Starting Chemo April 2020
Comments
-
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.
0 -
ByHisGraceTwice - thinking of you and hoping everything went well today! Found out that they can't do my port until the 8th due to the reduced schedule at the hospital. So not sure when, exactly, I'm starting. Frustrating.
0 -
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
0 -
thank you everyone for your love and support. My RO office opened early so I could get radiation finished before infusion and go home to rest. RO and i talked Monday about how things could be handled to minimize my allergic reaction Potential since this was first infusion.
i didn't say my RO said blah blah but did respectfully ask MO if some extra saline could be run before and after NO NO NO Could the infusion 90 minutes be extended and slow down the infusion rate? No no no (all suggestions by my RO)Were rudely rejected by the MO and I never said my RO suggested ... this MO was an absolute jerk —-NO NO NO “so what's your point?" NEVER HAD anyone have bad reaction to Herceptin— never had a patient have any heart probs. Lies and decaption. Don't know what this guy's prob is but he's not the same person he was a few weeks ago. Maybe telemedicine and reduced infusions are cutting into his income too much
I was shocked, in tears, almost walked out but where do I go? With C virus who's gonna take new patients? Infusión went ok until about half over — started nausea and vomiting big time. Nurses were nice but not overly attentive in view of my severe allergies— I've passed out and gone into respiratory arrest before. When given CT contrast.
After finished I waited in my car about an hour before I felt safe driving myself home. Feel like I've been run over by a Mack Truck. Did have chills and fever of 102.5 but it's normal now.
3 am CT — Edited to add an update:
Nausea, vomiting, chills, shakes, and fever came back. Went up to 102.5 and stayed there several hours. Tylenol didn't bring it down. Temperature went down to normal about an hour ago and whole body train wreck feeling started to go away. Feel like a new person. (Confess more than once was afraid symptoms were Cvirus and not Herceptin related. So relieved and grateful I'm feeling better.)
j
0 -
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
0 -
Jess - thanks. I briefly thought about that but I am SUPER squeamish about IVs and just the thought of having all that pumped into my arm vein over the course of a day just doesn't sound like a good option to me! I'll hear from the oncology nurse tomorrow about the schedule and go from there. They are also checking to see if they can squeeze me into the schedule on the 6th instead.
0 -
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.
0 -
wahoomama87 — thank you.
it was shocking because except for the last two visits and today, he's been a prince the last three years. I'm not a nervous Nellie crying hysterical hyphchrondriac; I'm a stable mature woman with lots of weirdo medical issues and severe, life threatening allergies. Just kept wondering if this Cvirus has affected his med practice and income which has him on edge and his livelihood is in jeopardy. I did my best to be even tempered trying not to break down in an ugly cry and be sympathetic and “walk a mile in his shoes" whenwhat I really wanted to do was give him a swift kick in his back pockets and knock him across the parking garage.
j
0 -
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
0 -
oh wahoomama87– the port usage went better than I thought it would. Kinda sharp discomfort when the “push pin” first wa plunged in and flushed with heparin. A baby saline bag was attached to the little piggy tail and hung on the iv pole dripping while the pharmacist prepared the Herceptin— when ready it was added to the little piggy saline tail — after the Herceptin finished ~90 minutes, I asked and the nurse allowed the rest of the little saline bag to flow. when finished the nurse did a heparin flush, pulled out the push pin and covered the flesh over the port with a large bandaid. All in all Not as uncomfortable as I’d anticipated.
You said they can’t do the portuntil the 8th are you going to start chemo with a vein iv before then?
0 -
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
0 -
Hurricaneblair the only advice or tips I can give right now is that the fear of the unknown is the scariest! I was very fortunate to have my husband with me and now that I have the first one done, still scary but have an idea of what to expect for the next round. I guess my advise would be to trust in your medical team and the nurses are absolutely wonderful, caring, knowable people, and roll with it! No question is crazy, we don’t need to be so stoic and tough, they are there to help us along this journey!
Day 2 has been alright, tired and taking it easy but still trying to stick to “normal” routine.
Stay safe everyone!
0 -
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
0 -
Erin - I think we're almost identical! I'll be getting my port on the 8th, so I'll be anxious to hear how yours went. Honestly - that part makes me more nervous than chemo almost!
0 -
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.
0 -
Jess - thinking of you and praying it all goes well today!
Kris
0 -
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
0 -
Dear All,
I would be very pleased to be added to this group. It’s been 10 days since my diagnosis and I’m finding it all very hard to process and digest. I am 47 years old, live in Dubai and work as a physiotherapist in a prominent hospital here. I have 2 kids, 23 and 20 years old who study in Toronto and Indiana respectively. I am really missing them now since they are still in North America and were not able to make it time for when the borders closed here. However, I am so blessed, in a way, that I am getting all my treatment in the same hospital where I work. Despite this, the whole situation has been overwhelming.
I have been diagnosed with ER+ and Her2+ and have been suggested to start with 17 weeks of chemo along with the targeted therapy, followed by surgery and possible radiation in the future. I will receive once a week chemo of Taxol and carboplatin and once in 3 weeks Herceptin and pertuzumab. I will start treatment on April 7.
I will continue to work during this time with limited exposure to patients. I would like you all to share your experiences through chemo...thoughts about intermittent fasting during chemo, considering a cooling cap, exercising/doing yoga during this timeconsidering the port will be in.
Look forward to being part of the group and hearing from you all.
0 -
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.
0 -
Hey @jelloelloello! I am also starting I-SPY 2 but waiting for which arm I get!
It sounds like we are on a similar path. My first chemo treatment begins on Monday, April 6 and will be 12 weeks of Taxol followed by 4 rounds - 24 weeks total.
Excited to have someone doing something similar. What day do you start it all?
0 -
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.
0 -
Quick reply to JustyneF:
I'm here now at the hospital, getting ready to start infusion #1! 4 cycles of Taxol, split up into weekly doses for 12 weeks. I am excited and nervous!
EDIT: I found out today from my infusion center nurse that I was using the word "cycles" wrong! I thought I was having 12 cycles of Taxol because I'm having 12 weekly infusions, but it's actually 4 cycles, with each cycle being spread out into 3 weekly treatments. I still feel like such a noob! haha
0 -
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!
0 -
Thanks for the welcoming me BostonGal. I’m getting my port put in on Monday. Getting nervous...
0 -
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.
0 -
jelloelloello - so glad to hear things went well yesterday. If you are able, maybe rub some tea tree oil on your nails regularly even if you do or don’t do the icing during infusion. The steroids will definitely give you lots of energy. I started mine yesterday in advance of today’s treatment. Wow, as a side benefit, the swelling from my last surgery and around my lymph nodes has gone down considerably. I’m also known as Sherri
0 -
jelloelloello - so glad to hear things went well yesterday. If you are able, maybe rub some tea tree oil on your nails regularly even if you do or don't do the icing during infusion. The steroids will definitely give you lots of energy. I started mine yesterday in advance of today's treatment. Wow, as a side benefit, the swelling from my last surgery and around my lymph nodes has gone down considerably. I'm also known as Sherri
0 -
Sugar77 Sherri, what does the tea tree oil do? BostonGal
0 -
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
0 -
I started treatment March 31st. First round of AC. I will have that every other week for 8 weeks, two off, then start Taxol + Carboplatin every week for 12. First infusion went well, and side effects have been minimal thus far. Most irritating is the bladder spasms. I'm calling today to see if they can give pyridium. Also headaches, a bit of nausea, and some aching. But nothing like I imagined. I don't know if it gets worse the more infusions you have?
Thankful there is a group for sharing. ❤️
0
