Starting Chemo April 2020
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Thank you.
My husband died of metastatic prostate cancer. He got a lot of years that we didn't think he'd get but we did spend a great deal of time in hospitals and doctors' offices. When he had his first PET scan he said he "lit up like a Christmas tree". When I saw my PET scan yesterday -- you guessed it -- I lit up like a Christmas tree too. There's way too much deja vu going on...
Reading here makes me understand that I need to see myself as a survivor -- not a victim. Honestly, just reading here helps.
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Heather - welcome! Thanks for sharing about your chemo and your port. I'm starting chemo tomorrow (Erin!) with my brand new port from yesterday. We'll see how that feels. Definitely going to be using that Lidocaine cream.
Erin - I ordered two really soft shirts off Amazon, because someone told me to wear something that buttons down the front. And I don't own anything that is not work clothes like that, and even a small amount of those.
Kris
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Molly -
So sorry to hear all this - but you are definitely not alone. This group has been amazing with me so far.
Kris
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Dear Molly5678,
Welcome to the BCO community. We are so sorry for all that you have been through from your husband's death to Prostate Cancer to your own new diagnosis of breast cancer and the isolation that everyone is dealing with right now due to the Covid-19 virus. We are so glad that you reached out and joined us. This is a community that is full of support and a lifeline for so many, especially right now during this very trying time. Please stay active here keep us all posted on how treatment goes as you get started next week. Please ask your questions and feel free to private message us "the Mods" if we can help you navigate your way around, find resources or links to helpful information or steer you towards a topic that might be a support.
The Mods
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welcome to all the newcomers on this group. As read through the posts, I’m picking up so much useful information and realize that so much of what I’m feeling, everyone is going through too. It’s wonderful to have this space to share our experiences.
I went to work today...it was 2 days after my first chemo. I work as a physiotherapist, and we are currently doing only telephone consults. I was there only for 5 hours and was totally wiped out! I was really taken aback! How am I going to cope with weekly sessions for the next 16 weeks! Not sure I’m feeling this way due to having Taxol, carboplatin, herceptin and perjeta all together as my first session? Also still quite bruised with the port. Guess it’s been only 3 days!
Kris, good luck with your first chemo!
Zarin
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Heather— our stories are remarkably similar! That’s exactly how everything went down for me as well, apparently only a week after you. Strange, huh? I’m also close to your age, I turned 50 in December. I’m having the same treatment, except they started the AC first since we live in a rural area and have very few Covid cases. It’s also very easy for me to stay isolated. Don’t feel bad for crying. The whole thing is overwhelming and exhausting. And scary. We’ve endured a lot over the years in my family—major illnesses, disabilities, horrific accidents—so my go to attitude when something bad happens is sort of an “oh, this again.” But I had several meltdowns during the first few weeks. It’s okay to not always feel like a badass. That’s what we’re all here for.
Molly—that’s my daughter’s name! ❤️ I understand completely about always being the rock. I’m my family’s go to person for everything. And knowing that I will have to relinquish some of that threw me for a loop. I felt a little untethered and unsure of who I am, if not that person. Does that make sense? I guess we’ll figure it out as we go along. My condolences on your husband. And I’m sorry you “lit up like a Christmas tree.” My lungs lit up.
Zee—lady, you have my utmost admiration for working through this. My first few days I was lucky to get off my couch. I hope you can continue to do so.
Everyone else—hugs.
As for me, I’m feeling the best today that I have in a while. The antibiotics must have kicked in on the UTI, and the rinse is helping the mouth sores. I got my genetic testing back finally, and have some very rare gene mutation that actually puts me at risk for a variety of cancers, but is NOT usually associated with breast cancer. My poor doctor was bewildered. I asked if the port incident had taught him nothing. My body seems to delight in being a medical anomaly. 🤪 He’s scheduling a teleconference appointment with a geneticist at Barnes in St. Louis. 🤷🏻♀️
❤️Stacey
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LiseC (Lise) Florida 4/10
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Erin and Kris...I’ll be thinking about you tomorrow. You will be so happy to have the first one done and know what to expect. Hope you sleep well tonight.
Molly...I’m so sorry. This group is so supportive...just let us know what you need. It’s okay to not always be the strong one and I bet your kids will step up for you.
