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CMF treatment survivors and experiences

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  • socallisa
    socallisa Member Posts: 10,184
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    onward and upwards of 😳

  • Inthegrey
    Inthegrey Member Posts: 68
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    I sure hope you feel better. Hydration helps me a lot with the headache as does Advil to reduce the inflammation. My 2nd chemo was the hardest and then I tolerated the sign effects better.

    I over did it yesterday - went out to dinner and the grocery store with my parent’s and BF. It’ll take me two days to rest up! I never do that much two days after chemo.

  • nocyart
    nocyart Member Posts: 27
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    You give me hope!! Maybe the next time won't be as bad!

    Odd question...I have tissue expanders. They hurt after chemo. Anyone else experience this?

  • Inthegrey
    Inthegrey Member Posts: 68
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    I wish I could answer for you, but I have not had expanders. Do you read MyBCTeam.com? It is also a great support site full of good information and a place for inspiration and quick feedback on questions.

  • nocyart
    nocyart Member Posts: 27
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    I am a member but do not love the format of the forum. I'm going to see my plastic surgeon on Friday and plan on asking him. Was just curious if it is just me. Lol

  • nocyart
    nocyart Member Posts: 27
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    Shedding is in full effect. Started being really heavy yesterday. I'm 1 week post 2nd round.

  • Inthegrey
    Inthegrey Member Posts: 68
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    That was my pattern too, then it subsided #4, #5 and started again after #6 and still going. I hope you are only washing 1-2 times week and no heat styling or hair products. That helps and I also find my silk pillow case is terrific! No hairs in my bed when I wake up. I feel like a cat shedding for summer

  • Lynne
    Lynne Member Posts: 368
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    I just finished round 2 yesterday. My white cells were 1.00 and the Citoxin wants it at 1.5. If below, the reduce the dosage by 25%. I'm glad I could get it done. Another 3 1/2 hrs at the dr's office though. Most of it waiting to see the PA, and waiting to get started up. This is why I chose this treatment. Only once every 3 weeks, and see the dr 2 weeks later, then start all over again. Just like Taxotere (which took most of my hair,I was on it for a little over a year, I use baby shampoo every other day) I had 5 weeks off in between starting CMF, and it's grown some, hopefully mine doesn't thin, I still have bald spots in the middle on top, like a backwards mohawk). Hopefully this one works at least as long.

  • nocyart
    nocyart Member Posts: 27
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    Lynne,

    That seems really low. My WBC count was 9.2. I am taking the neulasta shot after treatment, though. But 1.0 seems incredibly low to me.

  • Lynne
    Lynne Member Posts: 368
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    I have never had the Nuelasta. I was suppose to get it with Taxotere, though they never scheduled me. I ended up in the hospital staying over for 2 days, on iv antibiotics, because my white cells had dropped a week after my first dose. My feet and hands also were swollen and red purple for a month. She lowered my dose, and it was better after that. I only had one time I had to wait a week, because they were low. All the other times, they were high enough to do Taxotere for the over the year I was on it. They always bounced back up the week after for chemo. They didn't suggest it for this chemo, or maybe they forgot again. This is my 7 th different continous treatment, in 6 years of being Stage 4. Maybe my body is saying enough! My daughter wants to go to the movies tonight. I'll see how I feel. I could always wear a mask and scare everyone but my grandsons. Hopefully, no fevers this time again.

  • Inthegrey
    Inthegrey Member Posts: 68
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    My WBC count hovers around 5.0 and no Neulasta for me. I think my oncologist said 2.0 was ok for CMF, not sure. I am also every 3 weeks l. Please ask them...no need to think they forgot. Be proactive

  • Lynne
    Lynne Member Posts: 368
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    I'll ask when I go next week and see the oncologist, about the nuelasta, and how low is too low on CMF. As I said before, she forgot to schedule me for it (they called me to add it on my 3rd treatment, and I said I never got it the first two, so she left it at that), so I never had it the year I was on Taxotere. She dropped the dose and it always came back high enough to get chemo after that. The side effects on this chemo are so much easier with this one than Taxotere (by far the worst of my 7 different treatments). I'd prefer not to get the Neulasta. Another day I won't have to go to the oncologist (or the hospital, if I get the chemo later in the week, which I do) to get the shot.


  • Inthegrey
    Inthegrey Member Posts: 68
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    If you need it, ask for the Nuelasta Onpro that you wear on your arm and it will automatically inject the day after. That way you don't have to go back to the doctor. I'm sure you've seen the commercials on TV - they areon all the time. Plus, some women here have had it I think. The manufacturer has discount coupons if your insurance doesn't cover it for some reason. I hope it works out the best for you!

  • socallisa
    socallisa Member Posts: 10,184
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    I had neupogen and gave myself the shots. No need to go in the next day.

  • Lynne
    Lynne Member Posts: 368
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    Thanks Inthegrey and SoCalLisa. I have seen the commercials for the stay at home one. I'm not sure if my oncology office uses those or not. I will ask. Thanks again!

