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Starting Chemo June 2017

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Comments

  • moodyblues
    moodyblues Member Posts: 393
    edited August 2017

    LTWJ.  My oncology nurse said to take Vitamin B6 100 MG daily and they find it helps with neuropathy.  Hope this helps.

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited August 2017

    Moody, I had my first Taxol today, and my ONC said the neuropathy is a possible SE, but it is usually temporary. I have tingling in my right foot anyway (just a few months after my first DH died), so I am use to the sensation. She said that if it happened elsewhere, then we would know it. It can be super annoying, but I have learned to live with it. Less noticeable with shoes on, oddly.

    The Taxol went fine, but I must tell you that the 50mg of Benadryl in my premeds gave me an INSTANT fuzzy-headed feeling, then I was hardly able to speak and just zonked...lol DH was like, "Are you ok?" I just mumbled yes. I was able to sleep about 25 mins. She said it was a lot, and it's to stave off a possible allergic reaction to Taxol. If I do well, they reduce that amount by half next time.

    I feel good. I told my ONC we were going away for a few days. She precribed me an antibiotic just in case I spiked a fever and was away. I thought that was proactive. I am just elated I don't have to take anything but Prilosec each morning (and only anti-nausea if needed). I should sleep well tonight and then have tomorrow to rest before we leave on Sunday. I should have landed by now in Costa Rica (my original plans), but I am just thankful to get away for a few days.

    The Effexor for my hot flashes seems to have improved things by at least 50% in just 2 weeks. I am happy about that.

    Oh, my hair stubble that is coming in they think I will lose again. Brows/eyelashes did not fall out with AC. Hope they don't with this -- along with my toenails!

    THE BEST PART OF TODAY: So, everytime they swab my port with alcohol, I get that rush of taste in my mouth and then spit for 2 days. I told my fav nurse today and she suggested we try Betadine! It worked! I had a Chick-fil-A large lemonade and kept it in my mouth the whole time she was accessing. It is very good and tart, so perhaps those two factors worked. You can bet I'm doing that same thing next time. No bad taste, and I have had several snacks to eat since then. I could cry tears of joy at this nurse's suggestion. So, please don't suffer like I did for 4 rounds if this happens to you. I think this will help me enjoy eating out while on vacation. Woohoo!

    One more on the books!

    Wishing everyone NO SEs and energy galore! Happy

  • peachyjeanne
    peachyjeanne Member Posts: 155
    edited August 2017

    Kim...glad your infusion went well and you solved the port problem. I'm sure it will make your getaway more enjoyable.

    Awhile back a friend asked me if I can opt to sleep through chemo. She thought it would be better to just tell them to "wake me up when your done." I told her it didn't really work that way with the Adriamycin. Maybe now that will change with Benadryl and I will snooze with the Taxol. Sometimes I feel like I want to snooze until the end of September and they can wake me when all chemo is done.

    Is the Prilosec post infusion for a certain number of days? I always got hiccupy on day 2-3 post AC but attributed it to the steroid. Once I stopped taking them, the hiccups calmed down.

    Moody blues...I had read about the B6, but to definitely ask the dr first. Too much can actually have the opposite effect and worsen the neuropathy.

    Hope everyone has a good weekend.

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited August 2017

    Kim good news on your last infusion. Have a wonderful mini vacation. Take care of yourself and if you're not feeling well then take a few extra minutes to chill.

    Peachy, I always get the hiccups except this time they gave me a prescription for Pantoloc which I take every day. I was taking Zantac for the first two infusions but not consistently. This time around I've had no indigestion, hiccups, or nausea. They told me I should have taken the Zantac every day and not just when I felt indigestion. Lesson learned!

    I'm off to a Look Good Feel Good session on Tuesday. We'll see what kind of miracles they can perform on this old gal. Lol!

    Just keep telling yourselves ladies that you're beautiful.

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited August 2017

    Peachy, My nurse told me to take the Prilosec daily. I did that through AC, and it is now the only thing I am "required" to take through Taxol. I take upon waking per their suggestion. I will say, I have had only queasiness early in the AC and no real nausea, so I am sticking to that. I used to often get hiccups, but I haven't been plagued with that. I do have a lot more gas than normal, though. Sorry.

