Starting chemo August 2017 - would love some moral support!

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  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    Thanks Paulette! I ended up taking ibuprophen early this morning, and it workes really well. I figure I'll wait 6 hours and chsck my temp before taking it again.

    Glad to hear your second round went so well! My MO reminded me to take drink plenty of water or other non-caffeinated liquids with the stool softners, but I havent had to use her advice since I've had the opposite problem 😕

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    After I read the news about papaya we better stay away from this fruit now. Too big a chance to take.

  • Kritti
    Kritti Member Posts: 23
    edited August 2017

    willow & sunnyjay - I was told that because I'm "young" (37) I would probably be ok and not get too low of a wbc. But I do have 3 kids - 2 elementary age and school starts this week - so I'm somewhat concerned. I think I'm going to call and request one for peace if mind. Especially since I've had such a strong reaction from the tick bite I got last week.

  • Kritti
    Kritti Member Posts: 23
    edited August 2017

    willow - double check that ibuprofen is ok. I was under the impression that it has asprin in it which is a blood thinner. I was told to stay away from that.

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    kritti, all of that makes sense, especially the part about the tick bite breaking the skin and having the reaction around the area.

    You're right about ibuprophen prolonging clotting time, but I met with my dr on friday with the cbc results in hand when she told me it was ok to take either tylenol or ibuprophen (motrin) for the neulasta pain (EDIT -oops, only Motrin affects bleeding time). Only 1 of my chemo drugs affects platelets, and the low period for that is just starting mon, so maybe thats why. She was more concerned with the motrin masking a fever, so right now I'm not taking anything till I check my temp when the last dose should be out of my system.

    Hope your counts are food so you dont need the neulasta!

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    and kritti, you ARE young!!!!!

  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Hi ladies! Just here to vent - chemo delays one after another because of an infection , but I believe I am firmly in the August group now. 8/14 is supposed to be my first infusion, but my confidence is shaken. I'm actually envious of those in the July thread, where I first landed, who are on their 3rd treatment! Just rainy Monday blues I guess. Sometimes this is reall hard. I'm thinking I'll be back on track once chemo starts

  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    VL22 - Hang in there. Waiting is the hardest part! I am still waiting to start chemo and I found my lump over two months ago. I am getting frustrated, but I should start the week of the 14th too! We will be almost at the same time.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    VL22 and rdeeside - hang in there I know waiting is the toughest time.

    I'm having my bad day from the infusion so It is a rough day for me. I'm looking forward for tomorrow better day.

  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Paulette, bit by bit we will get through this and then it will hopefully be behind us. Hang in there. I hope this infusion isnt as bad for you as the first was.

    Rebeka

  • Beatmon
    Beatmon Member Posts: 1,562
    edited August 2017

    Hi, Ladies! Just popped into say hello. I started treatment in August 3 years ago. Claritin is the most recommended for the bone pain, but if the pain from the Neulasta is so bad, your Doc can consider Neupogen. That is what I was changed to after hellush pain from the Neulasta. Your bones may still ache but not like you would with the Neulasta. Negative is that some docs have you take it for a few days in a row the next week. My white count remained stellar with only 1 injection with the Taxotere and he dropped it eventually because it stayed up luckily.

    It seems like forever but even though the side effects may be cumulative, you get better at treating before they get too bad. If you feel you are dehydrated...weak, dizzy call in and go get some fluids. Good luck.

  • Kristyjean81
    Kristyjean81 Member Posts: 3
    edited August 2017

    what news? Can you share? I was looking into boiling the papayaleaves. :)

  • Les123
    Les123 Member Posts: 29
    edited August 2017

    Hi Rebeka, glad to see things are moving along for you and starting your chemo soon. Sometimes it is so confusing trying to figure out what to do and the choices to make. I did surgery first and chemo afterwards. I did four rounds of chemo. I didn't have a port put in. I did take the Neulasta shot all four times. Never had an issue with my white blood cell count or infection. I took Claritin three days before the injection in one week after. That helped a lot. Had my reconstruction surgery about six weeks ago and now returning to work the end of the month. Looking forward to putting this all behind me :-) however, I do have in the back of my mind of this recurrence or metastasizing. I just try to stay busy and not think about it. I have my first three month check up with my medical oncologist on the 24th. Did my blood work today. I am praying my tumor marker has gone down. Keep me posted on how you're doing through chemo.

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    VL22 and rdeesides, waiting really sucks, especially when you've finally wrapped your mind around the diagnosis and accepted the treatment plan with the many ways both of those impact your life! Sending good thoughts your direction so you both get start marking those treatments off as done!

