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CMF treatment survivors and experiences

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Comments

  • Joyce65
    Joyce65 Member Posts: 30

    Good Morning LaurieDPT et al

    So, I'm in my bad days of round 4. I felt terrible when I woke up this morning, queasy, bone pain, headache, but drugs, a heating pad, a little toast and coffee seems to have revived me a bit. I am finding I am experiencing lower energy with each round. I get out every day for a good walk and I still manage to have a fairly normal second week (including 3 days of true exercise), but feel a bit more winded as each cycle passes.

    Food is the funniest thing. I find lunch is the meal where I can eat a bit more normally. I have to be really careful at the dinner slot, or I upset my stomach, so I've gone to soups for dinner followed by my craving which is vanilla gelato! Something I would never normally eat. Happily, my weight is stable. My doctor did say some women gain weight on CMF so just keep an eye on things.

    Good luck with your next round! I'm here for you and appreciate the community!

  • Ihatechemo
    Ihatechemo Member Posts: 22

    Hi Joyce65,

    How are you feeling today? I am also experiencing lower energy. I get out for a 30 minute walk about every other day. They recommend every day but the weather has not been the best this spring. The doctor, nurses and acupuncturist have all told me to listen to my body and rest when it tells me to. On Saturday I needed a nap at noon and I hadn't even done anything that morning!

    I hope everyone is having a good day. We can get through this!

  • Joyce65
    Joyce65 Member Posts: 30

    Hi Ihatechemo

    It's day 6 since treatment and I'm still low energy. It's definitely this time around. The rainy weather doesn't help. I got out for a nice long "stroll" yesterday since it was sunny and beautiful. Today I ran a few errands, maybe walked 1 mile total and came home fairly tired.

    So strange for me; before chemo I walked 6 to 10 miles a day and exercised 4 times per week. I feel like I'm losing my conditioning and find this to be the most difficult thing for me. I'm a hiker and was training for 2 week-long hiking trips that I had to cancel. I'm hoping I don't come out of this with months and months of work to do to get back to strength and endurance. Sorry, just venting my frustration.

    Hope everyone is doing well. Courage!

  • 2002chickadee
    2002chickadee Member Posts: 79

    Hi Joyce, In my experience, I did lose conditioning. It is so frustrating! But you'll get it back, sounds like you're very committed. Don't despair. I just came back from visiting several beautiful national parks in Arizona and Utah, "hikes" were at the pace of my kids (3 and 6) but I have been an avid hiker much of my life and understand how much you must have been looking forward to those trips. Maybe you could plan your next one after treatment is done, it'll give you something to look forward to? Hope all are feeling well.

  • Joyce65
    Joyce65 Member Posts: 30

    Thanks for the encouragement 2002chackadee! I'm trying to stay positive and as "in shape" as possible with this journey.

    Completed Round 5 on Wednesday -- I felt like I was standing at the top of the hill and looking downhill. Only 3 more to go, only 3 more bad weekends and then I get a rest before radiation starts. The weekend was rough, so little energy, but feeling much better yesterday and today. We all just have to stay focused on the end game!

    I think my hair has thinned. It's not bad, but I notice it. Anyone know how long it takes to get back to normal when this is all done?

    I appreciate you all so much.

    Joyce

  • Inthegrey
    Inthegrey Member Posts: 68

    Hi Joyce65 - Focusing on the end game is a great attitude. I found my last 3 treatments were easier than the others, maybe I got better at handling it. I also started acupuncture at #6 which helped. My hair thinned about 25%, but it was not noticeable to others. I think it was grown back in 2 months after my last treatment. I finished in September 2018. I was not in shape before cancer, so trying to do that now. I’m in the LiveStrong program at the Westside YMCA - it’s free!

  • 19501952
    19501952 Member Posts: 80

    Hi Joyce65,

    I ended 8 rounds of CMF last April. I think knowing chemo was over gave me such peace my overall recovery from chemo to a state of feeling well and optimistic was around 3-4 weeks later. Unlike lots of you I am not particularly into exercise routines or supplements, acupuncture or message. Maybe that stuff will help you feel better sooner than me. I can tell you this though, at the one year mark of the completion of chemo I’m back to mowing our very large complicated lawn by hand, carrying 40 lb salt bags, and I’m the one that carries the heavy groceries from the car into the house. If you told me a year ago that I would be doing the stuff I’m doing now I’m not sure I would have believed it. So......hang in there, look forward to your life after chemo and stay positive.

