Topic: Starting Chemo May 2020

May 2, 2020 08:00PM Angelanotangie wrote:

Does anyone know how to do the Roll Call that some of the other "Starting Chemo..." topics have going? I think it will be helpful for us so that we can keep everyone straight and be as supportive as possible.

Thank you to those of you that are a little further in the process.

May 2, 2020 08:07PM UnrealTarHeel wrote:

Hi, @Angelanotangie: For the "roll call," I think you need to go back and edit your original post (the one that launched this thread) to include a list of everyone here. I can help you gather the info if you need, but you are the only one who can update the post.

May 2, 2020 09:54PM Jettie wrote:

i use these on both hands and feet as couldn't get the gloves, i have extra gel packs that i swap out during chemo, there pretty easy to put on by yourself. I also paint my nails a dark colour too.

https://www.amazon.com/gp/product/B003L4WOKG

May 6, 2020 07:27AM PJAL wrote:

Thank you for starting post. I’m Paula. I begin chemo on 5/14. Angelanotangie, I was also crushed when this treatment was recommended especially since my surgeon told me after path report came back that it was highly unlikely. However, there were tests pending and didn’t receive the full report yet.

My first major surgery. I decided on a skin sparing nipple mastectomy with reconstruction, but due to Covid, the expander would have had to stay in longer so decided on mastectomy without reconstruction for now. I was supposed to stay overnight, but was in and out surgery for me. Very little instruction. No instruction given on exercises. No mention of mastectomy bras, etc. I was grateful that I didn’t have to stay overnight. My husband waited for me in the parking lot.

All hospital stores for mastectomy bras, instruction, etc. closed. I found one place in my area who was kind enough to see me. She’s taking 1 patient per day and saw me right away. It’s privately owned, so had to pay up front since I never received an order/prescription for bras. She gave me good instructions and was knowledgeable about process.

Saw a wig specialist in my area last week. Lot of tips from my sister who shaved her hair due to Lupus induced Alopecia. She directed me to wigs.com and my hair stylist directed me to wigs buy.com. A hair stylist can work with cut.

Had to have Covid test before beginning treatment which was yesterday. I have Echo appointment, blood work and port placement tomorrow. Nervous about port procedure. Anyone had that experience? Placing on my good side near. I was hoping they’d place it on side of mastectomy.

Thanks again for posting. Will look forward to following share.

May 6, 2020 08:13AM PJAL wrote:

Jettie, thank you for the info. Looking into it now.

May 7, 2020 12:30AM Sugar77 wrote:

H Ladies - just jumping over here to say hello from the April 2020 chemo group. You can do this! Also, for those of you who are doing the TC regimen, there is a long-standing thread that I've recently bumped up. Come over and post or take a look through past posts where you'll find a lot of helpful info. https://community.breastcancer.org/forum/69/topics/697783?page=266#idx_7972

All the best and stay hydrated!

May 7, 2020 03:31PM - edited May 7, 2020 04:40PM by KeepingCalm

Hi everyone,

I guess I'm starting us off with my first of fourTC chemo today. And I am focusing on remaining calm! Decided not to cold cap but am icing hands and feet which hopefully will minimize the neuropathy possibility. Hope everyone's doing okay.

PJAL I'm also in Maryland outside of DC. My port placement was more difficult than my mastectomy recovery but that is mostly because they really didn't tell to expect how sore the incisions would be and in the mastectomy I had a very successful multi day nerve block. I'd just suggest clarifying what you can/should take and how often to treat any pain you might have. A week later, it's much less tender and it was easy to start the meds through the port today for chemo so I guess that's the idea - a plus.

May 7, 2020 08:38PM - edited May 7, 2020 08:41PM by Arizonasurvivor42

I will keep my fingers crossed for you Sabrina!

Best of luck today Keeping Calm, let us know how your first treatment goes. I purchased the foot sleeves with the ice packs in them and figured I would stick my nails in a bowl of ice water during the taxotere infusion. Not sure how easy that will be.

Angela, I think the chemotherapy part is the hardest part because of all of the unknowns. I think researching and being prepared is the best way to get through this and it sounds like you are doing just that.

May 8, 2020 01:40AM UnrealTarHeel wrote:

Thanks for doing that, Angela. I actually start on Tuesday, which is 5/12. Port placement tomorrow. Hate the idea that this is actually happening, but ready to get on with it already--and hopefully done with it. I'm in North Carolina.

Suz_eee and KeepingCalm: Sending you good wishes and strength.

