Topic: Starting Chemo April 2020

Apr 1, 2020 04:39PM jelloelloello wrote:

Hey Sugar77- congrats on the green light!

pjb61 - Welcome to the group!

J (ByHisGraceTwice) - I thought about you today and hope it went well. It super sucks to be alone. I will be experiencing that myself tomorrow. My partner can only drop me off and pick me up-- there's not even a waiting area available because of social distancing and hospital security rules. We are screened at the entrance: they take the temperature of everyone (not just patients) and ask a few questions. The infusion center has even stricter rules-- no visitors at all; patients only and limited staff. I really hope you felt cared for by the staff and that you feel ok.

Apr 1, 2020 06:24PM jelloelloello wrote:

Hey Kris- About the port: I also requested one but my hospital also has a reduced surgery schedule due to the virus situation and staffing, but my oncologist suggested we start chemo tomorrow anyway with a regular IV. She also said that I can think about it and schedule a port later if I decide I’m ready for it for sure. What I’m trying to say is, maybe you can start sooner than the 8th because there’s (probably) no rule that the port has to be in place to begin

Apr 1, 2020 07:18PM MsMarie wrote:

Love and hugs to all April 2020 Chemo ladies💕

I was part of the April Chemo 2019 group. I started AC-T Mar 29, 2019 and I didn't finish until August. But I finished and you will too! I'm doing well and rocking a cute pixie (that needs a little trim)!

Special thoughts as you enter this part of your treatment journey during this crazy time. Especially now, reach out to this amazing virtual community for support.

You got this 😘 MM

Apr 1, 2020 07:46PM wahoomama87 wrote:

J - so sorry that it was such a negative experience today! Prayers that your nausea and vomiting don't continue. And that you have a better experience for the next one. I know it's so frustrating to be "cared for" by a provider who doesn't really seem to care.

Apr 1, 2020 08:14PM Hurricaneblair wrote:

A BIG HELLO to the fellow newbies who have joined our group over the last couple of days. It truly is a comforting feeling to have and get to know people that are going through and experiencing similar situations....we really aren't alone...even if we have to do some of these treatments alone, please know we will be right hear thinking about you and praying for you!

Kris...it does look like we are on a similar path...I think I saw some of your posts in the Triple Positive group/thread thing. I will be getting my port on Tues, April 7.

Dup403....so grateful your husband was able to go with you and now you have your first treatment behind you and you will know what to expect next time....any tips or recommendations?

Pjb61....I am in Illinois, too. A little further south than you...about 15 miles east of and across the river from St Louis.

Emmyvan...I have been wondering about the hair thing as well....love that the three of you all have the same cut now! And you were able to donate 16 inches?. Awesome! How did your treatment go today??

Looking forward to getting to know everyone even better! Erin

Apr 1, 2020 08:29PM Hurricaneblair wrote:

J...I am so sorry to hear about both your negative experience with your MO 😡 with the nausea & vomiting.😢. Glad you waited in the parking lot before driving home. How are you feeling now? Hope you are able to have a good night’s rest and feel great in the morning.

Emmyvan & Jelloelloello....are you both still starting tomorrow? Praying for as pleasant an experience as possible.

Sugar77....is everything still set for Friday?.

i am having my PET scan tomorrow....I don’t want there to be anything that needs to be found, BUT if there is something that needs to be found, I want them to find it! Know what I mean?

Erin

Apr 2, 2020 03:12AM - edited Apr 2, 2020 07:28AM by ByHisGraceTwice

jelloelloello — thinking about you. You'll be starting in a couple hours. You'll not have to worry ever again what it's like because after today you'll know. Just sent you a big bear hug and a kiss on your cheek. If you get scared or unsettled, just put your hand on your cheek to feel the hug and kiss. Let us know how it goes.

j

Apr 2, 2020 07:05AM wahoomama87 wrote:

ByHisGraceTwice - no. They want the port in. I have to have 2 chemo meds and 2 targeted therapies, so it's a lot. I don't want to try in the vein. Seems like too much. Hoping that they can still start maybe Friday of next week, but I should know more today sometime.

Apr 2, 2020 07:24AM ByHisGraceTwice wrote:

kris — yes that would be too much to try in an arm vein. I was waiting yesterday, thinking I’d feel the Herceptin enter the big vein through the port like I can when CT contrast or heparin goes in an arm vein, but couldn’t feel a thing. This morning the port doesn’t hurt at all. Still tender from being put in a week ago if I move the wrong way, or lift something a bit too heavy, but I’m thrilled nothing from being used yesterday. Your port placement will go smoothly and we’ll both celebrate on the 8th. You get a port and I get finished with radiation that day!

j

Apr 2, 2020 08:00AM ByHisGraceTwice wrote:

Hurricaneblair

Thanks for asking how I’m doing. Nausea, vomiting, chills, shakes, and fever went up to 102.5 and stayed there until about 2 am. Tylenol didn’t bring down fever at all. Whole body felt weird, worse than a train wreck — then poof it all went away. Confess more than once I was afraid symptoms were Cvirus and not Herceptin related. So relieved and grateful, I feel like a new person this morning.

Please don’t anybody be worried you’ll have this reaction to Herceptin. I’m the weirdo. The whole reaction I had is very much like what happens to me if I eat ice cream. I’m allergic to a protein in cow’s milk. I’m also allergic to a protein in bay scallops. Herceptin is made from a protein in Chinese hamster ovaries.

Apr 2, 2020 11:25AM Sugar77 wrote:

jelloelloello - thinking of you and hoping today's infusion goes smooth. Drink lots of water when you get home to flush it out of your system now that it's done it's thing.

