Starting Chemo April 2020
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Claud - So sorry to hear about your port, but glad you advocated for yourself. Hopefully, they can reschedule soon and you can get going. I hope it's starting to heal and that your pain is going down.
Vilija - WOW! What a week! I also find the first couple days after to be pretty normal - it's days 3 - 6 that are the butt kickers. And then I start to feel more normal again. I'm day 8 today from Round 2, and still tired but feeling more like myself. And I hear you on the "boy mom" situation - 4 boys here, plus the husband. I used to joke that I live in a locker room. Thankfully, they are teens and older now, so actually being helpful. We've had our amazing community providing meals for us for the 4 or 5 days following each infusion, so that's been awesome. I'm glad you have your Aunt helping out - what a lovely thing.
Kris
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Vilija - oh my, what an experience you had in the week after your infusion! So happy to hear you've turned a corner and are okay.
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Wow Vilija - so glad you’re feeling better. Must have been very surreal sitting in a tent with a fever. I’m in awe how you dusted yourself off and got going again after that! Hope the rest of this round goes okay and you feel well. 🤗
I’ve been feeling off for a couple of days, but nothing terrible like that. Since this was my first round, I didn’t know what would happen. But today is day 5 and I think I’m almost human again. I stopped taking the zofran yesterday and so far so good. Been eating ginger just in case. A little stoppered up so took some Colace and it seems to be helping. And thank goodness for Tylenol which is my new friend. Never took it before this as I didn’t think it did much, but now it’s like a miracle - take one and the ick feeling goes mostly away for a while. I just took a 3 ½ mile walk and my legs were much better. I don’t know if I’ll be able to keep going like that, but I have my fingers crossed.
Claud, so sorry about the problems with your port and the hematoma.
How is it going? Sending a hug.Allie - I love reading your posts, too. Things on the Cape are heating up a bit according to my daughter who works at the hospital. It’s worrisome. I’m glad I don’t have another infusion for a couple of weeks. Maybe it’ll calm down a bit.
J - so happy the hamsters are doing it for you. And that you have a new MO that you trust and can talk to. Stressful to have to be both advocates for ourselves and at the same time at the mercy of circumstances. It’s a push-pull thing. We are fortunate that we no longer have to believe that doctors are gods like our parents and grandparents did. But somewhere in the deepest part of our scared selves we want them to be and just make everything better. The emotional stuff that goes with cancer is overwhelming. I would like to just go to sleep and wake up when it’s all over. Too bad - not a viable option. So glad you are doing better.
Heather - a good cry is a wonderful thing. And sometimes it’s the only way you can let out the frustration and sadness that goes with all of this. I was thinking of going out to the beach and shrieking at the top of my lungs into the wind, though. It might be therapeutic, too
Debra - how are you feeling today?
Hoping for a good day!
Nan
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Vilija: What a week! I also got feverish but mine was day 8-10 (I'm on taxotere/herceptin every 3 weeks.) My MO also prescribed Levaquin. He said sometimes when our blood counts start to go back up, we can get a low fever. Now we know to maybe expect it.
Thanks for the good wishes sisters! At the infusion center now. Everything's going fine. Good luck to anyone doing chemo today and here's to minimal side effects!
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ARmom4,
You are so color co-ordinated today !! Love that little hat and face mask. You're rocking it woman !! Going to be so much stronger on the other side of all this. Hope your treatment goes well with as few side effects as possible. You look great
Debra
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ARmom4
You look great! I love your mask and hat - polka dots are my fav
Sending good energy to you and lots of hugs. Nan
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ARmom4 - that is interesting what your doctor said about the low fever as blood counts go up. I take my temperature at least two or three times a day and have noticed a pattern just before the week after mark from treatment where mine goes up to around 99.2 - 99.6. After the first treatment I was concerned and was going to call the hospital the next day but then it was okay so I didn't bother. The same thing happened after round two on the same day (treatment day is Friday and temperature is more pronounced the following Thursday). How high did your temperature get? Was it low grade like mine? Glad you're on the mend. That's a great looking mask...so coordinated with your scarf.
