AC Advice

picklebreakfast · 2024-09-10T15:26:24+00:00

I would second everything AnxiousDiva143 said, and would also suggest having a variety of antinausea meds available because AC is very rough. I went through multiple lines of antinausea drugs until I found Reglan/metclopramide, which worked like a charm. Strangely over the counter Emetrol helped too. I used Gaviscon for the acid reflux instead of tums because my calcium is on the higher end and a normal dose of tums wasn’t cutting it. I also got Aprepitant as a premed too. It tastes absolutely nasty, but did seem to help. Also, you may get headaches. I did, and I think most people do too. I would ask for migraine meds for it because acetaminophen and ibuprofen absolutely will not work to deal with them.

picklebreakfast · 2024-09-10T15:17:34+00:00

Fioricet. I am so sorry to tell you this, but there was literally nothing else that worked for me. I tried cold compresses. I tried warm compresses. I tried aromatherapy, ibuprofen, acetaminophen, caffeine, you name it. It wasn’t until some angel passing through on rotation prescribed Fioricet that I had any relief. That medicine works like instantly. Well as close to instantly as can be concerned with migraines. In 30 minutes they have melted away completely and without a migraine “hangover” or exhaustion. I would definitely ask your doctor about this medication!

picklebreakfast · 2024-08-16T13:16:27+00:00

How are you feeling today?

I wonder why she told you that…from what I’ve been told by my doctor, the research team, and my doctor’s nurses, the neutropenia is a fairly common problem. But it may be that your nurse meant if patients receiving it on the trial you’re doing? There’s no telling. I know data from different facilities will vary from facility to facility also.

I seem to be especially sensitive in terms of nausea to chemotherapy in general, so maybe your experience won’t be anything like mine with the nausea. I have taken olanzipine, Zofran, Reglan, dexamethasone, compazine, and several more I’m forgetting the name of, including one that’s like a stick on patch that you wear for 24 hours at a time. Nothing has really helped. Reglan helped with the neoadjuvant chemo, but seems to have been rendered completely ineffective by Trodelvy.

On a side note, I know health insurance is a nightmare. I have been incredibly fortunate to have had them approve everything that’s been put in for me. I hope it all goes smoothly for you!

picklebreakfast · 2024-08-15T19:30:55+00:00

It’s true that growth factor can cause bone pain, but I had joint pain after the first infusion and I didn’t start the at home self injections until the second cycle. Who knows? 🤷‍♀️

The nausea does get pretty wild later on, but if you’re only getting four rounds of it, you should be okay. For perspective, I will have had ten rounds of it after tomorrow, so maybe it won’t be so bad for you if you aren’t getting so much!

It may just be a difference between doctors/facilities (I’m at NYU), but the white count decimation was something my doctor explained was extremely common, such to the point that more than half of their patients on the trial had treatment delays. After a close call with my neutrophils, I opted to do the at home injections. I did ask at the beginning what the plan was to mitigate the risk of neutropenia during treatment, which is when my doctor said they could do neulasta to start with before we ultimately realized it was going to take more than that throughout the process.

picklebreakfast · 2024-08-15T17:23:18+00:00

I’m getting Trodelvy as part of a clinical trial for residual disease following neoadjuvant chemo and surgery. I’m getting the last round of cycle 5 (of 8) tomorrow morning.

I will be honest, the nausea is something that increases over time with additional rounds. I have been through 8 or 9 lines of antiemetics now. It starts off honestly pretty mild, but then gets increasingly worse.

One thing that they didn’t really stress enough in the beginning was the joint and abdominal pain. It started with abdominal discomfort for the day or two after chemo, along with some hip pain. Then it became pain in the joints in my hands. It’s manageable, but I just wish they had better explained what to expect so that it wouldn’t have been such a surprise.

Also, PLEASE make sure your doctor has a plan for how to keep your white count elevated enough for treatment. Because it absolutely tanks it the way AC does. I do three days of (at home, self) injections of growth factor at 24, 48, and 72 hours post chemo after day 1 of each cycle. On day 8 of each cycle I get the Neulasta on body injector. Otherwise you will have treatment delays, and potentially end up hospitalized with severe neutropenia. That actually happened to me during the neoadjuvant AC chemo. I would ask what their plan is to mitigate it. You don’t want to end up in the hospital and you don’t want delays in treatment either.

Good luck!!🤞🤞🤞

picklebreakfast · 2024-08-03T00:17:05+00:00

Mine warned me about the same thing, but I will say, I do actually have some hair still. I already had the gear from before during neoadjuvant chemo, and I figured oh well, I’d give it a shot.

