Starting Chemo April 2020
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Hi hog_co-pilot! Welcome to our group!
The group has been really great! I really needed this— needed to find people sharing similar experiences and feelings as me, but also to hear different ideas and perspectives, and the group gives me something to look forward to because we have a lot of activity with posts and photos. It's been so, so lonely since the quarantine began in my city, so I feel super grateful for my online friends right now!
I'm 43 (no kids) and was also completely surprised by my Stage 3 diagnosis after my first mammogram / ultrasound. I also panicked a bit before chemo, assuming I'd suffer from the worst side effects and that my life was completely on hold. But, it hasn't been like that. As Katie (ipenelope) said, cancer/chemo doesn't rule my life. I mean, don't get me wrong... I obsessed with the best of 'em after the initial diagnosis, and it did feel like I was totally in over my head with things I couldn't understand, and at the same time, suddenly The Cancer Expert for all my worried friends and family. But as chemo started, I realized that there's no exact blueprint for how it's going to go for each person, and also that your body doesn't, like, instantly fall apart or anything! It's more like a slow build-up of changes and side effects, with each one revealing itself unexpectedly and you just kinda deal with each one as they come. Meanwhile, life goes on!
I try to stay positive, which for me means that I think about how proud I am of my body for facing and surviving each day of chemo, and that each day is a another step forward in the fight. Like literally every morning, I wake up and say a tiny cheer out loud to myself for Day __, as a way to congratulate myself for wherever I am in the treatment cycle. I also rely a lot on humor and try to laugh at the absurdity of all the things we go through as cancer patients! (Spoiler alert: There's a lot! Our lives are totally ridiculous, haha)
-jess
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Thank you both so much! Just gonna have to take it step-by-step! BTW, my friends call me Les.
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Hi everyone. Just catching up and checking in. I love all the pics that have been shared. They are inspiring!
I have a couple of questions I wanted to ask, if you would all indulge me. First of all, my daughter told me that she heard people tend to handle chemo like they handle pregnancy. I did not have fun pregnancies and was very sick, particularly in the early weeks Chemo has not been a picnic so far, but I'm sure it could be worse, too. I was just curious if those who flew through pregnancy are having an easy time with chemo or not. And vice versa. I do not work and don't even know how I would manage that if I had to. So kuddos to those of you who do!
Also, I have a terrible taste in my mouth and nothing seems to take it away. (Oddly enough, I had that during pregnancy, too.) While my nausea has been intermittent, my tummy just feels "off" a large percentage of the time. I'm having a hard time figuring out what to eat. Dairy seems to really bother me (never had problems before), I'm afraid to eat anything acidic at all (citrus, tomatoes, etc.) because I don't want it to aggravate my sore mouth, meat and eggs have no appeal. I just don't want much at all. And yet, if I get hungry, I get even more nauseous. I've been eating oatmeal or cooked buckwheat for breakfast every day and that goes down well. I can nibble on crackers a little but not a lot because of my sore mouth. I think I'm going to cook some apples today. Looking for other non-dairy, non-acidic, soft, easy-on-the-tummy ideas. My dear daughter did bring me a big container of chicken and rice yesterday and that has been amazing. But I can't eat that every day!
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Hi Jess and everyone,
Thanks for liking my new sweater! I’m enjoying seeing your pictures and grateful to hear of your experiences since you can’t find this stuff on Google. I’m actually not doing radiation this timeas I had that back in 1998 and they aren't recommending I do it again. I just heard from oncologist's office. Oncotype test still not back, so I'm still on hold with the chemo. They are now saying they probably won't get it back until the end of next week, which will put me at 6 ½ weeks after surgery. I'm getting very worried about not having any information at all from them about the process, what I should be eating, how much it's going to cost, etc etc. Thank God for this forum! I can read about side effects and what to do to counter them, and when to expect to lose my hair. I'm starting to get depressed thinking about the amount of time going by, though. When I first talked to my oncologist, he said 4 weeks was about average, with an outside window of 6 weeks to start chemo for the best results. Now it looks like it'll be more than 6 weeks. Is it normal to be scared about this? It's hard to be positive
Nan (the worry wart)
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Hi, Nan! I’m Les. I’m quite the newbie on the block so I don’t really have any advice to give. However, I’m scared, too. I’m supposed to start chemo on Thursday, April 30. Just this past Friday, I had some sentinel lymph nodes removed and am still trying to recover from that surgery. (I’m not in pain- just really sore.) Just wanted to let you know that you’re not alone in being scared. I’ve been nauseous for the past several days just at the thought of chemo. You have a fellow worry wart on this board.
