Chemo starting April 2018
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ElizB, thank you for the suggestions that I should discuss with my MO. My insurance case manager nurse called me yesterday and both of you had very similar ideas. The good news is that I’m feeling so much better today, still weak and fatigued, but better. Has your tinnitus cleared up?
leli, my chemo nurse put the neulasta on my stomach. She said if it’s on the arm, it falls off easier. I didn’t receive Benadryl in the premed IV. I asked and she said they give it for the AC-T regimen. With me having such a tough time with SEs after chemo #1, it will be interesting how they change the premeds and/if they slow down the infusion rate
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Maggie- So glad to hear you are feeling better!! I hate to hear about all these bad side effects:( Frog and I seem to be the only ones with tinnitus. My regular doctor is letting me try Neurontin for it- actually more to see if it will calm my brains reaction to it. Thanks for asking- Frog I will let you know if It works!! He said its a very safe drug- minimal SE and may be helpful during chemo.
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So my day started out with me feeling much better. I finally felt like the diarrhea was under control and I was feeling pretty good.
Son and I head out to see Black Panther (my 2nd time, his first) and halfway through the movie I start getting chills. I figured it was just a cold movie theater but when I get home temp is 102. And of course that is just when clinic is turning off the nurses triage line. So I finally get a receptionist to get one of the nurses to find out if it can wait till morning. Nope please go the ER.
So I spent 5 hours in the ER. Lots of tests done and still not 100% sure what is going on. They are thinking C Diff so I came home with a RX for that but sad news is they're taking away my Imodium so guess I'll be homebound until this clears up. The good news is maybe every round won't have awful diarrhea.
I didn't get a chance to read all of the posts but I did see some hair talk. My last go around with chemo pubic hair went first and then hair on my head.
DJT - I have two ginger teas Newman's Own green and a decaf Meijer brand.
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duffymom....so sorry this has been so very rough for you. If you are off Imodium, do they feel the new RX for possible cdiff will curb it? I found. YoGI ginger tea, but, mmmmehh, it's ok, not great.. Hope all have a decent day.
Engine, hope the wife is doing ok.
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Duffy- wow 102 fever... ughh. I hope they figure it out- and treat it. I don’t know if any of you are really raw and excoriated from all this diarrhea- but my SIL told us about “Pinksalve”- it will clear things in 1day and it’s helps with the pain. It’s messy on clothes so - so wear old stuff!. We always have a tube in the house!, miracle stuff!
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frog, I hope you are at or nearing your turn around point from your infusion, I can't believe the day 8 thing. I have been shopping, vacuumed, and out to lunch with a friend. IT feels so good to be feeling like me for the past couple days. I kind of pretended to eat at lunch however...I'm not getting along with food yet, and my immodium is a daily given. But I just feel pretty good. I hope this for you ALL as well, have a decent weekend.
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Duffyzmom, yikes! That's pretty scary. Are you off Imodium just for a while or for the foreseeable future? Did they ask about Lomotil?
Welcome, Engine, hope we can be of help.
Just got back from graduation...son looks a bit thunderstruck, lol, at the realization of a new stage of life. Spoke to several of my students, so that was nice. I admit I'm fairly worn out, though, even though I rested a lot before we left.
My hair is still mostly there on top, but it's sloughing off a little at a time. Kind of strange. I'm seeing slight nail discoloration, but a good polish and hard top coat is helping them stay fairly healthy. Ditto with the toothpaste and Biotin for my teeth and mouth.
Dee
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Thank you Dj, almost there, almost. I am glad you had a good week. I am waiting to feel normal again.
Duffyzmom, how are you doing? and Urdrago, day 3 for you, I believe. Hugs to you, it will pass.
Dee, congrats to your son and you too. Hope you guys are having nice sunny days.
Have a great weekend ladies.
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Hi there - can I join your group? Wish I had earlier. I actually started chemo (cytoxan & taxotere) on March 20th and am doing 4 infusions. So, I had my 3rd last Tuesday and hope to finish on May 22. And then onto 4 weeks of radiation...
I had a lumpectomy on Jan 31. My oncotype score was intermediate (22) and I was debating chemo and then did the mammaprint and it came back high risk for recurrence so I feel good about my decision, although what a rollercoaster!
The neulasta was really tough the first round, especially since I was told to take claritan for just 3 days after and really needed it much longer to mute the bone pain. Luckily, I didn't have to have neulasta the 2nd round since my white blood cells were so high (>10). I did have it this last time and am wondering if it will hit as hard with my now steady dose of claritan.