    Beatmon and Les123, thanks for popping in with advice and encouragement! I really needed it today 😊. I was feeling great Friday going in for CBC, counts were low so I had neupogen shots Fri, Sat and Sun but ended up in the ER very early Monday morning with a fever of 101. Chest X-ray and urine were good & still waiting on blood cultures, but given IV antibiotics and started on oral ones as well. Thought the 3rd neupogan shot as making me really achy thru my back and pelvis, but maybe it was really fever achiness? Long night with little sleep but feeling better tonight. CBC again tomorrow and possibly more IV antibiotics or another neurogenic shot. There's quite a learning curve dealing with all of this, so it's good to hear it gets easier to anticipate some of this stuff

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    les123, keeping you in my prayers for good news when you see your MO later this month

  • sunnyjay
    sunnyjay Member Posts: 238
    edited August 2017

    Les123: Thanks for the advice about taking Claritin 3 days before the shot. I had really terrible bone pain after my first infusion and my MO told me to take Claritin an hour prior. I checked my notes and that's what I did and still suffered. So I'll try your advice and start Claritin a few days prior. Round 2 will be this Thursday.

    Willow: I had some really bad bone pain (days 5-7) after my first infusion.I had a fever of 100.4 one night but took Tylenol and it went down right away. I know exercise has helped some people. Since it was hard to move too much, I used a foam roller to massage my legs and lower back. That seemed to relieve some of the pain.

    Right now, My current side effect is the hair loss. It started falling out towards the end of last week and is continuing to fall in handfuls. I wear a sleeping cap during the might to help.minimize it on my pillow and also to minimize the scalp pain. Still haven't shaved it all because I have read that the scalp pain feels worse if you're bald. At the rate it's falling out i guess I'll be shaving it soon.

  • Angelica25
    Angelica25 Member Posts: 26
    edited August 2017

    Hi Everyone,

    I hope you don't mind me joining your group. I started Chemo end of May, finished DD AC end of July, and just started Taxol. Started off with DD but only had one infusion and had to switch to weekly Taxol due to neuropathy and excruciating bone pain. Compared to Taxol, AC was a breeze for me besides the nausea, no other issues.

    I will be with you until the end of September with my weekly infusions. So far the weekly infusions of Taxol are a breeze. No nausea, a little bone pain on day 3-4 but nothing compared to DD one I had.

    Hope everyone is doing well.

    Angie



  • Kritti
    Kritti Member Posts: 23
    edited August 2017

    Let's talk diaharrea... I know I've seen a post where someone had it, but can't remember... when did that happen? I was woken up last night at 2am with stomach cramps and have had 2 more bouts this morning - 3 so far in 6 hours. I'm day 8 of my first TC and thought I was on the upswing.

    Willow - that sucks! I'm glad to hear you're feeling better.

    Welcome Angie, rdeesides and vl22. Sorry you're here but glad to have you!

    Paulette - hope you're feeling better

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Angie welcome to our group.

    Hair is falling and I'm debating when should I shave or just wait. Day 4 was a dog house. I didn't do a thing yesterday except sleep. I'm hoping today I have enough rest so I have energy to do some walking and feel like a person again.


  • Clearpath
    Clearpath Member Posts: 38
    edited August 2017

    Hi ladies and welcome new members to our group. Today is day 7 for me and not feeling bad fortunately. Two questions: my TE feels very tight (I assume that is normal)? And when should hair start falling out ( I am ready with wigs, hats, etc.)

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    Kritti, your opener made me smile! 3 bouts in 6 hours is miserable - I hope that was the end of it and you are resting comfortably now! Could it be something you ate? I'm also doing TC... I had some diarrhea with intestinal cramping and lots of gas - first and worst episode was at the end of the cytoxan infusion (apologies to everyone in the vicinity.... infusion area might be rethinking their "no fragrance policy" which I found sadly Includes no air freshner in the bathroom). Sorry for TMI, but seems like chemo gas is on a whole new level! I had a few more bouts, about once a day for the first 4 days, and lots of stomach rumbling that felt like it could become diarrhea if I ate the wrong thing. Eating stuff with fiber seemed to bring it on within 45 min or so (even a small wedge of watermelon), so I ate almost no fruit/veggies/beans/roughage for the first 5 days and slowly added them back in as my cramps/gas died down. I was taking the zofran/compazine regularly during the first 5 days too, and the constipating side effect probably helped slow down the diarrhea. Next chemo I will avoid dairy containing lactose and roughage for the 1st 5 days to see if it helps (hummus and cheese stick during infusion may have caused that first bout).

    Welcome Angelica! Glad to hear weekly taxol is so much tolerable than the DD and yay to seeing the end of chemo treatments this month 😄

    Sunny jay and Paulette, I'm sorry you're dealing with hair loss and scalp pain... what a tough decision to make about shaving it. It sounds like you are both prepared with wig/hats, but it doesn't make the mental preparedness any easier 😞

    Clearpath, each chemo has a diff timeline for hair loss. Mine is expected at 3 weeks (TC), so you could google for yours. No idea what TE is.... all I could come up with is tight end (yup, excited for football season... go 'hawks!!!!)
  • Clearpath
    Clearpath Member Posts: 38
    edited August 2017

    Hi thanks Willow22 - TE is "tissue expander"

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    clearpath, thanks for the explanation for TE. Reconstruction in the future after rads, so will follow what all this is like.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    On my first chemo I deal with stomach cramps and gas from day 5 to 10 finally it calmed down. On my second round of chemo I'm on day 5 I don't have any gas yet but I have constipation. I am not sure which is better and I ate fruits and Veges now I will try stools softerner plus prune and juice. I wouldn't try senna as I did last it was a little too strong for my stomach.

