Starting chemo August 2017 - would love some moral support!

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

    Rdeeside- you can try the Magnesia and Benadryl mixed that's what in ththe magic mouth wash.

    Ladies - I have been really tired from my chemo and I hope tomorrow will be a better day for me since I'm having a doc appointment. Day 4-6 are killer, I hope taxol won't be that bad.

    Hugs to all of you.

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  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    On a different cocktail than you, Paulette, but totally with you on days 4-6. Thank god it's behind me for this round!Re-entering the world is nice. Hope you perk up soon.

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  • Travel_Girl
    Travel_Girl Member Posts: 210
    edited August 2017

    I have been off the radar trying to get a few things done before my 1st chemo starts tomorrow -- my surgery follows chemo - so have been in a frenzy to find surgeons that specialize in DIEP due to prior radiation of one of my breasts -- it is tricky. I am trying to be diligent about getting the surgery on the calendar for as soon as possible following chemo - it is a long surgery and takes a while to schedule. Where or where is the 'easy' button :) -- Quick and yet, qualified and in my preferred time frame -- must stay on top of it.

    Today I had my port placement, started steroids (day before, day off, day after pills) and tomorrow my 1st Chemo - I am as ready as I can be and will just have to let the evil drugs wave through my system. It is so awesome to have this group to get some ideas ( Dietician told me today -- they are more worried about the big D with my TC cocktail than other symptoms) - which is good to know, as i would have loaded up on things to prevent being constipated -- which would be problematic. BRAT is not my normal diet, as I am a carbo phobe in my 'real life' -- so trying to break that cycle. They also suggested to stay on top of the nausea drugs and that you can take more than one, just not at the same time -- so they suggested alternating 2 different kinds every 4 hours. Analogy was that you are attacking it with different types to cover the basis. Based on a tip on this site, I will even set my alarm at night to not miss a cycle.

    Penciling in Days 4-6 and going to keep a diary. Bracing myself for the fatigue - or trying too.

    Oh and I thought I was going to have give up going to the gym and they told me today it was ok, just bring your own whipes and constantly wash your hands, be very diligent. It made my day, as I was thinking that would be off limits. Gotta take the silver linings don't we.

    I hope you are all well and keep the tips coming.

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    I bought milk of magnesia and benadryl, as well as the Biotene mouthwash. I also ordered something off Amazon that says it is for cancer patients' oral health. It had good reviews so we'll see. Im going to do all the things. I tried the MoM and Benadryl today and it was gross but I guess if it works! Dr said to apply the MoM directly on sores with a qtip.

    As Paulette has mentioned Dr. also suggested Ensure since it's difficult to eat, or Carnation instant breakfast. They have both at Costco so I just bought a case of each. This afternoon I had a high protein smoothie at Jamba Juice. :-)


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  • Travel_Girl
    Travel_Girl Member Posts: 210
    edited August 2017

    rdeesides -- my dentist told me to call with any issues -- so make sure you try that route as well. I do hope the ingredients you bought help.

    Also on magic mouthwash - they said it is a liquid numbing solution -- swish around in your mouth for 5-10 minutes and then eat fast, it is intended to numb your mouth to eat - not sure about helping w/ mouth sores

    My onc team said that one of the best thing to help with the mouth sores is this mix:

    Rinse with 1/2 tsp salt + 2 tbsp baking soda in 32 oz lukewarm water. Rinse mouth frequently through the day. Said if salt burns, skip that. Says commercial mouthwashes might irritate the mouth and this was the best success they have. Maybe try that as well.

    Keep trying, keep asking --

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    TravelGirl,

    Im doing baking soda and water too. In the past my daughter had lots of canker sores and her teacher told me to make a paste with baking soda and water and then put that directly on the sores. That seemed to work well for her so gonna try that too.


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  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    travelgirl, you have a lot going on right now! Virtual hugs to you that you get everything set up so you can be more relaxed starting chemo. I'm also on cytoxan/taxotere (4 rounds, 3 weeks apart). Just had #2 on Friday 8/18- both have been easier than I expected, but I def learned how I respond during the first round and made good adjustments for the second time.

