Starting Chemo September 2021
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Thanks ME!
I'm day 3 post first chemo and have been religiously following directions as told. The infusion nurse is the best to get advice from, IMO. The difference between what the oncologist told me and reality was worlds apart, so I'm listening to her now! They scheduled me for 5 hours of infusion but it took less that 2, nurse said to start on Claritan immediately, not wait until the Neulasta patch injects, and that I should get some THC and use it as well as the drugs for nausea.
So...no nausea yet...but anticipating for later today/tomorrow. I did sleep 11.5 hours last night and napped yesterday, too. I never nap. Hoping the sleep and the keto diet and THC keep me on the lesser side of side effects.
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Welcome, AnnMarie318 and JHam. We're so sorry you find yourselves here, but we hope this community can be a source of support for you as you continue down this road. You are certainly not alone!
The Mods
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Hey everyone! Second-time poster. I am starting chemo on 9/9, and getting my port placed on 9/8.
HummingbirdAZ and JHam, it looks like we're doing the same kind of treatment, AC-T. I understand the anxiety at having such intense drugs being put into your system -- the way I am dealing with it is telling myself that there are so many scientific studies backing the good outcomes of these regimens. And that this won't be forever, that by this time next year I'll be feeling back to my old self. JHam, I'm glad you're not experiencing too much nausea! I am definitely anxious about that.I'm preparing by getting comfy things like good audiobooks, soft sheets, and healthy (bland) foods to eat. And starting a good hydration regimen.
AnnMarie318, I too feel triggered by this whole experience -- my mom had metastatic breast cancer, and seeing her go through it when I was a kid was so scary. I'm trying to give myself a lot of space for that trauma, and sending a lot of compassion to myself during daily mindful meditation. Anyway, I am so sorry you had to see your mom go through this, and that you have your own experience with cancer too.
I need to schedule an appointment to get my hair cut -- I've had my hair short before, so it won't be a huge deal, but I'm not looking forward to the awkward re-growth period! I'm not doing anything for my eyebrows/lashes, I imagine I might experiment with penciling them in. Allure's "survivor's guide to breast cancer" has some good tips on getting through treatment, beauty-wise.
I am sending good vibes to you all starting chemo this month. I'll be checking in.
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Hello Ladies, Stopping in to give you all hope and encouragement! I'm 10 weeks post chemo and 6 weeks post mastectomy and I'm feeling and doing well. Eyelashes and eyebrows come back quick, my hair coming in, still short, but it is there. I know you all can do this, it sucks, but visualize the chemo killing off the cancer. There were days I wanted to quit, but I kept going. Drink plenty of water and rest as needed, the body heals itself when you are sleeping.
AnnMarie318-You asked if surgery was a option for triple negative, I am triple negative and I had a mastectomy with lymph node removal and doing well. I am waiting for my radiation date and how many weeks I'll get.
You've got this! Sending healing thoughts your way......
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Good morning! I wanted to share a little something I've been doing that has helped me emotionally during my infusion treatments. I take/wear something that lifts me up. One week it might be a shirt one of my sisters gave me, a water bottle one of my nieces gave me, my mom's rosary, etc. It has helped brighten my infusion days, so maybe it will work for you too.
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Hello everyone! This is my first post. I was diagnosed with invasive lobular carcinoma at the end of June and it has been a total whirlwind since then. I've had a mastectomy and now I will be starting the AC - T treatment on September 17. I am surrounded by very supportive family and friends, but amazingly this journey still feels so incredibly lonely. I am doing my best to prepare for the start of treatment…creating a comfort bag, ordering a wig, staying active etc . I have decided to cut my hair before it starts to fall out… to give me some control over the process, but it will be highly emotional for me. I have long hair and always have … I am very attached to it. I have decided to donate my hair in hopes that it helps me to know that my hair will live on lol. I know it will also help to stay connected to a community of women working through all the same emotions! So thank you in advance
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Hi Spades,
Sorry you find yourself here, but it is a good place to be, given the circumstances. The ladies on this site are very helpful and compassionate and we are all going through similar things unexpectedly. You'll find lots of information and support! You are lucky to have so much support at home and it sounds like you are doing all the right things. Keep watching and reading and keep us posted on how things are going for you!
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Hi, Spades2525. Glad you found this site. It is such a wealth of information and support. Have you considered/looked into cold capping to save your hair? I'm using the Dignicap and have had 7 Taxol treatments and no noticeable hair loss.
