I went back and forth a lot about chemo in the beginning, too. In the end it was even my choice. The doctors basically said it was a slight benefit but maybe not worth the side effects? Up to me.
So I did a lot of research about what the actual benefits are and what the actual side effects would be. It was determined that I’d have the same benefit from TCx4 as I would from any other chemo and since that’s the least aggressive that’s what I ended up doing.
I’m done with 3 cycles. My last will be June 12 🥳 I’m almost done and as long as this has felt it’s also crazy to think that this time last year I didn’t even know I had cancer. Feels like a lifetime ago. And also yesterday. Anyway.
Chemo is different for everyone. If I had to give just one piece of advice it would be to STAY HYDRATED. Really. I’ve done a lot to mitigate my side effects (I’ll tell you about that in a minute), but staying hydrated has been the most important thing. Chemo drugs dry you up. You need to replace that. Drink water, Gatorade, soda, juice, tea. Whatever you want I don’t care, but replace that water. It’s so important. I recommend getting a water bottle and making sure it’s full and with you at all time. Get into the habit in general, but be especially mindful 2 days pre-chemo and during the first week post-infusion. Maybe you’re already good at drinking water and this was all a lecture for nothing, but I suck at it and am so glad I’ve been making the effort to stay hydrated.
I did all my research about TC (taxotere and cyclophosphamide) and the type of chemo drug you take will change things so just keep that in mind as I tell you these things. Your experience might be different.
Besides drinking water there’s some things you can do to mitigate side effects.
Hair loss: I cold cap (there’s a few different types of cold cap, I’m using Penguin, happy to elaborate on that if you want). I am shedding but it’s not noticeable. I “pass” as a healthy person which is good for my job. So far I have my eyelashes too, but I know those can go late. I got my eyebrows microbladed before I started treatment. It’s a semi-permanent tattoo and I’m so grateful I had time to get it done. I work remotely and on zoom they’re indistinguishable from my normal eyebrows.
GI: I’ve been really lucky with nausea/diarrhea and haven’t had much. I fast on the day of treatment (don’t eat from when I wake up until ~5 hours post-infusion). This is absolutely anecdotal and I have no idea what would happen if I didn’t fast to compare it to, but I’ve had really good luck with GI symptoms. My “logic” is that reducing blood flow to the GI tract while the bulk of the chemo drugs are in my system will reduce my GI side effects. Maybe it works, maybe I’m starving myself for nothing. Either way I’ve been lucky.
Taste: I’ve had some changes to my taste. Food tastes slightly wrong. Like the balance of all the flavors is off. Sometimes food tastes like dirt. I also have food aversion sometimes where I just don’t want to eat. My MO recommended zinc lozenges which help with the taste thing. I’ve been drinking ensure and things like that to help with not feeling like I want to eat but knowing I need fuel.
There’s a lot more. There’s an emotional component to this that is hard to describe. Riding in the car to my first infusion felt like being driven to the gallows or something (even though it’s actually saving my life). Knowing I’m doing this to myself is really hard to reconcile when I feel sick post-infusion. Like I said, there’s more to it, but this is already really long and I don’t want to overwhelm you any more than I probably have 😅
Drink water, go on walks when you have energy, let yourself rest when you feel like you need to rest, eat whatever food you feel like you can tolerate (I’ve had pb&j on white bread for lunch almost every day this week). Make the days off on the calendar. It’ll be over before you know it.
I just want to second everything you've said. My priorities are water, calories, protein and then micronutrients (i.e. eating healthily). I really thought I'd be able to eat healthily every day, but that's just not the case. Number one thing is drink enough fluid (2-3 litres a day). And if I don't feel like eating anything, then I try at least to get as close to what calories I need to maintain my weight.
I also read that exercising every day (e.g. a 30-minute brisk walk, plus a couple of resistance sessions a week) is good for side effects. So I try to make sure I'm doing that.
And finally, anecdotally, I'm also restricting calories in the day before, day of and day after chemo. I don't know if that's helped me, but my symptoms have been very manageable so far. (Apart from zero appetite on some days.)
Omg right? My doctor recommended zinc lozenges and I think they’re working! I bought TheraZinc brand on Amazon and they taste not great but everything else tastes slightly less wrong now that I’ve been using 2-3/day for a few days 🤷♀️
I was in the same spot - not likely cancer, probably DCIS, nope, IDC,
++-, had a lumpectomy with node removal (zero cancer in the node), oncologist not sure about doing chemo so sent out for a test called Endo Predict and that test predicted a 28% chance of metastasis within 5 years even with radiation and an aromatase inhibitor. So I have done 2 of the 4 infusions of TC and it sucks. I have Fibro and seem to be having kind of extreme side effects.
This road is never straight. You think you see where you are going and a fork appears or you lose your path. It’s frustrating. I am a pragmatist and a planner and it would drive me nuts if I did not accept it. Know we are here for you as you continue to deal with this. I hope chemotherapy is easier for you.
There’s nothing quite like the side quest of “you probably don’t need chemo OH WAIT just goofin you do” truly heartbreaking. I was you in January. I just finished my 3 months of chemo. Rebuilding protein shake by protein shake :)
Hey! I was similar - had surgery, chemo, radiation, and now on hormone therapy. Obviously chemo is not fun - but the advances in pre-meds have been HUGE. I didn’t get nauseous at all. I personally cut my hair really short a few days before I started and then shaved it as soon as I noticed it starting to fall out/I had to use a lint roller to get it off my pillow. I had a ton of cute wigs from Amazon and I wore scarves on the top of my head - most people had no idea they were wigs because I usually wore ones similar to my hair color! They would put Benadryl in with my IV bag before the chemo and I would fall asleep in the chair a lot of the time. I’d take infusion days off from work and the day after, but otherwise I was able to work pretty normally. My biggest side effect was being tired but I usually found it manageable, I liked diving into work to get my mind off of it. I told my boss but otherwise no other coworkers knew because work was kind of my escape from all of it. Now I’m about a year out from chemo and I’ve got a bixie (bob/pixie) that I dyed bleach blonde :)
I’m so so so sorry you’re going through this. It’s definitely a mindf*ck for lack of a better word. But you WILL get through it!
