Starting Chemo in December 2013

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited February 2014

    day 2 after taxol. I was up very hour last night but think that was the decadrom and the fact I slept 3 hours in the afternoon. Amazing how clear my head is today. Even my dry mouth feels so much better. Waiting to see what the lower GI tract will do today, so far nothing.  Feels like I am waiting for the other shoe to drop as far as side effects. 

    I started my B6 a few days ago and started l-glutamine yesterday. I am titrating it up 5 mg Last evening and today then will go to 10 mg twice a day tomorrow, 15 mg twice a day the next day.  

    Hope everyone has a good valentine!so day and a SE free weekend. 

    Barbara

  • Blessedw2
    Blessedw2 Member Posts: 16
    edited February 2014

    Barbara, I am feeling the same As you described after my first taxol yesterday also. Right down to the sleeping in the afternoon and awake most of the night. Can you tell me about the b6 and glucosamine you are taking?  

  • Leealice
    Leealice Member Posts: 87
    edited February 2014

    Sunny and 80 here today. Made me so happy and I wore flip flops but my feet were hurting and I looked and the soles of my feet are cracked and peeling. Also I'm getting muscle fatigue. Ex.- I will park in a parking lot and by the time I walk into the store by legs feel like I've been on the treadmill for an hour. Anyone else having this? 

  • jackieak
    jackieak Member Posts: 169
    edited February 2014

    back aches for me today, came home early from work, painful to sit, hearing pad coming out...I do not have the other issues I had with AC, gurgly tummy going on so I am waiting for that to hit soon....maybe time for a brownie....

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited February 2014

    My heels go from being fine one day to having deep cracks the next.  Foot filing after a shower and Aquaphor lotion are doing the trick for them. Chemo does weird things to my skin.  I got a rash from Taxol too.  Day 8 just like a/c.  Fortunately, I took Benadryl and it only lasted one day.  I found that my taste buds were way different with Taxol.  During a/c the taste got progressively worse each day with day #5 being the worst, then everything tasted normal.  With Taxol, every day was the same.  My tongue felt burnt and tasted like when you're a kid and you test the 9 v battery on your tongue.  It's been 11 days and my taste buds are still altered.  Also, my sense of smell is way off with Taxol which I didn't notice with a/c.  And, I got a horrible cold 3 days ago.  Coughing non stop for 2 days, blowing my nose every 5 minutes etc.  It's much better today. Last but not least, 2 days ago I was chopping onions and my thumb got in the way.  I'm pretty sure I needed stitches, but managed to stop the bleeding several hours later with a very tight bandage.  It's been quite a week.

  • RHGSR
    RHGSR Member Posts: 774
    edited February 2014

    leeAlice- I shake a lot. My hands and legs. Especially when I do a lot. I mentioned it to the physical therapist (seeing them post BMX/DIEP) and he said it was probably due to fatigue. I'll shake cutting up cheese or berries. 

    Mikesgirl- I've had 3 AC and since my third one my taste is completely gone. Inside of my mouth feels "soapy" fir lack of a better way to describe it. 

    Anyone get a bad taste when their port is flushed? I get a metallic chlorine taste. Also got that chlorine taste with the cytoxin this last time. Didn't have it the first two. 

    Only 6 more days until my last red devil!! Then on to Taxol. Is everyone having pain with Taxol around day 3 or. 4?

  • lorreymom
    lorreymom Member Posts: 149
    edited February 2014

    Just popped in to say hi, I got my first Taxol today.  Yeah!  1 down, 11 more to go.  My liver tests were still up a bit, but improved over the last 2 weeks.  They say I have Non-Alcoholic Fatty Liver Disease cause unknown at this time, although they suspect chemo induced.  It is reversable if we are careful, as I haven't developed cirrhosis yet.  I am thinking I should maybe talk to a nutritionist, as diet is the only known treatment right now,  Hopefully the Taxol won't aggrevate it.  

    So far so good with the taxol.  I am on a lower dose weekly.  Much easier to handle than FEC so far, no nausea.  Still having hot flashes, but doc confirmed I also have chemo induced menopause....yeah!!!  The side effect I was hoping for!  He says it is likely permanent...double yeah.  Although these hot flashes are uncomfortable & frequent!  I am getting at least 10 - 15 per day.  But they are tolerable since I now know what they are...in the beginning I thought I was getting a fever...but temp would always register within normal limits.