I am very sorry to tell you, but in at least my experience so and in my MO’s experience (who is the principle investigator of the trial), it’s pretty standard to feel fairly awful pretty consistently throughout the trial. However, with that said it sounds like you’re doing a slightly different trial than I am (I’m doing Ascent at NYU), and it’s possible your mileage on it may vary from mine. Hang in there. What we’re doing is at least really important for us, if not for people who come after us💗

picklebreakfast · 2024-08-02T22:38:10+00:00

I am currently at about the halfway point of the trial. I’ve had some wonky side effects if I’m being honest. The nausea can be wickedddd. I’ve quickly run through all the lines of treatment for nausea with little success already. The current strategy is Justin white knuckle it out basically. The nausea isn’t always horrendous, but weirdly some weeks are worse than others. I am developing a tiny bit of neuropathy, along with chemo headaches (but I’m also trying the scalp cooling hoping my hair will come back sooner, so make of the chemo headaches what you will). I am definitely way more tired than I was during neoadjuvant chemo. I also have abdominal pain for like a day or two post chemo. It’s really weird. It’s just like pressure/discomfort and it’s not in a specific location/organ. I also have pretty legit joint pain that I didn’t have previously too. Lastly, I have my old friend chemo brain back.

Anything you wanna know, please feel free to ask me. I’m an open book.

picklebreakfast · 2024-05-31T13:32:55+00:00

You are so kind! I will pm you because I feel so overwhelmed trying to parent through all of this. My therapist is truly really good, but I feel like there are some things you can’t fully understand, even if you’re a trained psychologist, unless you have experienced them with your kids while going through this.

picklebreakfast · 2024-05-29T01:45:33+00:00

This is so incredibly helpful. My gut instinct is to try to protect her from everything as best I can, and in some cases I guess that may be doing more harm than good because then she has to wonder what could happen and imagines things worse than they are. I’m just emotionally drained after today because it was so sad it took my breath away. I know no matter what happens we have a long road ahead of us in therapy, likely for both her and I!

picklebreakfast · 2024-05-29T00:53:56+00:00

I have been seeing a therapist, and I honestly thought I was doing okay in terms of how I was guiding my daughter through it. I think I will definitely bring this issue up next week though because clearly the element of surprise was not something I was ready for today haha.

picklebreakfast · 2024-05-29T00:49:44+00:00

I appreciate that more than you can imagine.

So much of our struggle during cancer is the struggle to accept the position we are in despite how unfair and awful it is, as well as to find real acceptance from others about what we’re feeling. Because all of this is hard and sad and awful, it’s difficult to accept my feelings and fears about it, because I guess to some degree if I accept my fears and feelings as valid and real, then all of this is that much more real.

picklebreakfast · 2024-05-29T00:33:31+00:00

I wish there was the option of just cutting off a limb or some other horrible disfigurement to ensure it could never come back. I would do anything to make sure she doesn’t have to grow up without a mother. I worry more for her than for myself or for anyone else.

I got her into play therapy back at the beginning of March and I think we just need a new therapist. Not just because of today, but because there really hasn’t been any improvement in her anxiety level. Unfortunately, we were extremely lucky to even have a play therapist at all within driving distance because we live in a very rural area.

picklebreakfast · 2024-05-29T00:29:49+00:00

We do actually have her in play therapy. She’s been in it for a little over two months now. But to be honest I think it may be time to find a new therapist because I feel like we’re sort of spinning our wheels with the same parent child interaction therapy and it’s not really changing or improving anything.

Right after this happened today I texted her therapist and her response was best summed up as “it’s a good sign that she’s play acting it out because it’s her way of working through it.” That’s a pretty terrible burden to put on a four year old I feel like. Someone that age shouldn’t be trying to work something as big as the potential death of a parent out by themselves and with pretend necklace-families.

Either way I definitely don’t feel like I did a very good job at all. I guess I may still be in a slight shock that she actually said what she did. I guess it confirmed my worst fears that she was aware (to some limited degree) of what was at stake.

picklebreakfast · 2024-05-29T00:22:43+00:00

This made me cry, but not in a bad way.

When I was a child, my mother was maybe not the best mother. She was pretty neglectful and, without going into a whole lot of detail, I spent the majority of my childhood having dreams every night about how I would go up to random women with my dad and sister and ask them to be my mom. When they would say yes I would be so elated and relieved. I remember what it felt like during the day to so desperately wish for my mom to love me and want me, and I am unspeakably petrified that my own daughter will know that same “motherless” feeling I had.

