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CMF treatment survivors and experiences

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  • Inthegrey
    Inthegrey Member Posts: 68
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    Welcome Lupé. I’m sorry you joined us, but you’ve found a good thread. I was hyped up on the steroids for 3-4 hours post treatment. Then I would start to get tired. I think you will be fine for the drive. Brings lots to hydrate- like Gatorade for the road. Some candies to suck on too in case you stomach gets queasy. Good luck!

  • Jrunstroop
    Jrunstroop Member Posts: 9
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    Good luck Lupe. I'm also currently undergoing CMF. I have gotten nauseous the day of chemo but typically at least four hours out so I think you will be fine with the drive. Also, I don't think my nausea is the norm...not sure why its too bad for me. This time was a tad better in the sense the the nausea was more compressed even though it was still pretty strong. Dr. is changing up the meds again, having me start zofran and compazine the day before to see if that helps me.

    JRNJ--one thing that happened for me this round (round 3) was that when I did come out of the bad SEs, I felt really good for more than a week. The first two times I still had a little dizziness, mild gurgly tummy up to 10 days out but this time on day 7 on, I was pretty much myself. I definitely enjoyed that.

    Fellow CMFers, I am shedding A LOT of hair. I've read in the threads that maybe it slows down a little down the road but would love to hear some encouragement. My poor son keeps finding hair in his lunches and dinners and I feel like if I hold it in a ponytail in my hand, there is a ton of hair at the bottom that comes out.

  • jrnj
    jrnj Member Posts: 407
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    So my first treatment went like this starting Monday. Day 1 and 2, a little dizzy, heavy feeling, tired. Heartburn constipation. Day 3 and 4, severe medication withdrawal, jittery, can't sleep even with a sleeping pill. Heartburn. Days 5 and 6 feeling less jittery, a little better, a little tired, slight diarrea. Day 7 feeling pretty good, heartburn. So will probably ask them to scale back the iv meds. They gave me Aloxi (antinausea), Civanti (antinausea), Decadron (steroid) and Famotidine (antacid) via IV. Hope I don't regret it. I'm thinking the steroid is the biggest offender regarding withdrawal? Anyone know? I also don't think I needed the Ativan and Claritin and Compazine post treatment, in addition to Zofran and Zantac. I'm used to aches and pains from statins. I think the Claritin gives me insomnia also. I tried it before for allergies.

  • SeektheGood
    SeektheGood Member Posts: 2
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    I had decadron with the first treatment and crashed horribly on the third day, I just could not stop crying. I asked for treatment without the decadron and did much better without it. The only addition to the CMF was axoxi. I think it's worth a try without it.

  • Joyce65
    Joyce65 Member Posts: 30
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    Hi Everyone,

    I've been traveling but trying to stay up to date on the questions so I can hopefully be of some help.

    JRNJ -- The IV steroid helps the Zofran keep the nausea at bay, so I would not skip the steroid. Typically the steroid should wear off in 24 to 48 hours. I only took Zofran for nausea. They also gave me Compro (Prochlorperazine), but I never needed it. I found that if I ate a little bit every couple of hours, no matter how queasy I was, it helped a lot. I always went out for a decent lunch after chemo because I felt pretty good at that point. Also on the Claritin, make certain you bought just plain Claritin, not Claritin-D which can make you jumpy. Take it in the morning so by bedtime, you will feel it less. The point of the Claritin is to keep the bone pain at bay from the Neulasta -- it works! You can also try Zyrtec and see if you manage that better. The research was done with Claritin, but I have allergies and the Claritin is ineffective for my allergies so I switched to Zyrtec (which works for my allergies) and it kept the bone pain at bay. I had the bone pain pretty badly one round so made certain to use the Zyrtec. I was not prescribed any kind of anti-anxiety meds throughout my chemo. I did take melatonin on evenings I was having trouble getting to sleep (generally the second night) and meditation and relaxation apps. This seemed to work for me.

    Jrunstroop -- I also shed a fair amount of hair; I'd estimate at least 1/3 of my hair went down the sink and shower drain. Get silk pillowcases, they will pull less on your hair. Wash your hair less often if you can, and don't use a hair dryer. I wear my hair short, so happily I was able to pretty well hide the loss -- you may want to consider a new funky short style! :)

    Stay strong and know many of us have gone down this path and are here to help you.