  • RiRi11
    RiRi11 Member Posts: 70
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    My oncologist stopped my treatment after my 7th! So I am officially done with chemo and have my radiation simulation on Wednesday.

    My last 3 trearments, I ended up in the ER on day 6 with a mysterious fever. No infection each time. On my 3rd trip to the ER they found I had a blood clot in each arm, both in deep veins.

    I never had a port and Im guessing the chemo was too much on my veins. They would get inflammed and with each treatment it was harder for the chemo nurse to find a good vein. My oncologist is confident that 7 treatments have done its job.

    So Im celebrating this morning at brunch with my closest Girl Friends!

    On to the next chapter (radiation) of this Journey!

    I wamt to wish the newbies ‘good luck! You are stronger than you think!’ And stay hydrated :)

  • nocyart
    nocyart Member Posts: 27
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    Congrats on being done with chemo.

    I did round 3 on Friday. Feeling better than I did last round. Still tissue expander discomfort and trouble taking in a deep breath. Also some muscle tenderness. Gonna take it easy today.

    How's everyone else doing?

  • Lynne
    Lynne Member Posts: 368
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    Congrats, Riri! Sorry to hear about your blood clots, YIKES! I had 6 weeks of radiation when I was first diagnosed in 2005. Just a pain going there every day, Mon-Fri. I also fried and peeled (lovely fair Irish skin). Use the lotion on your breast, right before you get dressed in the changing room. It cools it off.

    nocyart-I'm feeling ok. I had my 2nd treatment almost 2 weeks ago. The side effects aren't half as bad as my last chemo, and yes, the 2nd round side effects were better than the first too.I see my oncologist Fri for blood work. I'm sure my white cell counts will be low. As long as the climb back up by next Thurs, for my chemo.

    Hope everyone is having a good day!

    Lynne

  • RiRi11
    RiRi11 Member Posts: 70
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    thank you

  • Jarkwright05
    Jarkwright05 Member Posts: 2
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    hello! I am having a hard time making a decision of chemo or just radiation. I had a double mastectomy and reconstruction last year with no radiation or chemo, ONCO score (11). They wanted me on tamoxifen but I couldn’t tolerate the side effects. I had a local reoccurrence of the exact same cancer come back this year and had a lumpectomy. Drs want to do radiation and hormone therapy (putting me into menopause). I don’t know now if I want that beast either so they gave me choice of chemo. Also concerned about neuropathy with chemo as I can tolerate short term stuff but not sure about long term side effects. I am 38yrs old and have a 5.5yr old and don’t want this a third time.

  • Lynne
    Lynne Member Posts: 368
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    Jarkwright-I can tell you my story. I was originally diagnosed Stage 1, no node involvement, in 2005. 1.5cm tumor removed by lumpectomy. My oncotype score came back low (sorry, I can't remember the score number), only an 8% chance of recurrence in 10 years. I skipped the chemo, and had 6 weeks of radiation. I decided to have my ovaries (and everything else removed) because my tumor was ER and PR+ (Her 2-) IDC. I was 43, and still having regular periods. I went into instant menopause. 60 hot flashes a day. They put me on Effexor for the hot flashes. I took it for a year, and then changed to Gabapentin because I felt like a zombie on it. I was then put on the aromotase inhibitors (to stop the estrogen made in the adrenal glands). I went through all of them and tamoxifen too. I lasted 3 1/2 out of the 5 years they wanted me on them. The side effects were bad. Joint and feet pain was the worst. In 2012, my back was bothering me. I went to my primary dr, and she first put me on predisone, which didn't help. She sent me for an x-ray, then an MRI. I had a compression fracture in my thoracic region of my spine. I also had tumors in 3 other vertebrae as well. I also had a large tumor in my right lung, and my lymph nodes were involved as well. It came back, not in my breast (like I thought it would), but in my spine and lung (now also my liver, and lots of other bones. Now I'm Stage 4 metastatic breast cancer.

    I think back, what if I had a mastectomy instead of a lumpectomy. What if I had chemo in the beginning. Who knows? They said it got into my blood stream somehow, and settled in my spine. They think it had been there for a year. I noticed the back pain for awhile, but I always have back pain, though it's the lower back (this was in my upper) and I sat all day for work. I was short of breath and just thought it was my asthma. I had to have a thoracentisis to remove the extra fluid in my right lung. They got a liter. I've had 4 kyphoplasties, to repair compression fractures. I still have one high up my spine, that they can not do a kyphoplasty on. It bothers me every now and then.

    I don't know what to tell you. Radiation wasn't so bad. Just a pain going every day for 6 weeks M-F. I burned and peeled and had zinging pains off and on. This is my 4th chemo (7th treatment) in 6 years. I stay on each treatment until it stops working (I have new tumors, or the existing ones grow, or the lymph nodes grow). I will be on treatment the rest of my life (I've lived much longer than I thought I would). I still drive and do most of the things that I want to.

    Good luck in your decision! Hugs!

