Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Chemo starting April 2018

1…910121415…99

Comments

  • Engine104
    Engine104 Member Posts: 241

    Hi DebAl,

    Thanks so much. She is very happy. I'm a bit concerned that we'll get the runs under control after we get home, but they don't want to start any Imodium until they get the C-Diff culture back.

    The onco nurse was pretty funny just now, she said, "I doubt it is C-Diff. Trust me, we know what C-Diff smells like and this isn't it." :) I guess you do get know know it if you're a nurse on the onco floor :)

  • debal
    debal Member Posts: 600

    Engine, ha ha! NASTY! But it's good they covered that base. The big D sure wears you out. I hope she gets some rest in her own bed and feels better tomorrow!

  • gawarrior
    gawarrior Member Posts: 368

    LOVE THE PICS, Duffyzmom! Thanks for sharing! I'm SO glad you got to do the marathon with your daughter! Let's see if I can add my pic.... My son-in-law and I did the Disney marathon "together" (he was in the corral ahead of me) but - as I mentioned - my daughter couldn't because she was sidelined with an injury. I felt bad for her, but she was a really great race support for us (she even got up and rode the bus with us at 3:00 a.m., then froze her tail off with us while waiting for the race to start (see the 2nd pic, lol). And, now I see that I wore the same expression for the entire race, HA! (mostly because i couldn't believe I was going to attempt a full...). I'm going to try to either run it with her in Jan or be race support for her. This was my first full and I ran it at age 58 in 6:33:27. Slow, but I finished in the full, upright position, on the correct side of an ambulance, lol. Also, I'm glad this round of chemo was easier for you. FYI, my onco nurse tapes a big bandage over the Neulasta injector to keep it in place...maybe that will help you?

    image

    image

    Engine, so happy your wife is going home today!

    Marie68, FWIW my eyes have been dry and fuzzy (hard to focus sometimes) on AC, with "matter" in the corners every day. I never thought to tell my MO, but I will now. Anyhow, thought I'd mention it since one of my meds is Cytoxan, like you're on. I realize you have the opposite problem, but thought it was worth mentioning in case there are some eye SE with C.

  • EncoreKennel
    EncoreKennel Member Posts: 5

    Hi Girls!

    Maggie... I noticed that one of my nausea meds caused horrible headaches... so now I take Alleve with it... helps tremendously. Hope yours get better fast! I am day 6 out from chemo 2... can't believe how awful I still feel and wondering if I can make the other two A.C. . I have to tho as am opting out of Taxol. We are moving Saturday and just physically can't pack any more so will need to pay the movers.... ah well can't be helped! Had to say goodbye to my PC today due to the move get all new doctors..... she and I both cried, hugged and she prayed for me. I really love her as a sister, not just as a doctor. So it was an emotional day and that is tiring too. Anyone else really struggling to make it through after only 2 rounds? I am 59 and have so many other health issues so just don't know if that's it or not....

    Hugs!!!

    Dina

  • leli
    leli Member Posts: 25

    marie68 and DebAL, I'm going into my 3rd TC on Thursday. Hoping that SE are similar or less that last two. We're almost there...

    marie68, I, too, had IV burns. Personally, I thought my hives might be due to sensitivity to dust. Since I am having chemo Thursday, my onco suggested I start the steroids early to help with the hives. It seems to be helping. I didnt know you can opt out of the Neulasta. Is there a reason why you are choosing not to have Neulasta? Have you noticed more hair loss since the 1st infusion like eyebrows or eyelashes? The hair that was left behind from the 1st infusion seems to be continuing to grow. I still get some hair loss on my scalp but there isnt much to lose so it isnt as noticeable. Good luck with your onco appt. Hope you feel better soon.

  • krissy37
    krissy37 Member Posts: 119

    Hello April Chemo Group!

    I've been following this thread for a few weeks. I have finished 3 of 4 AC infusions, then on to 12 weekly Taxol. I am triple negative, Stage 2 , grade 3. No nodes. Age 47. I had a double mastectomy with immediate reconstruction the end of January. I had prior lumpectomy and radiation in 2008 for DCIS.