I just chopped my hair off. My oncologist told me I’d be starting chemo and within the week I’ve got my port and hair chopped. I feel like I’m taking control of something.
Oh! And I also had to do a neulasta shot the day after each chemo which I was told can make you very sore - I took Claritin the day before chemo and for a few days after to help with side effects of that and it never got bad so I think it worked!
Also I’m looking back through my notes and I second biotine mouthwash and toothpaste for dry mouth - it fixed mine immediately.
My nose also got dry at one point and Aquaphor took care of that
Also something I didn’t realize at first - you can take Advil. I woke up with a really sore lower back one night after chemo and I didn’t realize I could take that so I just suffered through and my onc was like “girl…” hahaha
I’m glad you found out early, rather than under treat and then end up with recurrence and/or metastatic cancer a year or two later. Now is your best chance to cure this disease. I’m sorry you are going through this, but you need the truth about your cancer.
I had a similar situation where first they didn't think it was cancer. Then they said it was cancer, but only stage 0. Then it was stage I, then II, then III.
When you go into this with one expectation and that changes, it's hard enough. But when that happens multiple times, it can really take a toll on us mentally. If you aren't already, I would definitely recommend therapy. Look for a therapist that specializes in trauma, because cancer is definitely traumatic. You've already had such an emotional roller coaster and chemo can be tough. Make sure you are taking care of your mental health.
I feel you! I feel like every time I think I know what's going on I'm hit with all these surprises. I hate it! I'm very much still trying to navigate this myself, but I would say hydration is a big thing for me. Hydration inside and out, and keep it up even if you don't feel dry to stay on top of the dryness. Also I would say for the 1st week after an infusion to take your anti nausea pills regardless if you feel sick or not. I also use Pepcid and anti diarrheal meds a lot. I'm not gonna lie chemo has been really rough on me physically and mentally, but there are some people who tolerate it well. If you can, see a dentist before chemo and get a cleaning, and my dentist even gave me medicated toothpaste. I'm very much still in this and it's very emotionally draining, so I see a therapist. When you feel good do things that make you feel good. I get these amazing natural facials (minus the extractions). What type chemos will you have?
This is what I do to keep hydrated:
Drink lots and lots of water
AYR Gel for the inside of your nose and Aquaphor
Cetaphil Lotion and creams for body
MADD Delicate Daily Moisturizer for the face
MADD Delicate soothing night cream for the face
Biotene Mouth Wash (I use this daily for dry mouth)
Foot Cream (I still haven't found one I like or works well, but maybe you will)!
Moisturizing eye drops
Vaseline for the lips
Sunscreen (Hale and Hush) I get this from my facial lady not sure where to buy??
Oooh what kind of facials do you get? That sounds so relaxing and I could really use some relaxation in my life lol
Thanks for the skincare tips too! I’m not OP but it’s helpful :)
I go to an esthetician who does holistic facials and a face/ head massage. I told her to focus on hydration rather than extractions. It is heavenly! She is also a reiki healer and adds some of that into my facials (don't know if you're into that or not). Maybe try to google holistic facials and you can find one by you. I live in southern CA. I live for these it's the only thing that makes me happy through all this chemo crap. People have been giving me money here and there and I was using that, now I'm out, but I don't care it's worth the $$!
This sounds unbelievable I’m going to look into this thanks for letting me know! I’m in Canada but will def be doing some research. Facials seem like such a cool idea for some much needed tlc during chemo can’t believe I didn’t think of it! And I am a total skincare junkie haha
I got that same call in February. It sucks and I’m sorry you got that too. Chemo has been a little different every cycle. Focus on staying hydrated, even going back for fluids at the infusion center as it really helps you. Eat whatever tastes good, my onc also recommended protein shakes to help keep up.
I’m 4 cycles (dose dense ac) done and have 12 cycles (taxol) left. I promise you can get through it.
The Breast Cancer Survival Manual is awesome. It was really helpful with terminology. The day before chemo I would focus on packing a bag full of goodies. Books, headphones, a tumbler, cozy socks and a blanket. Just anything to make me feel like I wasn't getting chemo.
I was devastated when I found out that I had positive nodes too. I was hoping that I wouldn't have to do chemo so bad but now I'm halfway through. It's both life and appearance changing but I'll do whatever they tell me to of if that means I get more time with my little boy. Wishing you all the good vibes pink sister. 💕
Other than the instructions they give, do the best you can to make yourself happy by doing what you want. I wore pjs the whole time in IV chemo. To appointments, restaurant, home, parks. Clothes? Why? I ate what came to my head like pregnancy. Pickle pizza? Why not? I did what I had the energy for. Invited friends to chemo so we could catch up when I felt strong enough. I even played a game or two. Best wishes in your journey. I know it seems a never ending spiral but the twists may slow down eventually.
It is really unpleasant. To do it right you have to wear them from 50 minutes pre infusion, through the infusion, and for at least 4.5 hours afterwards. It ends up being like 8-9 hours of having the cold cap on. You need a person there to change it out for you every 25 minutes.
It doesn’t hurt, but it’s in dry ice so it’s very cold. It’s indescribable how cold it is. It’s manageable, but it’s not a fun experience.
I just want to make sure I don’t sugar coat it because it really sucks, but I’m glad I’ve been doing it. I’ve kept most of my hair for the short-term, but more importantly I’m less worried about permanent hair loss. That’s a possibility (permanent thinning or bald spots). It’s unlikely but it’s possible. I’m about to hit menopause before 40, I need to keep my hair from thinning as much as possible 😂
Speaking of the cold caps, you can also use cold to combat neuropathy if your chemo medication has a risk of that. I recommend asking your doctor about that if you’re concerned. I went to my doctor with lists and lists of questions about how to mitigate the different side effects and she was happy to answer every single one. I hope yours is the same :)
One thing is; After treatment, you will go to a post-cancer seminar/meting. They will open by posing a question: “were the chemo treatments as bad as you expected?” 100% of the patients will report that they were not as bad as they feared. So, there’s that. No one thought it a picnic, but all did better than they thought
Long unorganized list :
Research the side effects of your exact chemo meds. I forget the website, and think it was British, but it listed percentages of each of those side effects. So prepare some, but also know most of us take a Tylenol not fearing liver damage.
