Chemo starting October 2017
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No cough Sara. But random gut pains. I figure chemo does weird things to our insides. Additionally. Who has hair where?
I’ve got my arm hair, my brows, lashes and bangs along with a few wisps. BALD everywhere else. It is so interesting to me how we are so different. On the plus side no shaving. Kind of like that!
Sara
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I've got no leg hair, just a few stray underarm hairs & a minimal amount of fine arm hair. Still have my lashes, brows & pubes. On day 6 after i started shedding I cut & then shaved my head because my scalp was so sore & sensitive. Didn't get a real close shave, so shaved again a week later because the stubble was annoying. But now, 3 wks after initial shave/2 wks after 2nd shave, it still seems to be growing. Looks to be between 1/16 and 1/8 inch long. So I decided if it wants to keep growing, I'll let it.
It appears that maybe I wouldn't have lost ALL my hair, but I just couldn't deal with the scalp discomfort & was sick of spending most of my time in the shower just trying to get the hair untangled from my hands.Had AC #3 today followed by a 1-hr Reiki session. For the first time, I actually dozed off during Reiki. I woke up suddenly when I heard a door close out in the hallway. My head popped up as I looked toward the sound. Since I live alone, hearing a door close while I'm dozing would put me on high alert. It took me a couple seconds the remember where I was because I woke up thinking "The bedroom door is closed, but I never close it while I'm sleeping." Then I realized the door was the wrong color & in the wrong place in the room. When I looked toward where the door should be, that's when I noticed my Reiki therapist. I think I gave him quite a start. LOL.
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Petey-I have read about "chemo cough" as a SE. I am battling a lingering cold for the second time with coughing fits. Really the only reason I know it's a true cold is my family is all the same. I take the Coricidin cold and cough because the non HP pills make my heart beat too fast and its already beating faster than normal due to the anemia I am struggling with.
Hair: Yes on arms, eyebrows, eyelashes and about 1/2 my pubic hair (first place I lost hairs but then it just stopped?)
None in arm pits, legs, nose, pesky facial hairs.
Very thinned out buzzed head. Not smooth bald but I have spots that are.
I heard taxol can cause peach fuzz especially on face. I bought one of those flawless finishing touch in case. Have not taken out of box yet.
I figure for hair re growth, it will be summer before my head will have enough to go without hat/wig and 2 years to get to a length I am comfortable with.
Kim- I am not doing a flap. Not an option where I live. I would have to travel 3+ hours for it and the sugery/appts would be too hard being out of town for my family, I have a small child to take care of.
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Jennifer, ok gotcha. When I read longer surgery I assumed it was the flap. I had my double 9/27/17. Hate the tissue expanders. I will not be comfortable until these suckers are out.
Hair, patchy baldness, but I buzzed to 1 inch weeks ago. I thinned everywhere else but not gone. 18 years ago with adriamycin and taxotere, complete baldness anywhere there was hair.
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Hopefully, the cough doesn’t stay long!
I’ve got light arm hair, eyebrows (thinner) and eyelashes (thinner), a bit of random fuzz on the head, no under arm, mostly no leg except random hairs hanging on, and most, but not all of pubic hair gone.
I now look like I have a mustache, but that’s skin coloring! Blech
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Hi, everyone. Hope you guys are having a good weekend with gentle side effects!
I just had my 2nd DD Taxol on Friday. I asked my MO if I could skip the Neulasta shot this time since I am going to have 3 weeks to recover since getting Christmas week off :-) However, I'm flying cross country right when I'll be at my nadir. So, we came to a compromise that I'll go get my levels checked next week and if they are high enough I can skip it, if not, I'll get the Neulasta shot then. The good news is that my MO said there's evidence that the SE's of Neulasta are reduced when it's administered off-kilter like that. It would suck to have that bone pain on Christmas. As of now the only side effect I have is a burning rash on my inner arms and thighs. Lovely! But the tumor is still shrinking so I'll take it.
My really big, good news is that I'm hopefully going to switch breast surgeons. I've had a nagging, growing discomfort with her and I was starting to get really stressed about it as my surgery approaches. After a lot of miscommunication and lack of follow through, the deciding factor for me was at my last appointment with her when she off-handedly mentioned just how much the cancer had invaded my pectoral muscle, as if she had already told me this which she hadn't. She had told me after my initial MRI that it was barely grazing it.