    Hope everyone is having a goiod Valentine's Day! 

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited February 2014

    Blessedw2- my MO told me to take B6 100 mg daily. He said the L glutamine was something I could take, but he does not officially recommend it routinely. He agreed it may help with neuropathy and will not hurt. I find most sites suggest 30 grams a day either 10 three times a day or 15 twice a day.  I got a big jar of powder from Amazon. I mix it in juice, it is tasteless very slightly gritty but easy to drink down. I will try anything to lessen the risk of neuropathy. 

    Little pain in my sternum/ rib area but 2 advils helped. Similar place where I hurt from the neulasta.  

    So nice to have saliva again. I can swallow bread without having to take  a sip of water.

    Barbara

  • J4DC
    J4DC Member Posts: 80
    edited February 2014

    happy valentines day! Just report the 1st taxol today was pretty easy. I took decadron and zofran 2h before chemo, then got iv Pepcid/benedryl before taxol. I also iced my hands and feet, which was a bit of pain- I kept running to the bathroom partially because the cold feet! Right now I feel pretty normal, except sleepy. No nausea and so much better than AC. The nurse told me d2-4 may feel pan or flu like syndrome - fingers crossed.

    Chausa, you are very brave and I was moved by your post. I have very similar diagnostic as you. I was going to go for BMX because TNBC is aggressive. I went to see a radiologist today. He told me lumpectomy + local whole breast radiation offers the same overall survival advantage as BMX and it's less aggressive. Now I am debating again. He recommended radiation to get rid of possible microscopic cancer cells even after lumpectomy with clear margin. You may want to discuss more with your doctor. 

    Have a great night, everybody!

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited February 2014

    I get that chlorine weird taste when my port is flushed.  I never tasted the chemo.  Just the flush.

  • J4DC
    J4DC Member Posts: 80
    edited February 2014

    same for me - the weird taste during port flush. Maybe a little bit for cytoxan, but was not as obvious. 

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited February 2014

    leealice - I have the same problem and also a chemo induced rapid heart rate that leads to fatigue and heavy breathing upon exertion.  Usually I have to stop halfway up the stars to rest.  Nothing like normal me.  And it got progressively worse with each treatment.  Today was mt last taxotere and cyclophosphamide.  

  • ADJ
    ADJ Member Posts: 226
    edited February 2014

    About the wierd taste with port flushes...I was taught to prevent a lot of that by exhaling while the flushes are pushed, or using gum or hard candy at that moment in time.  Really works!

  • chicopeach57
    chicopeach57 Member Posts: 166
    edited February 2014

    Crazywabbit and blessedw2, Had second taxol today and dealing with sleep issues again. The steroids have wired me up!  Also have a real problem with the runs and what I call bubble guts. It is midnight and I'm wide awake after three hours sleep eating white rice with cinnamon hoping that will help.  

    My blood count rose from 8 last week to 8.3, woo hoo! At least it is going up. But I just don't have the strength I used too and can get dizzy easy when getting up. 

    Lorreymom, I quit having periods three years ago and went through the hot flashes bad then. They will get better.  The night ones are the worse.

    Good luck to everyone and congrats to the ones that are through. 

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited February 2014

    I had my last taxol treatment via IV today! Next week they are putting in my port for 10-12 and then on to FAC.  I still haven't gotten any mouth sores, numbness or fingernail pain/discoloration.  I just had taxol #9.  I showed my doctor my nails and she said she though I would make it.  One person Blog that I read said it was week 10 soreness and then discoloration. We shall see.  Really not fair to lose the hair, boobs and nails! For me at least because i had a BMX already. I feel like  one of those future seeing people on  that tom Cruise movie.  You know where they stop crimes before it happens.  I hate no being able to remember stuff lol!

    Taxol has been a breeze, so much that I am really scared of FAC coming up in a few weeks.  I know this will only be 4 rounds, but reading SE's has me nervous.  When I get there in March, I will probably bother y'all with questions since I am reversed on the chemo train here.  Hope I  encouraging you to not worry so much about Taxol! I only have 3 more to go and no more IV!!  Woo hoo!!

    Side question- radiation: who is doing that?  I will start in June and end in July.  I hope  we can help each other through that as well!  A friend told me to start drinking  aloe Vera  gel. And to start putting aloe on my chest now to prepare it.  Anyone ever heard anything like this? I totally will start preparing externally as that is great advice.  I am going to ask dr about internal.  Don't want to block rays from doing their job.  