Stacey...I wish I was doing AC first to get it over first. Although my MO says everyone is do different regarding side effects and how they handle treatment. I turn 50 in June and was planning a celebratory vacation prior to diagnosis and COVD19. Life has different plans. Where do you live? I only ask because I see your doctor is consulting with Barnes Jewish and I’m born and raised in St Louis...my ❤️ Is still in the Midwest.
Heather
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CHEMO DAY NUMBER ONE OF SIX IS COMOLETE AND IN THE BOOKS!!
a message of encouragement from my day:All done and it went so much more smoothly than I thought...almost like...did they put anything in those IV bags??
I had a blessing angel show up...one of my Weight Watcher members came to receive a treatment for her breast cancer. She sat next to me and we chatted pretty much the whole time she was receiving her treatments! Made that hour and a half go by in a snap!!💗
It went so much better than I anticipated! At first it felt like I was being dropped off for my first day of Kindergarten. Steven prayed for me in the car, walked me in and we chatted with the receptionist. Then he told me I would do well today and I opened the door to go back with tears welling in my eyes! But praise the Lord that the PRE- medications did their job for me today. My nurse was very kind and encouraging...gave me a port pillow, several caps and some boot legged gloves to use. She says to anticipate the meds wearing off by Saturday/Sunday, and I might feel more of the chemo side effects...I know it’s coming.😢 Steven and I went on a short walk before dinner because it was so lovely today.
Kris....how was your day? How is your port?
Praying for you all...Erin
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Hi guys,
I am returning to this forum after a four year break. I myself was diagnosed with breast cancer four years ago. Stage 2a. I did the chemo and Rads and Tamoxifen.
Sadly my mum has just been diagnosed with Er+, PR+ and Her2+ breast cancer and will be starting chemo in the next two weeks. She is 80!
I’m concerned about the Her2 thing. It’s a little more aggressive right?
But am more concerned because on her CAT scan some lymph nodes in her stomach showed up. The doctor said she didn’t think this was necessarily cancer but that they would scan in another six weeks to check and see if they had gone or not. I can’t really remember what she meant by that. Anyone able to help me here? She seemed to be suggesting that if the nodes in the armpit and stomach both went after chemo then it was likely it was cancer???? (I’m not sure) But that if the armpit ones went and tummy ones didn’t then the stomach ones were maybe scar tissue or infection? She also said the cancer doesn’t tend to take that sort of pathway. Her bone scan was completely clean. Is that what she means? Isn’t it normally the bones it goes into furst
My mum is getting chemo first. The tumour is only 2cm but the Her2 means chemo first. She is also getting perjeta and Herceptin. Any of you had this trio? What should she expect? She’s getting it once a week for 12 weeks so it’s a little gentler on her.
I’m so grateful for any answers. I’m sorry we all need to be here at all. I found this forum was my lifeline four years ago and I made wonderful friends all over the world who I’ve even met up with now.
D
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Hi Dolly2019, sorry to hear about your mom’s diagnosis. Seems like your mom and I are on a similar protocol. Weekly chemo of Taxol and carboplatin and every third week herceptin and perjeta. The chemo will be once a week for me for 17 weeks. I had my first chemo on 7th april. Not sure what I was expecting ! was quite wiped out the last few days. The thought of going through this weekly is wearing me down. But having said this, I am feeling a lot better today
Good luck to your mom! And best wishes to you!
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JustyneF,
We are in the thick of it now...I am glad things seemed to go reasonably well for you. May they stay that way!
I love all the details you provide and it is incredible you are walking so much. "They" say that can really help...
I am a little afraid to go out at this point and I have not even started chemo!
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Hello Dolly2019!
I send my best wishes to you and your mother!
BostonGal
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hi guys,
Thanks for reading my post! Zee I hope your first chemo has not caused too much tiredness. When I did my treatment four years ago I was mostly tired at the very end of it all but then I was doing a different chemo and over a three week slot. What I will say and I’ve been telling my mum is that I was barely sick in the chemos that I did. Just sick on day one of first one. It shocked me how easy the chemo bit was.
I cold capped for 5 months and that, I have to say, was the worst of all of it!
My mum is apprehensive about this chemo treatment but is aware that it’s needed to stop it in its tracks.
Zee.... do you know why some Her2 women get perjeta AND herceptin and why some only get one of them?
Are you using a port or vein?
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Welcome LiseC!