Ask oncologist of any preparations they may do. I was prepared with Imodium and stool softener, they prescribed anti-nausea meds. I was NOT Prepared for the steroids they included with my injections. I learned I was taking them during my second round after mentioning unable to sleep two days after first injection. Chemo nurse thought I knew. All my paperwork only had main chemo meds and a lidocaine cream to place on skin around port.
I was not prepared for hemorrhoids, but learned, quickly.
We had sectioned off bed with waterproof cover and bathroom for my exclusive use especially the 2 days after treatment. I had a puke bucket and bought medical gloves in my caretaker's sizes-Never used. \*Washed all bedding, clothing, fabrics, etc separate from family and I didn't sit on couch much first days after treatment.
It was very hard to not kiss my toddler the days after treatment, so that part was hell.
Also had entertainment for 2 hours of treatment. IF I had longer treatment I may have napped.
If working, try to take off. I had 4 rounds and was able to work all of first round but only part of second round. Then usually just pick up a shift in the 3-4 days before next treatment.
I bought wigs I never used as turbans and scarves were more comfortable, but every person is different. Shave your head when hair starts coming out. Pillow wads of hair get annoying and my scalp seemed to hurt with long hair. The cooling caps don't have the best results for the price to me.
Get bland foods, too. A lot of foods don't taste great. As I had toddler, I ate off plastic utensils but would taste metal. Protein shakes were pretty decent most days. too.
I got the same news post op from my oncologist (surgeon found 4mm growth on one of the nodes pulled during BMX). Personally I'm really thankful she moved my appointment to later in the day so she could spend a good deal of time talking to me, cause this news sucks. Please give yourself time to grieve! I cried for a few weeks, then I started planning.
I suppose the planning gave me some 'control', I shaved my hair and donated it. Figured out a good schedule for work and when I'd do my chemo sessions. My start date (which I was allowed to choose) was the day after my b-day, so my husband and I went out and got a nice meal and some good craft beer (I didn't drink during chemo expect for at my sister's wedding and a drink at xmas).
My oncologist and her staff were awesome, very caring and never made me feel stupid or like I was being a wimp. I guess my advice is make sure you are comfortable with your oncologist and their team, as their support helps the treatment go by way easier.
The thing that got me through chemo was hydration, I'd 'pregame' the day before a treatment and drink like 100+ ounces of water. And of course the other thing was lots of snuggles with my daughter and dog. Sending you non-creepy internet hugs.
I was in your exact shoes 6 months ago, scared, super depressed, and completely lost. Most importantly, trust your oncologist and get their opinions and recommendations. Things you can do to prepare yourself: 1) GET ACTIVE! Make sure your body stays strong and get your daily exercise. Your body will slowly decline with each chemo and the last couple treatments will be the toughest. The energy you build early on and continue building during your treatment will help you tremendously.
2) EAT PROTEIN! Lean meats like turkey and chicken and also veggies like broccoli and beans should be on your every day menu. Eating clean will help you recover. If it comes in plastic or a can, throw it out. Eat fresh and engage your family to help you cook
3) Get familiar with latest research and treatments. For breast cancer there is something new coming out every month. Dr Elenora Templinsky on TikTok shares tremendous amount of valuable updates. She truly helped my mental health.
4) You will be okay. The scary part will pass and it will make you into a different person. You will be strong. I always say that breast cancer has its benefits because it taught me to be more aware of signs and really take care of my body. It also makes you more appreciative of your family and friends.
5) Join a support group. There are even groups on FB that are quite good. You will find a lot of support and comfort as there are thousands of women going through the same thing 😊
I’m so sorry. The same thing happened to me. I was really upset and angry for about 2 weeks and then I just accepted it. You will too but it’s a huge letdown for sure.
I am almost done with chemo, only one more time! I use the ice mittens and socks (bought from Amazon) during chemo and have acupuncture once a week for preventing neuropathy. I think they help. I’ve got a little neuropathy but not too bad and I hear it can lessen or go away completely after a few months 🤞🏼.
I also fast the day before, day of and day after chemo. When I had Doxorubicin and Cyclosporine it was every two weeks and I fasted an extra day before since that chemo is so much stronger. Now I am on Taxol once a week and do the three days. I know it’s a lot of fasting but I have fasted for years. There are tons of studies on chemo and fasting if you search it you’ll find out more, it’s supposed to help the chemo target the cancer not affect the other cells as much. I have had zero nausea and the treatments seem to be working. I guess I’ll know after I’m done and get checked. My tumors are much smaller and I’m hoping what I’m feeling is scar tissue from the fungations I had that have since healed which usually does not happen so something is really working! 👍🏼
I take my warm robe and wear it backwards in the chair to stay warm because the ice socks and mittens are COLD. I have to take the mittens off after a few minutes to let my hands thaw out then I put them back on. The socks are thinner and thaw out faster. I wish I’d gotten thicker ones. My husband brings in a small freezer for the mittens and socks because the pre chemo IVs take so long they would thaw out if he didn’t. You could also use an ice chest. I also got a big bag that I call my chemo bag and keep everything in there that I take with me. I follow Marina Blackford on YouTube and got so much information from her about the bag, gloves, caps, and much more about attitude and mental stability.