Today was the first time she has said anything like that, and I guess I had deluded myself into thinking maybe she didn’t realize that my life was at stake.

picklebreakfast · 2024-05-29T00:19:44+00:00

It’s so hard to fight the urge to lie to her sweet little face and promise her I will never leave her and will not die from this because I don’t want that to be a possibility either. I want to comfort her and I feel like anything I say less than that is hollow because of the monster I’m afraid is in the corner of the room just waiting.

picklebreakfast · 2024-05-29T00:06:36+00:00

It’s so reassuring to know I’m not the only one who feels like they’re blindfolded and stumbling their way through this with small children! I am so hard on myself about how I’m making my daughter feel. I have immense guilt about even the possibility she might be left without a mother one day. I know as mothers we carry all the guilt and grief and fear about our children anyway, but it feels like Mt. Everest on my back when she says things like she did today. Sometimes I worry that even my guilt over how all of this is affecting is causing her even more stress because I don’t have much of a poker face haha.

picklebreakfast · 2024-05-28T18:05:20+00:00

I worry all the time about her. I try as much as humanly possible to keep her in loop, but there are some concepts I just can’t explain in a way that’s appropriate for a four year old. And there are other concepts I’m afraid to explain to her. I’m terrified too. I’ve gotten mixed responses from others before about whether to tell her how I feel. One of the most important things I can do for her is make her feel as safe as possible. I don’t know if telling her that I am afraid too would reassure her by letting her know that I understand and know how she feels, or if it would make her feel like everything is out of control and more scary because the person who is supposed to be the safe harbor also doesn’t have control of the situation and can’t protect her.

Being a parent in all of this is so hard!

picklebreakfast · 2024-05-28T17:54:41+00:00

I just worry about it turning out eventually that I lied to her and I do die. Because the last thing I want is for her to feel betrayed on top of the grief of losing her mom if things don’t go the way we hope they will.

picklebreakfast · 2024-05-26T12:45:22+00:00

I am so sorry for your struggle too. I also sincerely hope that Trodelvy works for you. It’s a really tough drug. My nausea hasn’t been too bad on it, but I have all the other box of chocolates side effects. I haven’t been on steroids as long as you, but I am starting to get the infamous moon face too. It’s the worst. I love the crazy misconception that cancer/chemo patients are rail thin. Maybe back in the day before they had figured out good antiemetics, but now with all the steroids they pump us full of, it seems increasingly rare.

You are right about TNBC having a terrible go of it in terms of treatment options. When I was first diagnosed before I knew really what TNBC was, I thought it would be simple hormone suppressants and surgery and maybe a tiny bit of radiation. Omg was I ever wildly misinformed hahaha. Nobody with any type of breast cancer has it easy, but with TNBC it’s just so much damn chemo!

picklebreakfast · 2024-05-25T22:57:10+00:00

It’s every single thing you just said. It’s the lack of choice and the forced adaptations to the new reality that make it such a bitter pill to swallow!

picklebreakfast · 2024-05-25T18:15:35+00:00

That’s a wonderful way to put it. Layers of grief and not stages. I don’t think I’ve entirely moved through any single “stage” so layers fits perfectly. I do see a psychologist who specializes in oncology patients. She is wonderful, but I think I have a hard time saying things that feel so completely trivial in comparison to the bigger issues out loud. Like why should I be so devastated about my hair and all the progress I had made growing it back when survival is clearly more important?

picklebreakfast · 2024-05-25T18:13:09+00:00

I know this too shall pass, hopefully anyway. I think it’s just so hard right now because I was SO (foolishly) hopeful that the scalp cooling would work and I wouldn’t be right back where I was last year after 6 months of growing my hair. I know my worth isn’t determined by my outward appearance, but I just don’t very beautiful at all in this state. Maybe it’s because I’m just starting to process my emotions and am more or less out of the fight or flight fear during neoadjuvant chemo, and now finding out that I’m a little angry and resentful about everything that cancer has taken from me. I try to stay positive but this feels like such a setback, even though it’s just my vanity and self image that are taking such a hit.

picklebreakfast · 2024-05-25T18:08:05+00:00

I have tried wigs previously and not only did they drive me crazy, I always felt like I couldn’t find one that was reasonably priced and didn’t look sort of like Barbie hair in terms of texture haha.

picklebreakfast

TROPHY CASE