    Best to all

    Kate

  • ts542001
    ts542001 Member Posts: 36

    i am starting cmf on friday - treatments will be 2 weeks apart and am concerned about that, anyone here have cmf every 2 weeks? will be getting onpro as well. how tolerable is the treatment, how about fatigue? i am 60 years old, had cmf about 15 years ago but treatements were every 3 weeks. i found that pretty tolerable and worked thruout treatment. i'm planning on working thru the treatments now and hope that is a reasonable expectation (will be getting chemo on friday so i can rest over weekend and hopefully return to work on monday.) i'm concerned about the treatments being every 2 weeks, and hoping the side effects arent horrible because it's more intense.

    any thougnts and recommendations would be helpful.


  • Inthegrey
    Inthegrey Member Posts: 68

    hi ts542001 - I know some people here have done every two weeks. You can find there posts from a year ago on this thread. If course it is hard to say how doable it will be for you while working. Plus you are 15 years older now too. I cannot imagine working during CMF and I was very tired wk1, better wk2 and boy, I was glad to have wk3 to feel almost normal for a bit before the next cycle. I did not need Neulasta either. That can be tough for some people. Be sure to take Claritin a few days before to help with the bone pain that can come with it

    You can tell your oncologist you'd like to do every 3 weeks - it is your choice, not theirs remember. You can try every two weeks and change to every 3 weeks if needed to get more rest in between. Personally, I'd rather stretch out the treatment longer and feel better than do it every two weeks to be done sooner and feel miserable. Talk to your doctor about your concerns.

  • Joyce65
    Joyce65 Member Posts: 30

    Hi ts542001

    I’m currently receiving CMF every 2 weeks withOn Pro. This Wednesday will be my 6th treatment. I have found it very tolerable. I am 64 years old and a very active person. My “bad” day each cycle has been Friday (day 3). It’s the one day I just feel wrung out. The other days I manage fairly well. I’ve also found the tiredness is lasting a little longer each cycle, although I’ve been able to exercise the second week of each cycle.

    I’m retired so I haven’t needed to go to work, but I believe I could if I were working.

    Hope that helps. We are here for yo

  • Ihatechemo
    Ihatechemo Member Posts: 22

    My 6th and final CMF treatment starts at 1:00pm today. I feel so good today and I dread the upcoming week of stomach issues but I am going to get throught this and get it over and done with. Then, after a few weeks off, the radiation starts. So glad this part is ending. I hope everyone is having a good day today.

  • Inthegrey
    Inthegrey Member Posts: 68

    You’ve done it - that’s great the last one is today! Good luck. It is such a relief when it is done😊👏👏

  • Nonni2015
    Nonni2015 Member Posts: 4

    Hello all -

    I am starting 4 rounds of CMF this coming Wednesday May 29. I am terrified; I completed 4 rounds of Taxol, experienced a lot of neuropathy. I also had one round of A/C which I could not tolerate, so it was changed to CMF. I had a mastectomy as well. I just need to get through 4 rounds of CMF and radiation and I am so scared because the A/C was not tolerable & I ended up in the hospital. I am 65 years old, was always a fitness person, looked & felt 20 years younger now it’s a different story. I need to know the CMF is worth it and is tolerable

  • Inthegrey
    Inthegrey Member Posts: 68

    I’m sorry you had such a terrible experience with A/C and Taxol. CMF is much more tolerable. I hope you’ve read some of the past posts on this thread to get an idea. Each one of us had a slightly different experience.

    I did my treatments every 3 weeks 8x. My immune system had time to recover in between and I didn’t need the Neulasta shot to raise my WBC count. People usually don’t get neuropathy with CMF either. How often are your treatments? If they say every 2 weeks, request every 3 weeks if you want more recovery time. Every 3 weeks is very common and standard. With every 2 weeks neulasta is definitely needed

    You should do much better on this. You can still get the side effects of jittery stomach, acid reflux and fatigue. I was in bed all day the day after treatment each time. I was a dizzy, but my the second day it was better. Chemo was optional for me and I’m glad I did CMF.

    I hope it goes well and I’ll keep you in my thoughts. 🙏🙏


  • LaurieDPT
    LaurieDPT Member Posts: 15

    I am sooo happy for you Ihatechemo!!! You have been a great encouragement to me and the community. I know you’re looking forward to “normal” whatever you enjoy that to be. Blessings on your journey.Heart

  • LaurieDPT
    LaurieDPT Member Posts: 15

    nonni2015 - I ditto what intheGrey wrote. I am doing my 4th CMF treatment May 29. I am a teacher and was able to complete teaching through the school year by having the chemo Friday mornings and recovering over the weekend. For me the first 3 days I am not focused and feel Ike I have a mild flu. It is manageable.