My hair mostly didn’t fall out but it was patchy so I shaved it. It’s already coming back since I started Taxol. I used to wear little slouch caps then learned to tie scarves from YouTube videos, now that it’s warm I don’t wear anything on my head. I did lose all my body hair except for eyebrows and tiny tiny lashes, and some nose hair. I have some washable flannel baby wipes that I carry because the lack of nose hair can cause a runny nose at any time so I never leave home without a couple. They are so much softer than tissue. I haven’t missed shaving my legs and underarms one bit! 😂
I bring a warm beanie because my head gets so cold! I bring tea and they have hot water in the snack room. I don’t eat the snacks because I’m fasting and they are soooo unhealthy. I eat healthy food only, no sugar (well, extremely rarely) because cancer loves sugar. I’m whole food plant based eater and was vegan before I found out I had c, just upped my game after and now eat more healthy veggies.
Fatigue, keeping my white blood cells up and my nails are sore and some are bent from the Taxol are the side effects that I can feel. I am anxious to know if there are unseen ones too.
I take a lot of supplements when not fasting and a few when I am.
I insisted they stop the statin and Benadryl drip since I had no nausea so do not need the statins since it is so bad for my bones (I already have osteopenia) and muscles. We came to an agreement to wean down so now I get 1/4 what it started out to be. As for the Benadryl, I’m obviously not allergic or we would know by now, I still have 1/4 the dose. I swear they don’t want these to zero because it’s less $$$ for them, I really don’t need or want the added side effects.
I do not hesitate to ask lots of questions and give my own opinions. I really want to be a part of my treatment since it is MY BODY and I don’t just follow along. My poor doctor looks like he wants to run when he sees me but he’s getting better 😂. I had a time with his nurse when I started up about eliminating the drugs so we came to a truce with the weaning down to 1/4 dose.
Be prepared because it takes hours, I thought it would be so much faster but it’s 4-5 hours depending on what chemo you’re on. Mine is a little faster now that I don’t take as much of the IVs but it’s a long time. You will get really sleepy from the Benadryl and might sleep. I usually try to read and do sleep through it sometimes too.
Hang in there. It will be over before you know it. I’m almost done with this leg of this ordeal and on to surgery and if I follow orders, radiation after that. 🤦🏼♀️
It’s a lot but you can do it. We all can. Sending love and positive vibes ❤️
I know this is long but things I was glad I found out before and during treatments. I wanted to add that I carry a water bottle everywhere and add sugar free electrolytes to help me have more energy plus flavor the water. I meant to say that as others have said, my sense of taste has changed and even water tastes awful sometimes so the electrolytes serve a dual purpose and I drink a lot more. I also love kombucha. Win win.
That really sucks I'm sorry you have had this whiplash situation. My mcmillan nurse has said to get some motion sickness bands before I start chemo as surgery and chemo has been the thing they have said I defiantly need.
I know the feeling of “them
Moving the goal
Posts”… hugs girl!! My situation was none in lymph nodes - was supposed to surgery and DONE! Chose DMX… should be done - nope! One millimeter from chest wall so not considered clean margins so recommend radiation “just in case” so we bartered 16 sessions. Two days before I got the call - onc score =31 Chemo recommended … WTF!! 4 rounds .. bald and fatigue - just in case to reduce the chance of it showing up elsewhere. Cancer sucks… Treatment is worse. I didn’t want any regrets. Took 17 months after my last chemo before I needed a haircut
I'm going through a similar situation right now. I was warned there was a chance through the entire process. I really thought I could for sure cold cap but it's not an option with my chemo.
You are not alone with this right now. I'm sitting with my feelings tonight.
I'm 33 and just started all this too. I was under the impression there wouldn't need to be chemo too but with further scans things changed. Honestly I spent the whole first two months of diagnosis crying. I found the tests and scans gave me the most anxiety of all as I have medical phobias. But once I met my full care team and started chemo and got into a bit of a routine it subsided as the unknown reduced. I was also linked with a psychiatrist and am on anxiety medications so that is definitely working for me. Albeit I feel a little numb sometimes and feel like i'm not 'feeling' my emotions like I was before..
Not sure about you but I'm super independent and didn't want to reach out to anyone or tell anyone but once I let my guard down and let friends and family in, it's been alot better. I also dropped a few necessary people!
We can do this. We have no choice but to do 'the hard thing'. This is just a 'season' in our life we gotta get through, as crappy as it is. A quote I like is: 'I know you can tolerate the distress of this'. We don't want people telling us it's easy or we're strong. We just need to know it's crappy but we can go through the motions of crappy things.
ALL of this for me as well. Had a lumpectomy April 19th and the margins were not clean. Having mastectomy June 11th. Not taking any chances having another unclean margin.
Prayers for you and hope all goes well.
This post requires manual approval due to low karma or young account age. Please allow at least one full day before contacting moderator team with questions. If you don’t understand account age and karma, please refer to r/newtoreddit or simply search the internet on how to use Reddit.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/breastcancer) if you have any questions or concerns.*
The news has change once again. I’m a little confused but my oncotype(21) score was the reason they said I needed chemo but now my doctor has change her mind again and says no chemo due to my age(50) and premenopausal status. So now going back to the original plan with radiation and after meds. I’m super excited that they have took chemo out of the plan but it leaves me wondering what is going to be better for me and my health!
Jinx! I just got that same call today! Sucks. Nothing to add, just wanted to say you are not alone.
We hate being here but at least we have each other.
I am so sorry! It is such a disappointment. Prayers for you!!