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Hey there Kris -
You’re buzz cut is awesome! My husband is already to do mine and I haven’t even had my first treatment! I was thinking of cutting mine off a bit at a time and trying out some new hairdos before it falls out. I wish my younger daughter was around. She’s totally fearless with the scissors!
Happy Birthday Sherri! Hope your birthday was good and you got to eat cake!
Hugs,
Na
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Hey Les - Thanks so much for your kind words. I’ve been kind of blue since this morning. Your message helped. I’m glad you found us and we found you
I had all of the lymph nodes under my left arm removed when I had BC last time, so I didn’t have any left to test this time. But I remember how uncomfortable it was back then - worse by far than the breast surgery. One thing I do remember above and beyond that was I couldn’t wear a watch or a bracelet on my left wrist for a couple of years afterwards because the lymph system up and down my arm hurt for a long time. Not in an OMG this kills way, but more a weird achy feeling ouch. I was really lucky I never had lymphedema afterwards! I hope it feels better soon! And that your first chemo session goes well.
Thinking of you!
Nan
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Les- just wanted to tell you that I added you to our Roll Call at the top. Glad you joined us! This is the right place to be for sharing and soothing your worries.
Nan- Ugh more delay! I think it's totally normal to be scared or frustrated with this. Although my situation is different (I didn't have surgery first), I had to wait 7 weeks from my cancer diagnosis to finally starting chemo, and that whole period was torture. Again, I know that's totally different than your concerns about being told that chemo is effective during a specific window after surgery, but I wanted to sympathize a little with you on how it feels to have to wait. I hope you can keep positive about your treatment plan and just know that every day is a step closer.
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Pjb- I've had 4 children and did not compare my first round to any of my pregnancies, and they were all very different. When I did the AC + T I had the same taste issues as you do and sadly many women will say they have them to. I did not have the mouth sores so I did citrus which really helped me. I would suck on sugar free lemon drops and add lemon to my water to help. Heck back then regular water didn't even taste good and I'm a huge water drinker!! What I was told was find what you can eat and eat it. Yes it gets old the same things over and over again, but thankfully AC is only for a little over a month. And for me once I was done with AC it took about 2 weeks for taste to change significantly, not back to normal though.
Nan- OMG the waiting is by far the worst!! I had surgery prior to chemo last time but still had a 4 week delay. Sadly there was a 2 month delay between finding the lump and being diagnosed till it was removed, I was very worried during this time. Once chemo starts the worry will ease and shift to a different kind of worry. For hair I did what you mentioned, my hair was well past my shoulders so about 3 weeks prior to chemo starting I got it cut into a bob that was chin length and buzzed my hair 17 days after my first chemo treatment as my hair was falling out a decent amount and I figured I would take my hair, not chemo!!
Les- I started chemo again last Monday and even though I have already gone through it I was very nervous!! You body will be ok with chemo that close to surgery! Just remember to slowly move your shoulder area so your shoulder doesn't lock up on you. Unlike Nan I was never told to not wear a watch. I had all my left axillary lymph nodes removed. No blood draws or blood pressures, tattoos, things like that, but I wear my watch on my left wrist and have had no issues with lymphedema. Every doctor is different!
Round 2 of chemo and immunotherapy down, well just chemo this week no immunotherapy. Feeling better then I was last week, guess more reactions to the immunotherapy.
I hope everyone has a great day, and are staying safe during this time and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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hi Hog Co-pilot — so sorry you have to join us but please come on in, sit right down and be welcomed. Its ok to be terrified. This is scary stuff — all of it — and there's so much to learn as you struggle to get your feet back under you. I thought I had a good handle on everything until last week. I crumbled. I've cried more since Thursday than I have since first dx in Fall 2016. I had zero chemo then. Had my first on April 1 and will have more chemo this week.