I tried fasting ahead of my 3rd round of chemo. My oncologist supports a 12 hour fast ahead of chemo to reduce swelling which should minimize side effects. My naturopath says 500 calories vegan diet for 2 days ahead and a day after. A researcher at USC (Valter Longo) has shown fasting during chemo makes it more effective in mice. I did maybe 18 hours ahead and 24 after. Supposedly fasting makes the healthy cells shut down while the dumb cancer cells don't and so less healthy cells are killed by chemo. I think my side effects have been a little less with fasting and I've needed less anti-nausea meds so that's good. Who knows about the rest of it...
Overall, I've been able to do lots of hiking and walking even on those days when I feel like a zombie. Hiding from the sun is a drag as is not being able to taste food but I realize these are minor complaints and I should be grateful it's not worse.
This is my weekend to lay low but I'm hoping I will feel better than expected. Hope the same is true for all of you!
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Marie—I'm curious about the fasting. I asked the woman at my patient education session what she recommended the morning of chemo. I've been intermittent fasting (by skipping breakfast) for almost two years, but she said they recommend food in the tummy to help combat nausea during the infusion. Do you do your treatments on an empty stomach?
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Hi guys,
I've been reading your posts for a while as, I too started Chemo in April on the 24th. My story is a bit crazy as I found out I had BC when I was 8 months pregnant with my first child. I'm 25years old, and negative for any BRCA gene. (Although, my mom had BC twice over a 10 year span, she's still negative too). I had a single mastectomy in Feb, then had the baby 3 weeks earlier than my due date when I was 37 weeks pregnant, got my eggs harvested and froze, started chemo, & now I'm here! I've actually had HORRIBLE side effects. The big D, stomach pain that comes in waves every 20 min, fatigue, chemo burn/blisters at IV site, bone pain, mouth sores, insomnia (but that could be the newborn), and headaches. I don't think having a new baby helps with any of this at all. Luckily my DH takes more than his fair share of baby time. No hair loss yet, I'm 11 days post chemo and maybe starting to feel better. I got some CBD oil a few days that I think has been helping. Reading everyones symptoms and advice has been super helpful and I thought i'd get more involved and contribute anyway I can!
Erin
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Marie: We took a chem class last Wednesday at the hospital and the Onco RN specifically said people should hydrate and eat a good breakfast on their chemo days.
She also said that many times, the first session indicates how well, side effect-wise, the remaining sessions will go. I hope so. So far, my wife has had no issues since her first round on Thursday.
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Hi everyone,
I'm on the second round (day 6) of TC and I can't seem to get a solid handle on the diarrhea that started on the night of day 1. Have been taking immodium with every loose bowel movement and that seems to help a little but wow, I'm sort of wracked. Any tips on how to get rid of it? This was so not a problem with the first round. I've been only eating BRAT food and have a hard time with that not hurting my stomach. I'm hydrating okay, but funky mouth taste makes it hard, but have been diluting sports drinks and that seems to help. Have to say that this week, chemo is kicking my ass.
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Engine104 - yes, my nurses also recommend eating (and everyone recommends hydration) and I did the first 2 times but I decided to follow some other advice for the 3rd after doing some research and hearing my onco doc say she would fast for 12 hours prior to chemo if she had to do it. I took my 2nd steroid (dexamethasone) with food the day before at 4 pm and then didn't eat after that until late the morning of the day after chemo. I have heard some nurses say first session indicates future side effects but others, including onco doc, say there is no guarantee and that you could get new side effects at any time. I hope it works out to be the case for your wife that the side effects are minimal throughout chemo!
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Hi Ingerp - I did do my 3rd treatment on an empty stomach and it went fine. I actually think I've had less side effects this time (although I guess I'm still waiting for the shoe to fall here on day 4). I've definitely taken less nausea medicine this round (ondansetron & promethazine). The first 2 rounds, I took it before feeling nauseous (as recommended by nurse) and now I'm waiting to actually need it. By the way, I did take my steroid (dexamethasone) with food (4 pm the day before and noon the day after) since I've been told it is hard on the stomach.
I'm interested in the fasting as a way to make chemo more effective (see Valter Longo's research) as well as to minimize side effects; however, if I were convinced it helped kill more cancer cells & protected healthy cells, I'd do it even if it made side effects worse!
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Hi Erin - I'm so sorry to hear you are having to deal with this while being a new mom. My heart goes out to you and kudos to your awesome husband. I'm also a mom (3 boys 10, 14 & 14). I hope you can get lots of help from your community.
I also had "burn" marks (red streaks) at iv sites the first 2 times which appeared a week after the infusion and for the 3rd time my nurse tried diluting the taxotere and using a vein in the bottom of my arm (which are thicker veins). So far so good. An onco nurse also recommended udderly smooth cream for taxotere related rashes/burns and it does seem to help (plus tons of other moisturizer). I assume you're taking clariton for the bone pain from the neulasta shot? I needed it much longer than the nurse originally suggested and have just started taking it the whole time I'm on chemo. What kind of chemo are you doing?