I say "hopefully" switch because I found out a disturbing policy at Sloan Kettering. They don't let you change doctors once treatment starts. Their rationale is that all their doctors are equally able to execute the procedures that the medical teams have discussed and decided for each individual. There is a process that you can go through to request a change through their patient representative department but the head of the medical department will decide. It is rarely granted.
However, I had a long talk with my MO about the issues I was having with the surgeon. She agrees that it is best for me to change so she is going to do the appeal on my behalf. She says they are unlikely to deny the request if it comes from her. Because I've spent so much time with her she has a good handle on what I would need from a surgeon to feel secure and confident. We discussed a few options and it came down to 2 that I feel very good about. I'll go with whichever one can see me first. We also discussed RO's so I'll meet with him before surgery so I can learn about radiation options.
I can't tell you what a relief this all is and how much better I feel!
I'm just catching up, so sorry these replies are a little behind:
littlebee72 - I'm sorry you are having a rough time on the DD Taxol. I'm on the same regimen and had really bad bone pain days 3-7 but attributed it to the Neulasta shot I get the day after infusion. I just had my second infusion Friday, this time without a Neulasta shot, and some muscle cramping and pain in one thigh, but much better than last time. I get out of breath easily these days, too. I hope it gets better for you, too.
petey111 - my go to drink is very weak iced tea with a little lemon. I just need a little flavor but not too much caffeine. Unfortunately my stomach balks at anything with bubbles. I have a dry, tickly cough, too. I am a little over taking so many drugs so I decided to go the homeopathic route for this. There's a cough syrup called "Chestal Honey" by Boiron that's been working really well for me (and it tastes good!)
seemaryrock - Congratulations on finishing up! That's great. I'm sorry about the headaches. I've had headaches but I think mine came from sinusitis that took forever to go away and dehydration (that's the back of my head pain for me.)
LisaRX - I got the Wunderbrow gel you suggested. I used it yesterday and it's great. Thanks for the tip. A few of my lashes are gone, but so far my brows are holding on but I'm happy to have this gel.
Have a great Sunday everybody!!
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Agatha - I'll look into that cough medicine! Thanks!
I really, really, really hope you get to switch. It stinks to be uncomfortable about something so important. Thinking good thoughts for you and your counts!
Today was a family Christmas party and my birthday. By now, I know my cycle though and I knew that today would be a hard day for me. Fatigue, nausea, bone pain, etc. And it was. I was distracted for a while at the party, but I hit a wall by third hour and was ready to get home! Now, I'm counting the minutes until Advil and compazine and then I'll go to bed.
I hope everyone else has a good start to the week!
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Anyone have ringy ears that are worse when tired? Not dizzy. Just ringy. New SE??
To perpetuate all the Canadian stereotype, sitting at home waiting for 30-35cm of snow to fall over night. It will be a white Christmas after all 🎄🎄❄️
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Sara, yesterday I woke up to my right ear acting like it was an echo chamber. I couldn't understand a word anyone was saying. When I got up and about, it turned into a ringing ear which lasted all day. I tried some ear drops because I've gotten a lot of ear wax coming out of both ears, but it didn't help. When I woke up, it seems to have gone away today, but that was a completely new SE for me. Yippee!
Congratulations on your white Christmas.
Today is my first quasi-normal day after another horrible weekend on Taxol. I'm getting weaker and losing weight because nothing tastes like it should again, maybe because my nasal passages are so clogged with mucous and blood. I'm so tired of feeling tired. I need to have a discussion with my MO about why they are putting me on 12 rounds of Taxol when that is normally indicated for post-surgery node-positive people. They cannot even locate my tumor anymore, and there was never any evidence of node involvement. I feel that by agreeing to do neo-adjuvant chemo, they are treating me very aggressively with absolutely no evidence to justify it, other than the fact that I'm TN. I am having a very hard time tolerating this Taxol and my quality of life is suffering.
Sadly, because it's the end of the year, I won't even see my MO until January 10th, which is 4 treatments from now. I don't know how I'm going to get through another 4 rounds.