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All: Thanks for the compliments! I made my mask myself with my lil sewing machine. The hat is a bandana tied in the front.
Sherri: My fever was running from 100-100.8. My blood counts are the lowest on day 10. The half way point. Would've been a good thing to know before I freaked out about it.
Had a reaction today to the second round of Taxotere. MO decided we'll do Herceptin only from now on. My body will not handle Taxanes. Lost hair for nothing! 😞 At least I won't have to worry about chemo side effects anymore. We'll go ahead and start Tamoxifen soon too. What a day!
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Friday Friday.
I had to make unexpected visit to clinic for urine test when I started to have some blood again...sigh.
I was really panicking last night and made emergency call to on call oncologist who again, was so ***blessedly calm***...I was relieved that I did not need to go to ER, etc. My heart rate was elevated and I thought for sure she would send me in. .
Nurse practitioner and team was alerted and called me this am to tell me what to do. They tell me that they've seen a few women who have this sort of reaction to the chemo...I had a urine test that is showing some abnormalities (trace blood, and a few other small amounts of "things") and so I'm off the the urologist's on Monday for further evaluation.
On the more positive side:
I was able to exercise today (danced to Milli Vanilli! Anyone remember them? They've got that great 1980's solid dance beat) for about 15 minutes -- and enjoyed it -- and my appetite remains great and I am in no pain and so I'd like to relax this weekend before the circus starts up next week with urology, pre-chemo checks/visits, chemo. This is not going to delay chemo next week they tell me.
Blessings to all...
Allie
PS All the pics are great!
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Allie: Oh no! But also, whew! I'm relieved (hey a urine pun, haha) that your doctor was calm about it, that you don't have to go in to the germy ER, and that you might be able to have a good weekend! Milli Vanilli... fun guilty pleasure music! Anything to keep us dancing and keeping our spirits up! : )
Kelly and Vilija: Great pics! Looking good, both of you. Kelly, hope you are feeling ok today and looking forward to hearing how you're week goes. Vilija, what a tough week! The outside triage tent- woah. Thanks so much for sharing all that, such a real look at all the craziness of what chemo patients are going through during this pandemic. I'm glad you're feeling better and look forward to hearing updates.
j: That is such great news to hear about your success with Herceptin! After all you've been through, I'm just so happy for you to feel like you might finally be on the right track. Big hugs!
Also just a little note to everyone else… I FOR REAL love reading all the posts and catching up—it's something I look forward to every couple of days! Meeting all of you truly is a blessing. I know it's sometimes nice to see your name in here, so I'll personally say hi to each of you, you know, just 'cuz. So, shout-out to… Sherri, Kris, Nan, Zarin, Erin, Debra, Katie, Heather, Lise, Claud, Les, Smitty, Justyne, Jana, pjb61, Shelley, Michelle, and anyone else I may have missed! Love you all and hope we can all have a pretty good weekend… and HAPPY MOTHER'S DAY to (almost, I think) all of you!!! You all deserve to be celebrated! Hope you treat yourselves in some way, and that your families take extra time to show you how much they love you! WOOHOO
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Jess,
You are such a doll! Thank you for the shout-out. I hope your weekend goes well and you feel good.
Na
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Ali - oh no, sorry to hear about your bladder. Hope the urologist can get to the bottom of it.
I was on a walk today and came across this collection of inspiring painted rocks. The bowling pin really stuck out and its message resonated with me. I thought it might for all of you too. Sorry, the first one is sideways as I couldn't figure out how to turn it.
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Sherri — the bowling pin ... Mother's Day weekend ... my Mom adored bowling ... she sent me a message through you❣️
🌈j
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Ladies, I have a question, please.
When I was first diagnosed in 2016, the common sequence for early stage was surgery, chemo, radiation (if lumpectomy; none if mastectomy,) hormone therapy (tamoxifen.) If a tumor was particularly large or in an awkward place and the patient wanted a lumpectomy, chemo before the surgery was considered to try to shrink the tumor to achieve a better medical or cosmetic outcome.
Now it appears the common sequence puts chemo ahead of surgery. Is this because a different standard protocol has been adopted or has Cvirus so limited the availability of operating rooms, breast cancer surgeries are being delayed?