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Thanks, Marie. That's an interesting point.
I'm really hoping my wife continues to feel fairly well, but we've got a long way to go and chemo can be a roller coaster, as you all know too well.
God bless all of you on here.
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marie68 - I am on day 10 after 2nd TC and I got a red streak near the IV area. It was really itchy for a couple of days but now it is just really red. I didnt get this on my 1st round. The vein was around the wrist area. For the 2nd round, the nurse had a very difficult time finding a vein. She failed on the left arm so she switched to the right arm. The vein was in the middle of the arm and she had to use a children's needle. I bruise easily so my arms look really bad but they dont hurt so that's a good thing. I will definitely ask them about finding a thicker vein for my 3rd round. Maybe I can have them slow it down like they did for the 1st round.
Today, I woke up and my neck area is all itchy. I'm not quite sure if this is a side effect of chemo - probably. I live in South Florida so every time I sweat it aggravates the symptoms. I am putting a cold compress around my neck to help with the urge to scratch. As long as I stay cool, it is manageable. My scalp is really itchy as well so I am trying Scalpicin. I guess it is working. Hope everyone is having a nice weekend!
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Frog, I'm on day 2 not sure why but feel shaky internally, along with blah. I sleep mostly every day while pushing my liquids.. thanks for checking in on me.hugs..
It sounds werid but I'm trying to understand what I did differently that's making me so sluggish after my 3rd round.. I'm eating lightly every few hours..a few more days and I should be on the upward slope.
Hope everyone is managing thru their SE. One day at a time..sending good vibes!!
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Hi Marie, welcome! I wasn’t really told much about eating until after I started chemo, and then the nurses gave me tips. I eat something light and relatively easy on the stomach...the Decadron in the pre-chemo makes me hungry, but of course I don’t want to get sick. So, for me, I compromise. I’ve heard others talk about fasting working well for them, too. I’m very, very prone to nausea...even had it with my port placement. So, the Decadron/Zofran pre-infusion treatment has been a lifesaver for me.
Sneezyhead, I had non-stop diarrhea on week one, so they have me taking 2 Imodium before treatment and every 6 hours thereafter if symptoms continue. I generally cut to one every 6-8 hours thereafter, and by 4 days post-infusion, I no longer need it. The mo also said she could prescribe Lomotil if Imodium wasn’t enough. Taking it before and right after has helped.
Erin, I just can’t imagine how challenging this must be with a new baby. I’m so sorry. For what it’s worth, we were all convinced mine was genetic—my mom, 3 of her sisters, and two of their daughters. Nope. Had the complete 80 gene test, all negative. It’s so strange.
Urdrago, hi...do you think maybe this is the cumulative effect? I was told by round 8, I’d be much slower to bounce back. I’m doing weekly taxol and Herceptin for 12 weeks...the Herceptin will then drop to once every 3 weeks.
Hope everyone is resting this weekend!
Dee
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Dee, I honestly don't know, but I will be asking on Monday since I've got one more AC before Taxol weekly. This was the first time I took the Friday off after infusion. I don't take clariton, or steriods. Maybe I should consider for next treatment. I didn't know cumulative effects..I wonder what 12 weeks of taxol will be like..grrr
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Leli - my local oncologist had not seen rashes or iv "burns" like the ones I've experienced so I checked in w/ my 2nd opinion doc at the teaching hospital in my state and that onc suggested extending steroids after treatment and/or doing a mini hit of steroids during the middle of treatment for bad rashes. I had itchy rashes on my iv hand the first time which were mostly just an annoyance and may have been triggered by sun/dirt exposure (spaced out and took my gloves off while gardening - oops, won't do that again!). The second infusion I got a very red rash on my cheeks which spread to my nose and chin when I had been careful to avoid the sun. It didn't itch but it did damage my skin a bit (not to mention my mood) and I wanted to avoid it if possible. I'm wary of too much steroids but I did do a 2 mg dexamethasone mid-cycle course (2 tabs for 2 days then 1 tab for 2 days) and I extended the steroid for 2 days on this round. We'll see what happens w/ the rashes. I've been putting tons of udderly smooth (recommended by an onco nurse) and aquaphor on any potential rash flare ups and the iv streaks and it seems to help them fade a bit. Good luck!
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Hi All! Sorry I vanished but luckily it was for good reasons.
Thankfully it was not C Diff but there's no doubt in my mind it was bacterial because two Flagyl and the diarrhea stopped. I had plans to go with my daughter to Indianapolis because she was running the half marathon there so I did. Funny thing is on the drive down my oncologist called to say the ER Dr had said my bloodwork was good but when he saw my results Friday he said if he knew my Neutrophils were that low he would have admitted me to the hospital. But talking to me on the phone he could tell I was feeling good so he was satisfied with the antiobotics and said I only need to go to hospital if I ran a fever again. No fever and I'm finally feeling good. I had one Neutropenic Fever during my last chemo so maybe I'll be one and done again.