I would definitely recommend using the cold gloves and socks during your chemo infusions to prevent neuropathy. I've been using them from the beginning and I'm so happy I have had zero neuropathy. My Taxol infusion is 60 minutes and I take two sets of gloves and socks with me and switch them half way through the Taxol. You can get these on Amazon. Let me know if you would like any more info or recommendations on which ones I like.
I'll keep you in my prayers along with everyone here.
Blessings!
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Hi Hummingbird, thanks for the welcome. I was feeling lonely this morning, you are the first person to answer me by name despite other posts I made since I joined the site, and you did it over a week ago. Sorry I didn't notice. I guess I've been too busy feeling sorry for myself to see what's in front of me. I have to do a muga scan on Monday to see if my heart can take one kind of chemo being considered, I got scared when my Dr. told me that it can cause heart failure. I'm still scared. I've tried to live so healthily for decades: vitamins, good food, little drinking, no smoking, etc.
Hi to all other ladies on this thread. Sorry we are all in this "club", but I'm glad to have some company, and some details and recommendations of what is coming. No one around me offline seems to be any different, or is even talking to me of cancer.
JHam thanks for your first post, glad you had little nausea with your first chemo.
Mithz glad you will start treatment soon, I'm sorry your cancer is growing rapidly.
MeandJax, oh my second round of chemo. When you say "kick the nausea ahead of time", what do you mean? I hate the idea of nausea coming and would like to prevent it as much as possible. Is that Jax in your photo? So cute.
AnnMarie318 I feel the same as you, I don't want to do any of this treatment but am following everything my doctors recommend. I was diagnosed in June so this all seems in slo-mo to me.
4kids4dogs, I am getting genetic counseling next week by phone from the VA in Salt Lake UT. I had the oncotypeDX test and scored 28, medium high risk of recurrence. My mom, grandma and dad all died of cancers, though none had known breast cancer.
Hummingbird, how did your first chemo drip go? Hoping it went well. You haven't posted since the 3rd so I am wondering how you are.
DebbieM1958, your first treatment is today, I'm sure you're nervous. I hope it goes well.
K-Gobby, I didn't realize it was going to be 4 hours more or less for each chemo treatment. Sigh. Seems a long time to sit. Can you get up and move during the 4 hours or is it not possible to walk. My hips won't like sitting for 4 hours.
1982M, it took almost 3 weeks for my pathology, waiting was awful. Surgery was July 28th and I still don't have a worked out treatment plan.
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H AnnMarie, I was diagnosed in June 2021 and start my Chemo today - Round 1 - also like you 6 sessions 3 weeks apart followed by masectomy on the right in Jan 2022. I am getting a 4 med cocktail of Taxotere, Carboplatin, Herceptin and Perjeta. I do expect I will lose my hair apparently but they say it will grow back better than before so that's a bonus. Super nervous about everything but ready to get going and put this behind me. I had my port put in last Thursday and it was not a problem - they put you out (twilight) and I didnt know a thing about it. A little tender around the area but today, a week later, it is good to go and I hardly know it's there. Had my heart scan (MFUG) a few weeks ago and that was also not too scary but took about an hour of lying very still on a narrow bed thing while the machine did its magic. I just pictured my favorite things in my head and it really helped, then it was over. So many unknowns ahead but I am trying to have a super positive attitude as many people I know have got through this and come out fine on the other side. I hope to be one of those. So sorry about your Mom, I know the feeling. Never thought I would be on a group like this with BC but I am sure we will all do better for the interaction and comfort from so many others going through the same journey. Best of luck to you and everyone here. I'll update when I've had session 1 and a few days have passed.
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Hi Oldladyblue - yes, Day 1 today!!! Super nervous but ready to get this treatment going so it will be done and over with at some point. I am told my my nurse that my first session of infusion with be 8 hours - ugh.. 4 meds (Taxotere, Carboplatin, Herceptin and Perjeta) and they want to observe between each one to make sure I respond well). My husband (my rock) can be there for a short while for the first session but no more visitors after that due to Covid. I am armed with books, tablet, notepads, snacks, drinks etc and hope the day goes by quickly. I plan to try and watch the US Open Tennis semi finals if the reception is OK. That should take care of a chunk of time. Future sessions they say will be 5 - 6 hours. They told me I can get up and walk around in the room with my IV pole, walk to the restroom etc. So I was glad about that. My knees would not want to sit for 8 hours straight.
