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CMF Question

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Comments

  • ml143333
    ml143333 Member Posts: 190
    edited September 2016

    Nothing new to report for me. Just living life. My next Oncology appointment is on 10/6.

  • ritajean
    ritajean Member Posts: 4,042
    edited September 2016

    And isn't it good just to be "living life?" Hope that this next onc appointment goes well for you. Keep in touch!

  • mandy1313
    mandy1313 Member Posts: 978
    edited September 2016

    Popping in to say hello and to check in on the gals in treatment--hope you are all doing well.


    Hugs Mandy1313

  • L_in_CA
    L_in_CA Member Posts: 28
    edited September 2016

    Hi Everyone

    Im happy to say i see light at the end of the tunnel. 7 more infusions to go. Im looking forward to November when this trratment is over. i hope my labwork stays steady. i see some of my levels slowly declining but still good to go with infusions. Im still shedding hair but looks ok. Glad to hear everyone is doing well.👍

    Libby

  • akshelley
    akshelley Member Posts: 58
    edited September 2016

    I start Round #4 on Tuesday, and am dreading it. Taking my Miralax to head off the pass the potential for constipation. Which always occurs 2-3 days after infusion and starting Cytoxan pills. I ended up having a 4 week reprieve from CMS in order to have the painful tooth extracted. Took 10 days for my jaw to heal properly.

    I'm mostly bummed because these 4 weeks off reminded me how good I can feel, off chemo. After about a week, the metal taste goes away, the constipation resolves, and I have more energy. Got so much done in the last 4 weeks. Canning the fall garden harvest, baking, cleaning up the yard for winter snow, and taking care of my flock. It's so rewarding having a "living backyard". Don't really want to go back on any chemo, including CMF, but I guess I don't have much choice. Thanks for listening to me vent.

    ON the positive side, my husband and I were able to purchase a Sleep Number bed that sits me up at night to sleep. I have lung mets, and when my lungs fill up, I have to sleep at 45 degree angle and with 02. If I ever need it, I can elevate my feet too. My old mattress was too hard on my metatasized bones, including my pelvic girdle, ribs, and shoulder blades. If my cancer progresses, I can soften the firmness of the mattress. I am having the Onc SW submit the bill to Medicare, and hopefully they will view it as Durable Medical Equipment & reimburse us for part of it. If I have any luck at all.

    I hope you're all doing well, and keeping up the good fight. Take care. Shelley

  • ritajean
    ritajean Member Posts: 4,042
    edited September 2016

    Libby,

    So glad that you are winding down on this journey. It is always exciting when we can see the end.

    Shelley, I hope that this next round of chemo is good to you. Hugs, dear bc sister as you continue the fight. My thoughts and prayers will be with you. Please keep us updated.

  • Su9987
    Su9987 Member Posts: 1
    edited September 2016

    Hello,

    I recently started CMF 3 weeks ago (September 8) and the first round wasn't too bad. The side effects were minimal and I still was able to go about my daily routine normally most of the time. However, I went in for my second round today and the doctor said my ANC count was extremely low (0.5). I am freaking out and was wondering if anyone else had this problem as well. It has only been one round of CMF and I'm already facing low ANC counts...

  • socallisa
    socallisa Member Posts: 10,184
    edited September 2016

    I did


  • L_in_CA
    L_in_CA Member Posts: 28
    edited September 2016

    Shelley- hope your feeling better.

    Hi RitaJean and SocalLisa-.so glad to hear from you!

    Hi Mandy-Happy to hear things are doing well for you.

    Hi Su9987-Mine is slowly decreasing and below the standard range however Since the other factors are steady, they feel that it shouldnt interfere with my weekly infusions. Also My dosage of Methotrexate was decreased 25% about a month ago because my liver levels was very high. Now it has stabilized. i was getting worried about that. Dont you worry, your Drs and nurses will take good care of you. im very happy with mine!

    Happy Weekend Everyone! Libby


  • akshelley
    akshelley Member Posts: 58
    edited October 2016

    Su9997--My ANC fell to 1.00 with CMF but my doc reduced my does by 20% also and they haven't dropped that low again in the three subsequent infusions. I think the first cycle is the hardest, while you learn what s/e you're having and how to head them off at the pass. I ask my MO for extra days of steroids and only I take them in the morning. They tend to ramp up my energy and appetite a little, then it's out of my system by bedtime. Honestly, for me at least, the s/e are less than some of the other chemo's I've been on. And I've seen some good results. So hang in there. (I sound like a tv ad for CMF, I know)

  • softness1
    softness1 Member Posts: 100
    edited October 2016

    Hi everyone,

    I'm just checking in and hoping all is well. I'm 3 years out of chemo and I feel good. Those months of chemo, were the longest months of my life but I survived it and you guys will too. Just look forward to the week after your last treatment. I focused on that week instead of the weeks I had to live through to get there. Stay hydrated, take your meds when needed. The worse for me was the constipation. lol... Kick butt ladies


  • ritajean
    ritajean Member Posts: 4,042
    edited October 2016

    Hi softness......wow! It's good to hear from you! I am so glad that things are going well for you!

