Chemo starting April 2018
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thank you GAWarrior, yes I saw that too..why is that I wonder. Most people I see are on Taxol and AC..
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Hi, NoteRed, what is FEC?
Dee
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astyanax66 its also called CEF and there are 3 drugs:
- fluorouracil (also called 5FU)
- epirubicin
- cyclophosphamide
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Hi GAWarrior,
Thanks so much.
My wife, like you, just wants to get going again on this and get to that bell ringing.
I hope your T infusion goes well this week with little or no SEs.
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Thanks! I am not at all familiar with the protocol--seems like everyone I know has gotten AC and/or some sort of taxane. I'm sure it has to do with subtypes and physician choice.
Dee
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hello again Deb I am in Greece so maybe there is a different choice of treatment:
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Hello all,
Taxol 4 day 1. I hope everyone is doing good and have manageable SEs. I feel so tired after this infusion. Just in general tired. My mouth feels dry and bitter.
FEC-T is given here in NZ as well. The EC-Tis quite similar to the AC T. The E part epirubicin is similar to A adriamycin. E works slightly better with adjuvant chemo.I do not know much about the F part.
GA Warrior, dip your fingers in vinegar and water. 1:2 ratio. It really helps. Also, I read an article which says people undergoing weekly Taxol have more issues with nails. Taxol weekly makes nails sensitive to UVA and UVB. Its a good idea to paint them with dark colours to protect from sun damage.
Eyebrows and eye lashes have thinned quite a bit. I am hiding under the fake bangs. 8 more to go.
So anybody see any hair growth yet
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Hello.
Frog-on-a-lilly-pad I am on my 3rd taxel of 4 and my energy levels are low. I tried to ride a stationary bike and lasted 10 mins. Heart was pumping and I was so tired. Been having episodes of short of breath when I do anything. Been trying to do laundry and dishes today but you would think I ran a marathon! Jimmy crickets!
I am all about sharing rad information as I go through it with everyone. I believe I will start sometime in July.
GAWarror best of luck to you on first of taxel. I still like it better then A/C.
Welcome aboard NoteRed!
Happy Early Birthday Engine! Hope you wife is allowed to carry on with her treatments very soon!
Feel like I am missing quit a bit out here but I am struggling with a foggy brain and exhaustion. I will revisit and try and catch up better after I start feeling more clear headed.
Here is hoping SE are few and far between this week for those having an infusion.
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Hey everyone,
11/12 rounds of Taxol in the books. I've noticed that unlike round 1-7 or so, the side effects are starting sooner rather than 24 hours later--not worse, really, just quicker onset. Cutting back to 4 mg of steroid continues to be a good idea, pre-infusion. I am having a bit more neuropathy, but it's not painful, just annoying. My new meds for joint pain are helping, but I'm being conservative with them.
It was sad today--you guys know the place I go has a wonderful staff, but it's definitely not fancy, and we can hear and see everything. The poor lady next to me apparently has bone mets, and she was begging for pain meds. They brought the oncologist up to talk to her (they never come up to the infusion room; in 11 weeks, I've seen one twice up there)--to get strong meds (Iike liquid morphine), she'll have to get a referral to pain management. Obviously I don't know the whole situation--there may be way more to the story. Kind of horrifying--the nurse kept telling her they had to be careful with the ongoing opioid crisis and all. I don't say this to scare anyone, just that I was sort of shocked. I hope she will get the treatment she needs, whatever it may be (like I said, I don't know the whole situation).
My favorite nurse wasn't in my pod today, but she stopped by to congratulate me on one more week of Taxol. Yay!
Frog, hope your fatigue eases a bit. I have walked only half a mile a day, most days. I just cannot handle more. I took a 2 hour nap last Sunday. The onco NP said rest, rest, rest as much as possible, with some short walks each day. I envy that you are in winter!! It was 37 degrees Celcius here today--yuck. I have been drinking loads of water.