    Ten years ago I found this forum and loved the support and all the helpful info from everyone. I have decided to join this chemo group ,I thought I could just do this alone, but it's getting more depressing . I'm having a hard time with losing my long hair 😞 And feeling so blah most days. I find days 1-8 the toughest, then feel good days 18-20- right before chemotherapy again! My next AC infusion is 5/30. The side effects I have been experiencing are nausea, fatigue mild bone pain and upset stomach. I do get The Zarxio shot after infusion for low WBC counts.

    Anyways , I wanted to introduce myself and am looking forward to supporting all of you. I hope you all are having a good day!

    -Krissy37

  • duffyzmom
    duffyzmom Member Posts: 217

    Welcome Krissy- Have you also considered the Triple Negative support system. I initially joined over there because my original diagnosis was TNBC (IHC) but because of my high scores they preformed FISH and it came back just barely HER2+. I'm doing TCH because I maxed out on Adriamycin when I had lymphoma 8 years ago.

    GA Warrior - We could have totally ran together. Our finish was 6:20:10. A PR for me at Disney since the first time I did it in 2013 it was the hottest on record. and My finish was 6:45. Disney is fun but not great for getting good results. My first marathon I did before cancer was 4:45 finish. I seriously should have just stopped then.Loopy Kudos for your daughter cheering you on in that cold weather. I love the idea of doing a Goofy or Dopey but I'd never be able to do that many early morning wake ups. I may give the band aid a try. Although I kind of like the excuse to just take it easy.

    Marie- I also have more dry itchy eyes than watery. But it is my main seasonal allergy season. Oncologist is letting me add my Flonase for a bit to see if that helps. I haven't been able to wear my contacts for a few weeks.

    Dina- sorry to hear you are having it hard. The added stress of move changing doctors is probably making everything a little worse. Chemo does have cumulative effects so that could be some of it. Are your blood counts in a decent range? I always feel the absolute worst at the low point and then it slowly gets better.


  • FDwithfurkids
    FDwithfurkids Member Posts: 24

    Thanks all for the encouraging words. Home from Tx; feeling good. Just a bit sleepy from the Benadryl.

    GAWarrior. I made sure to shave as close to the scalp as I could. I had to take a couple breaks to do it just because my scalp was so sensitive. But the sensitivity is practically nonexistent now.

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159

    Lovely pictures Duffyzmom and GA Warrior.

    I think Urdrago and GA Warrior we are on the same treatments AC and Taxol. I believe bec we are all TNBC. And now Krissy. Krissy we are all in this together. Wishing you lots of sunshine.

    Engine, I hope your wife is back home. Hugs to her

    GA warrior, I found the 2nd round much more tiring than the first. Third was okay. Now, this time I do not feel anything. This has been the easiest day 1 and 2 and 3 ( close to midday here) I took neulesta yesterday so the bone pains will arrive in a few days. Urdrago, I hope AC 4 is as uneventful for you.

    Djt, we did take flushots. Trying to keep good hand hygeine. I find the sun very harsh on my eyeseven with sunglasses on. My eyes get dry and fuzzy too. Also, my first 2 AC treatments, I was craving a lot of sugar. I do not like sweets, but ended up buying lots of sweets and icecreams, last 2 treatments, back to not liking sugar.

    My BS wants to see me this friday and discuss surgery options. Anybody has any questions I should ask please let me know.

    Also, about supplements, my MO is not too much into supplements while undergoing chemo. But she was okay with turmeric added in food bec of its anti-inflammatory properties.

  • Djt
    Djt Member Posts: 176

    hi everyone, and new names here today.

    Had 2nd infusion this am, went well except the IV blead all over, something happened, jnurse told me not to look! After all was cleaned, it went smoothly, iced feet, hands, and ate ice shavings, it helped the first time, hope this time two. Told Dr. I had not slept all night sue to steroids, so his is dropping them off my pre meds. Yeah. Got some tablets to avoid get to mg thrush this time.

    Hope all others who had treatment today got though it okay.

    Deborah.

  • marie68
    marie68 Member Posts: 15

    Leli & others - I did an extra round of steroids (dexamethasone: 4 mg tab 2x/day for 2 days then 1x/day 2 days) in between infusions to try to thwart face rash. Seemed to help but not positive it wasn't just running its course... I opted to skip Neulasta for round #2 because my neutrophils & WBC were so high the day ahead (>10 for both) from the first shot and onco supported that choice. I had bone pain w/ the 1st shot since I stopped Claritin too soon. Didn't have any bone pain w/ 3rd infusion but don't want Neulasta if I don't need it. I've read that it's definitely recommended for those over 65 or anyone w/ additional major health issues. More hair loss - yes and I do worry my eye brows & lashes are going to go :( It's definitely a drag to have weepy eyes all day and I worry about damage to the duct and skin around eyes. Sounds like the effect can be dry or water eyes with both related to a duct impact. Apparently there are some drops you can use -- I will let you know if I get some & they help!