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    Paulette, constipation is painful - hope you are feeling better soon!

    Gingernurse - how are you doing? You had such a rough time those first days after chemo - hoping you are past that and getting back to normal!

    Kritti, I was updating my symptom notes, and saw that I had a very iffy stomach with gas and cramping and occasional diarrhea thru day 6, and then just a little intestinal cramping but better appetitite days 7 & 8 - so it went on a bit longer than I thought.

  • sunnyjay
    sunnyjay Member Posts: 238
    edited August 2017

    Kritti: I had an episode of diarrhea on day 9. Not sure if it was something I ate because I was fine until the late afternoon. I had 2 back-to-back episodes. I took Imodium, and was fine for the rest of the night. Prior to this, I had the occasional tummy rumbling but my appetite was almost normal. Hope yours has settled down now.

    Clearpath: I always have weird feelings with my TE (I only have one - left side). I always feel tightness after an expansion, and this is the weird part -- whenever I experience a cool temperature change, like when I go from warm temperatures to an air-conditioned room. Or sometimes, when I go for a walk and there's a cool breeze, it gets tight. I think it's just my muscles around it contracting when it's cold... i don't know. My PS had never heard that happening before, but she cracked me up saying my chest was like a barometer. Once in a while I notice it gets pink and warm, usually after wearing a bra all day. My MO checked it out during my pre-chemo appt today, and he said it was healing fine. My PS didn't want to give me antibiotics, so we are monitoring it. It comes and goes, so she's not too concerned. If there is any redness (aka red breast syndrome), check with your PS in case there may be an infection.

  • Kritti
    Kritti Member Posts: 23
    edited August 2017

    Clearpath - did you just have your TEs pumped? That's the only time mine feel tight. Well, except the other day when I did too much, but that was simply from overuse.

    Thanks for chiming in on the BM issue willow & paulette & sunny - so I guess it's one of those symptoms that vary. My stomach has been pretty touchy from the start, last night was just new. Hopefully it was something I ate and won't be a recurring issue. The only thing I can think of is that i had way more dairy than usual.

    Paulette, I hope you did feel better today. You might want to try fiber - like Metamucil. That's what usually helps me.

    My scalp has been crazy itchy and dandruffy the past several days - I don't know if it's the hairloss precursor or the fact that I have to use tons of product in an attempt to tame my crazy hair after I got it all cut off. In addition to my head, my face has decided to become an oil factory. I've never had oily skin before, but now I do and I'm breaking out like a teenager.

    BTW - anyone know if we can drink alcoholic beverages? I could really go for a glass of wine, but I forgot to ask my MO so I've been holding off.

  • Kritti
    Kritti Member Posts: 23
    edited August 2017

    sunnyjay - now that you mention it, i know EXACTLY what you're talking about with it tightening when cold. I almost feel like it does that during times when my nipple would tighten up with cold. And since I no longer have nipples, it's quite a strange sensation. Like the skin and tissue around the expanderd are contracting with goosebumps.

  • Clearpath
    Clearpath Member Posts: 38
    edited August 2017

    Hi Kritti and sunnyjay - I only have one expander - it just feels very full, and I am scheduled for another expansion next Monday.  I'll ask the plastic surgeon about the tightness, but I don't feel that there is any infection or issue.  It just feels like there isn't any more room to expand, and I have a way to go!  I will also not complete reconstruction until after rads and after I have a prophylactic mastectomy on my other breast (my unexpected BRCA1+ results came in too late so they only operated on the diseased breast).

    I gave up my nightly glass of wine for the duration just to be prudent.  Not sure whether drinking is allowed or not, may depend on the type of chemo.  I do miss the wine though, and my husband doesn't like to open a bottle just for him!

  • Kritti
    Kritti Member Posts: 23
    edited August 2017

    Clearpath - how long has it been since your last pump? It looks like I had my surgery about a week before you and have only had 2 fills and my last was 2 weeks ago - I think I've got about 300cc in each expander. He started them off with about 100, then I think 80-100 additionally each pump. My PS likes to wait several weeks between what he calls a "poke & pump" (I love him 😂 ). I feel tighter than presurgery, but it's also a completely different setup. He also said that my breasts are now "animated" due to the fact that it's the pectoral muscle directly under the skin. Essentially now you can flex your pecs like a guy and your boob moves, whereas before if you flexed the pocket of breast tissue absorbed the movement and you couldn't see it. My PS also told me I'd get extra points if I learned how to get the tassels to rotate in the opposite directions at the same time . Have I said I love him, yet? Seriously my favorite doc in all this mess.

    If you don't think you can handle another pump right now postpone it a couple weeks. Let you muscles relax a little more. It sounds like you've got a ways to go in the whole reconstruction process - what a pain in the ass your results didn't get back sooner - so don't rush it.

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