Life--wow, 10 minutes on a bike is pretty amazing, in my opinion!! I used to ride a few times a week, and it was great exercise (I kinda like how it gets your whole body involved). I have great plans as soon as I get back to campus where we have access to a free gym. If you start a rad group, I'd love to join, though I'll be a week behind (the simulation is in July, the rads on August 7).
Hope everyone has a positive week. Take care of yourselves and each other. Rub on a pet to lower blood pressure--it works for me, lol.
Dee
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Still not sure if we'll be starting round two tomorrow. My wife's incision is still draining slightly so she called the oncologist. He said since the drainage is slight and clear, he is not too worried, but he wanted to speak with the surgeon just to be sure. At the end of the day today, the surgeon hadn't called back, so they said to come in at 8:00 as planned and they will page the surgeon. They must be pretty confident that he'll give the ok because they are mixing the TC.
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Astyanax66. That poor lady! Puts my pain right into perspective for sure!
Came to the conclusion my breathing problem is probably the high humidity and smoke from a near by fire. I live in a state where it is usually real dry. I am super tired though. My nails are lifting off the bed worse then before. One more treatment to go! UGG!
My boss keeps as asking me if my eyebrows have fallen out yet. I am thinking hello have ya notice my head is a little bald over here. Some ppls kids. Lol
frog-on-a-pond. You had offered some advice on what I can do for my nails. I am having a hard time finding that post. Can i trouble you for that info again?
InnaB I check out the show! Laughed and Laughed! Not what I expected at all. Will be tuning in for the rest of the story for sure. Thanks!
GaWarrior Good Luck Tomorrow! Will be thinking about you.
Fur babies are the best to love on fir sures!
Well it's off to bed for me! Sleep well everyone!
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Dee—so sorry about your experience but congrats on having the end in sight!! While I’m excited to have #6 coming up this week, sometimes it feels like six more weeks is still a long time. Anyway—this too shall pass. .
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Life, I told you you’ll like it! We all need some laughter in our life!
So sorry for the poor lady with the bone mets. I hope she feels better soon.
Not looking to the third AC next week.
My hair is gone! / I have no hair / It wasn’t much / But it was there...
My husband says I look like Demi Moore in GI Jane. I wish...
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InnaB2018 - my husband also loves my bald head. Although with 3 rounds of TCH still to go I've got some hair starting to grow back. I told Hubby I think my body after enduring RCHOP 8 years ago was initially shocked by the return of chemo and then realized this regimen is much easier to take and said "oh this is all we're getting this time? Bring it on"
I know there was talk of nail treatment - Most are using Nail Envy by OPI - I've started using TLC (treat, love and color) by Essie on my fingernails and Sally Hansen Hard as Nails on my toes. Plus I'm keeping my nails very short because they split and break as soon as they get any length.
GAWarrior -I did a 3 mile walk/run yesterday. It took me 45 minutes and I cried a lot because it was my first time at park since losing Duffy and he loved that park. Now that I'm feeling much better I hope to at least get out and walk/run a few times a week.
I've been wearing my compression sleeve a lot because the edema in my arm is still bothering me. Not to mention the edema in my belly. I did my measurements and no wonder my summer shorts don't fit. My waist is 2 inches bigger and my thighs are about an inch bigger. My weight has been steady so I'll have to bring up all the issues with swelling with MO to see if there are any options or if I'll just have to ride it out. Anyone else dealing with the Taxane edema? I'd love any options except reducing sodium. I"m sorry but salty/spicy foods are the only ones that taste good. So remove those and I'm left with meh. I have increased potassium rich foods and my water intake.
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Hello all again. I had my #12 taxol last Friday. and now waiting to start FEC as I wrote.
So far the SE that I 've had was: hair loss, joint pain (not severe), fatigue, a feeling that I'm tired but I could not rest, twitching before going to sleep,constipation or diarrhea, hemorrhoids and rectal bleeding (which sorted out with a cream my onc gave me) visual migraines, and some ocular disturbances (like flashes, floaters etc). Also after 9th infusion I have a pain at the start of my nails which is getting better when applying hand cream on them... what I have to tell you is to be patient and its doable. also be in touch with your onc for every little thing you notice...there are solutions for almost everything. Did you have any of the above so far? I also believe that some of the above was due to my anxiety...