  • ml143333
    ml143333 Member Posts: 190
    edited October 2016

    Softness - wonderful! Glad to hear you are doing well.

  • Heidi000
    Heidi000 Member Posts: 17
    edited October 2016

    I just had the same experience this Wed. Was disappointed that my ANC was .9. Doc gave me a shot of Zarxio

    I was re-tested Friday am and was approved for treatment.

    I was panicked as I didn't expect this to happen before chemo 3. Doc decided that she will administer another shot next Friday so that this doesn't recur.

    I feel crappy today.

    Not many of us are having CMF, so I appreciate finding this board.

    Best,

    Heidi


  • Lillypoppy
    Lillypoppy Member Posts: 55
    edited October 2016

    Hello Heidi

    Just wanted to say hi. I don't visit these boards very regularly these days but I had CMF a couple of years ago for many of the same reasons it seems you have chosen it. I, like you, had clear nodes and similar cancer stats (even same surgery) but oncotype came back as 30. This prompted me to choose CMF. I had 12 infusions (I'm in the UK) and I got through, with the help of the ladies on this forum. My ANC, like yours seems to have, dropped each infusion and I had nulasta shots (which gave me severe joint pain) for the first few times I had it.

    Can't say I found CMF that easy -but do-able all the same. It seems forever when you're going through it but lots of ladies on this board told me to focus on the end point - which I tried to. Sending you my thoughts Heidi. This time will pass and you will be able to move on with a degree of normality again very soon.

    Lilly x


  • ritajean
    ritajean Member Posts: 4,042
    edited October 2016

    Heidi,

    Take it just one day at a time. You can do this. There are ups and downs to this treatment but most of the side effects are manageable.......just not something that we would really like to do! How many infusions do you have to do? I had a big calendar and I marked them off with big bold x's once each was finished. Lily is right! She gave you good advice when she told you to concentrate on the end of the journey because life IS good after CMF chemo. Sometimes a good walk will take away the panicky feeling when things don't seem just right after a treatment.

    Let us know how you are doing and we will help you get through this.

    Rita

  • babs6287
    babs6287 Member Posts: 1,619
    edited October 2016

    Hi All,

    think I'm the only one on CMF indefinitely???? I get infusion every 3 weeks for progression to my liver after being NED for a few months.

    I only had one infusion this far which wasn't bad. I know the SE's are cumulative so bracing for later on.

    Babs

  • akshelley
    akshelley Member Posts: 58
    edited October 2016

    Babs-I'm also on CMF indefinitely. Well, I'll stay on it as long as it's working, then when it quits working, the MO will find another tool in his tool box. I'm scared he'll eventually have to tell me that he's run out of tools. I get scan results tomorrow, and I'm not looking forward to it because I have had more bone and joint pain than normal. I have found a new (to me) helpful remedy to help manage constipation, stomach cramps, nausea, and pain. It's cannibus oil mixed with olive oil, and you drink about 1/4-1/3 of of cup. You may get a little buzz off it and mild munchies. My spiritual healer gave it to me but you can buy cannibus online and mix your own. My MO said he had no problem with that or pot edibles.

    Babs, I'm on Cytoxan 2 weeks (pills) and infusion on week 1 and week 2. Then off 2 weeks. Chewing on ice while they push the Methotrexate & Fluro helps prevent mouth sores. Somehow, the corners of my mouth still crack and dry out.

    Hang in there sisters! One day at a time

  • babs6287
    babs6287 Member Posts: 1,619
    edited October 2016

    AKshelley-thanks for the heads up. I'm going for a liver biopsy next Friday so they can test for genomes and mutations. Once my MO knows this, she can figure out which studies I'd be eligible for. Like you, I'll be on CMF until it fails me. I take the Cytoxan as an iv drip.

    I hope your scan results are at least stable and the pain you're feeling is from healing. Let me know,

    Babs


  • Heidi000
    Heidi000 Member Posts: 17
    edited October 2016

    Rita, Lilly, Mandy,

    Thank you for your words of encouragement and support. I got through the infusion and felt really good for a few days. Had shot today to keep ANC level up and looking forward to Sept 2 which will be the half way point for me. Can't wait for vacation on the 10th.

    Interesting, I could feel blood count falling today. Slight headache and body aches.

    Took the Claritin for bone pain.

    Babs and Akshelly- we are going through this together and I have you in my thoughts.

    Did all of you work while going through treatment?

    Keep the advice coming as I am finding your posts helpful.

    Xoxoxo Heidi

  • Lillypoppy
    Lillypoppy Member Posts: 55
    edited October 2016

    Heidi - everyone is different regarding working. I personally did not and could not have worked during treatment. I guess it depends on the job, employer and if you'd come into contact with "bugs" (e.g. If you were working in a healthcare setting like I would have been ). I always had low counts, like yourself and I personally did not feel well enough to work (I had infusions day 1, day 7 and day 21 and had 12 infusions)

    I'd just say listen to your body and don't put pressure on yourself to do what others may or may not have done! Focus on keeping the best you can be with no additional pressures.Take care.