    I have always had a "nervous/sensitive stomach" so I figured I would tend towards diarrhea after chemo. However, I felt so great with the IV steroid dose the day of chemo, that I ate a grilled hamburger patty loaded with mushrooms and a big slice of watermelon that night = BIG mistake 😣 Lots of cramping and gas, with some D.... that happened pretty much anytime I had anything with fiber the first 4 or 5 days. I didn't have much appetite after the steroids wore off (the following day), and my sense of taste changed pretty quickly, so I focused on eating quality protein as able and drinking lots of water & Powerade. This time I stayed away from fiber starting the night before chemo, and had zero D and very little gas/cramping 😊! I Started adding it back in slowly when my stomach felt more settled on day 5. No significant problem with nausea, but I take the zofran pretty much every 8 hours and supplemented with compazine in between doses, especially in the first 3 days. I do need to keep track of when i poop though, since most anti-nausea meds can cause constipation and I'm already avoiding fiber....

    wow - an entire post about D, gas, nausea and constipation..... I'm smiling as I write this, since it's so not me to share something like this, and that's the beauty of these discussion boards.... the honesty of everyone sharing their worries, side effects, tips, victories and positive approach is a real lifeline.

    Thank you ladies!!!!
    Willow
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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Glad you ladies are doing well!

    I'm feeling better too, just tired but managed to get myself to work today, which is good.

    My appetite is slowly starting to return today, im eating small portions as to not aggravate my stomach. My neck still hurts from the port placement, I take tylenol every now and then. I have been getting a lot of headaches but i think that has to do with the neck pain and not the chemo.No mouth sores! but my mouth feels dry at times, Drinking lots of water.

    Willow, if you haven't emailed me the info yet, you dont have to, as I was provided info when I went to my firs chemo session. Thanks anyway!

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

    Willow - no worry we all worried about the D or C next thing will be appetite, it's so depressed when you don't have appetite. I wish I can eat my heart out again soon.


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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Paulette, I agree, it's depressing not to have much of an appetite especially when I love to eat lol.

    I haven't had D so that worries me into thinking I may have C. We shall see...

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  • Clearpath
    Clearpath Member Posts: 38
    edited August 2017

    Hi everyone - although it's terrible to have to go through this, I keep trying to keep in mind what one of the books I read said. The chemo drugs are not the enemy - they are there to help us and save our life from the evil C! So I try to remain focused on the fact that chemo and its side effects are temporary and there will be an end to the treatments. Of course, my resolve wavers depending on how I feel that day! I wish everyone here the best as we struggle with this disease that has interrupted our lives - but we need to fight on (I do miss my hair though)

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  • Elfmcg
    Elfmcg Member Posts: 91
    edited August 2017

    Hi Everyone,

    That's a great way of thinking Clearpath.

    I'm still feeling somewhat ok on day four of AC, long may it reign. A bit tired, and dry mouth and eyes, but nothing too crazy as of yet

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi guys, I was cleaning some mushrooms in the kitchen sink and saw that veins on my left hand got swelled a lot, when I elevated my hand the blood ran down but when I took it down it swellt again. When I am saying swelling I mean like I have not seen before, not that much. Anything familiar Cherry

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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Elfmcg,

    Looks like we started chemo on the same day!

    I am quite tired, and sore. I really think it's the neulasta kicking in. My head, neck, back, chest and shoulders hurt. It's terrible! Not to mention, I got my period the day after starting treatment. I don't think the Claritin is working. I took an Advil. Does Aleve really work better for this type of pain?

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  • Elfmcg
    Elfmcg Member Posts: 91
    edited August 2017

    Hi Makeuplover,

    I didn't take Claritin, but so far I'm ok, I will definitely take it next time, the pain killer I got was Tramadol. I haven't taken any yet, but will if I feel bone pain. Ugh

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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Elfmcg,

    You are so lucky to not have bone pain and hopefully you don't get it!