May 8, 2020 04:54PM - edited May 13, 2020 08:43PM by ByHisGraceTwice

UnrealTarHeel — popping over from April 2020 Chemo group to share because I'm on the same Herceptin & Taxol plan as you. My first infusion was April 1; second infusion was yesterday, May 7.

April 1 — I was given Kanjinti (without my knowledge or consent.) It's a “biosimilar" to Herceptin.
May 7 — I was given the “real" Herceptin by my new medical oncologist.

Experiences were as different as night and day.

Kanjinti — I was hot — hot like a hot flash. Started about ten minutes after the infusion began. I vomited nonstop the last 2/3 of the 90 minutes. For 12 hours after the infusion, I had a fever of 102.5° (my normal is 97.5°,) chills, nausea, vomiting, diarrhea, severe muscle weakness, and fatigue. The muscle weakness lasted a couple days. The diarrhea and fatigue lasted about a week. Acid reflux, which I never had before, was a problem for a month after the Kanjinti infusion.

Herceptin — side effects started about ten minutes after the 90 minutes infusion ended. They were a stuffy nose, a little bit of asthma wheezing, and tired. Nose progressed to being totally stopped up and stayed that way until I fell asleep. Wheezing got better after a nebulizer breathing treatment. This morning, my nose still is a little stuffy, but the asthma wheezing is gone. I feel rested, so I'm thinking the tiredness was because it was a long day and I didn't sleep well the night before. That's it; I'm beyond thrilled.

I'm going to summarize now what I learned after I found out I wasn't given the real Herceptin. I'm not a scientist or a doctor so I'll edit to add a link with science specific info.

Kanjinti is a biosimilar to Herceptin. Both are monoclonal antibodies ... BUT ... they are not interchangeable like a generic and a brand name pill. A generic pill is made using substantially the same recipe as the original when the patent runs out on the original.

It's different for monoclonal antibodies because they're made from living organisms. Herceptin doesn't have to make public its recipe. The copycats have to guess how it's made.

Herceptin was FDA approved ~15 years ago after clinical trials proved how well it worked on HER2 positive cancer. Kanjinti was approved less than a year ago after the "guess" about how Herceptin is made was close enough to satisfy the FDA. Kanjinti isn't the only Herceptin biosimilar on the market — there are four or five others approved by the FDA in the last several months.

Your body might be ok with one or all the biosimilars. My body isn't. I have allergies to proteins in cow's milk and bay scallops. Herceptin is made with hamster ovary protein. Kanjinti is made with mouse protein. From the extreme difference in how I reacted — my body doesn't like mice protein but's is ok with hamsters. LOL

Your MO must tell you if you're to be given a biosimilar instead of the real Herceptin. If your MO doesn't tell you about them, it's important to ask. Read the medical consent you're signing. The scientific name for Herceptin is Trastuzumab. Kanjinti has “— anns" after Trastuzumab. If your consent says anything other than Herceptin or Trastuzumab ask for it to be explained to you before you sign.

The potential benefit of Herceptin and the risk of heart damage is something I've thought about carefully and decided is worth taking. A physician substituting a biosimilar “knock-off" without disclosing doesn't give a patient the information upon which an informed decision can be made.

🌈

j

Edited to add link to four experts presenting about biosimilars:

https://www.examinebiosimilars.com/?c=bsm-16cfd42a680&gclid=EAIaIQobChMIoObHv6b06AIVgojICh3hjACEEAAYAiAAEgLUsvD_BwE&gclsrc=aw.ds

May 8, 2020 06:04PM PJAL wrote:

ByHisGraceTwice,

Thanks for the information. Im sorry you had that experience. I will be sure to put this on my list of questions. I'm supposed to start Herceptin too with first chemo next week. Because of COVID, I'm not have a chemo tutorial until the day of and I've contacted the nurse to ask questions. She said I could do the icing on hands and feet, but it was too much to explain all my questions over the phone or email.

CCGIrl, I have the same fear with chemo as Angela along with other drugs. Thank you for posting. What anti anxiety meds are you on? Has anyone taken medical marijuana? I just got my prescription card and purchased in pill form. This was one of the questions on my list. I purchased two on the advice of the person helping me in the store. I have 5mg and a 10mg. Combination of both CBD/THC. I've taken the 5mg while recovering from mastectomy. Took the pain away and knocked me out without any lingering side effects. MO said they were ok to take for anxiety, but not sure if I should take the day I start.

Thanks again for posting your thoughts and experiences. I’m quite anxious about it all.

