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CMF treatment survivors and experiences

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  • nocyart
    nocyart Member Posts: 27
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    Thanks, Kate. I have both stool softener and imodium on hand but so far neither issue has presented itself. I figure tomorrow will be the true test.

  • RiRi11
    RiRi11 Member Posts: 70
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    welcome Nocyart!

    Kate is spot on! Continue what you are doing.

    Saltines and ginger ale are my go to on chemo weeks

    Good luck!

    Ria

  • nocyart
    nocyart Member Posts: 27
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    Thanks, Ria! Neulasta should release soon and I expect tomorrow will be the true test!

  • Inthegrey
    Inthegrey Member Posts: 68
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    I’m glad you are doing well so far! I also ordered Queezy Drop from Amazon as I had an unsettled stomach every time. Be sure not to overdo it energy wise so you can rest. For me, I’d get a burst of energy, do too much and then be over fatigued for 2 days. That happens more as treatments progressed. I’ve done 6 of 8 every 3 weeks with no Nuelasta. Best wishes! 🙏

  • nocyart
    nocyart Member Posts: 27
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    The neulasta is clicking as I type. Mine will be biweekly. I feel great at the moment but I think tomorrow will be the true test.

  • Lynne
    Lynne Member Posts: 368
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    That's great news Nocyart!

    I had my first round on Thursday morning. Everything went well for the infusion. We then headed to VT for our nephew's wedding. I started sweating profusely (which is so unlike me). Yes, it was humid out, but the windows were up and the a/c was on. I took a cool shower at the hotel, and changed into my "moisture wicking" night gown. I was drenched again, all night. I didn't have that problem again. I looked up to see if this is a side effect of one of the 3 drugs, but did not see it. I've had diarrhea, starting 3 days after my treatment. I'm not sure if it's from the treatment, or something I picked up. Good thing I still had my prescription for it, from the last chemo (Taxotere). I hope it's not going to be like that again. I too am rinsing with bacon soda. I had the mouth sores for a few months, on Taxotore, and definitely do not want them again!

    I do not get the nuelasta shot. I was suppose to on Taxotere, but they never scheduled it at the beginning. At the 3rd treatment, all of the sudden, they call me and tell me I needed to schedule it. I said I've never been on it. I did end up in the hospital for 2 days, on iv antibiotics, a week after the first treatment (nuetropenic). She dropped the dose and hadn't realized she never put me on Nuelasta. Hopefully, I can stay out of the ER and hospital this time (I went to the ER 3 times, and was admitted once, on the year I was on Taxotere). I hope I get some hair back. I currently only have fuzz on the sides and back of my head, the top middle is down to the skin. It's like a reverse mohawk. It's been a year wearing scarves, hats, and the awful wig (I've worn it 6 times, for funerals and a wedding). I would really like my eyebrows and eyelashes back. I'm sick of drawing the eyebrows in, and even though my lashes were not long or thick, it's better than none!

    Lynne

  • Inthegrey
    Inthegrey Member Posts: 68
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    Hi Lynne - I'm happy to hear you enjoyed the wedding! I cannot image taking that trip right after treatment - I am always sleeping the day after chemo. Have you thought that the sweating is related to under hydration? It seems to happen to me and I am never sure if I am having a hot flash or not, but then I drink water and it gets better. I too have had diarrhea a bit more as treatment goes on. I just had #6 of 8 a week ago. In the beginning of treatment, I was constipated 2-3 days afterwards, but now a week later I'm the opposite this round and my thirst increased a lot. I tend to drink too much water and my sodium levels were getting low the doctor said. I downloaded a water tracking app and drink 200-250 oz a day! I drank a lot before chemo too due to allergy medications and sinus issues that would dry me up. I now just pay attention to the color of my urine to tell if I'm under hydrated and have added electrolyte mixes to my water which has helped the sodium levels.

    My fatigue is a bit more now with #6, but I also overdid it the past Sunday helping my parents pack the attic of 40 years of stuff - they moved to a new house last month and I am staying with them for chemo this summer. I cannot complain about it since overall I am doing well here.

    Nocyart - I hope you are continueing to do well after the shot:)

  • nocyart
    nocyart Member Posts: 27
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    I've had a bad headache that nothing is helping and less energy than normal but so far that's it.

  • Inthegrey
    Inthegrey Member Posts: 68
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    I get the bad headache for 2-3 days as well. I think it is from all the steroids wearing off. Two extra strength Tylenol help a little but not completely. It feels like a bad sinus pressure. I'd rather have the headache than nausea and dizziness

  • nocyart
    nocyart Member Posts: 27
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    I was given dexamethasone and zofran at time of infusion. I was sent home with both as well. I took the zofran as prescribed to prevent nausea but wondered if it was responsible for the headache so stopped. Next time I will only take it if I feel nauseous. Did not take the dexamethasone at all. Will talk to my oncologist before my next round. Might add some powerade into my regimen next time. Maybe I drank too much water.