    I'm hoping some sleep might also help the pain.

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  • Elfmcg
    Elfmcg Member Posts: 91
    edited August 2017

    I know makeuplover, I hope it clears for you, I slept for about six hours last night. It's so scary not knowing how your body will react, and then the fact that the effects are cumulative, but all we can do, is keep positive. I hope your bone pain passes, it's horrible!!!

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  • KByTheLake
    KByTheLake Member Posts: 52
    edited August 2017

    My clinic didn't send me home with anything except steroids. I was hoping that they would give me some anti-nausea and pain medicine just in case, but they recommended over-the-counter stuff and just said call if those didn't work. Maybe since I didn't have any trouble during the infusion they aren't too worried.

    And so far, so good. Like Willow22, I made a big mistake by stopping for a pizza after my Nuelasta shot yesterday because I was feeling good and pretty hungry. The pizza was awesome (a family owned place that has been in business for decades)! I stopped to pick up a few groceries and right about then, my stomach started gurgling. I literally made it to the door of my bathroom. Sigh. Lesson learned. But one dose of Imodium kept everthing under control after that. Plus a light dinner.

    I felt quesy last night, too, and when I took my dog Sally for our evening walk, I burped the entire way. Thank goodness there weren't too many people out and about! I made some ginger syrup the other night and mixed that with some club soda for homemade ginger ale and that helped a lot.

    My face is hot and beet red from the steriods but they didn't make me too wired to sleep. In fact, I was so sleepy (not fatigued--really sleepy) I went right to sleep when I went to bed last night. I get pretty ugly when I don't get enough sleep so that has been a big concern for me. I normally take melatonin to help me sleep, plus I'm taking Benadryl instead of claritine after the Nuelasta shot. Since both are antihistamines, I hope that Benadryl will also keep bone pain at bay. I had my shot 22 hours ago and no pain yet.

    This thread is so awesome! I read all the previous posts before I started chemo and learned a lot from everyone before my first infusion. That made me feel so much calmer going in! You all rock!

    Karen


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  • SusanGA
    SusanGA Member Posts: 147
    edited August 2017

    You ladies really are awesome. Thank you all so very much. I start my first infusion tomorrow. I was all set to have a Mardi Gras like feast but you guys have made me switch to gentle and bland. My digestion is my weakest spot so maybe a good idea

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  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    Good luck tomorrow, SusanGA! I have been craving flavorful things as well, it's so hard when you're hungry and can't taste much. One thing that is saving me is homemade split pea soup-easy to digest, but has garlic and onions cooked into it, so I can taste something

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Good luck SusanGA, I am also very glad I joined this group. Now when I am telling something to my husband explaining that I got some certain info or a piece of advice from this forum, I am usually ending with: you have no idea, what would I have been doing without these threads and he is just nodding yes, I know, you told me that already, few times. Cherr

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Hi all! Haven't been posting because I've been feeling great! After day six it was like I was back to normal.

    Today was AC#2 - uneventful, which is a good thing. The anti nausea meds they load me with make me so tired. Last time around I had some serious nausea, especially on day 3 and 4. The MO made some modifications which I hope work.

    Shaved my head in GI Jane fashion yesterday- I actually think it looks 😊 good. Too bad it won't last long.

    To all the new ladies - hello!

    To all - we are moving along! Positive vibes to everyone

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited September 2017

    I just started another topic for September chemo since I will be starting tomorrow. Am hoping to connect with others going through chemo with me. I actually start tomorrow and am really scared. I just wanted to let you know that I have been reading all of your posts and they have been very helpful. I feel prepared but just looking forward to #1 being over!

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    SusanGA and OCDAmy, I will think positive thoughts for your first infusions tmrw. I think they are mostly not nearly as bad as we have built up in our minds. Uneventful even.

    My mouth sores continue to cause me trouble. And I also have a fever now. Not up to 100.4 so I havent gone to the hospital but I'm very worried and teary. I'm just used to always being "the strong one". This sucks.