  • Jrunstroop
    Jrunstroop Member Posts: 9
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    All I can say is thank you so much for continuing to come look at the comments and offering advice. It is sooo appreciated. Heading in to round 4/8 on Thursday (my son's bday--that makes me sad I have to say, my day 1s have been my worst days--we are going to try to celebrate the night before and we made plans for him to sleep out because I just want him to have a 100% happy day--but I keep reminding myself (And do believe it) that I am doing this to have many more future birthdays with him).

  • s3k5
    s3k5 Member Posts: 411
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    Did anyone have low blood counts with CMF? I get this every three weeks and by the third week my hemoglobin and WBCs are pretty low. Getting a blood transfusion tomorrow for Hb and then a nupogen shot for WBC. This is the third week, so I was expecting to feel better but this fatigue and nausea is getting worse.

  • jrnj
    jrnj Member Posts: 407
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    thanks. Maybe I’ll split the difference and ask for half dose decadron. My nurse is already annoying me. I am an anal retentive engineer. I’ve gone to every appointment in this process alone and take notes. She told me to put the pencil down and listen. Every time I say “I read on my blog” she says stop reading and stop listening to others. That really bugs me. BS did it too. Yes I’m familiar with all the allergy meds and their affects. I’ve tried them all. I like Allegra and Sudafed in morning only. Oh and jinxed myself. Had sharp bone pains today and took the Claritin. I’ve had insomnia for years. Only lunesta works for me.

    S3k5. I haven’t been tested yet but feel pretty good day 8.Did they give you Neulasta the day after treatment?

  • jrnj
    jrnj Member Posts: 407
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    I just got my period. Anyone else get it on chemo? My hormones are out of control.

  • s3k5
    s3k5 Member Posts: 411
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    JRNJ, I got into chemopause while I was getting ACT 10 years ago.

    I do get Nuelasta but due to SEs, I opted for Nupogen which turned out to be worse. So back to nuelasta from this cycle. My Hb was too low so got 2 pints of blood transfusion which really helped.

  • jrnj
    jrnj Member Posts: 407
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    Sorry to hear that. Hope you are feeling better. Now I think my pains were ovulation lol. What county are you in? Im right in middle of state in Jackson. I hope your hospital treated you right. Jersey Shore was awful.

  • s3k5
    s3k5 Member Posts: 411
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    Hi JRNJ , I am in Somerset county, NJ. My MO and their staff are awesome at MSK, Basking Ridge. They try their best to keep all patients comfortable.

    After my third treatment with CMF, I am feeling exhausted and the Nuelasta shot gave me far more worse bone pain! Well, after 3 days of intense pain, it is subsiding now. My MO told me after the 4th cycle, she will order a scan and then determine to continue CMF or not.

    How are you doing on your treatments and the side effects?


  • jrnj
    jrnj Member Posts: 407
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    treatment 2 was Monday. I told them I felt over medicated. In the iv I was getting 2 anti nausea 1 steroid and 1 antacid. They dropped the Aloxi. So far better. Looking back and reading about it I had seratonin syndrome from the Aloxi. . I always react bad to things that mess with serotonin or melatonin. I’m a little annoyed there was no planned discussion of my first two weeks. Told nurse while she was hooking me up. She went to find The PA to discuss. They were packed and seemed over worked. Is Sloan like that? But glad she made right call. I’m tired and still have insomnia and heartburn but I’m functional and went to daughters band concert. Starting to loose more hair. I still worry cmf is not strong enough for me and I could have handled tc. Need to find peace. I’m a worryier.

  • s3k5
    s3k5 Member Posts: 411
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    JRNJ,

    Sorry to hear about your SEs with the pre-meds. At Sloan, my MO or the NP discusses with me about what I will be getting and the dosage of each IV drug PRIOR to actually getting it. My MO increased the steroid dosage and it seems to help with nausea. I get Aloxi and steroid every time. Nothing else. The nurses and the NPs, PAs at Sloan are so relaxed and calm. One of my favorite nurse said that n 20 years of her nursing experience, this is the best place to work. I like all the nurses, front desk staff, etc at Sloan.