  • Rwns
    Rwns Member Posts: 103

    Hi everyone...first post, so grateful for this forum!!! Had 2nd round of TC on May 9th and had both watery eyes and blurred vision. 6 days past, and all clear now. SEs seem to be moving on but maybe a bit more fatigue this round

  • gawarrior
    gawarrior Member Posts: 368

    Welcome Krissy, although I'm sorry you have to join us. I'm triple negative, too, as are udrago and Frog.

    Dina (EncoreKennel), yep, AC round #2 has totally kicked my behind (I'm also 59). I only had 1 bad day with round 1 and my blood cell counts dropped lower than they did on this one. For this round 2, I was exhausted and on the couch for days 4-7 (chemo last Tuesday, finally felt better yesterday - 1 week out). Not fun, but I'm glad to hear others say their rounds 3 and 4 are better. Throw in moving and I can see why you are exhausted. Good luck with your move!

    Welcome Rwns. I have TC next (weekly starting in June) and am worried about SE. Glad your eyes cleared up.

    Rats, duffyzmom - I bet we were in the same corral at Disney and didn't know it! I'd totally run with you! Nice time for your finish, especially since your goal was like mine...just to actually finish, lol. Wide World of Sports is the pits, right? I thought it would never end...

    FDwithfurkids, thanks for the "shaving your head" input. I may just do that. I still have hair that's about an inch long and it's driving me crazy because my scalp is so sensitive. I didn't go closer because I'd heard that made it worse, but you've encouraged me to try it.

    Frog, this is just my opinion on surgery, but since I'm also triple negative, I decided to have a unilateral mastectomy. There is a second area in the same breast as the cancer that has abnormal (although benign) cells and I don't want to take a chance on recurrence. For me, I wondered if a nipple-sparing procedure was an option or if that raised the risk, so I will ask about that when I have my surgery consult.

    Hugs to everyone!

  • duffyzmom
    duffyzmom Member Posts: 217

    Deborah- glad to hear you had a similar experience with Round #2. I bumped up my Xanax to 2 tablets and was able to get a good night sleep. Although that meant sleeping through a dose of Compazine. So I woke a little nauseous. Took the Compazine and then went ahead at the 8 hour mark and did another Zofran. Hopefully that will help. Also doing my Ginger Green tea this morning. And since mouth sores started early last round already have my baking soda ready and will try to alternate it with the Biotene all day.

    The good news is the headaches I'd been having are gone. I had stopped wearing my retainer and bite guard due to the dry mouth issues but started it back when they subsided. I guess I'm going to have to figure out a way to at least where the bite guard. Maybe I can get the Xylomelts situated above it. At least I can stop worrying about brain mets for a while.

    For my eye issues I've been just using the rehydration drops I usually use with my contacts. I may try and get into Eye Dr if it doesn't get better. I hate to be vain but I love my glasses just not on a bald person. May need to order some cute cheap ones to go with new look. Or get some daily contacts I can were on special days and just toss.

  • maggie2
    maggie2 Member Posts: 240

    Djt, that must have been unsettling, to have a nurse tell you, "Don't Look!" .  Glad the infusion eventually went ok.

    Duffyzmom, I have my second TC tomorrow and definitely have to talk with them about getting some RX to help with the headaches and bone pain..  The OTC advil didn't help at all after my first treatment. Last time, the onc nurse said to start with Zofran and then use Compazine for breakthough nausea.  I read that one of the SE for Zofran is headaches.  So you use both for nausea?

  • Engine104
    Engine104 Member Posts: 241

    We're back home! C-Diff test was negative, fevers are gone and counts are rising. She was so happy to be back in her own bed last night.

    The second round of TC is scheduled to start a week from tomorrow. "No rest for the weary", unfortrunately.