    I, too, wouldn't mind sleeping. I couldn't do that through AC, but with the Benadryl it was not my choice yesterday...lol With 12 weeks of this, I would like to sleep through October. :)

    I was so elated this morning to put away three meds that I will not need for sure this time around. I am prepared to take the Zofran just in case, as we will be eating out every meal. That makes me a bit nervous. I will have to choose food carefully. I love salads out, but unless they convince me they triple wash lettuce and veggies, I will pass. I am craving some fried fish. Fish has been a turnoff for me thus far, and my DH usually makes wonderful baked fish. I need to get my fried on!

    I will say I only slept 5 hours last night, probably because of the steroid in the infusion. I feel good otherwise. My DH is running a 10k this morning, so I am going to see him finish. Then I have some packing and a Queen cover band performs at our town festival tonight. Hope I am up for that, as I know it will be fun. Perhaps Taxol is going to be kind to us. I am praying for us all.

    Pink, Enjoy the LGFG session. They give you a nice kit of wonderful makeup. I did learn a few techniques, and I appreciated the time and gift.

  • klt5817
    klt5817 Member Posts: 32
    edited August 2017

    I was also warned by my MO that Taxotere may cause neuropathy & was told to take 100mg of Vitamin B6, twice a day, throughout treatment.  I do feel occasional numbness/tingling on my hand but it went away after some yoga stretching and walking.  However, I found the following link from the Dana-Farber Cancer Institute very good read.  Apparently, vision change is also a chemo-induce-neuropathy.Singing

    http://www.dana-farber.org/Health-Library/Tips-for-Managing-Neuropathy.aspx

    Have a good weekend ladies.

  • susie_2017
    susie_2017 Member Posts: 142
    edited August 2017

    Question: I'm only on my 3rd AC but preparing for what's to come with Taxol. I went out and bought the Nail Envy nail strengthener($19.99) and noticed it had wheat in the ingredients. I have celiac disease. Im not one to go overboard about gluten but I am on a gluten free diet. I guess since Im not going to be eating this it should not be a problem. But curious if it will help or hurt to use. Im not going to ask my doctor because he told me at my last visit that some celiac patients can eat gluten while on chemo and not get sick. Well I'm not worried about getting sick I'm worried about my increased chance of lymphoma by eating gluten, something you won't see within hours of digesting gluten.

    My 3rd AC was a rough one. I missed 2 days of work after it. I just can't seem to drink enough. I love Coke/Pepsi and now it tastes like motor oil. Same with sweet tea, just can't do it. I finally found crystal light seems to make water go down more smoothly. Yesterday I managed to get a 2 mile walk in after work, feeling good too. I've gained 8 pounds since chemo began. I can't say it's all chemo's fault because I haven't been to the gym since I started. And I'm eating anything and everything! I find myself in the kitchen at 2a.m eating Lucky Charms, I have never ate in the middle of the night before! My husband said he's trying to sleep while his wife is up and down going to the bathroom or chasing a leprechaun around the kitchen!

    Smells! Smells! Smells! Is it just me or can you smell everything! I hate the smells of cleaning chemicals! I just gag when I smell rubbing alcohol. A musty basement is my enemy. Hoping this fades away!

    I still have my eyebrows and eyelashes but have noticed some thinning. Mostly loose lashes on my cheeks when I wake up. My biggest fear when all this began was losing my hair, and now I walk around bald without even remembering to put on a hat. Even in public! Yea people will look but honestly no one will ever say anything unless it's to give their support and prayers! Why hide it? I have cancer and I don't want cancer to have me!

    (I read this daily, may not post, but you are all in my prayers! Hoping all of you are enjoying the day! I'm off to clean my house and car!)

  • ml1209
    ml1209 Member Posts: 153
    edited August 2017

    LTWJ - are you doing chemo before surgery? That is what I did and yes, My BSO did an ultrasound halfway thru my treatment to see how tumor was responding.

    Kim - my hair started back after AC and has kept on growing :). My eyebrows and eyelashes went bye-bye though during Taxol :(. I finished mid-April and they have returned! My son always sucked on an orange sucker when his port was being flushed etc. He hated the taste and smell. I had it as well but only while it was being flushed. Cinnamon was what helped me.

    Susie- yes!! Smells were terrible for me. Same as when I was pregnant. Yes - it gets better!! I had no issues during taxol. And -I ate Lucky Charms as well :). During taxol it was middle of the night peanut butter and graham crackers lol!

    And I have lost 7 of my toenails :(.

    I just had my last radiation treatment yesterday!!!! Prayers and hugs all around for each of you. You got this!

