Anyone.Starting Chemo in October 2016?

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  • KLNiss
    KLNiss Member Posts: 40
    edited November 2016

    Dogwoodpos and VLH - I cut my hair super short - pixie cut - in anticipation of it falling out. I started to lose it significantly about 3 days after second treatment. I got sick of the shedding so my husband buzzed my head. I kind of regret that actually but no big deal because I will be bald in a few days. But, it did hurt - not the buzzing but the super short stubble. Hard to lay down and my caps bothered me.

    sending strength

    Kathy

  • VLH
    VLH Member Posts: 1,258
    edited November 2016

    Kathy / KLNiss, interesting about the stubble bring painful. My buzz cut was at Day #8, earlier than needed, but the only day my friend was available. I've had the scalp tingles and the top of my head has felt slightly bruised at time, but my stubble has remained soft and I've had no problem falling asleep due to it being uncomfortable.

    Lyn

  • Ella22
    Ella22 Member Posts: 39
    edited November 2016

    welcome Kathy- I too had my hair buzzed and the stubbles hurt! Plus they are falling out too! I will attempt to use a razor in the shower this weekend and see if that helps! This is the place where everyone understands what each other are going thru!

    Hugs and prayer

  • Nfullblume
    Nfullblume Member Posts: 171
    edited November 2016

    Ive got a question on nausea meds. I had the 3 days of Emend pills and they were magical. I didn't need anything else. Today I went to Xofran and I've been taking that every 8 hours. It's day 4 and still no nausea. I want to stay in front of the nausea meds, but also don't want to be taking unnecessary medication that could cause C. Do you guys have any advice? Should I stick to the Zofran every 8 hours throughout the bulk of my first cycle and then try to wean off earlier in my2nd cycle?

  • chickdudefood
    chickdudefood Member Posts: 51
    edited November 2016

    Nfullblume, I am about to have chemo #2 on Monday and I also experienced no nausea. Same regimen, AC now and Taxol later. My directions post-chemo were to take the meds "if you are nauseated" of course on a schedule, but I stopped several days ago with the thought that if nausea came, I'd take them. I haven't needed them at all. Of course, I'm fully prepared for chemo #2 to be either the same or completely different, but at this point all I'm taking is claritin for bone pain post neulasta which I also haven't had, but since it seems to prevent it, I don't really want to chance that SE.

    Kate

  • Connie1230
    Connie1230 Member Posts: 192
    edited November 2016

    Nfullblume, I stopped taking it after 4 complete days of taking it both times and never had any nausea but I started taking it along with the Emend not after I was done with the Emend. I don't know what the right thing to do actually is but I was told this was ok.

  • Nfullblume
    Nfullblume Member Posts: 171
    edited November 2016

    Thanks Connie and Kate. That helps a lot! I think I will take the Zofran through Tuesday-ish and then see how I fare. That will give me a week of no meds before injection #2.

    I'm feeling much more lively this morning. Day 5, hopefully my cute little red blood cells and platelets are marching around getting the job done this morning. The Neulasta headache seems to have lifted. I'm craving hot chicken wings for lunch. Clearly not the choice I will make, but I can pretend right!?

    Barb, have you escaped yet? Thinking about you!

  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited November 2016

    So I'm still in the hospital, plotting my escape. They gave me a Neupogen (similar to Neulasta) shot yesterday, and my blood-work is showing the my neutrophil levels are starting to go back up, so I'm thrilled. I don't know if its enough to get me out of here ... waiting for a doctor now. Worried that after all of this starchy hospital food and days in bed, my pants won't fit! There's always something ....








  • deemendoza
    deemendoza Member Posts: 84
    edited November 2016

    Hello ladies,


    I've been mia since my 2nd treatment (Thursday) my SE have been pretty the same some nausea, very fatigue and super emotional. Lack of taste. And 24hours after my neulasta injection every bone in my body ached. These SE came sooner than the last time.

    Has B2Alicia checked in? Haven't had the energy to scroll up.. welcome to any newbies, sorry you're here but glad to have you in our circle of sister hood.