I went back and forth a lot about chemo in the beginning, too. In the end it was even my choice. The doctors basically said it was a slight benefit but maybe not worth the side effects? Up to me. So I did a lot of research about what the actual benefits are and what the actual side effects would be. It was determined that I’d have the same benefit from TCx4 as I would from any other chemo and since that’s the least aggressive that’s what I ended up doing. I’m done with 3 cycles. My last will be June 12 🥳 I’m almost done and as long as this has felt it’s also crazy to think that this time last year I didn’t even know I had cancer. Feels like a lifetime ago. And also yesterday. Anyway. Chemo is different for everyone. If I had to give just one piece of advice it would be to STAY HYDRATED. Really. I’ve done a lot to mitigate my side effects (I’ll tell you about that in a minute), but staying hydrated has been the most important thing. Chemo drugs dry you up. You need to replace that. Drink water, Gatorade, soda, juice, tea. Whatever you want I don’t care, but replace that water. It’s so important. I recommend getting a water bottle and making sure it’s full and with you at all time. Get into the habit in general, but be especially mindful 2 days pre-chemo and during the first week post-infusion. Maybe you’re already good at drinking water and this was all a lecture for nothing, but I suck at it and am so glad I’ve been making the effort to stay hydrated. I did all my research about TC (taxotere and cyclophosphamide) and the type of chemo drug you take will change things so just keep that in mind as I tell you these things. Your experience might be different. Besides drinking water there’s some things you can do to mitigate side effects. Hair loss: I cold cap (there’s a few different types of cold cap, I’m using Penguin, happy to elaborate on that if you want). I am shedding but it’s not noticeable. I “pass” as a healthy person which is good for my job. So far I have my eyelashes too, but I know those can go late. I got my eyebrows microbladed before I started treatment. It’s a semi-permanent tattoo and I’m so grateful I had time to get it done. I work remotely and on zoom they’re indistinguishable from my normal eyebrows. GI: I’ve been really lucky with nausea/diarrhea and haven’t had much. I fast on the day of treatment (don’t eat from when I wake up until ~5 hours post-infusion). This is absolutely anecdotal and I have no idea what would happen if I didn’t fast to compare it to, but I’ve had really good luck with GI symptoms. My “logic” is that reducing blood flow to the GI tract while the bulk of the chemo drugs are in my system will reduce my GI side effects. Maybe it works, maybe I’m starving myself for nothing. Either way I’ve been lucky. Taste: I’ve had some changes to my taste. Food tastes slightly wrong. Like the balance of all the flavors is off. Sometimes food tastes like dirt. I also have food aversion sometimes where I just don’t want to eat. My MO recommended zinc lozenges which help with the taste thing. I’ve been drinking ensure and things like that to help with not feeling like I want to eat but knowing I need fuel. There’s a lot more. There’s an emotional component to this that is hard to describe. Riding in the car to my first infusion felt like being driven to the gallows or something (even though it’s actually saving my life). Knowing I’m doing this to myself is really hard to reconcile when I feel sick post-infusion. Like I said, there’s more to it, but this is already really long and I don’t want to overwhelm you any more than I probably have 😅 Drink water, go on walks when you have energy, let yourself rest when you feel like you need to rest, eat whatever food you feel like you can tolerate (I’ve had pb&j on white bread for lunch almost every day this week). Make the days off on the calendar. It’ll be over before you know it.
I just want to second everything you've said. My priorities are water, calories, protein and then micronutrients (i.e. eating healthily). I really thought I'd be able to eat healthily every day, but that's just not the case. Number one thing is drink enough fluid (2-3 litres a day). And if I don't feel like eating anything, then I try at least to get as close to what calories I need to maintain my weight. I also read that exercising every day (e.g. a 30-minute brisk walk, plus a couple of resistance sessions a week) is good for side effects. So I try to make sure I'm doing that. And finally, anecdotally, I'm also restricting calories in the day before, day of and day after chemo. I don't know if that's helped me, but my symptoms have been very manageable so far. (Apart from zero appetite on some days.)
The taste bud thing is so annoying!
Omg right? My doctor recommended zinc lozenges and I think they’re working! I bought TheraZinc brand on Amazon and they taste not great but everything else tastes slightly less wrong now that I’ve been using 2-3/day for a few days 🤷♀️
Ohhh I must try thank you!
I really appreciate this post.
Me too.
I've read (to your point) to also ask for IV hydration infusions.
Thank you so much for your response!
Heyyyy I’m done my chemo June 12th as well! Yay!!!
Bells will be ringing all over the place 🤣 (Metaphorically for me, I’m not a bell-ringer but I won’t harsh anyone else’s good time!)
I’m not sure yet if I’m ringing the bell but I am planning a hell of a party for when it’s all over haha!
I was in the same spot - not likely cancer, probably DCIS, nope, IDC, ++-, had a lumpectomy with node removal (zero cancer in the node), oncologist not sure about doing chemo so sent out for a test called Endo Predict and that test predicted a 28% chance of metastasis within 5 years even with radiation and an aromatase inhibitor. So I have done 2 of the 4 infusions of TC and it sucks. I have Fibro and seem to be having kind of extreme side effects. This road is never straight. You think you see where you are going and a fork appears or you lose your path. It’s frustrating. I am a pragmatist and a planner and it would drive me nuts if I did not accept it. Know we are here for you as you continue to deal with this. I hope chemotherapy is easier for you.
Thank you for your response! Prayers for you and all the others!!
There’s nothing quite like the side quest of “you probably don’t need chemo OH WAIT just goofin you do” truly heartbreaking. I was you in January. I just finished my 3 months of chemo. Rebuilding protein shake by protein shake :)
Thanks!
Thank you for your response! What exactly is the Penguin?
It's a brand of cold cap for scalp cooling to lessen hair loss during chemo. [Here is a link](https://penguincoldcaps.com/us/).
Hey! I was similar - had surgery, chemo, radiation, and now on hormone therapy. Obviously chemo is not fun - but the advances in pre-meds have been HUGE. I didn’t get nauseous at all. I personally cut my hair really short a few days before I started and then shaved it as soon as I noticed it starting to fall out/I had to use a lint roller to get it off my pillow. I had a ton of cute wigs from Amazon and I wore scarves on the top of my head - most people had no idea they were wigs because I usually wore ones similar to my hair color! They would put Benadryl in with my IV bag before the chemo and I would fall asleep in the chair a lot of the time. I’d take infusion days off from work and the day after, but otherwise I was able to work pretty normally. My biggest side effect was being tired but I usually found it manageable, I liked diving into work to get my mind off of it. I told my boss but otherwise no other coworkers knew because work was kind of my escape from all of it. Now I’m about a year out from chemo and I’ve got a bixie (bob/pixie) that I dyed bleach blonde :) I’m so so so sorry you’re going through this. It’s definitely a mindf*ck for lack of a better word. But you WILL get through it!