    Lilly x

  • babs6287
    babs6287 Member Posts: 1,619
    edited October 2016

    Heidi- yes I work full time. I manage a hair restoration drs practice. I'm hoping my hair doesn't thin out too much on this treatment. It wouldn't look too good for the doc!

    Bab

  • ml143333
    ml143333 Member Posts: 190
    edited October 2016

    Heidi - I did work, but had a super understanding boss who has been through treatment for breast cancer as well. I just made sure to keep to myself as much as possible to avoid others at work who might be germy especially since I worked in a hospital.

  • akshelley
    akshelley Member Posts: 58
    edited November 2016

    Just commiserating out loud. Had to take an extra week break from CMF (besides regularly scheduled two week break) because of low WBC. Infusion 1 of Round 5 hit me like Infusion 1 Round 1. I couldn't hold anything down and had to be admitted in the hospital overnight to get IV Fluids, anti-nausea & pain meds. I am doing better now, but am dreading Infusion 2 on Wednesday. Plus on Cytoxan. I am reciting my "fortitude" mantra and hoping for the best. On the bright side, I get to go to Bandon, OR for a girls gettaway. Hope to be feeling well.. Anyone with similar experience tolerating CMF?

  • Lillypoppy
    Lillypoppy Member Posts: 55
    edited November 2016

    Hi Akshelley

    I had a very similar episode infusion 2 of my 12. Extreme vomiting for 24 hours, dehydration and sweating etc. Overnight stay, IV and improved. I always thought I had not had my pre-infusion meds given as it was a different nurse but I guess I'll never know. Anyhow I had better antiemetics the following treatments and my chemotherapy reduced dosage slightly the next one and it never happened again. I always had a low neutrophil and white cell count throughout treatment.

    Good luck for Wednesday. I hope you're well enough for your getaway.

    Warm wishes, Lilly.

  • babs6287
    babs6287 Member Posts: 1,619
    edited November 2016

    I've only had 2 treatments thus far and handled them well

    Bab

  • Heidi000
    Heidi000 Member Posts: 17
    edited November 2016

    Just finished round 4 of 8. This time I was more fatigued, more nauscuous. I slept a lot since Thursday with the help of zofran and Valium.

    Went to work today and did aerobics class and cooked dinner. Now chilled and tired. Also stomach cramping. Maybe too much activity?

    Anyone else have stomach cramping?

    I also had lowANC count last round, so having a shot tomorrow. Maybe chills and stomach cramping will go away.

    I think the only help is sleep.

    Nite nite everyone.

    Heidi

  • akshelley
    akshelley Member Posts: 58
    edited November 2016

    Heidi--I have had bouts with stomach cramping and constipation. Finally got that resolved, with an army of over the counter & prescription meds. I get Denusamab for bone shot, and also Neupogen for low Neutrophil counts. My legs are stiff and sore after both. I am continuing on CMF tomorrow. Hopeful for better results.

  • L_in_CA
    L_in_CA Member Posts: 28
    edited November 2016

    Hello Everyone

    Im happy to report that today was my last infusion!!! As i reflect back six months ago i was scared and anxious of whats to come. I was reassured by the wonderful ladies before me that it will be Ok. I appreciate your kind words of encouragement and support.

    The worst side effect for me was loosing and shedding hair. I think i lost 30-50% but its hard to judge since my friends and family say its not noticeable.

    Other side effects:

    1. the nauseated feeling i got after infusion. it lasted about 30 minutes.

    2. A couple of times i experienced the metallic taste for a couple of days.

    3. When my port was flushed i always tasted it and then my salivary glands would start acting up. Yuck!

    4. My sense of smell was very sensitive. oh how i hated the cleaning agents as i walked into the clinic.

    5. Some of my nails have a slight discoloration.

    6. My palms and feet appear darker.

    I had weekly infusions and daily pills. Thank goodness i dont have to take any more. Im scheduled to have my port removed in 3 weeks and then start 6 weeks of radiation in December.

    Sending healthy wishes to everyone of you especially to the Ladies who are still in treatment.

    As others have said, this is doable!

    Libby


  • mandy1313
    mandy1313 Member Posts: 978
    edited November 2016

    Hi Libby!

    Congrats on finishing chemo.....that is one big step. I remember when I wrote to this group and told them I was done---because this group understands what that means and I wanted to pop in and give you a cheer. Most of your side effects will disappear in the next few months and you will feel great. I found rads alot easier than chemo and I hope you do too. I used cream immediately after each treatment (right in the dressing room) and will be happy to give suggestions should you need them.

    But wahoo!!! Hoorah! You are on the road.

    Seinding you (and everyone) lots of hugs.

    Mandy1313

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