    Isn't Monmouth branch of Sloan closer to where you live? Maybe you could look into switching to Sloan.

    I don't know how effective CMF is in my case (metastatic) , but as a first line of treatment it seems to have promising data. All the best in your journey.

  • jrnj
    jrnj Member Posts: 407
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    Thanks S3K5. Although I don't like how chaotic it was, I think I'm on the right path now with meds. I did go to Sloan Middletown for a third opinion, that is why I am doing chemo. Rutgers doctor said no chemo. I struggled with whether to switch to Sloan, but I liked my Dr. so I stayed with him. Just second guessing my decision now, but I still like my Dr. and his office for now I guess. He was very supportive of me getting additional opinions.

    I'm losing a ton of hair this week. Hate that. I have a ton of thick long hair to lose, so it really looks like a lot. I read if you have thick fast growing hair you will lose more. I really lost a lot and it's only second treatment. It that normal? But I'm not going to cut it. We'll see how it goes. I usually wear it in a ponytail, I have hair touch up powder and a wig if necessary. But the wig won't stay my head, it's cute but annoying.

  • Jrunstroop
    Jrunstroop Member Posts: 9
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    • Hi JRNJ...that's interesting...I am four treatments down and losing a ton of hair...and I have thick fast growing hair (hope the fast growing part continues after chemo is done!)—I shed all over the place every single day—the silk pillow case helps and I'm also going unimaginable times between my gentle hair washes..figure though that we are still lucky to have it—at least I keep telling myself that every day
  • jrnj
    jrnj Member Posts: 407
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    I’m freaking a little because fukcancer said she lost like 85 percent. I think the theory is chemo goes after the fast growing cells. Which is why we might lose more than average. I keep it in the ponytail when I’m sleeping so it contains the hair from getting all over. If my son figures out what’s happening he’s going to freak. He’s a germaphob and hates my hairs in the bathroom.

  • Jrunstroop
    Jrunstroop Member Posts: 9
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    I hear you on the freaking part—and on the hairs EVERYWHERE — made a consult appt today for a hair topper when I’m done—too worried to put anything that clips in my hair no

  • pajim
    pajim Member Posts: 930
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    Hi Ladies, joining you here. I start CMF today. Zero idea of the protocol my cancer center (DFCI) uses but I'll find out before they start the iv line. . .

    Last week when 'we' decided on CMF I'd spent a lot of time addressing the concerns from my last treatment so I didn't get to ask questions. I have a list for today. I say 'we' because my MO basically pulled it out of his hat from a list of choices. I don't particularly care but on the list is 'reasoning?'

    It's interesting to read that you all have different pre-meds. I like the steroids because they get you over the initial hump. But I usually ask for half of what they offer to give. it's true the crash isn't much fun but it beats nausea and vomiting.


  • jrnj
    jrnj Member Posts: 407
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    Good luck pajim. I have treatment today too.

  • pajim
    pajim Member Posts: 930
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    Now I have the story at the Farber and it seems to be a little different than the rest of you. It'll be every three weeks until progression or enough response that we can take a break.

    They gave 12mg dexamethasone and Zofran (don't know how much) i.v. as premed. No mention of Neulasta. MO asked if I had Zofran at home. That was it. I already take Pepcid and I'm doubling the dose. I also already take Tylenol and Ibuprofen because of my legs. The infusion nurse thought that was a good idea. She'd also never given this combination of drugs so I guess it's uncommon there.

    The whole experience from blood draw to getting off the chair was six hours, LOL. Should have brought the power supply to my computer.

    So far no problems at all. If my stomach starts to talk to me I eat a snack (crackers mostly). I was awake at 3:30am and didn't fight it -- just got out of bed. Took an hour nap at 10. The steroid dose is massive, in my opinion but I went with it. It is certainly keeping away any immediate nausea. If the crash is bad I might ask them to reduce it to 8 next time.

    Happy New Year to everyone! May 2020 be better than 2019.

  • s3k5
    s3k5 Member Posts: 411
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    Welcome Pajim. Most of the ladies here are getting this regimen as a first line of treatment.