BostonGal
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Heather— I’m about thirty minutes north of Quincy, IL. Roughly 2 1/2 hours from St. Louis. Been there many times! My OC splits his time between Quincy and Barnes. He’s amazing. When this is all over we should meet up in St. Louis for a celebration! I had a lot of travel plans this year as well, including a speaking engagement at a conference in July. But this too shall pass, and make what comes next even sweeter. ❤️
Has anyone else cut their hair yet? I chopped mine off into this short cut I’d been too scared to try right after I got my diagnosis. I loved it! I do love the “no f**ks given” attitude cancer has bestowed upon me. But my head was starting to itch really badly this week, so I had my husband buzz it all off last night. I spent the whole time giggling because the electric trimmer tickled. I don’t think it’s a look I’d choose for myself, but the relief of itchiness and the absolute ease of not having to do my hair is worth it!
❤️ to you all.
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Stacey
I had very long hair - down to waist. Always long. I cut about twelve inches off about a week ago. I may cut more soon. I might look online to see how to do a "pixie" cut. I am looking into how to make head coverings now.
BostonGal
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Erin - I swear we are soul sisters! CHEMO #1 of 6 DONE AND DONE! I also feel pretty good. It was a long day because they took everything slowly, but the nurses were amazing. My husband also left me at the door - but through texting he and my siblings and our good friends prayed me through each and every part. I was sending them a text when something new started, with a specific thing to pray for. It also is not lost on me that Chemo Day 1 is Good Friday.
Stacey and Boston Gal - my hair was already short, but it's pretty fine and I feel quite confident that I will lose it! I had my hairdresser cut it really short last week, so that my husband can shave my head easily. I already have lots of hats and scarves - I bought a few and then friends that have been through this have given me some. Now I just need to learn how to draw eyebrows if I lose those! I'm so inept at makeup, but I'll have to learn that.
We'll see what else kicks in over the weekend and early next week.
Kris
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Hi! I'm so glad to find this group. This whole experience is really scary, and doing so much of it alone makes it even worse.
I'm recovering from a double mastectomy (surgery on March 25), am triple positive and this is my second round with breast cancer. Since my first round was in 1998 (at the age of 45), I had no lymph nodes under my left arm to test and I've already had radiation so won't be having that again. (I had the 1998 surgery a few months before they started doing sentinel node testing.) Oncologist said this is an unusual situation (lucky me!) and doesn't know what chemo protocol they'll be using yet. The dye injected by my surgeon into the tumor before it was removed didn't go anywhere and the PET scan I had two days before surgery was clear. I guess that's good. I live about 65 miles from Boston on Cape Cod. The COVID cases are on the upswing, and my oncologist wants to wait a few weeks before starting chemo. I'm nervous about waiting, and also nervous about starting chemo. Has anyone else had this situation with the lymph nodes? And am I being nervous about nothing regarding having to wait to start chemo?
Nan
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Dear Dolly2019,
My understanding is that herceptin is used alone for low risk and less aggressive her2+ and herceptin and perjeta is used together for the faster moving her2+. Do you happen to know what the ki 67 score was for your mom? This is the growth rate of the cells. Mine was 61%. I have a port inserted so everything will be administered through the port.
Today I feel a lot better. A lot more energy. I’m struggling to get my walks in due to the strict lockdown we have in Dubai. Luckily I stay in an independent house so can spend some time in the garden. The simple joys of life that we all are craving for...!
Zarin
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Due to side effect my perjeta was discontinued after the first round, but has been a lot better on just herceptin
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Zee,
Thank you for that info. No I’m not sure what the Ki67 is. Is that the same as grade? Doctor just said it was high grade and Her2. I think I just took that and ran with it instead of delving in more in front of my mum.
She is deeply worried about these lymph nodes in the stomach though. They lit up. Doctor says it could be for a number of reasons not linked to BC but that they’d scan her again in another 6 weeks. It’s all a little worrying.
I’m glad you have a lovely garden to go and sit in. This Covid thing will never make me question going to my work again!!!
I am from Scotland so we don’t have good enough weather yet, for sitting out. I hope you’re managing to keep in good spirits during chemo. It’s a boring road. I did it four years ago and it was boredom that drove me insane more than anything.
Enjoy the sun today
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Dolly2019,
The grade is calculated by adding up a few scores. The grades are from 1-3, grade 3 being the highest. The ki 67 is a separate score that is a percentage of how quickly the cells multiply. The grade and ki 67 score aren’t necessarily directly linked. In other words, one can have a grade 3 tumor but with a low multiplication rate.