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited August 2017

    Susie, Hang in there. I, too, HAD bad tastes and issues with smell--they are interrelated of course. Hyper sensitive to anything - good or bad smell. (Thankfully, Coke still worked well for me, but I know I didn't get enough fluids.) My brows are still thick, and I haven't noticed any loss with eyelashes (though mine were sparse to begin with.)

    By chance are they cleaning your port with alcohol? If so, the Betadine worked a miracle yesterday. Ask for it and perhaps it can help. Too bad I didn't find this out from the beginning. I had no issues yesterday or even today.

    Good for you for just going out au naturale on top. I have thought about it many times, but I always cover up, except to the mailbox and backyard.

    My doctor did warn me about neuropathy with Taxol, but I will ask about the B6 supplements. Maybe you should check with your Celiac dr before using. I cannot imagine it would affect you adversely, since you aren't ingesting.

    Feel better. You are almost done with AC. I honestly feel like the worst is behind me, I pray.

  • MsLin
    MsLin Member Posts: 64
    edited August 2017

    Susie - I have celiac too and will admit to eating gluten probably on a weekly basis since I started chemo. My theory at the moment is if it tastes good eat it. Crisp bean burritos from Taco Time are one of my favorites. My symptoms are not as bad since being on chemo. I still have some belly bloating when I eat gluten, but not like it normally would be. I also am not getting the mouth blisters that I would usually get. I can't tell if nose running is gluten related or lack of nose hair related. I'm guessing nose hair. Did you mean lymphoma or lymphadema? I'd never heard of celiacs eating gluten causing lymphoma.

    I'm in the same camp as you with weight gain. I've gained 6 pounds. I agree that it is lack of activity and diet. I'm normally a vegetarian and try very hard to continue, but I'm also anemic so I've had a few too many cheese burgers. I also ordered a steak in a restaurant one night. It was a bad choice, but I needed the iron. I can only eat so much kale.

    I still have my brows and lashes too. I have noticed them falling out a little more now that I've started Taxol. The last little bit of stubble on my head is also falling out at a rapid pace. However, if I look close I can see little baby hairs here and there on the top of my head. I've heard that some women begin to regrow their hair during taxol. Maybe I'll be lucky and at least get this considering I'm one of the rare ones who responds so poorly to Taxol.

    It's sad to say that I'd take AC over Taxol. Round #2 was just as bad as #1. I broke down and told my husband I can't do it anymore. He told me I could and I love him for that

  • hhuey
    hhuey Member Posts: 121
    edited August 2017

    I feel like I'd take AC over Taxol too..at least with AC I got a break where Taxol is every week. I finished 2 and needed a break so my doctor allowed me to take a pause and resume next week. I really needed it. School starts Monday and this will allow me to focus on getting the kids ready. I have been out of breath more easily and just have these general aches and pains all over especially in my chest which make me concerned all the time but per my CT and bone scan there is nothing there. I almost think it's anxiety and maybe I need something for that. I have to take imodium every day to make sure I don't get stomach cramps and loose stools. It is so daunting to think I have to endure 10 more Taxol some with Taxol alone and some with Herceptin and Perjeta. I almost wish I was doing dose dense just to get it over with but I know side effects can be heavier that way so I don't know. I just hate the fact I even have to go through this. It really pisses me off sometimes. Anyway rant over.

  • ml1209
    ml1209 Member Posts: 153
    edited August 2017

    MsLin- so sorry taxol is so hard on you. I had a friend who had to stop it. She switched to taxotere and did much better. We all respond so differently. I did have peach fuzz return while on it though :). Prayers things get easier for you.

    Hhuey- it is a tough road we are on and defintely feels like so much is taken from us. Prayers it gets better.

  • castigame
    castigame Member Posts: 336
    edited August 2017

    hhuey,

    DD AC was a lot less painful for me than DD Taxol. Taxol pain even lingered till a couple of days before next infusion while AC pain stopped on about day 5 or 6 the latest.

    Sorry you are caught w Taxol right now. I wish I can help you any way. I was in agony when I had taxol that I even came up w a song which goes something like "two more visits to my onco two more pricks to my port eight more bad days then i will be deported i cAnnot wait at all" You can say I was out of mind to make up lyrics.

    Glad you got to have a break to prep kiddos. And temporarily off of the toxin.