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lol Joy enjoy your snow just a dusting here. First real cold day here today. We been weather lucky so far. So SE this time around... My hands have no strength and fingertips are sore. Muscle fatique is terrible scared to just walk around the house. Had hubby supervise my last shower. I hope it doesnt last. Other news sleeping much better this chemo round. Happy about that. Heartburn still an issue taking meds for it. Helping but have to be very careful to what i eat.
Hair... I have strange peach fuzzy non soft head. Kinda growing but not really. Legs bare. Armpits have like 6 hairs total left lol arm hair not effected. Brows n eyelashes thinned out but still there. Pubic hair.. Some left and growing
Take ❤ care dalrings thinking about all of you.
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It never ceases to amaze me that our side effects really are as individual as we are.
Question. I need to get moving. I have been walking everyday but I’m hesitant with the newly fallen snow and the newly healed broken ankle. Does anyone know if I can swim? I was a competitive swimmer in my youth and I love lane swimming. But I’m wondering about the germs? Thoughts?
Sara
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Joy i bet its like anything else when your immune system is good and feel up to it go for it swimming is the best.. Therapy. I would phone and ask your MO Nurse tho.
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Every once in a while, my head "fills up". It's not like ringing, but it's full and pressure-y. I can hear my heart beating, etc. Sara - I have to imagine that swimming would be fine, but I bet if you call you'll get an answer from the staff. Lisa - same to you, I bet you can call and talk to your MO, they need to know how you are doing.
I felt awful last night. I was super achy, freezing cold, a little pukey, my blood pressure was high....it was just a mess. I felt better when I woke up this morning, but was still sore and pretty tired. I get my blood drawn today, so I'm sure that my numbers will be a little low, but oh well.
I decided to watch a movie and bake cookies this morning, then realized I am out of eggs. :-( Oh well, I'm just being lazy now and watching While You Were Sleeping. I'm trying to feel more Christmas-y. It might snow on Thursday, maybe that will help. This just feels like the weirdest Christmas ever.
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HAPPY BIRTHDAY, PETEY!!!
And thanks for the encouragement about changing doctors. It really is a big deal for me.Sara Joy - I've had some ringing in my ear (just one side), but chalked it up to my eternal sinus infection. It's so hard to tell what's chemo related and what's just regular life stuff these days. I hope you get cleared to swim.
LisaRx - I'm so sorry you are having a rough time on this Taxol. It must be very difficult to repeat that awful first week over and over without the chance for a recovery week in which you feel better. I hope you and your MO can figure out something to make it better. It's hard for us TNBC'ers since they want to throw as much as possible at us. Hang in there - we have you!
Have a good Monday, everyone.
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My 2018 planner was delivered today. The cover I chose seemed fitting. Planners/crafts use to be a big hobby of mine that I abandoned in September when everything started to happen. I figure I need to get back into my regular life instead of cancer 24/7.
I have worries that my doctors plan is right? Am I (are they) doing everything to take away this cancer and prevent reoccurrence. I go back and forth between positive and negative emotions. I guess that is pretty normal.
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Sara joy, I get the echo chamber probably most days for 1/2-1hr. It's on my more dodgy sinus side. So pre chemo but way more often when on chemo. I have noticed it's more common when at work and I haven't drunk as much water, weird but a pattern.
Lisa, triple neg also your grade 3, so probably why they're hitting it hard.the chemo is for the stray cells that may be floating around elsewhere in your breast. Keep fighting.
petty, happy birthday and good luck with your bloods!
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Sara - I walk around the house with a stepcounter. Walk at least 10,000 steps a day except on chemo day cos really drowsy.
Lisa - Sorry that u having a tough taxol. Did 11/12 taxol yesterday. SE are gassy stomach, 4hrs/day sleep, some neuropathy/fatigue. But I haven't had my AC yet. I probably will have tougher AC than u cos cumulative. I know of a triple+, 1cm, no node involvement. Her MO prescribed 12 weekly taxol only but she wanted more so added AC. Perhaps treatment differs cos triple+ has 2nd line treatment - hormonal therapy.
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Well, this was the day from hell.
