Chemo Starting August 2019
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First AC infusion completed yesterday! It wasn't nearly as bad as I had anticipated. I danced with the "red devil" (what my oncology team calls Adriamyacin) and patiently waited the two hours for the Cytoxan to drip in. Port access went perfectly fine. No complaints. Took a nap when I got home but am not sure if the drugs or the adrenalin crash knocked me out. Enjoyed a delicious dinner brought by a friend and haven't had any nausea. No mouth sores, no sleeping issues, etc.
Today, I feel good. It scares me because I know it can't last! About to take my first Udenyca/Neulasta injection. Going to be with friends at their backyard pool tonight as long as I'm feeling good. Who knows what tomorrow will bring?
Most of all, I'm relieved to have the first infusion behind me. 3 more ACs and then 4 Taxols. The countdown is ON!
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TexKat welcome the group nobody wants to join. You will meet some incredible ladies and men on this forum. All of us chemos are receiving different regimens but are here to support you in any way.
Wonderful about your nausea being kept at bay and that good ole Tylenol helps with the headaches.
I am happy to hear that the MRI and PETs found no other suspect areas.
I am also a fellow Stage III person. There are a few of us who started chemo in August. The Stage III forum is also a terrific resource if you have specific staging related questions as wrll
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HouseofKards congrats on your first infusion and it going really well! To be honest I have found my first cycle to actually be quite good with no SEs that have affected my ability to perform daily duties or impair my ability to exercise. The first four days I was lightheaded but that was pretty much it. I think the first cycle may be the easiest fir some people so enjoy every day!
The first four days I slept amazingly well at night but that was due to the Olazepine that we some MOs up here in Canada are prescribed at night for nausea as it happens to be an amazing sedative as well. My sleep has not been as great since but I am still sleeping and I am day 11 post-first infusion
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I thought I would provide a brief update. Nearly all my hair fell out this past week, and what is left is kinda grim looking. Yesterday, I was just trying to cope with having a visual identity to others as a "sick person". When I glance in the mirror with my scarf on...honestly that is what I look like. That feels weird and annoying on a day when I feel perfectly fine and do not perceive myself as "sick".
I don't really want to wear a hat or scarf, but when I see the subtle reaction of others to my scraggly appearance, I feel like I want to either shield them or protect myself from that "startled look" on their face.
You know what I find about being bald or having a scarf is that I can no longer be anonymous. It makes it hard to just be private or to blend in. I am very uncomfortable with attention, even when it is well-meaning hugs and pats and words of encouragement. So I am having to cope with NOT being able to fly under the radar with my cancer for the next while. I am going wig shopping next week...and caps look pretty okay. It is only day 2 of baldness, so I am sure I will get used to it.
Weds is the next (2 of 4) TC chemo. I am taking a metaphorical deep breath in preparation--both physically and mentally. I am going to try fasting this time; I have my L-glutamine to take and I am checking on the magic mouthwash. Thank you for all these suggestions. I will let you know how it all goes. I appreciate everyone who contributes here.
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@Ezzie, I had exactly the same reaction when my hair fell out (or rather, got scraggly enough that I buzzed the whole mess). Now I feel like I "look like I have cancer", and the strange thing is even with all the chemo side effects, I DON'T "feel like I have cancer" and it's still very strange to remember that yes, I do. I'm comfortable around my friends, but I've been trying to sport my bald head more in public- just being in my front yard or going on a dog walk. I realized the stares or looks of alarm were more a product of my imagination than the real response from people, but I haven't yet tried grocery shopping or anything yet. Oh- and you had asked about mouth sores/pain, and for me they lasted about a week last cycle. This second cycle I iced my mouth better during my taxotere and carboplatin; I held ice chips on my tongue the ENTIRE time, to the point of discomfort/numbness, and the result is my gums and throat are still tender but my tongue has been fine this round! I still did the glutamine swish & swallow heavily the first 5 days. And doubling up from pepcid to prilosec also helped my tummy acidity & indigestion tremendously. I started taking "IBgard" peppermint oil pills (expensive, I may try another brand next) before meals, and a drop of peppermint oil and fennel oil in tea, and all that seems to help the general chemo belly upset, gas and bloating. I've also had less diarrhea this round, but that's probably because they cut my loading dose of Perjeta in half for the maintenance rounds. (Perjeta diarrhea is no joke, ugh).