🌈
j
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Thanks Jess !! This group is so comforting and supportive. I’m so grateful for the sisterhood 🌺 Enjoy your weekend Jess and Happy Mothers Day to all ❤️
Debra xoxo
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j - I can’t speak for all types of breast cancer but I do know neoadjuvant (administered before surgery) is now standard practice for triple negative tumours. I’m a long standing member of a group for women with TNBC and over the years the group has grown and we’re seeing most members getting chemo first nowadays. When we started the group in 2010, nearly all got chemo after surgery. I’m also glad the bowling pin made you smile. Something told me to snap a picture of it.
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ARMom4 - sorry you had a reaction to the Taxotere. Please don’t think you’ve lost your hair for nothing. I remember my oncologist saying to me to try one round and see how it goes when I was really apprehensive to do it the first time. He said even one round is better than not doing it at all. So you’ve already benefited. And, you are still getting the huge benefit of Herceptin. You know you gave it your all. I hope you are feeling better.
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Just doing a quick check-in ladies. Kudos to those of you who can keep up with everyone. I'm overwhelmed! Lol. But I do enjoy reading about everyone's experiences. And I love seeing all the pics.
Kelly, I love your coordinated mask and headcover! I've been making masks, too. I'm going to have to coordinate for my next infusion on Monday. You've set the bar high!
Vilija, what a crazy experience! As if we don't have enough to do. Hoping your next round is better!
Sherri, love the bowling pin! How fun to find that!
Regarding fever, I developed a low grade fever (99.9) on the evening of Day 6. Tylenol took care of it. I will be interested to see how this next round goes. I'd never heard that it can happen as your blood counts go up. But that would explain why several of us have had it happen around a similar time.
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God bless you all!
Sherri thank you and i love the dear little bowling pin and "kindess garden"...
Sore mouth today. Will try salt rinse along with the aloe vera rinse. And Biotene products.
Btw: tried Miralax and it worked great after first packet mixed in just water!
Very sore crampy lower back last night from dancing with Milli Vanilli! Maybe i should stick to singing with them!
God love you all...
Allie
Ps had to wear beanie to bed last night! Head cold! Hair is not just cosmetic!
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Sherri and Kelly - thanks for posting that about the low grade fever on days 6-7-ish. I had two nights this week where I woke up having sweated through my pj top - thought I was done with those night sweats! It was at that time, so I bet I had a low grade fever too. I never took my temp - but that makes total sense. I also hit my "low" on day 10 - my MO does a visit on that day and checks WBC counts. I'll go this Monday for Round 2 mid-cycle labs.
Jess - thanks for the shout out!
J - I am also having neoadjuvant chemo. I am triple positive and know that I have at least one lymph node involved from my biopsy. My MO explained that it all has to do with how "progressed" and aggressive they deem your specific tumor/cancer. Because I'm triple positive - the HER2 receptor makes the cancer more aggressive. I also had a 2.4 cm tumor - so I'm automatically Stage 2, plus the lymph node situation. So in those instances, they want to do chemo first to stop it in its tracks, but also to see how the cancer responds to the treatment. If they take it out first, they have no way of knowing if the chemo is doing its job. By having the chemo first, they can visibly see a response (or not) from the treatment. I will have another ultrasound after my 3rd round and hopefully, they will see some sign of shrinking, and perhaps the cancer coming out of the lymph node. Then they will know the targeted drugs are working and we'll finish. If there is no response, I assume we will switch gears at that point. I have a friend who went through this about 18 months ago - also triple positive, but her tumor was smaller and she had no lymph node involvement. In her situation, they did the surgery first, then chemo after.
Kris
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Hi all
Still here and on day #6. Feeling pretty good today. Pjb61, thanks for the tip about the fever. I'll keep a lookout for it. I'm up a degree or two from normal, which is a practically comatose 96.8. My MO likes to have his patients take their temps 4 x a day. I have to put an alarm in my phone to remind me. Feels like it's always going off. I was told by my oncology nurse that days 8-10 are when the white count drops and the immune system is at it's lowest. This is for Taxotere, not sure about other chemo drugs. And the cytoxin kicks in sometime right after that. So that is the critical time for fevers and such. Also for fatigue. Oh boy! Has anyone else experienced this?