I'm now waiting with some anxiety the FEC treatment...
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I will have 11 of 12 Taxol on Thursday. On July 2 i will find out what surgery I get. Surgery is set for July 26. I have worked through the taxol, herceptin and perjeta treatment. I will go on short term after the surgery. a little nearvouse on what surgery ill have
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Life, I know it's definitely hard to breathe in our humidity--I spend a lot of time inside. Smoke blowing around must make it worse!
Ingerp, rounds 6-11 seemed to go a bit faster. I'm not sure why, but I hope it's that way for you as well.
Inna, I'm so sorry about your hair. It was a nice compliment about Demi Moore, but still--so hard.
Engine, hope the treatment is able to proceed. Everyone getting infusions today, hope it goes well.
Dee
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After consulting with the surgeon, our oncologist decided it was ok to do the second round of TC today. All is well so far. I picked up several syringes of Neupogen, which we'll start on Friday.
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Engine, that is great news. Sending her lots of good vibes.
Life, till now the nail info I have gathered is from the MO, the Oncology nurses and this link below:
https://www.podiatrytoday.com/diagnosing-and-treating-chemotherapy-induced-nail-changes1. Use OPI nail strengthener nail paint.
2.Keep your hands/ nails dry of any moisture
3.Use 1 part vinegar 2 part water for nailbed soreness and to ward of infection. You can aso use few drops of tree tea oil in water and soak your fingers in that.
4. You can also soak in epsom salt water for sore nail beds. Note: I have tried both epsom salts and vinegar, vinegar worked better for me.
5. Use dark nail paints as Taxol makes nails sensitive to sunlight.
6. Keep nails short.
7. Apply heavy moisturizer on hands and nails. My MO told me to apply oil on nails, any kind, even olive oil is fine.
I hope this helps.
Whats with the nose drip.. so annoying and embarrassing at times. Maybe I should wear a mask just so that nobody sees me dripping like a 3 year old who doesn't care.
Inna B, lol, I buzzed off my hair after the 2nd AC, its been 2 months now with no hair. My hubby has said more than once that now that I look like a buddhist monk I should maybe start acting like one. Well, that was on AC. I was a bit more irritable on AC.
Duffyzmom, Dee and Mdevroy congrats on getting to the end of the chemo journey. Mdevroy, havent seen you much since the very early days since the thread started. Good to know you are doing good.
Notered and GA Warrior, all the best to you guys as you move on to part 2 of chemo.
Urdrago, hope you have a good week with Taxol 4.
Have a restful week ladies.
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Good luck to your wife, Engine
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Duffy, oh, gosh, I'm just so sorry. I'm looking at our dogs, and that pain of loss is hard. I'm amazed at your walk, though. WOW. I feel like a champ to get in half a mile a day! (Maybe slightly more on a good day). Like you, I've used a variety of nail polish and hardeners--working well. One toenail is wonky, but I also cut nails short and keep them polished at all times. Seems to have helped. And yes, this weight gain thing is frustrating. I lost 5 pounds the first 6 weeks--so, nothing drastic. I put it all back on the past 4 weeks. UGH. I've been eating a lot of nuts and cheese crackers. I realize that's not the best, but it gives me potassium and some protein and a bit of iron, as does the enriched pasta and tofu. I'll get back to healthy eating when I can bear to taste something else.
NoteRed, congrats on completing Taxol!! Yep, everything you have listed, except here towards the end, bone pain increased significantly (enough to send me crying to the nurse). I did have an impacted bowel around week 5, which was the worst. Most everything has been manageable. I think my eyes feel "fatigued" more than anything. I hope your next treatments go well. The nail polish has been a great help--OPI, Butter London, and Essie here.
Mdevroy, I hope you get good news on the surgery. Does your surgeon think he/she can get clear margins? What I was told was that I was "an excellent candidate" for breast-conserving surgery. I know that's not what everyone hears. Mine did have to do two further excisions while I was still in the OR--she'd send out to the lab, wait, and then cut again. The last margin was thin, but clear, and in fatty tissue. I believe it has a lot to do with both size and location. Anyway, good thoughts at your appointment!