Re.Eyebrows - my daughter got me two things off Amazon - Eyebrow stencil stickers that you add with a brush. Both were less than $25. I will try them and see when the time comes. I am not too worried about the eyelashes but I think no eyebrows would bother me. Not very good with makeup so let's see if I end up looking like Collette Reardon on that SNL skit! Haha. I also got one of those baseball hat things with hair extensions from the sides for about $30 off Amazon. Not quite the same color as mine but it will work at a pinch.
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Hi Hummingbird - how was your first chemo session? I am having mine today and would love to hear any feedback you have. I have anti nausea meds to take (Zofran and Compazine if needed) ahead of time to get ahead of it. Did that work for you? Hope everything went well for you.
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DebbieM, good luck today! I'm dreading the loss of my eyebrows as well, but afraid all the options will make me look like a cartoon villain. Let us know how the stencils work.
Brooks_fountains, good luck to you too! I'll be one day behind you - starting AC-T tomorrow. Are you doing dose dense or standard spacing? I'm so sorry for what you went through with your mom. My biggest worry through this whole process is how it will affect my kids. I love what you said about sending compassion to yourself. I'm generally a person to stuff down my emotions and forge ahead, but I am trying hard to take a more honest and caring approach with myself now.
oldladyblue, I was also diagnosed at the end of June and had surgery in July, so I know what you mean about things moving in slo-mo. I hope the muga scan goes well and you get your plan in place soon.
Hummingbird, how are you feeling almost a week out?
1982, did you get your pathology report back yet? Hoping it was good news for you and you have a plan now.
Spades2525, JHam, Mithz, and anyone else I missed, welcome to the group!
I see my oncologist today for blood work and confirmation of my protocol. Fingers crossed nothing goes wrong at this point and we can start tomorrow as planned. I'm nervous but also ready to get on with things.
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Morning Ladies!
Sorry for ghosting but I've pretty much been sleeping for the last few days....I felt fine after my Friday morning infusion until about late Sunday evening when an overwhelming tiredness came upon me. Since then, I've been sleeping 10-12 hours at night and even taking a couple naps during the day. When I was awake, I felt exhausted so have been very non-productive. I listened to the onco nurse's instructions and followed the meds regime to the letter, taking the steroids and Claritan, plus drinking a ton of water. I never needed the nausea drugs! I did burp like an old man for a couple days, though, which one can only think of as funny.
I feel like I turned a corner last evening and suddenly had a bit of energy. Another long sleep last night but feel pretty close to normal today, so far anyway. I did experience some bone pain--mainly in the rib cage--and some constipation, but those could also have been from not moving much. I might try to go for a drive today to get out of the house. We have a mini heat wave in Phoenix for the next week--up around 110--so not going to risk walking.
DebbieM--good luck today, I'll be thinking of you! They infused anti-nausea meds for an hour prior to the chemo drugs on me, which may have been key, not sure. YOU CAN DO THIS! Report back when you feel up to it.
OldLadyBlue--keep taking the vitamins and supplements if you can. Both my natropathic oncologist and doctor said to do that. Maybe it made a difference? I also got some THC tincture and take the smallest dose at bedtime, also recommended by several medical folks (natropath, anesthesiologist, onco nurse, etc) If not legal in your area, you can get a medical card and most stores give a discount to cancer patients.
Good luck everyone this week and thanks for the continued support. Love to all!
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I had my first treatment on Tuesday and after the pre-meds was given the Herceptin, no side effects. Then the Taxol and again no side effects. I was more woozie from the dose of benadryl they did by drip. I woke up around 3:00 am with a slight headache and decided to use meditation to go back to sleep rather than taking any aspirin- enough drugs in body. Was able to go back to sleep till 6:00. Slight headache most of Wednesday morning, no nausea but I have a red rash on my checks and forehead. Still here on Thursday but not as pronounced. Nurse thought it was a reaction to the Taxol? I was wondering if anyone has experienced that reaction or was it from the infusion of Dexamethasone (steroid)? Would I expect this type of reaction each time? Thanks for all the support this sight brings.
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Hi Swimgal- if you could send the information regarding gloves and socks, that would be amazing. The AC combo is the first part of my treatment and my oncologist did not feel a coldcap would save my hair so I've moved on to working on acceptance. Kinda.
Mindthief - the impact on the kids is one of the hardest things to manage I find. Good thoughts to you for tomorrow
I was also dx in June, surgery in July and chemo in September… feels like long slow process but at times I have been grateful for the time to process and prepare.