Paula

May 8, 2020 07:03PM - edited May 9, 2020 12:24AM by ByHisGraceTwice

Paula, because my first infusion was such a bad experience, the new MO did a first run yesterday with the real Herceptin all by itself. I cannot describe how happy I am with how it went. Best wishes your experience next week goes just as well

🌈

j

May 8, 2020 08:37PM jelloelloello wrote:

Hi everyone! I'm also jumping in from the April 2020 chemo group : )

I just had my port placement on Monday, even though I had already completed 5 chemo sessions already. The procedure wasn't bad at all for me-- I was under moderate sedation which meant I was awake and kinda tripping in a fun, relaxing way during the surgery, and I didn't feel an ounce of pain. Yay! But about four hours later, after I got home and napped, I felt a lot of pain and discomfort like I was hit by a truck. I guess the pain meds had worn off! So I suggest discussing a plan with your doctor/nurses about what to do at home for pain management. I ended up taking Advil and relying on ice packs. The port site was incredibly tender for a few days and the soreness in my neck was the worst because I felt like I couldn't find a comfortable neutral position to hold my head without feeling like I was straining my neck. However, the most difficult part has been trying to cover it well enough to take a shower (only needed for the first week or until the glue or steri-strips come off). It's hot where I live so my skin is sweaty, sticky and dirty (haha) so the bandages don't stick well and I can't figure it out. Sigh. The pain mostly cleared up by Thursday (yesterday) for session #6, and I went into my chemo appointment feeling pretty ok! The first port access definitely hurt, but more from the pushing/touching of the still bruised and tender site than from the needle itself. My treatment center did not have numbing cream available and I didn't know I was supposed to get my own if I wanted it. Check into that in advance if that's something important to you! Personally, the pain of the port access sucked for a minute but it's temporary and I feel like I could do it again if I had to, though my nurse assured me it won't feel that bad next week. Whew. In general, some members of our April group said it took 2 weeks, or maybe 3, to really feel like themselves again with the port in their bodies.

About medical marijuana: It's legal in California and it's very easy to purchase here (shops still open during the pandemic because they are considered to be essential services, at least in Los Angeles). I hardly every used it before chemotherapy, but now, I rely on edibles, usually gummies, about 3 nights a week to help me sleep-- it relaxes me and takes the edge off of body pains (they're not extreme but distracting enough that it's hard to sleep). (For reference: I'm on a weekly schedule of Taxol, which is not one of the heavy-hitter chemo meds. I usually feel the most fatigue and discomfort on Days 3 & 4.) I also have some CBD oil (no THC to get you high, just the medicinal properties found in the CBD part) but I'm still figuring out the right dosage to get it to work right for me. It's a little more difficult to figure out because there isn't always an immediate effect, so most people rely on CBD oil as a daily regimen for long-term effects. Also, my oncologist is totally on board with any marijuana or CBD usage!

Good luck to all of you who just started chemo or are about to start soon! Before I started, I felt totally overwhelmed about how to prepare for it, especially during the pandemic situation that included quarantine, limited availability of items in stores, and delayed shipping times for online orders. Ugh. And I was trying to research everything on the internet, but there was just too much out there to digest! Like to ice/cold cap or not; should I start fasting or work on a high-protein diet; what kind of supplements should I be taking; do I need to stock up on lotions, nail treatments, wipes, etc. In the end, I realized that I could prepare my bag with the usual stuff for a long plane trip, trust the nurses and staff at the treatment center to take care of me, and just bravely walk in there on the first day and see what it's all about. I could always make adjustments for the next session and learn as I go. In other words, nothing had to be actually decided before my first chemo appointment. Once I cut myself some slack, it helped to ease my anxiety.

Here are my tips for starting chemo:

* Push fluids throughout chemo, but definitely focus on the day before, the day of, and the day after. You'll feel so much better if your body is well-hydrated and you can push out the meds as quickly as possible.

* The first chemo appointment ended up taking all day for many of us, even though the actual infusion time is only a couple hours or so. You might have to do blood draw first and wait for lab results, then there's all sorts of set up, and waiting for your meds to be released, and extra time for your nurses to explain things, and also the infusions are usually run extra slowly at first to gauge your reaction to each new drug (including pre-meds). So bring snacks, layers, blanket, ipad, Nintendo Switch, knitting, crosswords... anything to keep you comfortable and your mind occupied. And have your headphones ready and your favorite person(s) available for you to call or text at any time throughout the day.