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Hey Ezzie & everyone !
Wow I can totally relate to allll of this right now. I am finally getting used to my bald head and like to go around the house without a cap or even on my walks outside, but grocery or anything else is a cap. God I had no idea how much a bald head can sweat (thanks Florida) It's really hard to hold the look of a "sick person" when I feel so great considering everything. I think people are way nicer to me though which is cool....
One thing I really hate is that my thumbnails are beginning to change colors and it's subtle, but it's freaking me out. My doc said it's normal of course, but still scary.
Yesterday I flew on an airplane to evacuate from the hurricane! I wore a mask in public and that was another huge scary step. I did a good job cleaning everything and the woman next to me on the plane said she had chemo before and not to worry about what others thought of me. Anyways a plane ride between my 3rd AC treatment is not ideal, but I still feel good now. Does anyone have any good mask recommendations ?
I hope everyone is okay and staying strong. I know how silly it sounds, but ladies we are SO STRONG. I get randomly scared sometimes and just how far I have come so far is amazing, and you are all amazing too.
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Ezzie I started losing my hair last Tuesday. You and I are on the same chemo schedule, round 2 coming on Wednesday. I won't do the scarves, to me they scream "cancer!" My hair is very thin on top but not bad on the sides. I picked up a black baseball type cap, and some caps and wide fabric headbands. I've been mostly working from home, so when I go to the office tomorrow, I'll see how they react.
I'm hoping the fatigue is not so bad this time. My daughter and I have a festival we go to every year and I don't want to miss it. The MO PA is having me cut out the evening dose of steroids in the hope that I can sleep better. Fingers crossed!
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Hi everyone!
Sorry that I don't post much. I have read all of your posts though, so I feel like I'm getting to know you all. Since my first round of TC, earlier in Augus,t produced some extreme nausea days 3-5, we switched things up. My second round was a week ago. For premeds we did steroids (though lower dose than last round), Pepcid though the port, Cinvanti (same as Emend, but though the port), and a oral dose of olanzapine. Post chemo, I continued with Pepcid twice a day, olanzapine (it's the lowest dose, but can double it if I need to) on nights 2-4 and Ativan as needed. There was a significant difference in nausea level this time and although days 3-5 make me feel subhuman, I now feel like I can make it though the next two treatments.
I had my head shaved just a few days before my second treatment (my day 18). I had past the shoulders, very thick curly hair that I usually wore in a ponytail. Starting day 14, it was coming out in sink-fulls. I was more than ready to get rid of it and have to say being almost bald isn't as disturbing as I thought it would be. I have a wig, but have only worn it a few times. I prefer the caps. I'm also very fortunate to work from home. I developed some itchy areas in the back of my head prior to the shave. I thought it was from not washing my hair, but I have reddish bumps that itch all over my scalp now. I put cortisone cream on and switched to baby shampoo over the weekend and it helped some. I have a call into the nurse to see if I'm on the right track. Anyone else have this experience?
I've been experiencing some pounding in my left ear. I have experienced some of this pre-cancer, but I'm going to mention it to the nurse as well. One of my health conditions is microscopic colitis which I manage with diet and meds. Starting last night, the diarrhea became pretty pronounced. This morning I am upping my meds and drinking lots of water. Hopefully, it doesn't linger too long.
On the very good news front, my daughter-in-law is in labor with their first. Planning on meeting this new little one at the end of September or sooner if they feel they need us there. Can't wait!
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I got a message today that my MO has requested approval from my insurance for ALOXI (palonosetron hydrochloride). I'm not sure why.
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Aloxi is for nausea.