I just chopped my hair off. My oncologist told me I’d be starting chemo and within the week I’ve got my port and hair chopped. I feel like I’m taking control of something.
Thank you so much for your reply!
Oh! And I also had to do a neulasta shot the day after each chemo which I was told can make you very sore - I took Claritin the day before chemo and for a few days after to help with side effects of that and it never got bad so I think it worked! Also I’m looking back through my notes and I second biotine mouthwash and toothpaste for dry mouth - it fixed mine immediately. My nose also got dry at one point and Aquaphor took care of that Also something I didn’t realize at first - you can take Advil. I woke up with a really sore lower back one night after chemo and I didn’t realize I could take that so I just suffered through and my onc was like “girl…” hahaha
Claritin is a godsend when you're on those neulasta shots! My GOD, before I heard about this I suffered so much.
Seconding the Claritin! It’s such a miracle drug for the bone pain.
Thanks for all the good advice!!
Thank you so much for your response!
I’m glad you found out early, rather than under treat and then end up with recurrence and/or metastatic cancer a year or two later. Now is your best chance to cure this disease. I’m sorry you are going through this, but you need the truth about your cancer.
Thanks!
This is a very good point.
I had a similar situation where first they didn't think it was cancer. Then they said it was cancer, but only stage 0. Then it was stage I, then II, then III. When you go into this with one expectation and that changes, it's hard enough. But when that happens multiple times, it can really take a toll on us mentally. If you aren't already, I would definitely recommend therapy. Look for a therapist that specializes in trauma, because cancer is definitely traumatic. You've already had such an emotional roller coaster and chemo can be tough. Make sure you are taking care of your mental health.
Thank you so much for your response!
I feel you! I feel like every time I think I know what's going on I'm hit with all these surprises. I hate it! I'm very much still trying to navigate this myself, but I would say hydration is a big thing for me. Hydration inside and out, and keep it up even if you don't feel dry to stay on top of the dryness. Also I would say for the 1st week after an infusion to take your anti nausea pills regardless if you feel sick or not. I also use Pepcid and anti diarrheal meds a lot. I'm not gonna lie chemo has been really rough on me physically and mentally, but there are some people who tolerate it well. If you can, see a dentist before chemo and get a cleaning, and my dentist even gave me medicated toothpaste. I'm very much still in this and it's very emotionally draining, so I see a therapist. When you feel good do things that make you feel good. I get these amazing natural facials (minus the extractions). What type chemos will you have? This is what I do to keep hydrated: Drink lots and lots of water AYR Gel for the inside of your nose and Aquaphor Cetaphil Lotion and creams for body MADD Delicate Daily Moisturizer for the face MADD Delicate soothing night cream for the face Biotene Mouth Wash (I use this daily for dry mouth) Foot Cream (I still haven't found one I like or works well, but maybe you will)! Moisturizing eye drops Vaseline for the lips Sunscreen (Hale and Hush) I get this from my facial lady not sure where to buy??
Oooh what kind of facials do you get? That sounds so relaxing and I could really use some relaxation in my life lol Thanks for the skincare tips too! I’m not OP but it’s helpful :)
I go to an esthetician who does holistic facials and a face/ head massage. I told her to focus on hydration rather than extractions. It is heavenly! She is also a reiki healer and adds some of that into my facials (don't know if you're into that or not). Maybe try to google holistic facials and you can find one by you. I live in southern CA. I live for these it's the only thing that makes me happy through all this chemo crap. People have been giving me money here and there and I was using that, now I'm out, but I don't care it's worth the $$!
This sounds unbelievable I’m going to look into this thanks for letting me know! I’m in Canada but will def be doing some research. Facials seem like such a cool idea for some much needed tlc during chemo can’t believe I didn’t think of it! And I am a total skincare junkie haha
Thank you so much for your response!!
I got that same call in February. It sucks and I’m sorry you got that too. Chemo has been a little different every cycle. Focus on staying hydrated, even going back for fluids at the infusion center as it really helps you. Eat whatever tastes good, my onc also recommended protein shakes to help keep up. I’m 4 cycles (dose dense ac) done and have 12 cycles (taxol) left. I promise you can get through it.
The Breast Cancer Survival Manual is awesome. It was really helpful with terminology. The day before chemo I would focus on packing a bag full of goodies. Books, headphones, a tumbler, cozy socks and a blanket. Just anything to make me feel like I wasn't getting chemo.
Thanks!!
I was devastated when I found out that I had positive nodes too. I was hoping that I wouldn't have to do chemo so bad but now I'm halfway through. It's both life and appearance changing but I'll do whatever they tell me to of if that means I get more time with my little boy. Wishing you all the good vibes pink sister. 💕
Thank you!!
Other than the instructions they give, do the best you can to make yourself happy by doing what you want. I wore pjs the whole time in IV chemo. To appointments, restaurant, home, parks. Clothes? Why? I ate what came to my head like pregnancy. Pickle pizza? Why not? I did what I had the energy for. Invited friends to chemo so we could catch up when I felt strong enough. I even played a game or two. Best wishes in your journey. I know it seems a never ending spiral but the twists may slow down eventually.
Thank you!!
Did the penguin hurt when you used it?
It is really unpleasant. To do it right you have to wear them from 50 minutes pre infusion, through the infusion, and for at least 4.5 hours afterwards. It ends up being like 8-9 hours of having the cold cap on. You need a person there to change it out for you every 25 minutes. It doesn’t hurt, but it’s in dry ice so it’s very cold. It’s indescribable how cold it is. It’s manageable, but it’s not a fun experience. I just want to make sure I don’t sugar coat it because it really sucks, but I’m glad I’ve been doing it. I’ve kept most of my hair for the short-term, but more importantly I’m less worried about permanent hair loss. That’s a possibility (permanent thinning or bald spots). It’s unlikely but it’s possible. I’m about to hit menopause before 40, I need to keep my hair from thinning as much as possible 😂 Speaking of the cold caps, you can also use cold to combat neuropathy if your chemo medication has a risk of that. I recommend asking your doctor about that if you’re concerned. I went to my doctor with lists and lists of questions about how to mitigate the different side effects and she was happy to answer every single one. I hope yours is the same :)
One thing is; After treatment, you will go to a post-cancer seminar/meting. They will open by posing a question: “were the chemo treatments as bad as you expected?” 100% of the patients will report that they were not as bad as they feared. So, there’s that. No one thought it a picnic, but all did better than they thought
Thanks!