    I am so thankful I'm not working. I've been in bed all day because I figured I need to let my body do it's thing.


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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Oh R - I'm so sorry that you are having these issues! Don't think for a minute you aren't strong - this crap we are going through is devastating and sometimes we need others to get us through.

    My protocol is to call with a fever first before going to the hospital - is yours the same?

    I will be thinking of you.


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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    VL22-

    They said to go to hospital if temp is over 100.4. They were very specific. I thought about going anyway, but I just took a shower and some Tylenol and hoping that helps. Drinking lots of water too.

    Plus, I dont really want to go because it is so damn inconvenient.


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  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    hi rebekah, have you called your dr about the temp? I know you have instructions about when to go to er, but they may want to start oral antibiotics or check urine etc since you have a fever. My clinic wants a call for an oral temp of 100.4 to 100.8 for one hour or more, or a twmp of 100.9 or higher regardleas of how long you have it. They were adament about not taking any fevwr reducing medicines without first speaking with someone at the clinic. Since its easy to reach someone now, they may want to draw labs, chexk urine, etc or start you on oral antibiotics, without needing to call after hours or go to the ER.

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  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    hi rebekah, have you called your dr about the temp? I know you have instructions about when to go to er, but they may want to start oral antibiotics or check urine etc since you have a fever. My clinic wants a call for an oral temp of 100.4 to 100.8 for one hour or more, or a twmp of 100.9 or higher regardleas of how long you have it. They were adament about not taking any fevwr reducing medicines without first speaking with someone at the clinic. Since its easy to reach someone now, they may want to draw labs, chexk urine, etc or start you on oral antibiotics, without needing to call after hours or go to the ER.

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  • LCin312
    LCin312 Member Posts: 3
    edited August 2017

    KByTheLake - Thank you for the eyebrow recco! This is new to me and I am going to try them as well. What lake are you by? I'm in downtown Chicago. Wondering if you're the same by any chance?! (yes, I think the world revolves around Lake Michigan :)) kidding, but it would be cool if you were close. Also, I am really surprised to hear you were not given prescription anti-nausea meds. If you want the names of the two I am on, to ask your onc about, please let me know and I will private message them to you. Maybe if you don't have issues, you can disregard.

    I am so thankful for all of you ladies and being able to read your stories and tips.

    rdeesides – I am using Biotene and it's helping me. I've been using it proactively (after I brush and then here and there if I think about it when I use the restroom).

    Today was my second Taxol treatment. Feeling pretty normal still. Not as 'high' from the steroid yet either so I'm excited I might sleep tonight. Doc did tell me Advil PM or Benadryl for sleep issues. If neither work than I am okay to use the Lorazapam I have. I'm not sure if told everyone, but I am doing the Lupron shot to preserve my fertility. Is anyone else? This shot seems to be my biggest issue. We are looking into alternatives because I am pretty sure I will not continue with it. The night sweats are unbearable. I have so much more respect for any worman who has gone through 'the change' and had issues. Not fun. Also, I am in the legal field and researched lawsuits against the drug. BIG MISTAKE, but glad I did. This drug scares the crap out of me. Would love to hear if anyone else is on this one and what your experiences are like.

    Lastly, for anyone new or who hasn't started. I had my port surgery last Friday and used my port for the first time today. What a time and vein saver. I've read a lot of people having port issues, but my experience so far has been very positive. Hopefully this can relieve some anxiety for someone.

    Thinking of you ladies all time. Have a great week.

    Lori

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Rdeesides, although I am in Europe the protocol is the same, as soon as it is over 38C fever do not take any paracetamol but call the 24/7 number. Even If there is any pain in the stomach area, abdominal, diarrhea, the onc wants you to call in. I have done it tonight, called this number because I have some cramps that remind a period pain. Until the nurse talked to the doctor I had to wait with a pill. If you have fever you should call them, just as Willow said. I hope though you get better and this is nothing serious, Cherry.

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