    The anti nausea meds can be effective and if they aren’t, ask for something else. Be sure to speak up. I had mild neuropathy which has increased every session. My blood sugar went from normal to dangerous. I was told, “CMF doesn’t do that.” When I insisted they take a look at my blood sugar numbers, they figured out it was the steroids they give with the infusion to help the nausea meds be more effective. The high blood sugar caused mild hallucinations which “doesn’t happen with CMF”. Depending on your treatment team, they may or may not be familiar with all the side effects of all the medications. This site has been a godsend.

    Let us know how you do.

  • Joyce65
    Joyce65 Member Posts: 30

    Hi Nonni2015

    So sorry you've had such a rough journey. I go for my 7th treatment tomorrow and am so looking forward to the end of things. I have my treatment every 2 weeks with the OnPro shot for boosting the white blood cells. It has been very tolerable. The hardest days for me (if you count chemo day as day 1) have been days 3-5. But, it's queasiness and a bit of a lack of focus and low energy, nothing worse than that.

    I think you'll find that most of the women on this board have found it tolerable.

    We are here to help you so just ask if you need additional input.

  • Joyce65
    Joyce65 Member Posts: 30

    Dear Ihatechemo,

    Congratulations! I'm heading in for number 7 tomorrow and then 1 more. I can't wait! I hope you are feeling well this week. Best of luck with the radiation and wishing you a long and happy life! It's been great to have you as part of our community.

    Joyce

  • Ihatechemo
    Ihatechemo Member Posts: 22

    Thank you 1000 times over LaurieDPT and Joyce65! I could not have gotten through these treatments without the advice and support of this community! So thankful for all of you and I wish you all the best through your remaining treatments. My last treatment seemed to be the most tolerable for me. My stomach issues not bad at all. I am sticking to small meals, fiber, fruits and vegetables. Definitely still have fatigue but I am resting as needed. I know my energy will improve over the coming weeks.

    Nonni2015 - Yes, CMF is tolerable. You can do this! Everyone is different, but I needed the nausea med (Compazine) as soon as I got home from the infusion. That helped for the first 24 hours. I also needed some Tylenol the first time due to headache. Rounds 2-6 I was given the Neulasta patch because my white blood cell count dropped after the first treatement. That was not a problem at all. If you get that, definitely start Claritin and Alleve the day before and for a few days after. You can read earlier postings about that. Drink fluids and flush out your system. I snacked on Saltine crackers during the infusiton. If your treatments are 3 weeks apart like mine, each week you will feel better. By week 3 I felt normal. I will be thinking of you tomorrow. Please let us know how you are doing.

  • Ihatechemo
    Ihatechemo Member Posts: 22

    Nonni2015 - one more thing - alternate therapies such as Reiki and Massage Therapy helped me throughout my treatments. I scheduled the Reiki the day before the pre-infusion bloodwork. This helped reduce my anxiety about facing the next round.. I scheduled massage therapy about a week after treatment to help clean out the toxins. Both practiioners work with people in treatment and were recommended by my treatment center. Perhaps you can get recommendations about the same in your area. There was a program in my area that paid for the first 3 massages. The rest were at a reduced rate of $50/hour.

  • 2002chickadee
    2002chickadee Member Posts: 79

    HI Nonni2015, I did CMF last April thru August, and agree it is overall a lot better tolerated than some of the other chemos. I think you can do it! I also had treatments on Fridays, hit the bed pretty hard over the weekend, worked from home on Mondays, and was back in the office at work by Tuesday, feeling under the weather but tolerable. By week 3 I felt myself again. I managed to do light exercise throughout except for the first few days after an infusion, and hair loss was minimal. The only bad times I had came from two infections due to low WBC -- a stomach bug I caught from my kids and a bout of salmonella. I did not need the neulasta until my last cycle, when I had one to boost WBC.

    Good luck tomorrow and keep us posted.

    Hooray for the ladies closing in on their last rounds! Finish line in sight.

  • Joyce65
    Joyce65 Member Posts: 30

    Hi Everyone,

    Just an update. I finished round 7/8 last Wednesday. One more week and then I get my last treatment. I am so ready to be done with this and get a break before I start radiation therapy in mid-July. I'm finding that the fatigue is lasting longer in these later rounds of chemo; I'm winded when I go out for a walk, end up taking a nap in the afternoon if I've been active. In the earlier rounds, by day 7 or 8 I was feeling pretty normal. It's now taking until day 10 or 11. I still get to feel "normal" and exercise for real for a few days, but for me, it's definitely been harder in these later rounds. I just keep telling myself I'm almost done, so I'm keeping the end in sight.