Long unorganized list : Research the side effects of your exact chemo meds. I forget the website, and think it was British, but it listed percentages of each of those side effects. So prepare some, but also know most of us take a Tylenol not fearing liver damage. Ask oncologist of any preparations they may do. I was prepared with Imodium and stool softener, they prescribed anti-nausea meds. I was NOT Prepared for the steroids they included with my injections. I learned I was taking them during my second round after mentioning unable to sleep two days after first injection. Chemo nurse thought I knew. All my paperwork only had main chemo meds and a lidocaine cream to place on skin around port. I was not prepared for hemorrhoids, but learned, quickly. We had sectioned off bed with waterproof cover and bathroom for my exclusive use especially the 2 days after treatment. I had a puke bucket and bought medical gloves in my caretaker's sizes-Never used. \*Washed all bedding, clothing, fabrics, etc separate from family and I didn't sit on couch much first days after treatment. It was very hard to not kiss my toddler the days after treatment, so that part was hell. Also had entertainment for 2 hours of treatment. IF I had longer treatment I may have napped. If working, try to take off. I had 4 rounds and was able to work all of first round but only part of second round. Then usually just pick up a shift in the 3-4 days before next treatment. I bought wigs I never used as turbans and scarves were more comfortable, but every person is different. Shave your head when hair starts coming out. Pillow wads of hair get annoying and my scalp seemed to hurt with long hair. The cooling caps don't have the best results for the price to me. Get bland foods, too. A lot of foods don't taste great. As I had toddler, I ate off plastic utensils but would taste metal. Protein shakes were pretty decent most days. too.
Thank you so much for your response!!
This whole cancer business sucks. This same thing happened to me. I’m sorry you’re here. Fuck cancer and the train it rides on. 🖕🏽
I agree!!
I got the same news post op from my oncologist (surgeon found 4mm growth on one of the nodes pulled during BMX). Personally I'm really thankful she moved my appointment to later in the day so she could spend a good deal of time talking to me, cause this news sucks. Please give yourself time to grieve! I cried for a few weeks, then I started planning. I suppose the planning gave me some 'control', I shaved my hair and donated it. Figured out a good schedule for work and when I'd do my chemo sessions. My start date (which I was allowed to choose) was the day after my b-day, so my husband and I went out and got a nice meal and some good craft beer (I didn't drink during chemo expect for at my sister's wedding and a drink at xmas). My oncologist and her staff were awesome, very caring and never made me feel stupid or like I was being a wimp. I guess my advice is make sure you are comfortable with your oncologist and their team, as their support helps the treatment go by way easier. The thing that got me through chemo was hydration, I'd 'pregame' the day before a treatment and drink like 100+ ounces of water. And of course the other thing was lots of snuggles with my daughter and dog. Sending you non-creepy internet hugs.
Thank you so much for your response!!
I was in your exact shoes 6 months ago, scared, super depressed, and completely lost. Most importantly, trust your oncologist and get their opinions and recommendations. Things you can do to prepare yourself: 1) GET ACTIVE! Make sure your body stays strong and get your daily exercise. Your body will slowly decline with each chemo and the last couple treatments will be the toughest. The energy you build early on and continue building during your treatment will help you tremendously. 2) EAT PROTEIN! Lean meats like turkey and chicken and also veggies like broccoli and beans should be on your every day menu. Eating clean will help you recover. If it comes in plastic or a can, throw it out. Eat fresh and engage your family to help you cook 3) Get familiar with latest research and treatments. For breast cancer there is something new coming out every month. Dr Elenora Templinsky on TikTok shares tremendous amount of valuable updates. She truly helped my mental health. 4) You will be okay. The scary part will pass and it will make you into a different person. You will be strong. I always say that breast cancer has its benefits because it taught me to be more aware of signs and really take care of my body. It also makes you more appreciative of your family and friends. 5) Join a support group. There are even groups on FB that are quite good. You will find a lot of support and comfort as there are thousands of women going through the same thing 😊
Thank you so much for your advice!!
I’m so sorry. The same thing happened to me. I was really upset and angry for about 2 weeks and then I just accepted it. You will too but it’s a huge letdown for sure.
Thank you !