  • Inthegrey
    Inthegrey Member Posts: 68
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    I took Zofran as well and once it made my headache MUCH worse...haven't taken it since. Powerade or G2 Gatorade are a great idea too add - I did that too plus Pedialyte or the popsicles they make. I'm finding I really have to mix up my hydration options as I get tired of some of them after a while. I feel like I am drinking more calories with these electrolyte drinks and have gained some weight, even those i look for no sugar and lowest calorie counts. Below for is an article I found for alternatives.

    https://thehealthbeat.com/best-worst-electrolyte-drinks-chemotherapy/

  • socallisa
    socallisa Member Posts: 10,184
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    Lynn, I had a few problems after an infusion, but I asked that they slow down the infusion and that helped alot.


  • Lynne
    Lynne Member Posts: 368
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    Thanks for all the suggestions. I was on dexamethasone and an anti nauseau med too, during the treatment. The last 2 chemos, I was also given pills before and after treatment, because I had bad reactions to both at my frist treatments. So far just the sweating (for a day) and the diarrhea (not as bad as the last chemo's) for me. Hopefully, that's it. I'm really bad at keeping myself hydrated. I told my oncologist to just set me up with an iv at home. I have to keep reminding myself to eat and drink.

  • nocyart
    nocyart Member Posts: 27
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    So the headache was gone today and in its place was constipation. 🙄

    All in all I really can't complain too much about this round. Hopefully, subsequent rounds will continue to be mild.

  • Lynne
    Lynne Member Posts: 368
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    Glad to hear, Nocyart!

  • nocyart
    nocyart Member Posts: 27
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    How is everyone feeling today? I'm doing well. I'm happy to have you ladies. Thank you for sharing your experiences. 💗

  • Lynne
    Lynne Member Posts: 368
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    nocyart,

    Cancer wise ok. A week after my first treatment and I'm still having gastro issues.

    Mentally, I'm just sick of my sciatica killing me, and making it difficult to walk. It started late July, after a long motorcycle ride. I called pain managment after a week, and the earliest they could see me was Sept. I managed to get in a month earlier in August, but can not get steroid shots until 2 weeks from now. I couldn't dance at my nephew's wedding (I did do one slow dance, and it killed me), and next week we are on vacation, at a lake. Maybe the cold water will help. It's really bringing me down. I'm still in my nightgown from last night. I guess I'll take a shower and get in a new one.

    Sorry for being a Debbie Downer. Just one of those days.


  • Inthegrey
    Inthegrey Member Posts: 68
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    Sorry to hear of your sciatica pain. Have you ever done PT and exercises to help it? My mother in law was just given a referral for PT for sciatica and I’ve seen videos online. I’m guessing you may have tried this already if the condition is not entirely new. Just a thought. I hope you can enjoy the lake next week! I’m staying by the lake during and find the surroundings so relaxing.

    Glad the CMF has been pretty good so far. I’m doing well too although a bit more lower energy a week after #6.

  • 2002chickadee
    2002chickadee Member Posts: 79
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    Hello all,

    I am happy to report I am 1.5 weeks post my 8th and final CMF infusion -- whoo hoo! You will get there too!

    I was on an every three week cycle and before the last round my WBC counts were low enough that I needed a shot of Neupogen on a Wednesday evening before the Friday infusion. Took a claritin and I had back pain the next morning for a couple hours that made it hard to sit, but it passed before the day was done. Boosted my counts beautifully.

    8th infusion knocked me out for almost 3 days, but I was also on a anti-itching drug due to a weird rash-allergy-we're-still-figuring-it-out at the same time which I think may have made me extra super sleepy. I do think the fatigue is cumulative. I stopped taking the anti-itch drug on the 4th day and by the 6th day I was feeling almost euphoric by comparison.

    I will say that issues with constipation and diarrhea were frequent throughout CMF for me. I used to eat a salad every day for lunch during the workweek but found that I couldn't digest the raw greens, and then after I got salmonela I have avoided any vegetable I don't wash myself unless it seems very cooked. I recently discovered that drinking this special broth with a little miso mixed in was more palatable than water (and like Inthegrey I was pretty sick of vitamin water etc.), and supposedly it is good for people on chemo. I highly recommend it! I also started drinking coconut water to help with hydration and electrolyte balance but I don't love it. The broth is delicious, I'm still having a warm cup with miso right next to my morning coffee.

    https://www.rebeccakatz.com/magic-mineral-broth

    Lynne, I always had horrible night sweats the first night after infusion, I thought it was from the steroids I would get at infusion time. They were different from the chemo-menopause that came on probably around round 5 or so, don't recall exactly.