    Very few ladies are getting this CMF in a metastatic stage. I have very similar premeds as you and after 3 cycles, my MO decided to reduce the dosage since nausea has been the worst SE for me. I have my fourth treatment tomorrow (once every three weeks). First week was the hardest with nausea, but 2nd and 3rd week were better. I had my steroids reduced to 8 mg since the crash was bad. MO increased my anti-nausea meds, which really helped. I was told this is an easier regimen than ACT that I had 11 years ago.

    Hope you sail through this with minimal SEs and hope this chemo will result in stability or regression in the mets. I see that you were diagnosed with bone mets in 2013, around the same time that I was. The line of treatments are also very similar.

    I developed liver mets last year and I am hoping that CMF will show some positive results. Will find out on 21st Jan when I am scheduled for a PET scan.

  • pajim
    pajim Member Posts: 930
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    Hi S3K5, yes, I now have liver mets and lung mets. I was three months off any treatment when I broke my hips so we're hoping this will kill off the cancer buggers. They did a baseline scan just before Thanksgiving so I won't have another for a while. Three weeks 'til you know!

    I'm sorry about the nausea. Did you try taking pepcid or prilosec? It could be that extra acid is contributing to the problem. I anticipate the steroid crash any time this evening, LOL.

  • jrnj
    jrnj Member Posts: 407
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    today was the worst day for me. Day 3 after treatment 3. I couldn't get out of bed due to extreme fatigue and heavy head dizzy. But grateful no nausea. Now I'm wondering is it the chemo or the Neulasta? Pajim how come they aren't giving you Neulasta? I'm getting 10 mg steroid. Nurse said she couldn't go lower.

    S3k5. What are they giving you for nausea? They over medicated me and I had to drop some.

  • pajim
    pajim Member Posts: 930
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    It could be the Neulasta, I don't know. They've also probably changed the formulation of the stuff since I gave myself the shots in 2008. But really the dizziness and fatigue sound like steroid withdrawal. Drink more fluids and take some ibuprofen or aspirin. I started nodding off 46 hours after the steroid push. That's pretty normal for me. Slept most of the night and took an extra nap this morning.

    Also no idea why they're not giving me Neulasta. It wasn't even suggested. There are three reasons I can think of: (1) I'm 50 and in good health so they figure I can bounce back on my own; (2) Nothing bad has happened [yet] so why do it unless it's necessary? (3) It didn't occur to them. Knowing my team, it's most likely #2. My MO is a minimalist.

    I sure hope you feel better tomorrow. If it's the steroid crash you should. Did I mention NSAIDs? They helped a lot when I was on Halaven.

  • s3k5
    s3k5 Member Posts: 411
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    Pajim and JRNJ, I had my 4th treatment of CMF today. The steroids were at 12 mg today, plus they gave me oral steroid for nausea on day 2 and 3. I also take zofran, compazine and olenzapine for nausea, as needed. After my 3rd treatment these meds combo worked really well for me. Hoping I could do the same this cycle too. I also got the Nuelasta Onpro on my arm today along with Xgeva every month. I expect some bone pain on Saturday. I take Tramdol and Celebrex for my bone mets, so that helps.

    Pajim how are your blood counts at each treatment? Mine got too low after the 2nd cycle, so as a preventive measure my MO is giving me Nuelasta. They stick the cartridge to my arm and 27 hrs later, it self injects. So convenient.

    JRNJ, day 3 is also the hardest for me. So I have scheduled my chemo on Thursday, so day-3 falls on Sunday. I usually try not to do too much on that day. By day-4 my bone pain, nausea starts getting better so I am back to work (from home). It is the result of chemo and nuelasta. So take it easy on day-3 and 4 if those are your down days. Do you work full time? Can you take time off on these days? Or do you have little kids to take care of? That could be exhausting!

  • jrnj
    jrnj Member Posts: 407
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    S3K5, do they put anti-nausea in your iv? They gave me civanti and aloxi for nausea and famotidine for acid reflux, in addition to decadron steroid, in the iv day of treatment. It was too much, I dropped the Aloxi which gave me bad side effects. The olenzapine is a Sloan thing I think. The Sloan dr. mentioned it to me, so I mentioned it to my MO and he made a face and said "if you want it". But I don't need it. The iv cocktail along with Zofran and pepsid is working with Compazine as back up. To my surprise nausea is not my biggest problem. On day three I feel like I've been hit with a sledgehammer in the head. And some overall puffiness, swelling. I might rip that onpro off next cycle without telling them, My WBC was way over the normal limit and the nurse never even said anything to me about it. Then I felt totally sick the day after it injected me. When I asked her the week before she was like, we already go it approved by insurance, you don't want to do it the old fashioned way and come in and get monitored. Maybe I do! That's why I picked an mo 10 minutes away!!