Wow, this is a busy group. Hoping everyone is coping well. It's a tough time and probably even tougher for many of us going through treatment. This morning, I participated in a Zoom seminar about Finding Resilience in Difficult times. Though the session was primarily intended to help participates cope with the quarantine/COVID-19 situation, there were some takeaways that apply to us. One tool that stood out to me is a "Three Good Things" exercise. At the end of each day or at the start of the next, think back to the past 24 hours and note three good things that happened in your life. Sometimes we have to dig deep but this is an exercise that I plan to utilize as I head into chemo striating tomorrow.

Apr 2, 2020 05:07PM - edited Apr 2, 2020 05:13PM by BostonGal

Port done tday. ..some wonderful nurses - so great at soothing nerves. Very nice doc and surgical techs. I was overwhelmed with how complicated the procedure room is. All this equipment and people needed to deal with my cancer. ..and then there was the Versed and some how I was awake again. .I took two Tylenol when I got home, ate , talked to friend and am now in cozy bed with ice pack and cat.

PS: Sugar77 I used that exercise to help me through very stressful time in waiting room recently!

PSS: welcome new member Zee72!

Apr 3, 2020 03:32AM jelloelloello wrote:

Sugar77: Thanks for sharing that coping tip from the webinar and for the well wishes today! By the way, do you have another name you'd like us to call you? It's not at all required, but just wanted to check.

J (ByHisGraceTwice): Thank you so much for the comforting words! I read them right before I started my infusions and it was nice :) By the way, do you want to share what part of the country you live in? It's not at all required, but just wanted to check.

BostonGal: Cozy in bed with ice pack and cat sounds awesome! So relieved to hear that your port surgery was smooth. I am still hoping to get it done soon, too. By the way, are you from Boston as your username implies? Should I add Massachusetts for you to the roll call list on top? And if you have another name you'd like us to call you, please let us know. It's not at all required, but just wanted to check.

zee72: Welcome! Glad to have you join us and share your story. I'm interested in how you are planning to keep working during treatments. While my oncologist also supported me doing the same, I've been feeling overwhelmed with planning for chemo, learning about breast cancer, prepping my house, dealing with the coronavirus craziness (my city is on lockdown and supplies are hard to come by), and stressed out at work. So, I ended up taking off a few weeks, starting this past Monday, which worked out perfectly because I found out on Wednesday that I would be starting chemo on Thursday. I am relieved to have some time off to see how my first infusion feels. Especially since it's currently 1am and I'm wide awake, so if I had planned to work tomorrow, I would probably struggle with energy in the morning! It would be interesting to hear more about how you made the decision to keep working (assuming you had a choice) and other factors we might consider. Also, similar question for you about your name preference. Should we continue to call you zee72, or just Zee, or anything else? It's not at all required, but just wanted to check.

For everyone:

About pre-meds given immediately before your chemo meds: My infusion center nurse explained that the steroids in the pre-meds that I'm getting (not sure if you all will have the same) will probably keep me awake and feeling pretty good in terms of energy-- it's true! I almost feel great and it's weird! Ok, not great, but definitely awake and not in pain. I was exhausted after treatment, but I went for a walk outside with my partner, then ate a light dinner (chicken soup and a scoop of rice) and laid down to rest early. Then my exhaustion (which was like being tired but not sleepy) suddenly turned into wide awake. Plus, I'm getting up to use the bathroom every few hours because I'm drinking so much water.

About my first chemo appointment today: Overall, it was a really nice experience, mostly because of the staff. I had to fast last night/this morning for a blood draw for a research study I'm in, so I brought a sandwich and homemade iced latte (kinda) for me to enjoy as soon as I finished with the blood draw. I also got to have a quick Q&A with my medical oncologist, who I love, and that was helpful. It took forever for all of these steps because my appointments were scheduled the night before and some things weren't updated in the system, and because staff is reduced due to the coronavirus situation. Got to the hospital at 10am, but didn't get to the infusion center until 12:30pm. Then, about an hour later, I got settled in my chair and hooked up to the IV, but there was a delay releasing my meds, so I didn't actually start infusions for another 2 hours, around 3:45pm. I was finished around 6pm. So it was a long day! My nurse said this slow start is common for the first infusion because of all the paperwork and double-checking, etc., and it shouldn't happen next time. The Benadryl in the pre-meds didn't bother me (some people have adverse reactions) and it made me sleepy so I ended up sleeping pretty hard through most of the Taxol infusion, which definitely made the experience better! By the way, I didn't do any of the preventative tricks that I've read others talk about: no cold cap (too expensive), no icing of the hands or feet, no special oils or anything for nails or stuff... not because I don't believe that they work, but because I think I'm getting a mild enough dose and I am feeling optimistic that I can handle any changes and talk to my oncologist about interventions at that time.

Chemo tip: At the end of all my chemo meds, my nurse said, if I have time, he would give me the rest of the saline fluids to help with my hydration rather than throwing out the rest of the bag. What a great idea! He was like, hey, you paid for it so you might as well use it! This may have helped me to leave feeling pretty good since I was already decently hydrated.

Apr 3, 2020 05:44AM - edited Apr 3, 2020 05:45AM by Sugar77

Apr 3, 2020 07:23AM BostonGal wrote:

I ***understand*** the nerves...I think the nursing staff will reassure you. The procedure itself is very quick and you get good sedation. After it is a little uncomfortable because you have a small foreign object in your sensitive upper chest area! And like every thing else I assume we will get used to it so we don't notice it after a while. My best wishes. BostonGal