May just be loading up the toolbox with multiple options
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Gigibozo- I don't think I've had bumps on my head, although I do still have my hair so I could be wrong. After CT #2 my hair HURT! I've read that the places that hurt are where the hairs fall out and I can believe it because I am shedding all over.
My update for TC#2 is here:
I didn't have any nausea this time which was fantastic. But I had extreme fatigue on days 2 and 3 after treatment. I also had a low fever both days. Not enough to get excited about, but 99 or low 100's. No idea why exactly because my blood counts are very good.
I look like I have all my hair (thank you cold capping), but I am losing a lot on the left front side. I have my hair cut short now, but it is long enough to do a good comb-over on the small bare patches. I'm shedding a bit and trying to limit washing my hair as much as I can stand. I'm happy that the top of my head is retaining a lot of hair- it makes the comb-over easier!
My nails are good, and my hands and feet feel good. I've been chilling hands and feet too- not as cold as the cold cap, but below freezing.
My tongue doesn't feel as burnt this time, but my sense of taste has been impacted. I think I'm tasting about 20-30% of flavors. Enough to taste something, but most foods are pretty dull. I don't have any mouth sores.
No other side effects to report!
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Hello all,
I’m on the hair loss train as well. Right at 2 weeks post my first AC my hair started majorly shedding. And after my shower - oh my word! I don’t want to cut it all off but I’m not sure how much longer I want to keep cleaning up hair. On a positive note I had my second AC today and my doc said my tumor definitely felt smaller. I thought it did too but then I was thinking it was just in my head but I guess not! I’m also less tender there and under my armpit so that’s making me feel better.
Hope you all have a good week and stay safe if you are in the path of the hurricane. I couldn’t imagine having to deal with that on top of chemo - but like in2earth said - we are strong amazing women!
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elc75, that is fantastic about the tumor feeling smaller!!
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@elc75 - How was your second AC infusion compared to the first? I had my first one last Thursday and the next one in a week. They say it's "cumulative," but I'm wondering what that means. Did you feel the same or worse or better after #2? How many do you have total? I have 4 and then Taxol (x4).
Thrilled to hear that your tumor is smaller! It must be awesome to know it's working. I had a mastectomy (with multiple lymph nodes removed) before chemo to remove all traces of cancer, so I don't have any benchmarks. Technically, I was cancer-free before starting chemo, so I just have to hope it's seeking out any microscopic cancer cells and destroying them to prevent recurrence.
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so yesterday was my 2 Ac it was like 2 hours the process was easy no complications but at the night i had leg an abdominal cramps today my hair is shedding
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@HouseOfKards - I’ve heard the cumulative effect thing too but I’m not sure yet. Last time days 3-4 were my worst to I guess I will find out tomorrow. I am not taking Zofran this time as we think it gave me a migraine last time so hopefully that part will be better. I’ve just been pretty tired today but I’m also getting over a cold that my kids gave me so that could have a part in it too! I have 4 AC treatments too so I’m halfway there until I move to T (x12)
Best of luck with your next treatment and I hope your SE’s are minimal. It does feel good to know that this is working and doing what’s its supposed to - makes some of the SE’s a little more bearable.
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I am a day shy of two week mark, and I think my hair is starting.... Hard to know - had it cut short and found a few tiny strands on the pillow.
I am trying not to be anxious for 2 chemo next Thursday. My side effects have been existing but relatively mild, which almost makes me more nervous for next time around.
I am going to splurge and get a silk pillowcase . Has anyone gotten one, and if so what do you think?
Hang in there all of us!
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Flowerkid- I bought satin pillowcases. I think they're ok, nice and smooth. I don't know if I prefer them over the feel of a super high thread count cotton, but if they do the trick I think they're worth it. Right now, I'm not losing a ton of hairs at night- just a few that seem to get on my face!
HouseofKards- I've been assuming that the chemo being cumulative means that you feel worse each time. I am not sure if that is dependent on how our white and red blood cells are doing or if it is something else. I can't say I felt worse on my second chemo, it was just different. The first time I had stomach issues with a little tiredness, the second time I felt exhausted with a low fever for 2 days and no stomach issues.