  • duffyzmom
    duffyzmom Member Posts: 217

    Maggie2 - yes I alternate the Zofran/Compazine for first 2 days post treatment. Mainly because the nausea was the side effect I was most not looking forward to repeating and I know you have to stay ahead of it. Headaches were much worse for me last time so I used a lot of Tylenol but so far not a big issue today. The Claritan doesn't eliminate the bone pain for me so I did use Tylenol with Codeine to sleep 2 nights last round. Oncologist said for some patients Claritan is a game change but maybe not for me. (I do live on the stuff during seasonal allergy season so maybe that's why)

    Engine So Glad your wife is home. Fingers crossed since it was a neutropenic fever she will be treated for that possibility from here on out.

    Just woke from an amazing 4 hour nap. Ahh life is good.

  • debal
    debal Member Posts: 600

    maggie2, I'm sorry about your headaches and bone pain. I looked back through but couldn't tell if u took neulasta? I have had 3 TC treatments. Have you tried Aleve by chance? I was also wondering if you take oral steroids the day b4 and after treatment?. It's interesting to see how pre-meds and Rx for nausea differ even though our chemo meds are the same. I hope things go better for u tomorrow! Engine , glad your wife is home and feeling better!

  • marie68
    marie68 Member Posts: 15

    Engine104 - glad you guys are back home and counts are rising. Hope she can enjoy a high protein diet and continue to get stronger.

    Maggie2 - just want to weigh in on nausea & bone pain prevention protocols. My nurse recommended keeping ahead of it w/ scheduled taking of odansetron (zofran) during the day and promethazine (phenergan) at night (since it has a slight sedative) and I followed that and did well w/ limiting nausea 1st & 2nd rounds. 3rd round I fasted ahead of treatment (~18 hrs) and after (~24 hrs) and needed much less nausea meds (but of course fasting isn't recommended for everyone and some docs don't support it at all -- my onco supports a 12 hr fast ahead of treatment to limit inflammation; others claim it helps with nausea and this was my experience). Like you I requested pain meds (and they gave me oxycodone) expecting more of the terrible bone pain associated w/ neulasta the 1st round but I didn't need it at all and this could be because I just started taking Claritan everyday and will continue through my last round. It will be good to have it on hand for the headaches and bone pain. As I mentioned in a previous post, I didn't need neulasta for my 2nd round since my WBC and neutrophils were super high from the 1st round shot. I'm hoping the same will be try for 4th round but we'll see...

    Rwns - glad to hear your eye issues went away! Really hope that's the case for me too because they are constantly tearing now. I have 4th TC infusion on 5//22 and am looking forward to getting it behind me!


  • astyanax66
    astyanax66 Member Posts: 223

    Hey everyone, sounds like we're all hanging on. Engine, very happy your wife gets to escape and has no C-diff (Ick).

    Finished round 6 of 12 of Taxol yesterday, so halfway there! Met with oncologist who is pleased with progress. I asked if there was any type of evaluation for mets, and she said no, not with my staging. She explained that for all intents and purposes, my cancer was "gone" with surgery (0 nodes involved, clear margins); the chemo and radiation are potent "hammers" to smash any stray cells, and the Herceptin, of course, is a targeted therapy to halt Her2Neu protein. So, that was nice to hear. I told her the only Herceptin side effect is a drippy nose, and we both agreed that was pretty much nothing. ;0

    I am very glad to have a relatively light weekend and weeks until May 31, when we haul ourselves over to Atlanta for high school graduation. Whew! Nice to have not much on the menu for a while.

    Everyone have a great day/week!

    Dee

  • Engine104
    Engine104 Member Posts: 241

    Thanks, everyone.

    They will do a Neupogen injection three days after the next infusion. Hopefully, that will prevent this happening again. I wish they would have done that the first time, but they wanted to see how my wife reacted. I guess we know now :)

  • Rwns
    Rwns Member Posts: 103

    Marie, so happy for you...home stretch! Wishing you an uneventful and tear-free infusion next week!

  • FDwithfurkids
    FDwithfurkids Member Posts: 24

    good day everyone! (Sorry if you’re not having a good day-I’m just wicked hyper which is how I feel day after Tx) Onco is excited about how I’m tolerating and that my tumor has shrunk enough that I can barely feel it. Just hoping the bone mets are also disappearing.

    Engine-glad she’s home and doing better.