  • Ella22
    Ella22 Member Posts: 39
    edited November 2016

    Deemendoza- Sorry your having such a rough time on 2nd chemo! Sounds like the same SE as I had on my first treatment. I'm so dreading my 2nd on wednesday! I know we will get through it. Many Hugs and Prayers! Stay strong

  • Al12
    Al12 Member Posts: 79
    edited November 2016

    I finally was able to read everyone posts and I'm sorry Barb your still in the hospital but hopefully not for too long.

    Nfullblume, Regarding the nausea meds I was only told to take the pills that are every 8 hours for 3 days post chemo. That is what I've been doing I am not taking them longer then that. So far Nausea is very minimal.

    for the past 2 infusions I have had a great experience at the hospital but this 3rd time not so much. I think the nurses make such a huge difference and my nurse this time was mediocre. She was also a bit rough with my port when finishing up. Also I had my 3rd infusion switched to Friday because my Onco was on vacation and I had another Onco checking in with me so when the schedule girl scheduled me for my last of AC infusion she scheduled me with the other doctor and not my own. We didn't realize it until we were about to leave and it was too late to fix it. Now I need to call tomorrow and have everything sorted out. Things like this makes it a bit annoying. My visit with my sister in law was lovely and she left today which is good because today I don't feel good. I'm still in bed with no energy but other then that I am only a bit achy so not that bad. Not sure if I will be able to go to work tomorrow though it usually takes me 2 days to recover. I hate to miss a day of work but def don't want to be stuck in the commute not feeling well.

    about to get myself in the shower hoping that will perk me up a bit.

    have a lovely Sunday everyone.

  • VLH
    VLH Member Posts: 1,258
    edited November 2016

    Barb, great news on the improved neutrophils.

    Sorry to hear about the side effects, all. I think I'm somewhat unusual in that I've struggled throughout this entire period with intermittent nausea. I seem sensitized to blood sugar that goes low, but also feel queasy if I do eat so kinda a no-win situation. It's not rush-to-the-bathroom queasy, but still yucky.

    Lyn

  • Nfullblume
    Nfullblume Member Posts: 171
    edited November 2016

    Alla, that stinks. Hopefully they will get you back on the right schedule with the caring nurses and your MO. I did my first injection on a Wednesday and I'm liking having Sunday to feel good before going back to work, so I think I'll keep Wednesdays. Hopefully, your ickiness lifts. If not, enjoy the vacation day!!

    Have a great Sunday, everyone.

  • Whistlestop
    Whistlestop Member Posts: 45
    edited November 2016

    -Hello all..... Joining in as I started my chemo run Oct. 21st w/ first "Triple Cocktail" Taxol , Herceptin, and Perjeta. ( 6.5 hr day did pretty well ) The Triple is every 3rd week, with the other weeks as "Single Cocktail " Taxol only. 12 weeks straight. ( w/ an adjustment week of Thanksgiving ) 2nd wk : Oct.28th, well. 3rd - 11/4. My Friday routine for a while.

    Getting accustomed to the temporary subdued version of myself. Did a pre chemo hair cut from long to a bob and yesterday, went a Pixie. Thought small amounts of hair coming out would be easier to handle. Did better than I thought on the pixie. Everyone loves it.

    Side effects minimal. Low grade short term headache comes and goes. . Dryness of skin. Chapped edges to the lips with some rawer places on my face. And some "gas" which is a rarity for me .,I have been so regular prior to this. Awaiting word from Onco if GasX is okay.

    Starting to get the itchy scalp. Anyone tried the coconut oil or perhaps tea tree oil in olive oil treatment ?

    Interesting pre-loss of daylight savings I woke of wide awake ready to roll @ 5:15, and down for the count 9pm ..... so my body clock shifted. Retraining the sleep routine, as fall back 4:30am was too early.

    The one thing I am amazed by are the "mini" emotional moments, joyful ones, not pity party ones. The outpouring of support from my work and friend community & neighborhood and then switching to being a "receiver" vs a "giver" has thrown me more than a lot of the rest. My emotional moments must be the release I guess..... I am not quite sure. That's been the biggest surprise.