When you feel overwhelmed or lonely or scared just put your hand on your cheek. Underneath your hand is a virtual hug and a kiss from me. You'll never be alone and you'll always have a hug whenever you want one.
Best wishes for strength as you discover and learn to live with your new normal.
j
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Reading all the wonderful posts from you remarkable ladies.
Welcome Les! You've landed in a good spot! Hang in there and hang with us!
If I check out in pre-chemo this week I will be doing my second visit to the "chemo spa"...
My overall sense of well being seems to be recovered since first round chemo and I have no side effect symptoms to speak of now probably other than my bowels are still irregular and loose. Would like to get a better handle on that. I think it's stress and the fact I'm eating differently because I'm told not to shop, etc. and have to get everything delivered...Eating things I don't normally eat...Appetite is great.
Blessings,
Allie
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You ladies are truly a blessing! Thank you for embracing me into this little sorority that none of us really wanted to join!
Reading your responses have given me strength and hop, and I was sure running low on those today! We’ve got this!!!! 0 -
pbj61: I've also had 4 pregnancies and 2 were difficult as far as morning sickness but overall it was easy. I am NOT handling chemo as well as I did those pregnancies! Everything tastes off to me too. I've been nauseous since day 8 (now day 11). I got my first meal down tonight after only eating crackers or an apple for four days. I also don't see how people can work! Kudos to those ladies!
hog_co-pilot: Welcome! I'm 35 and recently diagnosed. I know what you mean about it coming out of nowhere. It's terrifying. Chemo for me is not easy but we are here for you. We'll get through it.
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Jellelloello and Katie - thank you! Your words helped very much. I am so glad to be a part of this group.
Allie - fingers crossed that all goes well for you this week! So funny you should mention getting things delivered that you’d never eat normally. This week, I ordered black licorice Twizzlers. What on earth was i thinking? It must have been the rain storm of biblical proportions yesterday that inspired that purchase! (Along with the 2 for $7 sale). I’ve been making bread and eating a lot of crackers. I NEVER eat that stuff. Is there a condition called “Covid 15?”
Lastly, my oncologist called a while back and we talked for 45 minutes! No oncotype test until next week, but the FISH test from the mastectomy should be ready on Friday. He seems optomistic that I’ll be going in late next week. Guess I’m not an “April” after all, but you’re not getting rid of me. Ill just be the little kid in the class.
Thanks again for being so supportive. It was definitely needed today.
Xoxo
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Hey ladies! Sorry for being MIA, but I haven’t been feeling well since I got home from the hospital. No energy, I sleep a lot, nausea, and weak. I can barely make it to the bathroom and back. And the (TMI alert) sludge! That is what I now poop. Pure sludge up to seven times a day. I’ve tried Immodium, Pepto, and Dicyclomine (a tummy muscle relaxer) and no relief. I’m hoping it was just the antibiotic they gave me to take at home which I finished last night. I see my Oncologist tomorrow. I don’t know whether we will do my third round of AC or wait a week, or change tactics altogether. We’ll see. It has been very hard to keep my normal upbeat attitude through the last week, but I’m trying.
Happy belated birthday, Sherri! I’ve loved reading through all the posts and seeing pictures!! Hi, newbies! Welcome! I am mostly bald now. I have a soft bamboo cap I bought online that I wear around the house because my scalp is tender. Tomorrow, I have a bandanna I intend to wear. I need to look into wigs. I have mouth sores around day six post chemo, but the rinse always helps. I use 8 ounces of water, a Tbs of baking soda and pinch of salt. Then I leave it in a covered cup on my counter and use it after every meal and whenever I think about it and the sores clear right up. Unfortunately, I’ve found anything salty...chips, popcorn, salted nuts,, etc. cause my tongue to break out. So that’s a bummer. And very cold things like milkshakes trigger coughing and asthma attacks. I’ve found I don’t have much appetite lately either. I have found Greek yogurt stays down and has the protein I need.
My sister is coming back today to stay for a week so that’s a yay!
Love to all.