Today was my third of 12 weekly Taxol infusions (after completing 4 bi- weekly rounds of The devil AC.). First met with the NP. I am having frequent spells of dizziness, light headedness, nausea, profuse sweating, and cramping after doing the slightest amount of activity - like walking half a flight of stairs. She immediately ordered an echocardiogram to compare with my baseline echo done in September. (I am also getting perjectin and herceptin because I'm her2+ - which can both be hard on the heart.) Did the echo but she said no more herceptin or perjectin until I meet with a cardiologist. That happens tomorrow.
I was scheduled for Taxol only today, so off I go for chemo. After they administered the pre-meds, I went off to la la land because the benedry does that to me. I was rudely awakened by the most excruciating lower back pain - much like being dilated to ten pre - delivery. I called for the chemo nurse and immediately upon looking at me she called out " We have a reaction". I was immediately surrounded by all five nurses in the unit who were scurrying about taking vitals, charting stuff, preparing the antidote and comforting me to breathe as if I was in labor. I'm crying, writhing in pain, embarrassed. Mind you, they had stopped monitoring me for a reaction because I never had one with the first two. It took the five of them 10 minutes to stabilize me, they even turned the BP monitor away from me Because they didn't want me to see the stats. For that, I was grateful. That was one long ten minutes.
As it turns out, they had reduced the steroids (used to avoid a reaction) in my pre meds because they are hard on your heart and thought that was contributing to the first problem mentioned.
This team of nurses was amazing. After all the drama was over, I finished the Taxol infusion and I have only 7 more to go. Geez - chasing this cancer feels like pedaling a bicycle to the moon.
End of story
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Simbobby. All I can say is (((hugs))))
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hugs Simbobby.. Having a reaction is super scary. Happened to me 2x. Well the second time something wasnt right with my IV and i pushed the emergency button then fainted lol nurses came a running. Just thinking about it has me panicking can you say PTSD? I take benadryl at home for 3 days after chemo i continue to have reactions at home. Just fyi incase your not feeling right. Hugs
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Greetings! Hope everyone is doing okay. I have my second of 4 DD Taxol treatments on Friday. Not looking forward to it as I’ve had neuropathy immediately following my first. It’s a little better now but I’m not sure how it will be as I head into my next infusion. Will do all the icing as has been suggested as well as taking meds and supplements recommended by my MO.
Otherwise I’m okay. I will be off from work until Jan 4th after tomorrow. So that should help.
As far as hair goes, I’m pretty much hairless except for my eyebrows and lashes— the brows have thinned out a great deal though. I have a few sprouts of hair on my head but I’m pretty much hairless everywhere else. I’ve been wearing hats and I feel comfortable with them.
Well, that’s all for now my friends. Have a lovely night and if I don’t get back here before my infusion have a lovely rest of the week!
♥️
G
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Boy I sleep off low blood counts for 5 days and I can't believe how much I've missed!
Simbody-- I hate to hear you had a reaction. Glad the nurses were there to get things under control so quickly (though seemed like forever at the moment)! I'm curious how they will proceed with your future infusions. Please let us know how you are doing.
Agatha-- Go with your Gut! If your instincts are telling you to change docs, then make it happen. Where there is a will, there is a way. Great book out there called Radical Remissions-- and they talk about 10 things 1,000 patients that experienced radical cancer remissions did in common and two of them are 1) Listen to you gut and 2) Be your own advocate on this journey. You are the captain of the ship and get to choose who is your 1st mate (& 2nd, & 3rd)! You got this! Can't wait to hear how unfolds for you! 🚢
Lisa-- sorry taxol hitting so hard. These drugs stink! Do have convo with doc. I ask A LOT of questions to multiple docs, and have learned for them it is more about administering a proven drug protocol. "This is what works" on a grand scale, and don't necessarily take into consideration the patient's personal cancer, body, internal make up, lifestyle, etc. I haven't studied TN as much, so I cannot chime in with more specifics, but a good point was made that chemo is one of your biggest allies in eradicating it. Good luck! 💪🏼
Sara joy-- I Love how you are the great conversationalist! Always bringing great questions to the thread! Quick sum on hair-- I'm trying cold capping, so hanging in there thus far-- lost about 20% so far-- pics are on the cold capping thread if curious.... or perhaps will post one here in time.... my hoo hoo is around 1/2 gone, brows and lashes thinning but think with TC they totally vanish several weeks PFC....leg hair shaving once a week if that, and arm hair in tact, pits no. Re ear ringing-- hadn't had such, but I do have a ton of eye twitching and eye exhaustion. Cold temps and dry air can be contributing. Love hearing everyone else's comments!!