    Ondansetron for nausea (is that the same as Zofran, I think?) also gave me headaches so I took it only when needed, but better to not be nauseous with a headache, IMHO.

    Wishing everyone some summer enjoyment in these last days of August.

  • Inthegrey
    Inthegrey Member Posts: 68
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    Congratulations on finishing 2002chickadee! Thanks for your summary and broth link too. I just to add, I was told not to drink antioxidants beverages during chemo, including green tea, as that can reduce the effectiveness of chemo. No vitamin water for me, but I love coconut water with pineapple.

    I have #7 this Friday on my 3 week cycle. I have had less energy after #6, so maybe the cumulative effect is kicking in more. I have also had diarrhea the past week which is unusual for me during treatment. I’ve been taking pepto bismol tablets to keep it under control, but called the nurse yesterday. They are going to run a test for C dif to be safe. Have others have diarrhea all the time and if so what did your doctor say...or did you just take Imodium or Pepto to control it. Just wondering.

    Keep well everyone




  • 2002chickadee
    2002chickadee Member Posts: 79
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    Inthegray -- don't take immodium without talking to your doctor first. If you have a bacterial infection, and you "stop it up" inside your body, it can lead to the infection spreading elsewhere. It can be horrible to have uncontrolled diarrhea but the alternative is worse! Also, do you want to ask them about testing for Salmonella? I contracted it during one round, it was pretty unpleasant. And I have a friend who also got it when they went through chemo. I think it's pretty common. The other time I had uncontrolled diarrhea during chemo I ended up in the hospital (stomach bug I contracted from my kids), so it's great that you put them on alert. I did have a few days of diarrhea that meant nothing during most of the cycles and also found I couldn't eat salads without triggering diarrhea, which is a bummer as that was my go to lunch. Eating white rice is a miracle stopper up, for me, have you tried that? Hope it gets better for you soon.

  • Inthegrey
    Inthegrey Member Posts: 68
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    Great advice! Thank you. I just called the doctor’s office to see if they could test for salmonella as well since we just dropped off the stool sample. My issue isn’t uncontrollable, but just unpleasant at times if I don’t take pepto. It helps me stay more hydrated too. I’ll add some rice to my diet as well, otherwise I was following the BRAT diet. I hope it is nothing.


  • socallisa
    socallisa Member Posts: 10,184
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    I caught something from a public swimming pool. Chlorine does not kill all so if you are immune compromised , you can catch many things..

  • nocyart
    nocyart Member Posts: 27
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    Round 2 of CMF today. I am not going to take the zofran this time and hopefully the headache and constipation won't be as bad. I did buy miralax. Should I take that as a preventative or only if I'm constipated again? I don't want to send things in the other direction.

  • Inthegrey
    Inthegrey Member Posts: 68
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    not sure. I ate prunes which helped me but haven’t needed anything as treatment progressed. If it were me, I’d wait a bit and see at your “normal” BM time if you go or go very little. Remember to super hydrate too😊

    I had round 7 today and have a HUGE headache - more than my usual. I also just threw up for the first time post chemo, it was shortly after taking two Tylenol. The Tylenol has never bothered me. Threw up dinner which I ate 3 hours ago and watermelon I was eating to help hydration. I feel better after throwing up so I’m holding off on the Zofran to see it nausea returns. It made a headache worse for me one time. Ugh. Glad there is only one more to go. 🤢

  • nocyart
    nocyart Member Posts: 27
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    Sorry this round is rougher on you. You are so close to done!

    I told them about the headache and constipation that I thought may have been exacerbated by the zofran so they gave me reglan to try instead. I still only plan on taking if needed.

    So far so good. Didn't sleep great last night but with heavy hydration comes frequent trips to the bathroom! 😂

  • Inthegrey
    Inthegrey Member Posts: 68
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    I was awake off and on for bathroom trips as well. But at least I know my hydration was getting better. The chemo fixed my diarrhea issue on the other end too for now. Happy to say that the headache is getting better as well. College football day if I am not napping this afternoon!

  • nocyart
    nocyart Member Posts: 27
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    Decided to take the miralax since things slowed down a little bit. Just hope it doesn't push things in the other direction. Neulasta is clicking as I type. Hoping for no bone pain again. Went to a picnic for a few hours today. Invited to another tomorrow so hoping to feel up to going to that.

    Did you watch some football?

  • Inthegrey
    Inthegrey Member Posts: 68
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    yes, watching Michigan and Notre Dame now with my father and boyfriend....rested most of afternoon after watching funeral this morning. Enjoy your picnic if you go

  • nocyart
    nocyart Member Posts: 27
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    Sunday after chemo is my roughest day. I felt horrible yesterday. It hurt to take a deep breath, I was extremely fatigued, and had a headache. Didn't really eat or drink much which I know didn't help my cause. Feel better today but still off. 6 more to go.