    GAWarrior-I wish you luck. I had cut my hair very short on side and back (shaved abou an inch) and then about 3-4inches in top. But most of my sensitivity and pain was the inch long part in the back-especially when laying on my pillow or in my bamboo cap (which I highly recommend for comfort). I hear that everyone is different but it has definitely worked for me.

    Thanks all to those who gave advice about family/friends and how to deal.


  • Djt
    Djt Member Posts: 176

    Hi all, glad to read it's all mainly positive for everyone At least TODAY! As we all know it's a daily battle, but, we are further ahead today than yesterday. Duffys mom, do you keep a steady ice chip intake during entire infusion? That , imo, helps keep down mouth ssores. They are so annoyimg.

    My Neulasta pump will be going off in a few hours, and I'm going to take claritin at that time. Yes, I agree with you ALL, keeping ahead of it is key. Took my walk today, and downing the water as day after infusion. I'm even kind of use to the wig. Carpe Diem all, and best.

    DEBORAH

  • maggie2
    maggie2 Member Posts: 240

    All, Thank you for your suggestions for my TC#2 tomorrow.  To answer some of your questions, yes I take dexamethasone today, tomorrow, and Friday, along with Claritin.  I get the Neulasta self-injecting dispenser stuck on my abdomen, as the onco nurse says it stays on better if it's not on the arm.  I also have a powerport below my collarbone, as I have the "rolling veins", as the nurses call them. As I am also doing Penguin Cold Caps and icing my hands and feet. Having the port did make the first treatment much easier since I had more mobility in my arm.

    I recall there was a discussion a few days back about some of you being Triple Negative.  I am also Triple Negative, but I started out with DCIS, very weakly ER+ from the initial biopsies.  After the BMX, the full path report came back with IDC Stage 1A Triple Negative.  I consulted with 4 MOs and they said everything from NO chemo to AC-T.  Two told me that with the small size IDC tumor (4.5mm), they would only recommend 4 Taxotere/Cytoxan.  Majority ruled and that's what I decided on.  The Triple Negative group is very helpful and are quite knowledgeable about the current clinical trials and treatments.

    Thanks again for all your suggestions.  I will discuss all this with the MO tomorrow.



  • Djt
    Djt Member Posts: 176

    Any of you who have some experience with the Neulasta causing the bone type pains....have you taken the Claritin once a day only? Have you paired the CLARITIN WITH ANY OTHER PAIN RELIEF SUCH AS Tylenol or Ibuprofen? Just trying to tweak up my second time around on this to be as pain free as possible. Thanks in advance.

  • maggie2
    maggie2 Member Posts: 240

    Djt, For my first chemo on Thursday, April 26, they had me take Claritin the day before, day of, and for 7 days after.  With so much pollen here, I've just stayed on Claritin these past three weeks.  I'm hoping that being on Claritin this long will give me better results, as my bone pain was very intense.  I also had a few Percocet left over from the BMX back in January so I was alternating those with OTC advil for the first couple days.  By that following Monday, the bone pain was manageable and I also had some small relief from the headaches. I didn't really start to feel "good" until Day 8. I am going to talk with MO tomorrow about managing the bone pain and headaches with better results. 

  • debal
    debal Member Posts: 600

    Maggie and djt, I take claritin the day before, day of chemo up till about 10 days out. I take an Aleve one a day for about 3 days after the neulasta shot. I have been lucky, no side effects with anything. Walk 3-4 miles a day throughout. I do drink a lot of water. I honestly wish I knew how I got off so easy with this. Wishing everyone better days ahead and less side effects. Hugs

  • duffyzmom
    duffyzmom Member Posts: 217

    I took Tylenol with Codeine along with the Claritan for one or two nights the past time. Just to help me sleep as hip/thigh pain was pretty intense even with the Claritan. Luckily I didn't need much following my surgery so I still have plenty left. MO offered to refill that script but I should have plenty to make it through the 6 rounds.

  • Djt
    Djt Member Posts: 176

    thanks, Maggie. My Neulasta patch just activated and I took my first claritin, I may use a Xanax this time too! Or call onco for other. Good info thanks. Thanks Deb and Duffysmom for joining in. Maybe the extra hydrating is key, , I do walk daily as well, it does help the whole picture. I have some harder pain meds from the 2 lumpectomy s, but feel like my drug line up is just getting to intense! We'll see I guess by tomorrow. Thanks guys

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.