Topic: Starting Chemo April 2020

Apr 16, 2020 12:50PM - edited Apr 16, 2020 03:55PM by BostonGal

Hello all!

I am writing a general report on my first chemotherapy session.

Oh but first, I want to thank all for all your posts and sharing. My heart is full.

So...yes...yesterday I was terrified. And in fact, I said as someone else said in a post "this is real!" Until I had knowledge of a firm date, I was in denial. But then yesterday, when I got the confirmation that they would start today, I had to conquer my fear.

So let me tell you about my experience.

I am having Adriamycin and Cytoxan first. Later I will have Taxol. I worried about the Adriamycin but my NP told me that they've made the careful decision to administer it first based on the specifics of my situation.

On arrival to the chemotherapy center, I was taken aback at how welcoming all were and how nice the treatment areas are. I chose a seat next to a window with a very nice view. I was tempted to hide in a corner, but made myself take the window seat!

An assistant took all my vital signs and then my chemo nurse came to me and gave me a quick overview of the day in a very easy to understand way. I like that because it eliminated my usual response to stress which is to pepper people with questions.

Here was the procedure:

1. Clean off my port area and put the iv needle in: did not even feel this!

2. Give me some steroid pills and two separate anti-nausea drugs in my iv line.

3. Give me some fluids in my iv to hydrate me. I was relieved that I did not need to pee but the nurse told me it would be no problem getting to the bathroom if I did. She also encouraged me to drink as much as I want during hydration.

4. Push the Adriamycin into the iv line. These were two large syringes full of a very bright red liquid and again, I didn't feel a thing and the nurse and I had a great conversation while she pushed the drug. Only took about 10 minutes or so I think.

5. I believe she then flushed and hydrated me again.

6. Hook the IV to some Cytotoxan (in a bag). That took about one hour to get in.

7. Someone brought lunch to me!!!!!!! Had a nice sandwich, soup and brought the big chocolate cookie,chips and apple home to enjoy later.

8. GO HOME!

I feel tired from anticipation and lack of coffee right now but nothing else really. Had a tiny bit of coffee and the chocolate cookie and will read and nap. I am supposed to drink a lot of liquid to flush out the remnants of the drugs. Adriamycin can turn your pee cherry red for a while and I got that. Feeling very slight cramping in the belly but that's the kind of thing that I might get anyway without the chemo and so I'm not going to make a big deal about this.

The bigger thing to relate is that I was overwhelmed with gratitude and a sense of peace while at the center. Ya'. I have cancer; but...I am SO grateful to have such good, kind, and skillful care!

My best to all!

Allie (aka BostonGal originally)

Apr 16, 2020 06:52PM - edited Apr 17, 2020 07:34AM by JavaJana

Day 9 after chemo #1 and I'm doing ok. Is anyone else feeling like me - like a weirdo I keep waiting for a side effect? I mean, they give us a list a mile long of side effects and what to do, so every little twinge gets me wondering. I really need to find a new hobby 😂.

Seriously, the Neulasta has been the cause of the only significant symptom, bone and joint aches started about 12 hours after the injection, and lasted for almost 3 days, Saturday being the worst. My mouth got tender along with a sore throat over the weekend, but the baking soda gargle has helped and I noticed today I don't seem to have much discomfort now. Food definitely tastes different, and hot temp drinks are uncomfortable. 3-4 episodes of diarrhea about day 7-8, but only needed a few Imodium. This was one of my biggest worries, as they told me it can be a horrible problem from the Perjeta. Other random weird feelings sometimes, but really nothing horrible has happened and I'm very grateful!

I don't feel very fatigued like I did the first few days. I now have a week and a half to be kind of normal until next time, unless some late symptoms pop up. And I really hope each cycle is predictable and the effects aren't cumulative, but I realize that may not be how this goes.

I'm hoping and praying y'all have a great weekend with minimal chemo induced nonsense 😘 Jana

ETA: I tried the Claritin starting a few days before my chemo, and until 3 days after. I don't feel it helped with the bone pain, so I probably won't do it again since it gives me a headache anyway. Maybe I'll try benadryl next time since it only makes me sleepy.

Apr 16, 2020 07:16PM jelloelloello wrote:

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. <3

Apr 16, 2020 10:39PM sunandsea wrote:

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.

Apr 17, 2020 05:52AM AuthorSpot wrote:

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.”

Apr 17, 2020 05:55AM Sugar77 wrote:

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.

Apr 17, 2020 08:27AM - edited Apr 18, 2020 10:34AM by BostonGal

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.

Apr 17, 2020 12:45PM jelloelloello wrote:

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

Apr 17, 2020 02:51PM - edited Apr 17, 2020 02:51PM by Gogomb

Apr 17, 2020 03:44PM jelloelloello wrote:

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!

Apr 17, 2020 06:40PM Dawn1027 wrote:

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.

Apr 18, 2020 07:29AM sunandsea wrote:

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 🌈

Apr 18, 2020 09:37AM ARmom4 wrote:

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!

Apr 18, 2020 02:41PM wahoomama87 wrote:

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

Apr 18, 2020 10:44PM ipenelope wrote:

Opps, chemo starts 04/20