Topic: Starting Chemo April 2020

Apr 9, 2020 10:26AM JavaJana wrote:

Hello everyone! I had a VERY long day yesterday, and I think that is more the reason for feeling so wiped out this morning, not just due to the chemo. We live almost 3 hours away from MD Anderson in Houston, and we were gone for 20!!! hours yesterday. And since they have locked down the buildings to visitors, hubby could not hang out in waiting areas, so pretty boring for him lol.

It was scheduled to be a whole day affair anyway, with labs, chest xray, echo, doc visit plus chemo session #1 (approx. 5 hrs- future sessions should be less since I tolerated the slowed down infusions of Perjeta and Herceptin).

The infusion area was running late, so I was pulled in two hours late, and then there was an issue with my port causing yet another 2 hour delay. They wouldn't access my port without someone "upstairs" signing off since it wasn't placed there. Even though that's what the xray was for lol. Annoying. Navigating healthcare is hard enough with rules and policies and communication breakdowns that are all too common.

Anyway, we got started, all infusions went smoothly. Nurses and techs were very attentive - it turns out they provide a light meal which meant I didn't have to eat the protein bar I brought lol. They have private rooms too, which I like.

I received the Neulasta Onpro device on my stomach, so I don't need to go back today for a shot yay! It was a bit more painful than a needle stick, etc. but just for a second. Totally worth it though.

I will say I've had my port accessed twice without numbing cream, and it is no worse than a finger stick for me. So for those of you new to ports, don't worry too much if you don't have it, although you can easily get some from your doc. It is mostly just weird having it in lots of ways once the bruisy healing is over with. It is definitely an alien being inside your body!

I hope y'all have a wonderful day!

Apr 9, 2020 10:52AM JavaJana wrote:

Molly, I'm so sorry for you, we all know quite a bit about how this all feels! This forum is a wealth of information and support, and we are not alone!

Apr 9, 2020 11:47AM wahoomama87 wrote:

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

Apr 9, 2020 12:03PM Moderators wrote:

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

Apr 9, 2020 02:33PM AuthorSpot wrote:

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

Apr 9, 2020 09:00PM hnsquared wrote:

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

Apr 10, 2020 04:35AM Dolly2019 wrote:

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

Apr 10, 2020 08:23AM - edited Apr 10, 2020 08:28AM by BostonGal

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!

Apr 10, 2020 09:08AM Dolly2019 wrote:

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?

Apr 10, 2020 01:23PM AuthorSpot wrote:

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.

Apr 10, 2020 06:48PM wahoomama87 wrote:

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

Apr 11, 2020 12:35AM zee72 wrote:

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

Apr 11, 2020 05:18AM Dolly2019 wrote:

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

Apr 11, 2020 07:33AM BostonGal wrote:

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...

Apr 11, 2020 10:06AM Bon43 wrote:

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