DebbieM - hope today was ok. You sound prepared! I look forward to hearing how the eyebrow experiment goes
Oldladyblue- I hope as the day has gone on, you are feeling less lonely. This is such a difficult time! I totally get the fear .. hopefully this community will be helpful inmanaging it!
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Spades2525: Here are the links for the cold gloves and socks. The gloves are pretty much a one size fits all. I have a bigger hand and they were fine. I don't even use the thumb cutout area. I just put my whole hand in the middle. I wear a women's size 9 shoe and the socks fit good, but not much extra room, so maybe adjust the size of socks accordingly.
My Taxol infusion is an hour long and I will take my hands out of the gloves a couple times during that hour for maybe two or three minutes to give them a break. You'll feel if your hands are getting too cold. I don't seem to have to do that with the socks, but everyone is different.
Sending good wishes and positive thoughts as you begin your chemo treatment. One at a time. You've got this!
Please let me know if you have any other questions.
https://www.amazon.com/gp/product/B082HG964H/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1
https://www.amazon.com/gp/product/B003L4WONS/ref=ppx_yo_dt_b_asin_title_o09_s00?ie=UTF8&psc=1
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Well I survived Infusion Day 1 with my 4 meds (Herceptin, Perjeta, Carboplatin and Taxotere). It went by much quicker than I expected, although it was 7.5 hours. The time seemed to fly though, there were always nurses coming by, my phone was blowing up with texts of good wishes and thoughts from family and friends - very much appreciated. I had a slight reaction after the Herceptin which was just a scratchy throat and feeling like I had to keep clearing my throat. They gave me 50 mg of benadryl and it took care of it right away. No other side effects of the others and it went smoothly. I got a port last week and it was a breeze to do the infusion through that. A quick painless poke through the skin above the port and everything went through that. Loved it. Definitely beats an IV every time. I am hoping for minimal side effects over the next few days. I used the cold gloves and footsies (also from Amazon) for the Taxotere part of the infusion. They were not super freezing, I had been told to wear thin socks and thin cotton gloves underneath them. Hard to do anything with your hands for that hour while the meds are going in, so I just put my head back and dozed. It was all pretty easy and seamless.
HummingbirdAZ -glad you are feeling better. 110 , wow. We had that last week here in Sacramento. Ugh. That's all I can say. Heat and smoke from the fires not far away.
Spades 2525 and Mindthief - yes, will report back on the eyebrows - hahaha.....it won't be pretty I'm sure!!!!
CactusHouse - I will let you know if I get a rash too. So far nothing.
I feel empowered (slightly) that I have got this one infusion behind me and can cross it off my calendar. It wasn't bad at all. Best of luck to everyone about to start. You will do fine I'm sure. The nurses are wonderful and a great source of info if you have questions.
Wishing everyone a wonderful weekend ahead.
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Thank you ladies for your answering posts to me and advice to others. I do feel more hopeful, less scared and no longer as lonely knowing that you are out there posting and being helpful. I was feeling sort of lost in space or something in my head, caught in between real and unreal. I will find out on Wednesday what my future recommendations are for chemo, until then I will be reading and thinking of you brave fighters!
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Oldladyblue - sending love to you. You are not alone because we are all here to support you and each other. It's a crazy place to be but at least we can all share together. Have a beautiful evening and weekend.
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So happy to see the activity here and to read how you are all doing! I'm going to reread from the bottom up. Hugs to everyone.
DebbieM1958, thank you so much for the nice post to me. Glad your treatment went well and easily. I hope your side effects will be minimal. I asked my nurse navigator about medical CBD/THC drops as nothing seems to be helping me sleep. She said to wait to ask my hemo/onc doctor on Tuesday. It's legal here, just I haven't used any drugs at all for decades except for Novacaine for teeth work and muscle relaxers for my back after my car accident. I'm 64 years old but don't look it or feel it. Getting some flack from my friends for not using the "alternative" clinic near me for treatment...
cactushouse, I am up, as usual, since I have insomnia, after 4 hrs sleep, and came here for moral support and re-reading. It's amazing what I am forgetting these days due to my over the top worries and lack of sleep. What helps you to sleep?
spades2525, and mindthief , your posts helped me as I see our timelines are similar, I was feeling it was terribly slow moving forward and I wondered if this was "normal" cancer treatment progress. mindthief, good luck with your treatment today.