Well, I head in for TC #4 this morn. #3 hit me hard and hoping this one isn't so bad, but I'm prepared to take it on! I have 5 days to shake the worst of the SE because it's Christmas Time!! I will get a pic of our tree up to share holiday joy as per Sara's sweet suggestion that we all share a piece of our holiday ❤️ With each other. And Lisa, quick share that I am seeing an Integrative Onco on 12/26 to discuss further about my drug protocol and my fears of the risks of overtreating.... more opinions help me feel best about going through all of this (a 2md time!. Keep you all posted on that as it unfolds.
Happy Tuesday to all! Chemo #4-- Bring It On!
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simbobby, how scary for you, great action from the nurses! And you didn't miss out on the chemo. Hope you get the answers you want from your cardiologist.
Sara, I kept a few mm sparse cover of head hair with some long wisps, a little regrowth while on AC which I attribute to dose delay and reduction and mine is 3 not 2 weekly due to cardiac history. Pubes 1/2 gone, underarm gone, legs slow growth. Eyebrows and lashes normal and facial hair yep kept that.
Jennifer, I definitely go from positive and hopeful to thinking I'll be in the bad stats bunch. it's all about processing it really and letting ourselves feel the emotions and react to them rather than suppressing them.
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LisaRx I feel so bad about you suffering through your Taxol. That's how my AC was and I know feeling sick week after week can get you down. Hopefully your MO will adjust your dose. Mine reduced my Taxol and it has been great. Now I worry that it's strong enough to kill the cancer. Maybe she will gradually bump it up again, but it was really nice even having a few weeks or feeling normal. Prayers are with you.
After 6 AC and 3 wkly Taxol most all of my hair is gone. Pubs about half, stubbles on my head, eyebrows and lashes about 50%. I have to say I love how smooth my legs and arms feel (like babies skin)
Even though I have iced my hands and toes, I see my big toe nail is turning black near the cuticle. It is also lifting at the sides. My fingertips are tingling and numb. I keep dropping dishes. I bought some rubber gloves for better grip. I also noticed at our family Xmas party my hearing is very muffled. No ringing but muffled. People were talking to me and I could barely hear them.
Most days I can taste my food and that yucky metal taste is gone. I also am very gassy and get acid reflux. The peptide has been working well. Like many of you, I tire very easily and also feel unsteady on my feet.
I guess I will take these little SEs over that horrible nausea any day. #4/12 taxol tomorrow. The weekly appointments are moving along fast.
My MO said to plan a relaxing get a way after Taxol and before radiation. (I guess I will have a few weeks off) What are your BIG DREAMS of what you will do when you're done with treatment????
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Simbobby, wow, that's so scary! I'm glad you're okay. Funny, they don't give me Benadryl anymore, just Pepcid and 1 steroid pill. Good luck with the echo. I had a 2nd one done after finishing AC and it seemed okay but I have real issues with panting after the slightest bit of exertion, such as getting the laundry out of the dryer. 6 weeks ago, I was walking 5ks with ease. Now I can't vacuum without feeling the need to sit down afterward. I assume it's the chemo and that I haven't gotten that out of shape in a few weeks.
(FYI, your math isn't working. If you've just had your 3rd of 12 Taxols, you should have 9 left, not 7. (I'm on roughly the same schedule as you.) Not trying to bring you down, but keeping it real!
All, so happy to read all the positivity coming through. I'm day 6 past my 3rd Taxol. Doing these weekly infusions, it begins to feels like Groundhog day, or rather week! I still loathe Taxol but am trying to learn some better coping skills.
For instance, I know now that I'll be feeling horrible on Thursday and Friday with no one at home during the day to help me, so I've earmarked a few Netflix series to watch and am making sure that I have plenty of ready-made meals available. My dear friend also brought me an electric blanket, which has made a huge difference in my comfort level. So I'm not going to stress about it; I'm just going to try and get through it. Saturday is still bad, but I'll have plenty of help. Sunday is my transition day where I don't feel completely wretched but still need a nap or two. Monday and Tuesday are my best days (I stayed up til 10pm last night!), so if something needs to be done, I know I need to get it done on those days.