Sherri - I love the bowling pin. I'm going to put it on my phone screen saver. I found a similar rock collection at the beach yesterday and took a picture. Not as many rocks as yours but still nice to see.
ARmom4 - how are you feeling today? Sherri is so right about some is better than none. I really believe that nothing is ever wasted. Even the most negative experiences help us to grow or heal or become better people. Granted, losing your hair ranks right up there with really stinks. I guess all of us here are either in the process, have lost it already, or are waiting in dread for the moment. But I see us all as a line of sisters, holding hands with the sisters that have gone before and will come after us. We hold on tight, not letting the ones around us fall, and somehow, we come out at the other side. We're holding on to you. Hope you feel better!
Allie - is this the first time you've had mouth sores? I haven't had them yet and have been careful to rinse my mouth every time I eat with the baking soda and salt wash. And I got some Tom's of Maine mouth rinse for the morning and evening. I hope I can avoid them, but I'm not sure if it's possible. My mouth tastes funny, as does everything I eat. I had some lemon sorbet last night and it tasted like icy dirty. I was very disappointed. It's hard to eat with canker sores
Hope yours go away quickly.To all of the sisters here - moms, daughters, aunts, nieces, girlfriends - Happy Mother's Day!
🤗
Nan
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Hi Nan,
My mouth has been "dry" starting sometime after first chemo session. Ya. I have been trying to rinse (but maybe not as often as I should) with "Natural Dentist" aloe vera mouth rinse since that is designed for bleeding gums. I've read aloe vera is supposed to be helpful for cancer patients too.
I have various things to help in my medicine cabinet and will try a salt rinse too. I'm not sure if I have actual sores or just a spot of bad dryness that is kind of on the side and underneath the tonge. It also has reach the throat and upper pharynx and so I'm worried now about a "sore throat" from something else.
Trying NOT to worry because I know that I will be seeing/talking to several people for prechemo and getting blood work. WIll also see the urologist for urinary tract issues (no pain).
Also, btw, I did develop a cracking soreness at my lips edge which I think is because of the toothpaste (i'm sensitive to whitening agents in them even before chemo and would get this cracking then too..) so I appreciate your suggestions. Going to do a drugstore order soon and I'll take a look around for gentle products.
I just think that our bodies get really beat up during chemo and tissues dry out and this is the result. Don't mean to be negative. Just sharing with the sisterhood. My hands are a mess so I have to step up using dishwashing gloves, etc.
AlliePS postive. I still have hair that is refusing to fall out! Kind of thrills me, those few little wisps. Had to actually blow dry them before I went to the clinic on Friday! I also cut them down this am and I don't look bad - it made me look forward to dreaming about getting a pixie hair style when my hair grows back! I've always wanted to try one but was never brave enough to give up my long, long, hair - even as a lady in her 60s! I had fought hair thinning after menopause and was very distressed with that and other hair changes but finally got control of it in the past year and my hair started to look pretty darn good for a woman of a certain age; and then this happened...so now is my chance to do something different! I want a wild and crazy pixie!
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Nan - I'm on Taxotere also, and my worst fatigue seems to be Days 5 - 8 (if you count infusion day as Day 1). Then I start to rebound. By the 2nd week, I felt mostly normal.
Allie - I'm using a toothpaste from a company called Oxyfresh. You have to order it, but it's REALLY gentle and has saved my mouth. I also use a mouth rinse by them and a gel that I use a night on any sore areas. The gel has been a game changer. My sister ordered all of it for me, but I'm definitely getting more. I have not had canker sores - but definitely bad dry mouth, especially the first 10 days - then it seems to ease up. I've had the sore-ish throat also. This time, in addition to my mouth being really dry, my tongue also feels like the tip is burned. That's easing up a little heading into week 2 of this cycle. When my mouth is dry, it almost feels like I have little crumbs in my mouth all the time, or something coating my teeth. It's maddening. I feel you on the dry everywhere. My skin is so crepe-y right now. It's gross. I'm lathering up with lotion a million times a day. Glad you hair is hanging in there! Mine is buzzed and sparse right now.