Now I'm hoping that it was just some bug I had picked up and not a chemo SE. Fingers crossed next round I won't have such a bad time.
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Hi everyone,
My wife had her first TC session on Thursday. She's been feeling pretty well, but today (Sunday) she feels a little dizzy and she has some back pain. Is this normal for TC? I assume it is normal and her counts are dropping, but at what point do we give the Onco a call? I also suspect it could be her BP. She is on meds fro that, but the meds make it go a bit low without the chemo.
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Engine, I would call just to be safe and I'm not on that drug yet. But flu symptom are part of infusions. Just no fever.
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Thanks, Urdrago,
I'm thinking we'll keep an eye on this today and call the Onco office tomorrow morning, just to be sure and see if they want us to come in and run labs and maybe start Neulasta or something like that. The symptoms are pretty minor right now.
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Day 8- Yayyy.
Duffyzmom, so good to see you back. I am glad you are feeling much better and hope you do not have any more of these episodes.
Engine, I hope your wife feels better soon.
Urdrago, you start weekly Taxol after the next AC right? I am kind of freaking out about these 12 weekly Taxols now. My next and last AC is on the 14th. Yours will be the week after I think. Keep posting if you find any helpful tips. And I am sure I can count on the ladies in this forum for help and support when I start with the Taxol.
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Frog, mine is the 17th and today I'm feeling depressed, unhappy, wishing I felt like myself. .ugh curious if this is all the chemo changing my moods or all of this shit is caught up to me..
I have to remind myself one day at a time..and I'm not always fine!!
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So, this is week 5 of Taxol for me, every Tuesday afternoon, and I've followed a very set pattern. First, I get blood work from my port. Then, I get a pre-infusion of Decadron, Benadryl, Pepcid, and Zofran. Then I get Herceptin and then Taxol. The first day was like 6 hours (to observe for side effects). Thereafter it's been 3 hours. I'm kind of dizzy from the Benadryl and Decadron, but feel normal Tuesday evening and Wednesday. Taste buds vanish. By Thursday morning I feel like a have a mild case of flu and diarrhea starts by then as well if I don't take Imodium starting Tuesday. Friday feels like the flu as well—aches, headache, and fatigue. It wanes by Friday night, and by Saturday, I feel mostly normal. Sunday, I'm 85% normal, and Monday, I feel fine. I'm not a huge exercise person, but I walk half a mile on rough days and maybe a mile to mile and a half on good days, in small increments. I have had mild neuropathic tingles, usually Thursday and Friday. They haven't hurt....just mildly uncomfortable. There have been muscle aches, again very much like flu or strep throat. That has been a bit painful. Thus far, wbc have been good, so no Neulasta yet. I do take Claritin daily Tuesday-Friday.
On other boards, I see some people jogging 4 miles daily, and that's just not me. I do drink tons of filtered water, every day. The only issues I've had are drops in iron and potassium, which I'm managing through food choices. I live on a brat-type diet and whole grains and some dairy. Meat is hard to eat due to taste.
Is Taxol fun? No. Is it as bad as I'd feared? No. I've got 7 weeks left, and I know the last few will be hardest, according to my mo, due to cumulative effects. This weekend was hard due to a looooong day Friday. I think this week will be better since we have no big plans. I am trying to learn the whole balance of work, movement, and rest, plus eating small, frequent meals with protein and iron throughout the day. Honestly, the toughest part is trying to keep the family fed when I don't eat what they eat nor can I stand to smell food in the kitchen. My bff just cooked and froze like 20 meals for them, which is awesome. They can have their enchiladas, and I can have my pudding, lol.
I was told this wasn't the worst regimen, but everyone is so different. I think it's gone pretty good for me. We all have different reactions, so I don't know how it may be for another. I don’t want to say it’s notbad as a blanket statement because it might be rough for someone else. I hate going to infusion because it's so open and noisy and frankly undignified. But I'm an introvert, so I watch a movie and tune out. The nurses are all nice, and that helps.
I hope that helps a little for anyone who has Taxol coming up, but please know it's just one person's experience.
Dee
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Dee, thankyou so much for your post. 6 hours on the first day, does Taxol have lots of allergic reactions? I try to skip the steroids from day 2 onwards because of how they make me feel. I am wondering if I should sit down with the Onco nurses once before I start on Taxol. 12 weeks.. yikes.
URdrago, hugs, its both cumulative and the realisation. However, day 8 is no myth. Hang in there
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