    I am lucky, I am not working. I do have a full time very demanding job with the State. Just got a promotion right before dx. But as a State worker I am very lucky to have good benefits and think I can take leave for about a year without getting fired. It's a little complicated regarding paying for benefits, losing time in pension system, but I have options which many people don't. I was going to go back Monday part time, but just can't do it. I feel too crappy and my job is too demanding and I really need to be 100 percent when I go back. I am appreciative to be able to rest when I need to. My kids are 12 and 14 and this experience has made them more independent because I babied them too much. But on the flip side because I am home and not working my ADHD daughter who is crazy and her crazy friend drive me crazy after school now, lol. She was in child care up until my leave. But they have also been cooking up a storm which is great!!! Pre-teenage girl drama is unbelievable these days with cells phones, etc...… Most days more anxiety than the cancer, lol. The fall was really hard with sports activities and Marching Band during my surgery. But a little calmer now. We skipped basketball season this year.



  • pajim
    pajim Member Posts: 930
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    JRNJ are you feeling better today? I woke up at 4:00am and immediately wondered if you were dehydrated. The first set of symptoms you described (dizziness, fatigue, etc) sounded a lot like it. If you can't keep fluids in you need to call your MO office.

    They did put Zofran in i.v. I haven't had to take any since though on Day 3 I took one 'just in case'. The steroid withdrawal. . .

    S3K5 this is my first infusion/cycle. I had Cytoxan alone back in 2008 but the regimen of premeds and the like was totally different. There was no mention on monitoring blood counts so I'm not going to worry about it. I have three weeks to 'bounce back'. And actually, knock on wood, this has been pretty easy. How is the 'thing on your arm'? In 2008 I gave myself the injections. It was either that or go back to the cancer center the next day. Uh, no, thank you.

  • Joyce65
    Joyce65 Member Posts: 30
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    Hi All,

    I finished my treatment this past summer, but have been following along in case I think I can be of some help. I've noticed a lot of discussion around the Neulasta and thought I would share what I know. The Neulasta OnPro is a single-dose shot that is placed on your arm at the end of your infusion and it will administer the shot at the appropriate time the next day. The Neulasta helps to revive the white blood counts faster. Most folks who get CMF on the two-week regimen (as I did) will have the Neulasta OnPro. Prior to the creation of OnPro, you had to go back to the hospital or self-inject in order to have the Neulasta shot. Some insurance won't cover the OnPro, and it is expensive. If you are on the 3-week regimen, your doctor will probably not use it unless you are having low white blood counts.

    In reading about some of your side effects, I would highly recommend that you really keep track of your hydration. I had a 30 oz Nalgene bottle that I made sure to fill and consume 3 times each day the day of treatment and for the next 5 days or so. On days when I did not hydrate well, I was more fatigued, dizzy and loopy.

    Hopes this helps some of you. Take care of yourselves, rest and recuperate.

  • s3k5
    s3k5 Member Posts: 411
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    Joyce65, yes I have been getting the Nuelasta Onpro on the day of my treatments. Next day it injects by itself and then I remove the cartridge. This is so convenient. Thanks for the tip on hydration. I have severe nausea on Days-2 to 5 and hydration is difficult, but I will try to get enough liquids.

    JRNJ, if the job allows you to take time off, why not? It must be hard with two kids, even though they are not dependent on you for everything. I am much older and have a job that is flexible, thanks to my wonderful boss. I have been working from home and this is definitely doable. Otherwise I would go into depression, since my husband is busy at work and I have no smaller kids at home (my kids are all grown up and have left home).

    pajim, hope you sail through these treatments. I had the Nuelasta Onpro yesterday evening so it will inject in about an hour or so. 24 hrs later is when I get the side effects (bone pain), so I have extra meds for this.

    My next scan is on 21st Jan and I am hoping to see some positive results!

    Hope everyone has a great, relaxing weekend.