Hopefully session 3 which is in two weeks will have less side effects, but who knows. I'll be ready for exhaustion this time!
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@Flowerkid I bought a satin pillowcase, but it didn't really make any difference for me personally- any pillow surface felt terrible on my head; it was very prickly-painful amd sensitive during the active hair loss period (the 3rd and 4th week, for me). The only thing that helped was wearing a small soft bamboo "liner cap" at night (it REALLY helped! And it kept stubbly hair from falling out everywhere). It's also great as a soft liner for ball caps and other non-knit hats.
Oh, and update- I've started wearing my bald head out in public, and it's been fine! In fact, i actually got a few compliments (?!?) It actually feels like it looks LESS "cancer-y" than the classic scarves or caps, like maybe it looks intentional rather than hiding something, and it actually looks kind of cool with big hoop earrings. What bothers me more than my head hair is my eyebrows have started to thin a bit (a month after my first chemo), so I've started filling them in a little with a brow pencil.
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HeartShaped- going around bald is my plan too if my hair gets too patchy despite the cold capping! I do hope my eyebrows stay though. I think my face will look weird without them- they're one of my better features!
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ON Target thanks I think I will try the silk.
Heart shaped - thanks I will also look for bamboo cap (Amazon?) I am impressed about you going bald in public . Don't think I have the guts, maybe if I still lived in NY instead of Ohio. Good for you . And by the way, I have the same diagnosis of triple positive and same PCTH.
Re: a few of us talk about/worry about eyebrows. I am intrigued by eyebrow wigs. Pricey yet not that bad in scheme of cancer expenses. Anyone hear of them? Really sounds quite good
I plan to ask st my second chemo next week for better explanation of "cumulative".
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Hi everyone
In my experience going into my 4th AC in a couple days, I haven't really experienced any accumulative side effects. I've been very vigilant to maintain a healthy, whole foods diet with lots of fluids. I take a few different supplements like coq10, vitamin e, reishi mushroom, milk thistle, omega 3, vitamin d, resvertrol, and L glutamine. I walk everyday and take naps as well. I have been really pleased with little side effects during AC considering it's known to be so terrible. I honestly believe it's the healthy food. I also eat very little on the day of chemo. I tried fasting, but instead I just restricted calories. I eat overnight oatmeal with berries before blood work and a small turkey wrap inbetween before the influsion. I'm drinking so many fluids at that point I have to pee every 20 minutes, but I think that really helps. I also do a quick coffee enema before leaving the house and then one the day after treatment. Hope this helps someone
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As far as TCHP chemo, my oncologist did say in his experience there was a cumulative effect in terms of side effects (meaning SE's can worsen as cycles stack up), that typically present themselves in the 5th and 6th cycle. A survivor I know who did TCH told me that for her, this manifested in G.I. problems that started off similar to what I'm now experiencing, but basically turned into colitis by her final cycles and was bad enough to require hospitalization. With this in mind, and because I was afraid of chemo side effects in general, my MO prescribed me 4 instead of the usual 6 neoadjuvant TCHP cycles. His words: "The first 4 are the cake, and the last 2 are the icing, in terms of benefit, and the last 2 tend to have the bulk of the side effects" (and he's the president of my state's board of medical oncology)
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I'm so sorry I've gotten a little behind on posting.
TexKat- Welcome. hope you're feeling ok.
HouseofKards - Glad #1 went well. Hope you're still feeling good.
Heartshapedbox - Glad to see someone else rocking the bald look. I find people don't seem bothered by it at all. I vamp up my makeup and lipstick and dangling earrings a little too, to keep some femininity. I still haven't tried the ice chips. I basically sleep through the whole infusion. I did wake up for the final Carboplatin, and I sucked on hard candy which helped a little with the metallic taste. But I still have that burnt tongue feeling today.
in2earth - glad you're safe from the hurricane. Are you back home now? I am waiting for my nails to turn, but so far so good. I keep really dark polish on them at all times. Change it out about every 2 weeks. I put 2 coats of OPI Nail envy on them, then add the 2 coats of dark polish and a clear coat. As my nails grow a little I just add more dark polish to fill in the nail bed. With Taxanes especially you're nail beds are highly sensitive to light.