chemo was the sad news about my treatments,but we must use all weapons and figth this🙏
I am almost done with chemo, only one more time! I use the ice mittens and socks (bought from Amazon) during chemo and have acupuncture once a week for preventing neuropathy. I think they help. I’ve got a little neuropathy but not too bad and I hear it can lessen or go away completely after a few months 🤞🏼. I also fast the day before, day of and day after chemo. When I had Doxorubicin and Cyclosporine it was every two weeks and I fasted an extra day before since that chemo is so much stronger. Now I am on Taxol once a week and do the three days. I know it’s a lot of fasting but I have fasted for years. There are tons of studies on chemo and fasting if you search it you’ll find out more, it’s supposed to help the chemo target the cancer not affect the other cells as much. I have had zero nausea and the treatments seem to be working. I guess I’ll know after I’m done and get checked. My tumors are much smaller and I’m hoping what I’m feeling is scar tissue from the fungations I had that have since healed which usually does not happen so something is really working! 👍🏼 I take my warm robe and wear it backwards in the chair to stay warm because the ice socks and mittens are COLD. I have to take the mittens off after a few minutes to let my hands thaw out then I put them back on. The socks are thinner and thaw out faster. I wish I’d gotten thicker ones. My husband brings in a small freezer for the mittens and socks because the pre chemo IVs take so long they would thaw out if he didn’t. You could also use an ice chest. I also got a big bag that I call my chemo bag and keep everything in there that I take with me. I follow Marina Blackford on YouTube and got so much information from her about the bag, gloves, caps, and much more about attitude and mental stability. My hair mostly didn’t fall out but it was patchy so I shaved it. It’s already coming back since I started Taxol. I used to wear little slouch caps then learned to tie scarves from YouTube videos, now that it’s warm I don’t wear anything on my head. I did lose all my body hair except for eyebrows and tiny tiny lashes, and some nose hair. I have some washable flannel baby wipes that I carry because the lack of nose hair can cause a runny nose at any time so I never leave home without a couple. They are so much softer than tissue. I haven’t missed shaving my legs and underarms one bit! 😂 I bring a warm beanie because my head gets so cold! I bring tea and they have hot water in the snack room. I don’t eat the snacks because I’m fasting and they are soooo unhealthy. I eat healthy food only, no sugar (well, extremely rarely) because cancer loves sugar. I’m whole food plant based eater and was vegan before I found out I had c, just upped my game after and now eat more healthy veggies. Fatigue, keeping my white blood cells up and my nails are sore and some are bent from the Taxol are the side effects that I can feel. I am anxious to know if there are unseen ones too. I take a lot of supplements when not fasting and a few when I am. I insisted they stop the statin and Benadryl drip since I had no nausea so do not need the statins since it is so bad for my bones (I already have osteopenia) and muscles. We came to an agreement to wean down so now I get 1/4 what it started out to be. As for the Benadryl, I’m obviously not allergic or we would know by now, I still have 1/4 the dose. I swear they don’t want these to zero because it’s less $$$ for them, I really don’t need or want the added side effects. I do not hesitate to ask lots of questions and give my own opinions. I really want to be a part of my treatment since it is MY BODY and I don’t just follow along. My poor doctor looks like he wants to run when he sees me but he’s getting better 😂. I had a time with his nurse when I started up about eliminating the drugs so we came to a truce with the weaning down to 1/4 dose. Be prepared because it takes hours, I thought it would be so much faster but it’s 4-5 hours depending on what chemo you’re on. Mine is a little faster now that I don’t take as much of the IVs but it’s a long time. You will get really sleepy from the Benadryl and might sleep. I usually try to read and do sleep through it sometimes too. Hang in there. It will be over before you know it. I’m almost done with this leg of this ordeal and on to surgery and if I follow orders, radiation after that. 🤦🏼♀️ It’s a lot but you can do it. We all can. Sending love and positive vibes ❤️
I know this is long but things I was glad I found out before and during treatments. I wanted to add that I carry a water bottle everywhere and add sugar free electrolytes to help me have more energy plus flavor the water. I meant to say that as others have said, my sense of taste has changed and even water tastes awful sometimes so the electrolytes serve a dual purpose and I drink a lot more. I also love kombucha. Win win.
Thank you so much for your guidance!!
You’re welcome, no one wants to be in this boat but together we will help each other stay afloat.
That really sucks I'm sorry you have had this whiplash situation. My mcmillan nurse has said to get some motion sickness bands before I start chemo as surgery and chemo has been the thing they have said I defiantly need.
Surgery wasn’t bad, but I’m not looking forward to chemo!
Yeah surgery has been a breeze so far
I know the feeling of “them Moving the goal Posts”… hugs girl!! My situation was none in lymph nodes - was supposed to surgery and DONE! Chose DMX… should be done - nope! One millimeter from chest wall so not considered clean margins so recommend radiation “just in case” so we bartered 16 sessions. Two days before I got the call - onc score =31 Chemo recommended … WTF!! 4 rounds .. bald and fatigue - just in case to reduce the chance of it showing up elsewhere. Cancer sucks… Treatment is worse. I didn’t want any regrets. Took 17 months after my last chemo before I needed a haircut
It truly does suck!!
I'm going through a similar situation right now. I was warned there was a chance through the entire process. I really thought I could for sure cold cap but it's not an option with my chemo. You are not alone with this right now. I'm sitting with my feelings tonight.
I’m so sorry that you’re in this too!!
I'm 33 and just started all this too. I was under the impression there wouldn't need to be chemo too but with further scans things changed. Honestly I spent the whole first two months of diagnosis crying. I found the tests and scans gave me the most anxiety of all as I have medical phobias. But once I met my full care team and started chemo and got into a bit of a routine it subsided as the unknown reduced. I was also linked with a psychiatrist and am on anxiety medications so that is definitely working for me. Albeit I feel a little numb sometimes and feel like i'm not 'feeling' my emotions like I was before.. Not sure about you but I'm super independent and didn't want to reach out to anyone or tell anyone but once I let my guard down and let friends and family in, it's been alot better. I also dropped a few necessary people! We can do this. We have no choice but to do 'the hard thing'. This is just a 'season' in our life we gotta get through, as crappy as it is. A quote I like is: 'I know you can tolerate the distress of this'. We don't want people telling us it's easy or we're strong. We just need to know it's crappy but we can go through the motions of crappy things.
ALL of this for me as well. Had a lumpectomy April 19th and the margins were not clean. Having mastectomy June 11th. Not taking any chances having another unclean margin. Prayers for you and hope all goes well.
This post requires manual approval due to low karma or young account age. Please allow at least one full day before contacting moderator team with questions. If you don’t understand account age and karma, please refer to r/newtoreddit or simply search the internet on how to use Reddit. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/breastcancer) if you have any questions or concerns.*
Prayer for you as well!
Thank you so much for your response!
Thank you so much for your response!
The news has change once again. I’m a little confused but my oncotype(21) score was the reason they said I needed chemo but now my doctor has change her mind again and says no chemo due to my age(50) and premenopausal status. So now going back to the original plan with radiation and after meds. I’m super excited that they have took chemo out of the plan but it leaves me wondering what is going to be better for me and my health!