* Bring a charger/cord (or two) for your devices, but also an external battery just in case you aren't near an open outlet.

* Don't worry about looking silly, overprepared, underprepared, whatever. No one cares. And if anyone seems to care and gives you judgey eyes, then just remember YOU don't care! Your main job is to take care of yourself and only YOU know how to do that best. And you have cancer, so give yourself a break, haha! So if you want to do the icing hands and feet thing even though no one else at your center does it, go ahead! Go ahead and bring two large bags of stuff because you don't know what you need- who cares? You could also bring nothing really and probably be ok since most centers have plenty of drinks, snacks and blankets for you. Dress however you want to! No rules! (Except for access to your forearms or port area, of course.) You just wanna be comfy and you're gonna throw it in the wash when you get home anyway. Walk in there high as F on marijuana? Sure, go ahead! My nurses say they definitely have some patients who are high on any number of things (anxiety meds, whatevs), and they are happy to take care of you no matter what. You be you, dude.

* Don't be afraid to ask questions! It's ok to admit you don't understand something or forgot something. While the doctors and nurses have all the experience and training to be experts in general, each individual patient is different. YOU are your own best advocate, and since most hospitals/treatment centers aren't allowing visitors right now, you might be the only one there to speak up for yourself. Make them repeat stuff, ask for printout or copies, write it down if you have to. Even though you're just starting and maybe you feel like you don't know anything, you're still ultimately in control of your treatment. And you don't have to worry about annoying them with your questions-- they'll still like you and be nice to you!

GOOD LUCK! We're all thinking of you, cheering for you, commiserating with you, and sharing the same fears, hopes, confusion and laughs. You can do this! We're all doing this. Together. Reach out to this group, or the AWESOME APRIL GROUP (wink), or even feel free to Private Message me or any of your new friends, at any time. :)

love, jess

May 9, 2020 12:12AM KeepingCalm wrote:

Hi everyone,

Sorry for my delay in reporting back! I'd like to say it's because I've been relaxing in bed but instead, the good news I guess, is that all went fine and I've been up and about doing my normal stuff - Covid home schooling, working remotely, laundry etc. I'm finding this to be a strange time, on the one hand you just have to go along with your mostly normal life and on the other hand, having breast cancer is needless to say kind of a big deal! I bounce back and forth between feeling confident in my team and treatment plan and all the stats and worrying about the what ifs over time which I rationally realize is a waste of time.

Port felt much better this week which was about a week out from it being placed, and the MO prescribed numbing cream and then the nurse had me ice it before starting the infusion. So far all of the meds they've prescribed seem to have warded off most side effects (fingers crossed). I iced my hands and feet which felt cold! Decided not to cold cap which I feel in between about - like maybe I should have done it but on the other hand this way my hair loss will be uniform and hopefully temporary. Actually received a baseball cap with hair today from https://www.shopdearmartha.com/ which I think I found on this site and it's works pretty well is actually pretty cute.

Neulasta onpro went off about a 2 hours ago so we'll see how that affects me over the next few days but like others I started Claritin in advance and hope the joint pain won't be too bad. Overall I do feel like I've been hit by something - chemo! - in that I feel a bit draggy but not so much that I can't do what I need to do and my appetite right now is fine. Did notice that my OJ tasted a bit more bland this morning. So good to hear CC Girl's feedback about feeling pretty decent by Day 5.

Hope everyone is doing okay!

May 9, 2020 12:47AM UnrealTarHeel wrote:

@ByHisGraceTwice -- thank you for sharing your experience w/ Kajinti and Taxol. I feel like I've done a fair amount of reading up -- but this is one I haven't encountered yet. As if there isn't enough to be worried about! But so good to know. I've been so freaked out about the Taxol that I hadn't really stopped to think about the Herceptin.

Sharing everyone's anxieties about getting started. It is such a big leap into the unknown--and for many of us, what we do know (from news stories, tv, etc.) isn't very comforting. But here we all are, brave af.

@Jelloellloello -- loved your tips for getting started. You are so right about not worrying and no rules. Plus, I'm pretty sure they've seen it all. I just had my port placed this afternoon and was unprepared for how sore it feels now. Everyone I've encountered tells me how glad they were.to have theirs -- and considering it took two attempts to get an i.v. line put in today, I'll probably be glad, too, eventually. All of the medical folks give their explanations and then ask, "ok?" ("Here's how the port works.... OK?" "It's time to wheel you back, ok?") I just keep telling them that NONE of it is ok, really, but it's just what needs to be done. And it is.

--Judy in NC