    Just thought of something. I used to take Ativan up to 1.5 mg a day. It knocked me out at night and helped me w anxiety. Anxiety caused chest pain for me. I also use Arnica gel sold by Boiron. It is whitish and light green tube. Publix has the very close second best price (Amazon is best but you have to buy multi pack or subscription) A bit pricey but it helped me sleep at night. As a last resort, I begged my family doc for pain killers. I know I sound crazy but opioid induced constipation offset diarrhea I had.

    Luckily for me I had some weight to lose. Lost more than 10% of my weight. If I remember correctly you are very petite. You have none to lose.

    I did BMX w 19 lymph nodes removal followed by 8DD chemo and slightly more than 1/3 way thru 30 rad sessions. Chemo by far is the most bleeping bleep of all. You will survive this bleep.

    Mimi

  • hhuey
    hhuey Member Posts: 121
    edited August 2017

    mimi,


    Thanks a bunch...I do have the Arnica gel which I use often after a warm shower and it does help a little..I am also going for acupuncture on Saturday so hopefully she fixes me up. I just read there is a condition called costocondritis which is inflammation of the tissue between ribs and sternum. I wonder if that is some of the pain I'm feeling. Going to try some a level daily to see if that helps and will talk to my MO about maybe getting something for anxiety. I do pretty well most of the time but other times my mind goes to a dark space and I have trouble getting out. Maybe I should make up a song too. 10 more pokes sounds daunting but when I look at the calendar it doesn't seem so bad. I can do it I can do it...surgery at this point seems a lot easier then chemo..I'm sure I'll be

  • gameoniwin
    gameoniwin Member Posts: 6
    edited August 2017

    Hi everyone. I started chemo the first week of June. I'm on taxotere, carboplatin and herceptin. The first 2 rounds were ok at best. Horrible horrible diarrhea. The third round did me in. I ended up getting a blood transfusion last Monday and it's the best I have felt in 2 months. They think I will need it every couple of weeks. I had other side effects that I wish would just go away but I'm celebrating a week with no SE. I was finally able to get stuff done around the house and feel "normal". Also had a repeat echo which showed a decrease but I'm at the low normal range so they are monitoring it closely.

    Lots of prayers and love to all the other June warriors out there.

  • susie_2017
    susie_2017 Member Posts: 142
    edited August 2017

    MsLin I typed it correctly, celiac patients who do not follow a gluten free diet have a higher risk for developing lymphoma. I work at a gastroenterology office doing endoscope and colonoscopies daily. When I was diagnosed with celiac I didn't follow the gf diet. I heard the doctors telling noncompliant patients this risk all the time but I never had a reaction to gluten. Nothing Imodium couldn't handle anyways. Well last year on 8-8-16 I decided I would follow the diet. I will say since I made the change I cannot tolerate gluten anymore. I tried to have a cheat day and I vomited all night. Since getting my breast cancer diagnosis this year in April I don't want to even chance it!

  • susie_2017
    susie_2017 Member Posts: 142
    edited August 2017
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  • susie_2017
    susie_2017 Member Posts: 142
    edited August 2017

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  • susie_2017
    susie_2017 Member Posts: 142
    edited August 2017

    HapB The diet does get easier. I actually enjoy it now. When someone brings donuts or cookies to work I can walk away without eating the unnecessary calories!

    Yes you can only heal the villi by eating gluten free, which decreases your chances!

  • MsLin
    MsLin Member Posts: 64
    edited August 2017

    Susie - Thanks for the info. I had no idea. My reaction used to be extreme intestinal upset, but went further in the full autoimmune issues. I had chronic pain, cold like symptoms and skin issues. I've eaten a strict gluten free diet for the past 6 years. Only recently have I thrown in a few non gluten free items and haven't had issue... yet. I remind myself I need to be careful for so many reasons. Thanks for the kick in the pant

  • PauletteK
    PauletteK Member Posts: 1,279
    edited August 2017

    I am from the July group and I read all the chats here got me really nervous about Taxol. Ladies you all are my mentors here and I'm hoping all of you will finish this journey with minimum SE.

  • lrfortuna
    lrfortuna Member Posts: 5
    edited August 2017

    I am happy to report that last Thursday was my 3rd of 12 weekly Taxol treatments. I find them so easy - especially since I keep getting the premeds cut down. I am down to 12.5mg benedryl and 5mg dexamethasone which I hope to have cut in half this week. Only issue is that's my red blood cells are still dropping so I'm hoping they bump up soon

  • T-Sue
    T-Sue Member Posts: 207
    edited August 2017

    Paulette, good luck to you with your treatment with Taxol. You can do it!