  • Spoomsister
    Spoomsister Member Posts: 61
    edited February 2014

    For me, the bone pain starts about 48 hours post chemo and lasts through day 5.  BUT I'm not nauseated like I was with AC, thank goodness.  I hate feeling nauseous. The tip someone said about putting a hard candy in your mouth before they do the saline flush really works.  I keep hard candy in my purse when we go to chemo for this reason.  We are getting so close to being done with chemo!  Hope you all have a great weekend!

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited February 2014

    Re taxol neuropathy

    sorry gals, I realized auto correct change L glutamine to glucosamine.  I am taking the Glutamine.  I edited my post to correct this. Did not mean to confuse any one. 

    Day 3 post taxol- Sleep good last night with the Ativan. Finally GI tract moved, no problem with it being loose, at least yet.  Not too achy today. Hope the other taxol newbies are doing well. 

    I was hoping to go out and walk but we have 2 inches of new snow on the ground and still coming down. I had to shovel a path off the deck to the grass 2 days ago for my dog to go out. The snow is a over her head otherwise. I am sick of winter and chemo, bad combination. 

    Barbara

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited February 2014

    I just realized one of my se has improved with Taxol.  I haven't noticed my eyes running for the past 3 days.  That's nice:)

  • Blessedw2
    Blessedw2 Member Posts: 16
    edited February 2014

    Mikesgirl so sorry about your week! Praying your thumb heals quickly!

    Jodi- I have to have radiation as well, but lung surgery first to remove a carcinoid tumor. Depending on recovery time I will start.

    Barbara - I have been struggling with the grey days here in Florida while on chemo. I always say I am solar powered; ) I cannot imagine what it is like where you are. Hoping you can get out today for a walk and some sunshine! Thanks for responding to my questions.

    Sore throat/ nasal started last night, not chemo sore but like I am coming down with a bad cold or something. Not sure if I picked up a bug or it's from the taxol. Kept me up hurting last night. I am worried about my WBC. During the ac chemo and the nuelasta they would get as low as 1.2 1 week after but then back up in time for next dose. Is anyone else concerned that has had low WBC? 

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited February 2014

    Wow, sounds like you all are having a bit of everything! I'm on day 5 of last TC. Steroids have kept me up for the past 5 nights. I think I have slept a total of 4-5 hrs this past week....really getting to me. Taste buds are gone, the Big C is back. A LOT of fatigue and heavy legs also. I see so many things I want to and should be doing, but my body is not cooperating. I hate not to be outside working in my flower beds. I am going to try to get some grocery shopping done today. So far, no aches from Neulasta shot, which was Thurs a.m. Lashes and eyebrows still intact. I have been wearing something on my feet pretty much non-stop, except at night sometimes, and not having any foot problems so far. I got hungry in the middle of the night and drank a protein shake....

    I hope you all can enjoy your week-end. Such beautiful weather here!

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited February 2014

    People have asked about Taxol and pain.  In my case, days 3-5 felt very similar to Neulasta.  I took hydrocodone on those days and it wasn't bad at all.  Plus with the dense dose, my mo wanted me to have Neulasta, so who knows how much was Taxol and how much was Nuelasta.  When I went for my 7 day post chemo blood work, the nurse practitioner started laughing when she saw my WBC count.  It was 25.3.  The week before it was 11 and before that it averaged at 5.  She doesn't think my mo will recommend the shot next time because she doesn't think I'll need it.  I'll let you know.  My thumb is healing wonderfully.  Also, I had no numbness in my hands or feet with Taxol.  I hope this continues.  I did, however, wrap my feet and hands in soft ice packs for the whole infusion.  Not very comfortable, but worth it if it wards off neuropathy.

  • RobinLK
    RobinLK Member Posts: 840
    edited February 2014

    I took my Naproxen (same as Aleve, prescription strength) last night. Woke up without the cage of pain today! So happy and relieved......

  • kjfromca
    kjfromca Member Posts: 283
    edited February 2014

    Hello ladies,

    I slept well last night, as the steroids wore off.   Woke up with my legs feeling heavy and my jaw is really sore.  Maybe this will keep me from eating too much for the next few days, I gained 5 pounds from my last weight in.  My fault, I was eating crap for a couple of weeks.  I still have to take the Neulasta shot as my WBC was 11.5 last time. Mikesgirl, I bet they give you a break next time with the shot if your WBC remains high... 25.3 wow.