    Lynne

  • 2002chickadee
    2002chickadee Member Posts: 79
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    Hi Ladies,

    I'm about 1 month post-CMF treatments and happy to report I'm feeling well, most side effects dissipated and my hair is starting to grow back where I lost it first (around my temples). Nyocart, I always had more pain in my mastectomy side after chemo -- pain all in my arm and trunk and breast area. I imagined that it was somehow inflaming the nerve sensitivity (I'm still on Lyrica for surgery nerve pain, 7 months after surgery). Seems similar to your tissue expander feeling. It always calmed down for me a few days into a cycle.

    Jarkwright05, what chemotherapy regimen are you considering? If it's CMF, I would say it's tolerable enough and no long term side effects, seems like it might be worth it given your experience. Ask the doctor about specifics of which chemo and side effects, should help you decide. I've got two little ones too (2.5 and almost 6), although I'm older than you at 42, and felt it was worth it to me, oncotype score of 21. I decided to not do ovarian suppression for next phase, just tamoxifen which I start in a few weeks. Good luck with the decision.

    I had Abs Neutrophil counts just above 1 a few rounds, but didn't get neopogen until my last round when they finally went below 1 and my WBC count went below 3. I had one shot of neopogen on a Wednesday and by Friday my Abs Neut were at 11.5 and WBC at 14.7. Like all of this, I think your doctor decides how to treat based on how you've responded to the chemo. Our bodies are all different. Note that neulasta and neupogen are related but different, and timing of when they are given is different.

    Wishing everyone the best with their treatments.

  • nocyart
    nocyart Member Posts: 27
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    Thank you for the response chickadee. I thought maybe I was nuts as both my oncologist and plastic surgeon said they'd never had anyone else complain of tissue expander pain.

  • Inthegrey
    Inthegrey Member Posts: 68
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    Had my final treatment today, #8! My hair feels much thinner to me now going into this one. No one can tell, but I can. Luckily, I have think, dense hair to begin with. Let s hope tonight and tomorrow are good side effect wise. I’ve learn over the months that stress/anxiety really increase SE - a lot for me. I’ve done much better staying at my parent’s in the country rather than in my nyc small apartment. Much less stress and emotional support when needed. Overall, it has been good.

    Nocyart- many people complain about tissue expander discomfort on the other support site I’m on. It seems very common. Hard to believe your surgeon said that. I hope you got a prescription for physical therapy post mastectomy, it helps a lot I’ve heard. I plan on it after mine in late October.

  • RiRi11
    RiRi11 Member Posts: 70
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    congrats in the grey! I totally agree that stress worsen the SE. whenever I went to work (I work with a selfish team)I ended ip in the hospital. Im trying real hard to just sray away until radiation starts. Just to get my body and mind healthy (my las CMF was Sept 4th)

  • nocyart
    nocyart Member Posts: 27
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    Inthegrey, I mean as a side effect of chemo. My plastic surgeon said, "I think what you are feeling is chest wall pain and not related to your tissue expanders at all"

    But the foobs hurt me on days 3&4. 🤷♀️

    And congrats on being done!

  • RiRi11
    RiRi11 Member Posts: 70
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    has anyone’s period come back? Im 43 and havent had a period since chemo started in June. I get mixed messages from my oncologist team... some say it will come back and others say probably not.

  • 2002chickadee
    2002chickadee Member Posts: 79
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    Inthegray - congrats on being done!!!!!

    RiRi11 - my period stopped about halfway through chemo and hasn't come back yet (finished August 17). I'm 42. They said it would probably come back but maybe irregular once I start hormonal therapy.

    Not to throw a downer into this thread, but after my full 8 treatments of CMF chemo that followed a mastectomy with clear margins and no lymph node involvement, my thankfully-a-worrier breast surgeon biopsied the scar of my original biopsy, and lo and behold, chemo-resistent cancer cells. Still sorting out what it all means. Sounds like at a minimum I now get radiation and more aggressive hormone therapy, trying to not think too hard about the maximum (aka distant disease) scenario. Should know more in the next few days.

  • RiRi11
    RiRi11 Member Posts: 70
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    omg Chickabee! Im so sorry! To think we still have to have the anxiety of test results after going through all this!

    Im sending prayers and hugs your way for good results

  • Lynne
    Lynne Member Posts: 368
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    Sorry Chickadee. I hope it hasn't gone anywhere else. Big Hugs!

    I was originally diagnosed stage 1, in 2005, had a lumpectomy, sentinal node biopsy, and 6 weeks of radiation, and decided, at 43, to have my ovaries and everything else removed (ER and PR positve), went into instant menopause. I was put on the aromotase inhibitors, I lasted 3 1/2 years (instead of the 5) on them. After 7 years, in 2012, it came back (oncotype test showed I only had an 8% chance of recurrence in 10 years, lucky me), not in my breast, but my spine and lung (now in my liver and most of my bones, except the arms and legs, now Stage 4 metastatic. I've been 6 years stage 4. CMF is my 7th different treatment. Take one day at a time!

    Hugs and prayers!

    Lynne