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Hi...I just started chemo on April24/20 FEC-D
Discovered a lump Dec 16/19 in my left armpit - diagnosed Jan 14/20
Lumpectomy March 5/20 with axillary node clearance (26mm ductal tumor/4 lymph nodes involved) Path report said T2/N2/M0 Grade 3
My treatment plan is 6 rounds using FEC-D plan with Herceptin starting round 4 and then radiation. Herceptin for 1 year and then followed by tamoxifen
Its day 5 of chemo and I'm doing okay...just feel a bit tired and not too hungry as my mouth seems so dry.
Interested in any Nova Scotia friends going through this right now.
Ductal Carcinoma ER+ PR+ HER2+ Grade 3
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Wow, this is a busy group. Thanks everyone for the birthday wishes. I had a pretty good day given the circumstances. I'm not 100% after my treatment on Friday but am doing okay. Hang in there ladies!
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Morning Ladies of the Sorority! (Les! Your choice of words is at's brilliant: I think we should all think of a name for our Society! Who's with me?)
Greetings all and special greetings to new members. Bless you Nan for your best wishes for my chemo this week. I return blessings to you!
As always, I love reading your posts. I'm am not sure when I will be able to respond in more detail so I send my best wishes for peace and comfort.
Side effects: I want to encourage all (including me) to not be shy about asking the med team for help as needed. I was told not to worry about thinking something was "minor" and to not try to "tough things out" (I do tend to do that...)...
I have had side effects that I think are well-controlled at this point since last chemo BUT the change in BMs does bug me and tomorrow during pre-chemo, I will ask for more help! I am sure this is from stress and the fact that my body is dealing with tons of physical challenges and changes. I also tend to expect "overnight results" So if I eat an apple I think "tomorrow, things will be perfect." It could take a fair amount of time, given the circumstances, for me to get closer to what I define as normal again...
Allie
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hi Shareliz54
you are on the same treatment as me. I don’t think any of the other girls in the group are. I just had my second round yesterday, unfortunately it was not as good as the last one but I’m coming around today so that’s good. I hope you got along ok with your first treatment - I too am from Nova Scotia!!! New Glasgow - how about you?
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Allie - I'm the same as you - tough it out, try things on my own, do the natural solution, etc. I am still that mindset mostly, but now that I've been through the first cycle and know what to expect and what side effects knocked me on my rear, I'm approaching Round 2 on Friday with a slightly altered mindset. I have some natural solutions that I'm implementing ahead of time, and some medical intervention (I'm looking at you, Immodium!) that I will employ much earlier in the game if need be. It's a balance.
Les - WELCOME! You and I are both Triple Positive, so I'm interested to hear what your treatment will be. I also had a total shock with my diagnosis. I'm a little older than you (54), but really healthy with no hint of anything medical up until this diagnosis. So it's really knocked me for a loop. If you end up on a similar treatment (I'm getting TCHP - Taxotere, Carboplatin, Herceptin, Perjeta) I'm happy to answer any questions you have. I started chemo on April 10th and will get Round 2 this coming Friday.
Nan- thanks for the kind words about the buzz cut! I also had my hairdresser cut it really short before I started chemo, just so there was not much for my husband to buzz off. It was a good transition. And no leaving the group now - even if you end up as a May chemo! We're all still getting it too, so you're stuck with us now.
Kris
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Kris, I felt the same - I was thinking that the second time around, I might not be so surprised/perplexed/worried about the reactions to chemo. I was thoroughly prepared and equipped by my onco team, but you know, you always think "oh sure, I can handle it" But then, one episode of heartburn and the queasies, and I spend an hour debating "do I take the anti-nausea meds or not?" This after the chemo nurse had already said "take the med even if you feel mildly nauseated so you can stay ahead of it." So, when the queasies and heartburn started, I asked myself "what actually is mild nausea?" Is this what the nurse meant by mild nausea? I make things so complicated...ugh...I am hoping cancer teaches me to be a better thinker.
I finally concluded, that if I didn't feel like I was going to throw up, right then, (and that's something you don't normally need to "think about"...), I'd try a Rolaid and sipping water. I figured that if it started to increase from mild, etc. I'd take the RX without delay., I will be reviewing this with one of the NPs before chemo and with the chemo nurse and I'll ask if I'm doing this right...