     Interesting thing happened when I went for my Neulasta shot yesterday.  The nurses couldn't decide where to take my bp, as I still have a little blood clot in my good arm.  They were taking it in my ankle, but the head nurse told them that taking it in my ankle can cause problems.  They wanted to take it in my left arm, the one without the lymph nodes, I told them no and refused vitals.  They took my bp the day before chemo and the day of chemo using my ankle.   I need this blood clot gone.... 

    Kim

  • lorreymom
    lorreymom Member Posts: 149
    edited February 2014

    Kim ... What are they treating your blood clot with?  I had a superficial clot in my good arm too.  Specialist said it was due to blood vessel damage from the epirubricin.  I am on fragmin injections and clot is gone...at least no arm pain now.  I will be on fragmin for 3 months, but they plan to lower my dose after 1 month...which is in 1 week.  

    Jodi...I will be doing radiation around same time as you.  As I understand it, nothing topically will help prevent skin sores...may or may not happen.  It isn't a "burn", in the traditional sense.  The rads stops your skin cells from regenerating, so may leave "openings"when old skin sloughs & new skin doesn't fill in.  You just want to stay as healthy as you can so your skin doesn't slough too much.  At least this is what I was told.  They can give you creams to help discomfort & prevent infection if this happens.  I do not know about internal aloe.  

  • RHGSR
    RHGSR Member Posts: 774
    edited February 2014

    JODI -  I will be doing rads around the same time as you too. Been waiting to think much about it. Trying to focus on one treatment at a time. Still have one more AC before Taxol and I've already freaked myself out about the Taxol and how long it lasts. I have heard that after chemo, rads are a walk in the park. My girlfriend had rads only and she said she burned only the last week or so and she is very fair skinned (she's a red head and so they told her she probably would). She told me she used a cream that really help but it wasn't what the doc gave her. I'll have to ask her what it was. 

    Holli

  • DJJ
    DJJ Member Posts: 229
    edited February 2014

    Good Morning Ladies,

    Had round 3 of Taxol on Friday.  Only 9 more left!!! Taxol is still fairly easy for me. My body aches a little but nothing that a few IB doesn't take care of.  Unfortunately Neuropathy started in my feet last night.  I had a good screaming, throwing things cry over it.  If its already started after round three then how bad is it going to be after 9 more rounds???????? My feet just healed from Hand and Foot Syndrome from AC.  Take my eyebrows if you must BUT LEAVE MY FEET ALONE!  So much for B6 and L-Glutamine.

    Jodi, I start 6 weeks of rads about the same time you do.  My Lumpectomy will be in May, I don't know how long they let me heal before they start rads. Although it is appearing that there will be nothing to really remove, woohoo!! Fingers crossed for a complete pathologic response!!!

  • kimie06
    kimie06 Member Posts: 215
    edited February 2014

    ugghhhh  I am getting nervous about taxol number 2 on Tuesday as I have the numbness and tingling in my hands and feet already .. I can live with it right now but praying it doesn't get any worse.  not the side effect I was looking for.  we just got dumped on again with snow, in the last 3 days we must have got about 50cm....

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited February 2014

    question for those taking L glutamine. Are you taking it daily or for just so many days after a taxol treatment?

    Barbara

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited February 2014

    Kimie - I'd make a daily note of how that goes so you can review it with your MO over time.  On Taxotere mine hung around longer each time so for my last dose she decreased it by 25%.  I work on a computer and she wanted to make sure there were no long term SE.   

  • jackieak
    jackieak Member Posts: 169
    edited February 2014

    hi all.  I agree taxol allot better than AC except for the back and rib pain, and I also have some weird mouth taste again.  I am taking the L Glut daily, probably not as much as I should, for I'm not convinced it will work, but will avoid the nerve pain, damage at all costs.  I too work on my computer all day, and can't imagine not being able to do so.  I see the lashes thinning, yet I also see the hair I had left is longer, I can't see any new growth yet.

    I'm not going to do rads, I had the consult and have read allot of articles regarding my size of tumor and positive nodes, and there are as many articles and doctors who agree as disagree that it will benefit me.  Working in the business part of the medical field I also believe for some it's overkill and passes more health insurance money around, but for me I'm saying no to rads.

    I miss what my weekends used to be...looking forward to the spring time!

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