    Irfortuna, so glad you are managing the weekly Taxol well. A few weeks ago, I posted about my experience in weekly, low dose Taxol for cycles 1-9. You may find it helpful.

  • T-Sue
    T-Sue Member Posts: 207
    edited August 2017

    Hi June warriors,

    A few weeks ago many of us (including myself) shared what a tough time, emotionally, we were having. In my case it was that at the mid-way mark, this chemo seemed to be never-ending and SE getting progressively worse. I hope all of you are feeling better! I began my treatment in early June and have my FINAL Taxol next Monday after twelve consecutive weekly treatments. I'm thrilled to be nearing the end. Many treatments seems to be 12-16 weeks, so many of you must be nearing the end of chemo also. We can make it! I know that there is more ahead (for me: Herceptin infusions every 3 weeks for a year and a reconstruction surgery in a few months) though it will be wonderful to have this chemo step behind me. Hang in there!

  • PauletteK
    PauletteK Member Posts: 1,279
    edited August 2017

    T-Sue - I belong to July group but I always lurking here so I can pick up more info. So glad to see some of you completed this terrible journey, I'm hoping I get there soon!!! Best of luck! 🙌🙌

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited August 2017

    I've been busy with my 94 year old Dad who was in hospital and now at rehab. He is confused in his new surroundings and does better when a family member is there.  I am thinking about all of you and always read your comments but won't have much time to reply until things get back to normal with him. I am just glad I am feeling well enough to be there for him.  Good wishes to all of you sisters.

  • Tpralph
    Tpralph Member Posts: 281
    edited August 2017

    I'm having my last ac and t tomorrow and then onto DD taxol every two weeks. Anyone doing this and how has it been?

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited August 2017

    I'm glad to hear that most of you are doing okay. Just remember to tell yourself each day: "I can do this".

    Julia so sorry about your Dad. I use to do pet therapy in the nursing homes every week. It's very difficult for them when they first move in. One lady I visited was so confused and depressed. She kept telling me about how lonely she was. I always made an extra effort to spend more time with her. After a couple of months she started to adjust and made some new friends. It's just takes time.

    Tralph I had my last AC three weeks ago and I'll be starting my Docetaxel (taxotere) this Friday with any luck. With luck you won't experience any side effects. I know I'm nervous about the first treatment.

    Kim how was your mini vacation?

    Susie, HapB, and MsLIn: Years ago I went on a celiac diet to help with digestion and food allergy issues I was having at the time. It was a challenge. That was thirty years ago and there wasn't much known about celiac. There's so much more awareness out there now for celiac and many more options to choose from. Our intestinal health is very important to our overall health.

    I went to Look Good Feel Better yesterday. It was good fun. I'm not sure I look much better but I did feel good about all the products you get. Our group received earrings as well. I got to talking to the woman beside me. By the time they figured out she had Leukemia they had given her one week to live. They immediately started her on Chemo and found that her brother was an exact match for a stem cell transplant. She then spent 90 days in hospital while her WBC came back to normal. Amazing! It was encouraging to hear that she is now cancer free.

    Another little story. I was in Sears wandering around looking at things waiting to meet up with my sister-in-law for lunch when this lady approached me. She started off by saying she didn't want to intrude but how was I doing with my treatments. I was a little shocked to think that it was that obvious. But after talking to her she told me that she had just gone through treatment as well for lung cancer. She had both chemo and radiation at the same time. She's one year out from treatments and all her hair is back and she's feeling pretty good. There is hope and we shouldn't give up before the miracle happens for us.

    I asked my sister-in-law if she thought I looked like a chemo patient as she hadn't seen me since I started chemo. Other than looking pale she couldn't tell. I guess it's like the old saying: It takes one to know one.

    Thursday I get my blood work done to see if the WBC are okay for my next infusion. Although I have no idea where they're going to fine a suitable vein because my arm is swollen and sore from the last three. They told me it can takes months before the veins go back to normal. If they have to put it in my foot or my leg then I can't get up to go to the bathroom. I don't think they'll be very happy if I pee in their chair. Lol! Glad when this is all over.


  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited August 2017

    If you need a laugh go to OMG They Found A Cure For Stupid forum.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited August 2017

    Pink - I love to read your post it brings smile to my face. Thank you.

    Good luck on your vein and infusion. I'm going to get mine third AC in couple days

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