Best wishes for Friday! I'm a day ahead of you on Thursday.
Allie
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Hey everyone! Someone started a group for the May 2020 chemo start dates, and the first big question they are asking is about dealing with hair loss during the COVID-19 period when wig places and other things are closed. I feel like some of us have some really helpful things to share, so I encourage you to check it out and pipe in!
https://community.breastcancer.org/forum/69/topics/876198?page=1
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I found out that I got my port surgery scheduled for Monday! I am excited to finally have it, though a little nervous about the surgery itself. The new hospital rules are that surgery patients must get a COVID-19 test between 48-72 hours before surgery, so I'll be doing one of those drive-up & swab tests on Friday afternoon. So I have my usual weekly chemo tomorrow (Thursday) -- it's #5 of 16 WOOHOO! -- then a COVID test on Friday, and the port surgery on Monday. And I'm working on paperwork to get me back working part-time (from home, of course) next week, too. It feels good to have things scheduled, like things are falling into place. I feel satisfied and overall just really good this morning!
This last chemo cycle wasn't great, though. I started the usual winding down of energy on the evening of Day 3 (of a weekly treatment of Taxol). But then I felt pretty dang crap-tastic on Day 4, like worse than ever, and unusually sore and fatigued on Day 5 when I often feel ok on that day. Not sure how weather affects us, but maybe it's because it was so hot here in Los Angeles. It was in the 90s and we don't have central air conditioning so the house isn't temperature-controlled. I bought a large hot/cold gel pack, which I put in the freezer all day and sleep with at night in a pillowcase. It's great! I also use a smaller one on my pillow because my head/scalp was feeling hot and uncomfortable, both from the hot weather and because it was tingling and weird as I was losing my hair. Highly recommend this brand that I got on Amazon if you're interested: Tempthera Reusable Hot and Cold Gel Pack for Therapy.
Some new weird things going on: (1) My wrists have been hurting... like, not the joints but it feels super tender where you would wear a watch. It's mild, not painful, but it's annoying and I have no idea what's up. (2) Had some sort of allergic reaction yesterday late afternoon into the night. Thought it was regular springtime allergies because runny nose and itchy eyes & throat, but then I got some sort of rash of tiny bumps and strong itchiness on my left hand & thumb, both forearms and both ears! The rest went away by morning except for my ears-- still bumpy with a rash, red, hot, and still itchy. It's one of those things again where you're left wondering, Just allergies (or fill-in-the-blank normal life stuff) or chemo?? Lol that's my life these days!
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Jess - I have a love/hate relationship about the port. The surgery itself was no big deal. There was some bruising and soreness, but it goes away. My LOVE part is not being stuck in my arm or hand a million times. The port is SO easy for infusion and blood draws. I have some lidocaine cream that I put on before I go and it's all numb so that you can't even feel the needle going in. No stick, no pain, etc. My hate part is just that I can feel it in there - not in a way that it hurts, but just in a way that I'm always aware and I don't like that. A neighbor had chemo about 6 years ago for colon cancer and he said that the moment he was done, he had them take it out. I feel that way also - as soon as I can! I have to do Herceptin and Perjeta for up to a year, so it will be next March, but it will happen ASAP!
Allie - SAME! I always wait and question myself. Funny that the nurse told you to stay ahead of it. I think of the times that one of my boys has had surgery - tonsils, wisdom teeth, etc. I'm totally on top of their medication then - when my youngest had his tonsils out the nurse even told me to set my watch alarm for ever 4 hours and get up at night to give it him for the first couple days, and we would recover so much faster. I did it, and she was exactly right. So I have no idea why I don't instinctively do the same thing for myself! I'm trying to learn to be more mindful too. It's hard.
Kris
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Jess,
You have a lot going on.
That rule sounds good - test people.
You have heard a lot of people here talking about the ports.
It just occurred to me I have basically forgotten it is there...guess everything is healed up enough now. My was put in about three weeks ago.
I sometimes have to remind myself it is there and wonder if I should "baby" that side still, re: activities. Cleaned out another kitchen cabinet and rearranged pantry items without a problem yesterday. .
Will be thinking of you on "port day."
Allie
PS: my hair just started to fall out, big time!!!