Engine, good news on being able to proceed! I hope all goes well.
dee
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Thanks, everyone! We're hoping for an easy ride this time.
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Okay, it's official - I'm in the Taxol Club! I had T #1 of 12 this afternoon. I feel fine, just woozy/tired from the IV Benadryl. The onco nurse says I can ask for a decrease in that and steroids next time if I want to. We'll see after SE's hit...
Yay, Engine, good news! Good luck to your wife! Hoping she's past all the drama this time.
Dee, congrats on 11/12. Also, for walking most days, despite the brutal heat and humidity we've been having this week. I do it sporadically, but I also run around like a headless chicken at work most days, so I'm counting that as exercise, lol. Re the poor lady with bone mets - that's so sad! I guess I should be grateful my bone pain passes after 24 hours or so.
Duffy, good for you for your 3 mile run/walk, although I know it was so hard without Duffy! (sending hugs). I did a 3mile run/walk this past weekend. I'm hoping I can continue it while on T. My daughter and I registered for the Disney Wine and Dine half marathon on the first weekend in Nov, as a goal for me to aim for. Now, I'm wondering what I was thinking? At least I had to good sense to tell her I wasn't doing the full in January, lol. Good luck wih your edema.
NoteRed, congrats on finishing the first round of chemo. I had many of the same SEs you did, but I did AC first. The worst for me on AC was constipation. I almost had an impaction twice. Do yourself a favor - start taking stool softeners and eating prunes and high fiber foods a day or two before your FEC, then continue until you know you are "going" regularly. Trust me, you DON't want to get backed up and the chemo plus anti-nausea meds will do it quickly. Use Miralax if you haven't gone in a day or two. Hang in there, you're almost done!
mdevroy, you're so close! Good luck with your surgery decision.
InnaB, my first buzz cut made me cry. Poor hubby thought he'd nicked me (he was the one buzzing my hair off). It was just because the hair loss made this nightmare all more real, you know?
Frog, I tried soaking my fingers last night and it really did help - thanks for that! I also got the Opi nail strengthener and used that, plus cut my nails super short. Amazon is delivering Bag Balm tomorrow - that's supposed to help farmers and people with problem hands, so I thought I'd give it a go. Anyhow, I'm more hopeful I can deal with it now! Also, my nose runs like a faucet - luckily I wear a mask at work. Today, I was halfway through cleaning a patient's teeth and could feel my nose start dripping. Can't do anything about it at that point, but I sure was grateful she couldn't see it. I have tissues in every pocket now...hubby has taken over laundry duty and is always saying, "someone left another tissue in their pocket. I wonder who that could be?" lol.
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Hello to you all, I'm so happy I've found you all because whatever we are say, it's a lonely ride. and I believe only a person who has gone through this can really understand our ways of thinking, our fears and anxiety. Dont get me wrong, I recognize its hard for our family and friends too but there are times that I'm feeling alone especially when my mind goes in "dark places".
- Frog on the lily pad yes I'm heading for the next treatment.
- astyanax66 thank you for the courage to move on
- GAWarrior I 'll take your advice... thank you very much
Hoping for you all to have a nice day without any SE
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Notered I just litterly woke up after having weird, sad dreams last night feeling this way. Lonely. I live alone with my fur babies so I have a lot of alone time to think. All I keep hearing is stay positive and go live your life. This is easier said then done when all you can think about is what is happening right now. I get the dark place, fear and anxiety feelings you are struggling with. I truly do.
Sending you a ginormous hug right now in hope that it helps lifts your spirits some today and that you feel a little less lonely.