Chemo still sucks, but I know other people have it far worse than me, so I'm going to try and adopt the "Bring it On!" attitude too.
The silver lining is that both Christmas and New Years Day fall on my good days. The bad news is that 6 big events (2 family parties, 2 weddings and 2 charity fundraisers for causes that are dear to my heart) all fall on Friday or Saturday before I'm done with Taxol. I'm just going to have to accept the fact that I won't be able to attend. It'll make the events I do attend sweeter.
I'm still struggling with nutrition. I know I'm anemic, so I've been trying to add foods with iron in them, but it's getting harder and harder because I'm starting to get serious aversions to foods, even ones that I used to love. I feel like I'm pregnant again! Anyway, I've thrown in the towel and bought a case of Ensure. I know it's not ideal, but it's one of the few things I can tolerate on my bad days, plus it's a liquid so it helps keeping me hydrated, which I also struggle with on the days when I can't get off the couch.
57 more days of chemo!
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I love hearing everyone’s experiences. I don’t love that we have breast cancer, but your stories are rich and real and keep me hopeful. Here are my joyful things including my post chemo celebration plan:
1. I’m refinishing 6 antique chairs for my farmhouse table. I can only work about and hour but after yesterday they are ready to paint.
2. It’s beautiful here with the snow. I also was gifted a heated blanket. I’m feeling less guilty about The Crown, tea and my couch.
3. I am taking my daughter to show at Spruce Meadows on Feb. 16th. My last chemo is Feb. 8th. I don’t care if I have to sit and drink tea the whole time, I am going
I should hear at my next MO appointment about my Rads referral. I’ll be glad to get that info as it will require a 1 1/2 hour drive each treatment. So I would like to get this organized.
This girl, was amazing last night 😍
Love to you all,
Sara
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Sara, just finished S2 of The Crown on Saturday! Loved it!
(Spoiler alert if you haven't seen the episode dealing with the Duke of Windsor (King Edward VIII, who abdicated the throne to marry Wallis Simpson):
In fact, there's another show on Netflix that explores more deeply the Duke and Duchess of Windsors' relationship with the Nazis. It shouldn't shock me, but it does that they sheltered him instead of arresting him for treason. :0 It's worth a look if that intrigues you at all.
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Lisa. What’s the series called? I love historical fiction. That. And Lindt chocolates have been my comfort things through the bad days of chemo 🤪
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Agatha, fingers crossed for your switch and echo!
Simbobby, what an experience. I'm so sorry that Taxol is being hard. I hope the rest are uneventful. Same thoughts to everyone else on Taxol!
Sara, I have that cough too. It's been around since just before #4 and isn't productive at all. I don't have it all the time but it sure is annoying.
Lisa, I'm not sure if everyone does it the same but I can tell you what happened with me last week. My radiation process started Monday with a consult with the radiation oncologist. We talked for about 40 mins, reviewing my history up to now which she had read up no but had some holes that I filled in. Then we talked about what she recommended in terms of treatment and agreed on the course of action. She also went thru side effects with me and made sure I didn't have any unanswered questions. I also met the RN who will be there for pretty much every treatment visit too. She talked to me about creams, gave me a tube of the cream they want me to use, and talked thru the first procedure, which I had 3 days later. Thursday the radiation techs (there are always 2 there) did a radiology "simulation" in a ct scan machine to measure me and plan where I will physically be for every treatment. They made a plaster mold for me to lie in. It was in this huge plastic bag that they mixed up, had me lie in while it was still liquid (which by the way was awesome because it was WARM for like 10 mins yay), and then moved me and my arms around to eliminate skin folds until it set up. I'll lie in it for every treatment. The last thing they did was give me three little dot tattoos with a needle - one on each side of my breasts and one in the middle. Just a tiny ink injection so that they can line me back up in the machine every time. So yeah now I'm a cool mom with 3 tattoos LOL. I start radiation on 12/26 and have 30 treatments so barring any issues should be done 2/7.
I'm off to wrap some christmas presents. So glad to be having a break from treatments over this holiday. Hope everyone is having a good week!
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