GoMama-hoping you can make it to your festival.
OnTarget - Glad to hear you didn't have nausea this round. The taste thing just kills me. It makes it so hard to eat. And I feel like that side effect lasts the longest.
elec75 - Woohoo for smaller tumor! That's great news.
Flowerkid - I have the satin pillowcase, and I like it. It's soft against my buzzed head. It also helped me in the transition when I was losing hair. I was attempting to not wash it so it would last longer and the satin prevented a lot of the kinks my hair gets otherwise. When I asked about cummulative, they stressed to me the neutropenia, fatigue, and possible neuropathy. Most of the other stuff would be similar each round in regards to GI issues, taste changes, heartburn, nausea. I don't have Perjeta though, which apparently causes some major diarrhea.
I buzzed my hair last weekend. My husband did it for me, and my 2 young sons watched and took pictures. They told me I still looked pretty. That staved off any tears I might have had. I've been switching it up between scarves, wig, and no covering for a few days, trying to determine what I am most comfortable with. It changes depending on where I go. But everyone tells me I rock the buzz head look, so I go with that most often. I just completed 2nd infusion yesterday. So far so good, but the steroids help. I'm sure after Neulasta injects later, I'll feel like hell. I asked about other ways to deal with the Neulasta pain, but they seemed to brush me off and say to keep taking Tylenol and Claritin.
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Well the hair is shedding like crazy! Had my sister cut it from shoulder length to above the chin length about a week ago. The next step is to shave it completely. 2nd treatment is Monday and hoping that all will go as smoothly as before, with Very little side effects. The worse was a little gastro issues and a nasty coating on the tongue. Wishing and praying for you all the best as we travel this bumpy road together!
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Had my second treatment Wednesday. Got some bad news today. I called MO about a rash, she wanted to see it asap. I'm allergic to Taxotere. She's going to look into options, but the two that are most obvious suck. She could increase the steroids, but that could cause diabetes. If she changes my regimen completely, I have to start all over. The first two rounds won't count.
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Go mama, how disappointing!
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GoMama- oh no! Did you have a rash after your first infusion as well? I know they often do IV benedryl and other meds for chemo allergy, does your team feel the rash signifies too big an allergy risk to even attempt continuing the taxotere?
In2Earth- I hope you traveled safely and are able to be home soon! (If not there already). Good job on your hydration and healthy living- I think that does make such a difference!
AutumnGal- I'm perplexed they would shrug off your neulasta pain and not even discuss options as simple as an add'l (non narcotic, even) prescription! How frustrating! I don't think that people who haven't experienced it can comprehend how (literally) bone-deep painful it is. The hydroxyzine made a WORLD of difference for my pain, but unless I'd researched it myself and asked, my MO wouldn't have suggested it. (& to answer your old ? yes I got the bamboo caps on Amazon, where I do a LOT of shopping these days now that I'm trying to avoid the germ-ridden masses...)
https://www.amazon.com/dp/B01MQH16S2?ref=ppx_pop_m...
It's so great to hear that many of you are sailing through chemo with minimal side effects so far! Good job! It's so fascinating (& an important reminder in general) how DIFFERENT people's experiences can be, even on similar chemo. You (we) are all so strong and resilient!
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GoMama- what does a rash look like? Is it all over or only in a certain spot? I only ask because I got a weird, thin red patch that basically goes from where I got my chemo infusion to the bend in my elbow. It came on about 4-5 days after getting taxotere so I can't imagine it is related, it is just weird in placement. I feel like if I ask the nurse about this tiny patch of red that came on well after my transfusion I'll get some eye rolling.
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on target at first I thought it was razor burn on my legs. Then I realized I haven't shaved in a week. I also had brownish blotches up my arms and my face was flushed. Within a few hours, the red leg dots got bigger and ran together.
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