    Look forward to reading and sharing more... Terry ( aka whistlestop )

  • Connie1230
    Connie1230 Member Posts: 192
    edited November 2016

    Dee,Mendoza, sorry to hear you're been suffering the side effects. I find it curious that your Neulasta reaction is quick and mine was a week after chemo. I'm wondering when everyone else's is? I wouldn't have expected that. By remaining on the Claratin every day, I had no Neulasta pain at all with the 2nd treatment. I,also have the fatigue, emotions and lack of taste. Infusion #3 is tomorrow and I'm as nervous as the first. Because I fear that the side effects I haven't had, will come in full force with #3.


    How is your hair holding up.Dee

  • chickdudefood
    chickdudefood Member Posts: 51
    edited November 2016

    Hi everyone,

    Chemo #2 in a few hours. I was so nervous for #1 that I didn't sleep at all the night before; today I feel curious and ready. I'm going to ask about taking the steroids down a notch but if they say they think I should have the whole package, I'll do it. So I'm ready for a week or so of brain fog and aliens in my head, and as soon as the first clump of hair falls out, I'm off to the barber shop to have it all off.

    If my experience is anything like last time, day #2 will be the worst one with headache and generally feeling like somebody else (somebody highly jumpy and unstable) is in here. And day #2 is voting day (I voted early) so I think I'll probably not be watching any results but will just wait to pick up the laptop on Wednesday morning to see what happened. It is odd to be so wrapped up in my own stuff at the moment that I almost don't care what happens outside my own body--perhaps a blessing this voting cycle.

    I had a massage on Saturday with my longtime massage therapist, a mistake I won't repeat. I showed her the port and explained about the lymphedema risk and that she had to be very gentle on that arm, and somehow she managed to touch the port area (I almost jumped off the table) and to squeeze the arm instead of stroking it. From now on, if I can afford a massage at all, it will be with someone who's trained in oncology massage. I know I can find one in the Boston area, and that's my main wish list item for Christmas--gift certificates for massage.

    I managed three yoga classes last week in addition to my home practice, one of them being a house call from my favorite yoga teacher who outlined a strategy for developing my home practice in light of cancer treatment. With any luck, he'll come every other week. As this proceeds, I'll be doing fewer public classes (as it was, there was plenty of coughing and sneezing in the room yesterday) to try to stay out of germ's way.

    The first week post-chemo I didn't trust myself with sharp objects, so no real cooking, but I made a butternut squash soup on Saturday that will carry me for a few days. So happy to be able to chop something without being insanely fearful that I would hurt myself--my concentration disappeared during week 1 last time.

    Oh, for anybody looking for something to watch, I recommend "The Crown" on Netflix, the story of young Queen Elizabeth II. I inhaled all 10 episodes this weekend. I'll happily take recommendations from you all, please!

    So, as my mom would say, "onward and upward".

    Best of luck to everybody, and lots of love,

    Kate

  • deemendoza
    deemendoza Member Posts: 84
    edited November 2016

    Connie, I know I seem to be the only weirdo that SE come on so quickly, Good Luck today sending your tons of cyber hugs!


  • deemendoza
    deemendoza Member Posts: 84
    edited November 2016

    Morning Ladies,

    TMI I know but has anyone else dealt with constipation? Just curious what's worked before calling my ONC wondering if some of the nausea is due to not being able to go and being backed up..


  • Al12
    Al12 Member Posts: 79
    edited November 2016

    deemendoza, try Miralax it works really well. I start taking it the day after chemo until I'm done with taking nausea meds since that is what causes constipation.

    Kate, do you have amazon prime? good girls revolt is great! good luck with #2 hope it's not as bad.

    Connie, For me nuelasta the first time kicked in on day 8 seems everyone is different. 2nd time around I felt nothing maybe because i've been taking claritin daily. Just had my 3rd chemo on Friday and we'll see how this goes. I asked my Onco and she said some people will feel it on day 10.

    Nfullblume, I wish this can be my vacation day but I no longer have any days left. My vacation kicks in again this November but I told my HR that will be for my vacation I take in the summer. I was able to switch back to doing chemo on Thursday my last AC will be Nov 17th. Oh I can't wait. They say Taxol is easier I hope they are right. Yesterday was brutal. My whole body hurt like every part of me was bruised and the fatigue kicked in pretty hard too. Now I'm home today recovering from yesterday. I rather have these days on the weekend. I guess they were right when they said SE will accumulate. If your doing your chemo on Wed are you taking off from work on Friday?