    I send positive wishes to all of you who are on this chemo journey. We will prevail!


  • Ihatechemo
    Ihatechemo Member Posts: 22

    Hi Joyce65,

    Bravo! Excellent! Yes, the finish line is in site! I also will start radiation in July. I wish we could "fast forward" to the point where this entire process is over with and we have our lives back. For now, all we can do is take care of ourselves and rest as needed. It's definitely NOT what we are all used to. Most of us are going 100 MPH every day taking care of things. I'm grateful for the others on this site who are ahead of us and have been very reassuring that better days are ahead!

  • Joyce65
    Joyce65 Member Posts: 30

    Thanks Ihatechemo!

    this discussion board has been so helpful and just to have even this small community of women who are going through this together has been great. I am so looking forward to August 2 which will be my last day of radiation. I figure that's when I really get my life back. I can't wait!


  • LaurieDPT
    LaurieDPT Member Posts: 15

    joyce65 so glad you are completing a leg of the journey!! Celebrating with you

    I’m heading into round 5 Monday. It has taken longer to get energy back and for blood count to come back to normal. Funny how I’ve told myself to slow down and be nicer to me but now that I have to do it...it’s hard! Feeling less efficient, less effective and less valuable which isn’t true. Just feels that way. I see the importance of a strong support team. This board has been tremendously helpful. And there is a group called chemo angels that sends weekly cards. And a cleaning team. It all makes more of a difference than I thought.

    Blessings as you head to August to complete your healing journey

  • Joyce65
    Joyce65 Member Posts: 30

    Hi LaurieDPT

    Thanks for the encouragement. Normally I would be feeling pretty normal by now. It's been 2 weeks since my previous treatment and my final one is tomorrow. I was out running errands and was amazed how tired I still felt. I'm trying to chalk it up to the fact that I had my mediport removed yesterday and maybe my body is still reacting to that. It has been surprising that each cycle, the fatigue and lack of appetite lasts a little longer.

    I'm so looking to the end of this phase tomorrow! Thanks to everyone who has helped me along the way.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    I am 1 month after my last treatment. No scan showed any cancer and I'm going in for bloodwork monthly so I opted out of radiation. Oncologist is ok with it as long as I keep the bloodwork up and consider something to keep the hormones low. Surgeon is pressing me to do it, but I know it is my choice.

    Something that surprised me was I had a massage right after my last chemo session and my thinking came back super clear. I have scheduled a massage every week now. I am considering it part of my recovery. If I had known it would be so effective I would have done it earlier and my chemo treatments

  • socallisa
    socallisa Member Posts: 10,176

    almost done Joyce! You will get your stamina back..

  • Joyce65
    Joyce65 Member Posts: 30

    Hi LaurieDPT,

    Did you have a lumpectomy? If yes, I would strongly encourage you to have the radiation. I just looked at your diagnosis and I'm assuming they will want to radiate the lymph as well as the breast, so more difficult than mine which was just 3 weeks, 5 days/week. So I had 15 sessions. They were able to give me the boost to the site of my cancer at the same time as the "regular" radiation. I have had no side effects except for the skin irritation that I"m experiencing now. It's is totally manageable. You've already done the hard work with the chemo; It's all insurance against a recurrence, a little more "pain" now for hopefully a cancer-free future. Hang in there and keep fighting.

  • Ihatechemo
    Ihatechemo Member Posts: 22

    Hi LaurieDPT,

    Congratulations! Glad that part is behind you.

    Regarding the radiation: I had 20 radiation treatments (16 total breast and 4 boosts to lump site). Radiation adds to the fatigue but my doctor felt it was necessary to make sure no other small particles had been missed. It's been 1 1/2 weeks since I completed radiation and I agree with Joyce65 that it was totally manageable. It is not at all as difficult as chemo. I used both Miaderm cream and Aloe Vera cream all over my breast beginning a few days prior to the start. My skin got red in the second week. It eventually started to feel like a bad sunburn so they prescribed Lydocaine cream to mix in with the other creams. That completely took out the sting. I only needed the Lydocaine for a few days. The month flew by and I'm glad it's over. I was there for about 30 minutes each day, at the most.

    Regarding the massage therapy: If you look back at some of my posts, I found massage therapy to be essential to my recovery after each infusion.The therapist said it is proven to aid in cleaning the body of toxins. I am still going once every 3 weeks. Also, I found Reiki to be helpful in reducing anxiety and promoting relaxation.

    Again, congrats on the chemo being over and done!