Kris
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oh Kris God bless you. I will look into your recommendations with zeal.
I send my best wishes to you.
Allie
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Hey Allie, Sorry about the UT issue. Hope that goes away quickly. Also the sore throat. I was told it was a common side effect of the chemo so hopefully, not an issue. I hear you about the hair. Mine has gotten thinner since I passed menopause and I let it grow long so I could put it in a bun. Now it's cropped into a chin length page boy and looks surprisingly good since my husband and I cut it at home. I should have done it ages ago. And why spend money on a hair cut when you can whack your hair off and get away with it for free!
I'm not sure when it's going to start to fall out, but probably end of next week. Then I'll buzz cut it. My daughters are on this, sending caps and scarves. I think I might go with a totally spiky thing once I have hair again. Would be fun to try new things - maybe a tattoo (or not).Kris, thanks for the info on the day 5-8 thing. I'm on day 6 and doing pretty well right now. So maybe I'll duck it? Who knows. Have to wait and see. I was really tired on Days 3 and 4, legs like lead. One thing I do notice though is that I can hardly wait to go to bed. It's 730 now and I'm counting the minutes. Maybe that's the way it'll manifest for me. And I don't get up until 730 in the morning. I wore my Fitbit to bed the last couple of nights and I logged 9 ½ hours of actual sleep. It was heaven! What is the name of the gel you're using?
Best wishes to you both, and to all of the sisters.
Nan
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Nan - sounds like you're having some fun with you hair! Good plan so you can get a sense of styles for when it grows back. Mine started falling out on day 21 -- the day before my second treatment -- and continued for about a week. Now it's stopped falling out and I just look like an old man with a few stubborn grey stubble that didn't come out.
Sherri
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God bless you all! Allie
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Jess- I'm feeling fine. Just a little tired. I recover fast when I have a reaction. I have a tell- tell sign when I have one so they're able to quickly reverse it as soon as I feel it coming. I should have an easy time seeing as I only got about 1/3 of the dose of Taxotere. Side effects should be minimal like when I reacted to Taxol.
Sherri- At least I tried right? I tried with 2 different chemos and my body said NOPE! I could try to keep going and switch again but at some point the risk outweighs the benefit and my cancer was so small hopefully the Herceptin and Tamoxifen will do. The hair is a bummer but at least it'll start growing back sooner!
Nan- It's just a little frustrating necause I lost it without getting ALL the benefits. I got a total of 3/4 dose of Taxol and 1 1/4 dose of Taxotere. Hopefully that's enough. Love what you said about this line of sisters. I don't have anyone besides my husband and my mom(and kids but they're young). This group has really given me something to look forward to, people to talk to, and support when I need it. I am so grateful.
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Kelly, I understand your frustration. If you’re going to put your body through pain and lose your hair, etc., you want the full medical benefits. However, you gave it your BEST and that’s all any of us can do!
Allie, try Biotene mouth wash. It’s been a life saver for me.
Kris, I’m like you. I seems to struggle early right after chemo. Days #3-6 were my worst. Im on Day #10, and for the most part, I feel good in terms of chemo side effects. I’m still struggling to recover from the sentinel node biopsy. I’ve got some swelling going on and may have to go to the doctor to have it aspirated.
I want to wish everyone a very happy Mother’s Day tomorrow! Mother’s Day is always a little difficult for me. My husband and I tried unsuccessfully to start a family, so we underwent fertility treatments a few years ago. Unfortunately, those were also unsuccessful, and to add insult to injury, my doctors now believe that those treatments may have contributed to my getting cancer. There’s a sick cynicism in paying for unsuccessful fertility treatments only to get cancer and induced menopause in return. 🤦🏼♀️ However, I know that God’s will is perfect even when I don’t understand it. So tomorrow, hug your children (even if you have to do it virtually) and tell them how much you love them. Don’t take them for granted. ❤️❤️
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Wow Les. I am so sorry. Bless you.
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