  • Nfullblume
    Nfullblume Member Posts: 171
    edited November 2016

    Alla, I did work last Friday, it was tough near the end of the day, because I felt very mediciney. But having the Sunday to feel good sure was nice. I'll see if the symptoms are the same in #2. My chemo is earlier on that Wednesday, so it might not work out as well.

    Dee, I'm also dealing with C. I did senekot on Saturday and Sunday and that helped a little. I actually drank some hot salt water last nice and I think that finally did the trick. I'm normal this morning and now off of nausea meds too. Google it. I wanted something more homeopathic, tired of constantly taking meds! Good luck!!

  • KLNiss
    KLNiss Member Posts: 40
    edited November 2016

    Hi Ladies -

    Barb - glad your numbers are headed in the right direction! Hope to hear you are out soon.

    Kate - thanks for the recommendation about the crown - I forgot about that one.

    If I am understanding some of the lingo correctly here is me: my SE kick in immediately - I get my injections on Fridays at 2 pm and by 9 pm I am taking the nausea medicine even though the anti - nausea meds are in my cocktail. Nausea for me lasts a good week. I also take colace and senna to keep things moving along but its still a process. I give myself the neulasta shot 24 hours after completing chemo so Saturday afternoon. My nadir has been the Thursday after chemo for both cycles so far - that is day 7 - then I feel like the neulasta kicks in and I am on the upswing. Today is day 11 and I feel pretty normal.

    Someone mentioned "gas" - when I wound up in UC after the first injection the doctors were concerned that I had constipation and no "gas" so I think having gas might be a good sign.

    I would like to talk about the "nether regions" for a moment. I have hemorrhoids and a yeast infection (thank you antibiotics) and my period and I have no hair there - which is new for me. That whole place is very unhappy right now. I take an apple cider vinegar bath, took the prescribed diflucan and use prep H. Any other suggestions?

    being a bad patient today - Kathy

  • Whistlestop
    Whistlestop Member Posts: 45
    edited November 2016

    chickdudefood thoroughly understand the anxiousness pre Chemo 1. Mine hit me about an hr before heading to the infusion center. Like heading for a plane ride the first time - BP - 139/85. ( The whole staff was amazing and soon relaxed into place ). Chemo 2 : a breeze - got dropped off and BP was 123 / 72. Huge difference. And last week Chemo 3 same thing , dropped off went in on my own and BP: 122/66. So I am flowing. Upcoming Chemo 4 - is my Triple cocktail day (Taxol Herceptin Perjeta) Reaching out for visitors to help break up the 5 hr. appt. As we become in tune / flow with this temporary situation on road to full health and vitality it's easier to breathe our way thru it. Ease of day for you.

    deemendoza as some one who was so regular pre - this journey, I had the mega gas and constipation after Chemo 1 ... I added Benefiber - just one dose a day. I did use a generic laxative once to get past the first stint. The Benefiber helped and I seem to be in a pattern. Ease for you as well.

    Al12 - Taxol for me has allowed me to do a streamlined regular schedule. Just paying attention to when the energy slides to immediately know to rest and reset. Countdown to 11/17 !!


    Glad to find this community......

  • DogwoodPos
    DogwoodPos Member Posts: 9
    edited November 2016

    I really struggled with constipation after the first round. I read online that I should ask my doctor. The oncology nurse indicated that it would be okay to take Senna (as I understand it a natural from the health food store) or other stool softener.

    I am hoping to plan ahead, drink more water before second chemo on Thursday, and eat the prunes I bought myself. :)

  • DogwoodPos
    DogwoodPos Member Posts: 9
    edited November 2016

    I do my own yoga practice at home, but want some different options. I wondered about checking in with the local yoga teacher at the gym and see if there are other options. Do you have concerns about attending a yoga class with so many people and germs in the room? I am thinking of attending a class.

  • Bumblebea18
    Bumblebea18 Member Posts: 8
    edited November 2016

    I started chemo on Oct 13 and just completed two rounds of TC chemo (out of 4). cant seem to get this information on my profile. I've had terrible constipation issues and have tried various solutions. Anyone have some good advice on this? Today I also seem to have some bone pain in my chest (chemo was 3 days ago). I think it's from the Neulasta. Also have had some skin issues, but am managing them ok ...How are others doing with side effects?