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Hi Swimgal - I am doing the cold gloves and footsies too - used them yesterday at session #1. My nurse told me the cold cap would not help as I will for sure lose my hair so I also am beginning to accept that. Ugh, wonder what my bald head will look like. Oh well. I have a couple of cute hats and also got one with extensions off the inside that looks OK. Things to look forward to, right? Thankfully it will all grow back when this is over. Have a great day.
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Hello everyone! I'm also in the September 2021 Chemo club. I started on Sept 8 with Carboplatin, Taxol and Keytruda. They gave me a ton of Benadryl with the infusion, so I ended up sleeping through the whole thing. No major side effects yet - just some occasional stomach cramping and a funny taste in my mouth. I'll be doing the Carbo/Taxol weekly for 24 weeks, with the Keytruda every 45 days. Then at week 12, they are going to add in AC. Trying to take it all one day at a time, because if I think too far forward, it freaks me out. Seems like mindfullness is definitely the way to go when you have cancer. And I'm still getting used to the idea that all this is actually happening.
My oncologist told me that cold capping won't work with my regimen, so I've cut my hair short in preparation. Funny - the hair, eyebrow, eyelash thing is emotionally much harder than I would have thought.
Love and hugs to all of you!
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Welcome oddboood, I am new here too, still sort of in disbelief, and like to come her just to feel companionship. I will find out my regimen on the 14th.
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Hello! I am new to the group! I am Thankful its here and I am not happy that I need it. I am not much of a social media/blogger but thanks to the web I have access to other people like you to share what could be an isolating experience.
I was diagnosed with IDC/Triple positive in my left breast (3.3 ci) stage 1B. No lump or pain just a routine mammogram on Aug 18. All of my tests (MRI, Bone scan, CT scan and ultra sound) found no other cancer lurking anywhere else. I leave in Charlotte and the Levine Cancer Ins. has been on it! I have met all 3 of my oncologist, my 2 nurse navigators are awesome. I will start with 6 rounds of chemo every 3 weeks (Taxotere,Herceptin,Pertuzumab,Paraplatin). Port goes in 9/16, chemo day is 9/22. After chemo a lumpectomy, lymph node biopsy, then radiation, hormonal therapy and then every 3 weeks for a year of Herceptin,Pertuzumab. So.......
Its a lot!!!! I have 4 kids (28 yr old son (lives local), 21 yr old son college local, 18 yr old son troubled just moved yesterday to Atlanta to live with my sister and her boyfriend and a 12 year old daughter that we adopted from Ukraine 3 yrs ago this Aug. Of course I worry about her the most watching me be sick and so forth. I am a believer (Christian) and pray continually. When I toured the chemo area I felt so bad for the the little old people receiving treatment and I hope I feel well enough to maybe help in some way.....not to sound angelic or anything but just see the need.
I have been brave, I have had lots of self pity and I have been very sad, I have been VERY angry and cussed more then I think I ever have in my life including my potty mouth days as a teen.
I am not going to do the cold cap seems like one more thing and scarves are pretty, comfortable and cool. I plan on going to a boutique that can do eyebrows and lashes. I'll ask them about what's best eyebrow wigs or tattoo.
I already fight chronic fatigue and digestive issues so I am preparing for the worst and hoping for the best. My son is getting married next year and I am hosting a catered engagement party 16 days after first chemo treatment. Fingers crossed prayer said!!!!
I don't know why but the port freaks me out a little. That's it! Thank you ladies for listening and sharing!!! Blessings to all!!
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Hi Oldladyblue and Butterfly47! It's so nice to connect with others who are going through this. It's funny, I am also having a biopsy of my other breast tomorrow - there are some BIRADS 4B calcifications. Can't even get up the energy to worry about that with the triple negative going on in my other boob. Ah, life.
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Hello Oldladyblue- My sleep is not going well. I try to be in bed by 10:30, usually wake up at 3:00. I use relaxation, meditation to try to get my self back to sleep. Some times it works, other times I doze back off for half hour or so and then am wide awake. I am hoping as this journey goes along, it becomes less stressful, hopefully allowing for some better sleep. I agree coming here and just reading and being part of group that can identify what you are going through means a lot.
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I received this in the mail yesterday from a friend who is celebrating her 10 year anniversary from breast cancer this week. It totally cracked me up and coming from where it did, made me feel hopeful. I'm so curious to see what's inside but am thinking I'll save it for Thanksgiving/Birthday weekend when I'll be alone, hairless and probably a little depressed!
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That looks super fun! I'm sure it will come in handy at some point - and how sweet of your friend. I love 10 years post Breast Cancer, that's pretty awesome!
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