Good luck with your mom with the future rescan!
It is all so stressful. Especially for all us with the covid situation. The next few months will be trying times. Take care everyone and keep well.
Zarin
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Hi Nan!
I'm glad you found the group. I am a fellow MA resident and am in limbo as to my chemo start date.
BostonGal...
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CCGirl (Nan) - Sorry to hear you are going through this again and so glad you found us. Our stories are similar. Regarding the lymph nodes, I had a sentinel node biopsy done in 2009. It was rather new at the time and not many surgeons had a lot of experience with it. Mine did and I had two nodes removed. Fast forward exactly 10 years, a new primary in the same irradiated breast. I had a sentinel node biopsy done again and three were removed. Mapping for the procedure was difficult because the path was disturbed in 2009. I just started chemo last Friday. It's like deja vu but now I'm older and am still recovering from an emergency surgery to remove my right reconstruction.
Everyone - sounds like many of us have at least one treatment under our belt or are about to have it in the next week or so. My hair will likely start falling out in the next week or two. I will be having my hair buzzed before it falls out. Those who are planning to shave your heads, a piece of advice is not to shave it right to the scalp. The medical wig store I went to strongly advised to buzz the hair down to about a 1/4 to 1/2 inch instead. They would normally do it for me but since everything is closed for COVID, this was their advice. I think on a hair shaver, it's a #2 or #3.They said shaving right off smooth to the scalp can cause potential issues with the follicles.
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Hi guys,
I had a little bit to catch up on. I’ve been away for a few days I had some issues with medication causing constipation and oh it was painful. I got other medication (senokot) from the pharmacist and now all seems to be back to normal thank goodness. I have had headaches, has anyone had headaches? All of my hair follicles hurt so I’m thinking that may be directly related to my headaches?
Kris, I am horrible with that stuff too and was trying to find something online as a “how to draw eyebrows”. I came up with an idea of cutting out my current eyebrow shape with paper so I have something to go by when they do fall out. 🤷🏻♀️ I’m not sure it will work but I thought a template might be a good start - haha!
I hope everyone is keeping well.
Bonnie
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Bonnie and Sherri - you are so clever. I would add that you can refer to photos to recreate eyebrows. In my case, it might be a chance to improve them because with menopause, my eyebrows and lashes became much thinner...
Question...I don't have a way of shaving my head and was thinking of a very much shorter or even a pixie cut...would either of you or anyone know how or even if I should do that? I still have long hair even though I cut off about 12 inches..it is still just a little bit past my clavicles..I just don't know which way is best to manage the expected hair loss...
Thank you
BostonGal...I should have a different name...
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BostonGal - my long time hairdresser met me somewhere and chopped mine off to a very short pixie. I'm still planning to shave it close if/when it starts to fall out - my husband will do it. We have clippers in the house because I cut my husband's hair myself, along with our 4 boys.
Bonnie - great idea about the template! I may try that. My brows are pretty dark, so I should be able to trace something.
Sugar77 - good tip about the "shaving" - but will the tiny hair still fall out and get all over everything? I'm not getting a wig - I know I would find that horribly uncomfortable. I've gotten a ton of cute caps and scarves - ordered some and have had friends give me theirs from when they went through this. I know I'll like that much better.
Day 1 after chemo - feeling pretty good. A little dry in the mouth and some minor "intestinal" issues this morning. But nothing major. Hoping you are all doing well.
Kris
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Bonnie — Terrific idea to make a template cutout!
Everyone — Happy Easter!
So excited, I finished radiation of my lumbar spine yesterday! Experience from the hip radiation I did in November and December, side effects, especially fatigue, will continue for several weeks but so will killing cancer cells.
My first choice for a new medical oncologist didn't work out. She's doing so much research now she only takes new patients who fit in one of her clinical trials. My PCP is calling his next first choice for me, partner of the one now restricting to clinical trial patients. It's the medical oncologist who treated PCP's dad's breast cancer.
j
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Thank you Kris. I don't have clippers, just scissors and so I may have to play it by ear, improvise, get creative...
...all the things that I imagine will come in handy when dealing with cancer actually...
Ya, it actually might be easier for me to deal with longer clumps coming out than sneaky little "whiskers" ending up all over the place...
I am very glad you are feeling reasonably good after treatment! Thank God for advances in therapeutics...and much more.
BostonGal...I really need a "real" name! Allie? Something more exotic and fun?
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