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Jess,
I don’t know if this is even possible but, I would ask if you get any say so in where the port it placed. My sits right where my bra strap is and it gets irritating after a while. Luckily, I’m working from home so I stopped wearing a bra most days. Having the port makes infusions and blood draws easier but I’ll be glad when it gone.
Speaking of working from home; I’m really glad that I can. It’s nice to have some normalcy. I’m glad you have that option too. I take off on my infusion day (Fridays) and can work Mon-Thurs
Good luck on #5!Lise
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Hi Ladies,
I am 14 days from my last infusion. The main issues I had were with my mouth and it lasted for about 6 days. Quite painful and very thankful for Biotene Products. They really helped !! My mouth is finally feeling normal today, I literally lived on smoothies !! There is something to be said about being a little wiser going into Round #2 next week. I will have ice chips in my mouth the entire time of the Chemotherapy infusion. And the gargle with water/baking soda/salt every hour on the hour after for a few days. This was painful. The other issue I had was with my complexion. The last four days I just kept getting these little break outs and it just wasn't clearing up. Oncologist called in an RX for a Clindagel ointment and suggested Cetaphil Face Wash only until it clears up. Other than these two things I am feeling pretty good.
Allie, I feel your pain. Last night and today my hair is coming out big time !! It's freaky .... I thought I was prepared for it, but it's so surreal to have it finally happening. We are throwing my daughter a virtual baby shower on Saturday so I'm trying to baby it until then. Sunday is the day my son and husband are helping me shave it off. Good Luck on Infusion #2 Thursday. It's got to be easier the second time, right ??
Kris, you and I are on the same treatment plan. TCHP plus Herceptin & Perjeta for one year. It will be interesting to follow each other along the way. Double Mastectomy for me too. Is yours after or did you have before ? Good Luck on your Infusion Friday. Mine is May 6th, next Wednesday.
Katie, glad Round # 2 went so well for you too. We are just going to keep knocking them off, one by one !!
Stay STRONG
Debra
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Well, ladies, tomorrow is Round #1 for me: TCHP. I’m ready to get started but obviously nervous. I did get some good new earlier this week. My path report came back and NONE of the five lymph nodes that were removed contained any cancer! Praise God!! I’m hoping this will mean four chemo rounds in lieu of the original six that was mentioned. I’ll find out for sure tomorrow.
I’m super Type A so I’ve probably over planned for tomorrow, but I’d appreciate any advice. I bought a special shirt that unzips for my chemo port so I’ll wear that. I bought mittens and socks that contain ice packs to use during the Taxotere to combat neuropathy. I’ve packed a huge water jug and plan to munch on ice and hard candy during the infusions. I’ll take Claritin tomorrow to combat the negative effects of the Neulasta. I’ve got Prilosec, Imodium, Miralax, etc. on standby. I also have new toothbrushes and a cleaning UVlight for them. I have Biotene. I have an alarm set up to remind me to put my numbing cream over my port. My hair is pretty long and thick, so I’ve got my hair stylist coming to my house Friday to give me a pixie cut.
What am I missing?
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Les....it sounds like you are very prepared! I a, doing my 2nd round of TCHP on Friday. It is a little nerve wracking going in for the very first time because you don’t know how your body will respond. They will likely load you up with meds before the chemo to help combat some of the side effects. Do you have any meds that you take the day before? I have a steroid I take the day before and the day after. I took too much stuff with me, but I will probably continue to take too much “just in case”...phone, charger, headphones/earbuds, snacks, magazine, my cancer planner thing....need a better name for it, but the place I write down all appointments, questions, gratitude list, sweet things people have done for us, side effects/Symptoms..., take enough things to keep you occupied....but then again, you may sleep! Praying that all goes well for you tomorrow! Eri
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Welcome Les
Congratulations on the clean lymph nodes ~ that's Awesome News !!! Praise God for sure
Another fellow TCHP ~ I felt great after the infusion. I remember the Nurse Coordinator told me you will feel so much better after you leave today. You will know what to expect and you will be back in control again. She was right. I was there from 9-4 for my first treatment. The steroids and the premeds really help.Best of Luck tomorrow !!
Debra
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