss. Just put your hand on your cheek if you’re feeling lonely to catch another hug and I’ll be saying “Everything’s gonna be ok.”
j
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