  • Al12
    Al12 Member Posts: 79
    edited November 2016

    Whistlestop, oh thanks!! I hope it's easier for me too once I start on Taxol Dec 1st. after the 3rd round of AC I am noticing a huge difference in energy then the last 2 times. I really hope the 4th one doesn't do me in.

    I'm feeling much better today but I still don't know how to rest properly. If I'm home from work sick I always feel like I have to do things around the house. Today I have managed to run errands, straighten up, put a way laundry and fix my broken drawer. I had to rest in between. But I have to say I think I would feel much worse if I just stayed in bed.

    Bumblebea18, The 1st time I did AC and started taking nausea meds that week I had terrible constipation so on my second round I started to take Miralax once a day starting from the day after chemo and for the next 4 days. Works like a charm. I have not had any issues since. When you say your having skin issues what do you mean by that? I developed some itchy rash spot on my hand between thumb and pointer finger. I have no clue how I got it but only now it's starting to go away after putting hydrocortisone on it.

  • Luwusu
    Luwusu Member Posts: 88
    edited November 2016

    Whistlestop, I am in the same boat as you! First chemo Oct. 19- taxol, perjeta, herceptin. Going for my fourth this Wednesday, the mega three again. Was diagnosed sept. 27. I am at Dana Farber, though don't live in MA.

    SE: diarrhea, mood swings, slight tiredness, redness on face, one sore on roof of mouth, a feeling of not being myself.

    I just had a port put in a week ago. I long for the day when my port area and neck don't feel so violated. Not pain, but they both feel sad and somewhat itchy. Went to a port because of difficulty with IVs. Hoping in another week I will not be thinking of it a second much.

    Good luck to you, and to everyone else on these October boards. Nobody wants to be this alone.

    Nancie

  • Bumblebea18
    Bumblebea18 Member Posts: 8
    edited November 2016

    skin issues: right now peeling around fingernails and fingertips. Last time I had blotches on my face..have been slathering vitamin E skin creams everywhere, which seems to help. As for constipation, I have had to give myself an enema..had been doing fiber supplement, Colace and miralax but they don't seem to do the trick for me so far. wondering if I should switch to senna or stay the course...I know this is TMI, but it is really uncomfortable...

  • chickdudefood
    chickdudefood Member Posts: 51
    edited November 2016

    DogwoodPos, I figure some people go to work and take public transportation, so driving myself to a spacious yoga studio, using my own mat, and being diligent about using hand sanitizer after the class and before I put anything in my mouth seems pretty safe. Also, the studio that I go to is not one of those where people are lined up right next to each other, and the yoga style isn't sweaty vinyasa, it's hatha, which means I'm unlikely to get anybody's bodily fluids on me...

    Are you using any websites or DVDs to follow along with? I have subscribed to a couple and their streamed web classes are really good. Let me know if you want a couple of recommendations...and there are some great YouTube yoga instructors out there, too.

    Just back from Chemo #2. Just as I sat down in the chair, my scalp started tingling, and about an hour later I realized that the hair behind my ears was falling out. So it begins. The top hair still seems pretty tightly attached, so I guess I'll wait a couple of days and then go down the street to the barber shop and have it shaved. Just in time for my "Look Good Feel Better" workshop in a week. I don't mind losing the hair, but I'm kind of afraid to see what my head looks like.

    The oncologist lowered my dose of steroids this round, since I had such an alien invasion/unable to sleep/unable to read/unable to watch TV reaction last time, and no nausea, to my great surprise, since I get seasick even looking at a boat and that's usually an indicator of being nausea-prone. They also firmly taped on the Neulasta pod, since last time I knocked it off and had to go in the next day for the shot.

    Best to all,

    Kate


  • Miles
    Miles Member Posts: 62
    edited November 2016

    Oh Barb! I hate that you have been trapped in the Hospital. I loved the comment about how all bald women look familiar to the Oncologist. I'm glad that you are keeping your since of humor. Keep looking for the funny. Sending love your way...

    Good luck to everyone on this journey...

    It basically sucks to go through Chemo; but hey the alternative would defiantly be worse.

    So. yeah... here we all are.

    I am going to get Chemo infusion #2 tomorrow...

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