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Oh, Life, so sorry! But you have all of us to support you. We know what you feel, so don’t be shy, tell us. Sometimes even putting your feelings into words helps to cope with them. For some reason I worry about recurrence more than about what I am going through right now. I realize it’s stupid, because I am doing chemo and rads to prevent it, but I just can’t get the thought out of my head sometimes. Why do some people still get it? Should I be doing more to avoid it? If yes, what is it? Some days are better, some days are worse, so I definitely hear you about depression and anxiety. But I try to push through. I walk and talk with my friends, kiss my son and get a drink of water, since wine is out of the question right now. I am strong, I shell overcome it. That’s my mood for today, at least.
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hello again Life, thank you for the hug. It was what I really needed... not coffee not "everything is going to be alright". Just a hug from someone who understands even though is hundreds of miles away.- (Iam in Athens,Greece). Tomorrow I have an appointment with my onc so he can see how I am ... hope tomorrow will be a smiley day..., are you having chemo too
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Thought i would drop in and say hello. I just got out of my 4 of 12 taxol.. feeling tired and blah.. also seen doc. She couldn't find the cluster lymph nodes or lump which is good news. I waiting for july to get here to speak with suregeon @ Uof M.We talked about my blood work and SE's. Taking 1 shot of Granix 24 hours after weekly chemo to keep my white count up and stable. Also my ALT/AST high so MO called to retest today ,still high. So next step is to ultra sound of the liver. That does concern me but as u all know its a waiting game til i get answers..SE's for taxol is increased bone pain randomly all over my body. Randomly for me is time during each day, length of time it last thru a day, and locations on my body ..ugh im not liking and get very irritable when its turn on..
Hope everyone has a good week minimal Se's..
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LIFE, NoteRed, and InnaB, I understand, too. I'm a very optimistic person, but it's tough to maintain that 24/7. Like you, InnaB, I'm almost more focused on recurrence. I feel like I KNOW the tumor has shrunk, so the chemo is working and I don't have to worry right now, but what if it isn't killing everything? It's so easy to go down that dark path. It seems like I do a search for something completely different, then read about someone who recurred only a few months after chemo ended. I have to keep telling myself that we're all different and will respond to treatment differently from each other and we've all started from a different spot on this journey, but it's so easy to go down the rabbit hole. My hubby and family/friends are very supportive, but I often don't tell them how scared I really am just to keep from worrying them. I figure fake it til you make it. Plus, no one truly knows what they'd do or how they'd feel unless they were in our position. Before I was diagnosed, I'd had plenty of experience in helping loved ones who have gone through a cancer journey - I had no idea how alone you feel until I was the one going through it.
We're all be here on the boards to support you all! It's good that we can vent or encourage each other and know everyone understands.
BIG HUGS to you all! Hang in there.
Hoping you get good news tomorrow, NoteRed, I'm sending good thoughts your way!!
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Urdrago, I just saw your post. You're a third of the way through T - congrats! Sorry you feel yucky, but it's good news that they couldn't find the tumor or lymph nodes - yippee!
I did a search for ALT/AST since I didn't know what that meant and I found this thread:
https://community.breastcancer.org/forum/69/topics...
It seems like you can have a temporary change in liver enzymes due to chemo. Someone noted their T was reduced due to their high liver enzymes (this was on a different thread). Apparently T affects the liver more than AC does. Someone else mentioned their final dose of T was held a week due to high enzymes and their count dropped by 50 points just in that one week.Tylenol and some supplements (and alcohol) can also contribute to high enzymes. On yet another thread, the person was told she wasn't drinking enough water and that could raise her enzymes. I hope this helps you feel slightly less concerned...
So sorry about the bone pain - I'm dreading that SE. Maybe Ibuprofen for it since Tylenol is processed through the liver? (yesterday, my onco PA said either Tylenol or Ibuprofen was okay while on T, but you should double check that with your MO. I LOVE my MO, but I don't really trust what the PA tells me since she says things like "why are you doing neoadjuvant chemo?" "Umm, because I'm triple negative." "Oh. Well, why will you be having a mastectomy?" "Because I'm triple negative with a tumor and a second area of abnormal cells in the same breast." "Oh." Hello, shouldn't she KNOW this? She's got my flipping chart right in front of her!).
Sending light and good vibes!
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