Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

CMF treatment survivors and experiences

17810121315

Comments

  • Dleon24
    Dleon24 Member Posts: 8

    funny you should say that I just read yesterday that taking vitamins is not good because it protects th cells too much and even protects the cancer cells .

  • Inthegrey
    Inthegrey Member Posts: 68

    yes, that what I’ve read too. Glad you are reading and researching about your treatment

  • Joyce65
    Joyce65 Member Posts: 30

    Hi Deleon24

    I finished my second round of CMF on Wednesday. I agree with inthegray, get a prescription from your doctor for Zofran. My nurse told me to not miss a dose in the first couple of days in order to control the nausea (even though I also had steroids -- turns out the steroids make the Zofran work better to protect you). They also suggested eating small meals every couple of hours to keep something on your stomach; turns out an empty stomach is our worst enemy for the nausea....who knew? I find I'm not the least bit hungry, but make myself eat anyway, just simple things....

    As for liquids, make certain you stay hydrated. Try seltzer water, sometimes bubbles make it more palatable. I also found ginger ale and iced ginger tea to be helpful (add a little lemonade for sweetness).

    Hope by now you are feeling better, stay strong

  • Ihatechemo
    Ihatechemo Member Posts: 22

    Hi LaurieDPT, How are you doing today? I also had nausea and bad headache after round 1 of CMF. I had ice bags on my head! I called the doctor and was told to take Extra Strength Tylenol which helped. After rounds 2 and 3 I took my anti-nausea medicine (10mg of Compazine) as soon as I got home from my infusion and also 2 Extra Strength Tylenol. I continued this for the following day. Annoying light nausea seems to linger for a few days after.

    After round 1 my white blood count went below 1000 so I am now given a Nuelasta patch on my arm after each infusion. That keeps my count normal but it also comes with side effects. I was told to take Claritin and Alleve (as Joyce65 mentioned above) starting 2 days before each round and for a few days after. I believe the Alleve is also helping to eliminate any headache after infusions.

    HAIR: Follow what Inthegrey posted - Silk pillowcase (I found one at Bed, Bath and Beyond), baby shampoo once or twice/week, no color, no hair dryer, curling iron, products, etc. I had about 25-30% thinning 3 weeks after round 1 for about a week. Then it slowed. I'm hoping and praying to hang on to the rest or the next 3 rounds. I did purchase a wig to be prepared. I also rub Cerave Healing Ointment into my fingernails and toenails each night.

    I hope you are feeling better.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    thank you for your wonderful suggestions! The headache and nausea finally stopped about 3 o’clock in the morning after my first infusion. Now it comes and goes. I also got the Neulasta on Sunday. I’m going to use Alleve today and Claritin. Good to know you can take them preemptively. I will start them earlier next time. Amazing that the nurse did not know about the side effects. Colace has been effective. I was afraid to take it at first because I was told I could either have diarrhea or constipation so I bought both Colace and Imodium. I needed the Colace.

    I am getting an infusion every three weeks. Five more treatments to go. I heard that weeks two and three are easier. Has that been anyone’s experience?

  • Inthegrey
    Inthegrey Member Posts: 68

    hi LaurieDPT - yes, week 2 is better, I was still fatigue some, but eating better and no othe side effects. I loved wk3 and was almost normal feeling, but a bit low energy. I was out and about much more. Sound like you are finding what works for you. I had acupuncture starting around #6 and it helped me a lot. I felt better in the last 3 treatments than all the others.

  • Joyce65
    Joyce65 Member Posts: 30

    Hi LaurieDP,

    I'm 6 days post round 2 right now and can say that #2 has been easier than #1. I've had less nausea and fatigue, but honestly, a bit more bone pain; though not debilitating in any way. I think of my bone pain as little factories creating white blood cells so if I'm experiencing some pain, it means the factory is working really hard! Sometimes positive visuals are a really helpful thing. I have found that a heating pad has been helpful with the bone pain.

    I encourage you to get out and walk every day, at least a little bit if you can. I find it helps with how I feel both physically and mentally. Do you have a park near your home? I spend my time in Central Park and it does me such good.

    As for the constipation, it seems like we've all had to learn to manage this side effect. I still don't have it quite figured out. I stop my Colace and Senekote because things seem good and then I get stopped up again. I think part of it is that I'm a very active person so my body is having trouble normalizing when I am less active. I'm writing everything down in hopes of getting it right after round 3.


    Inthegray, it's great to hear that round 3 might be even better than this one, something to look forward to.

  • Inthegrey
    Inthegrey Member Posts: 68

    Hi Joyce65 - I walk in Central Park too! Maybe we can meet up for a walk. I can come to your part of the park. I’m up on W. 109th and CPW. Let me know if you’d to do this.

  • Ihatechemo
    Ihatechemo Member Posts: 22

    Hello Everyone,

    Comment: One option for constipation that was suggested by my doctor's office: Mix 4 oz. prune juice, 1 Tbs. applesauce and 1 Tbs. oat bran. Can be warmed up if you want. I tried this and the oat bran was really grainy to get down so I kept adding more applesauce. It worked in a few hours. For 2-3 days after infusion I warm up 4 oz. of prune juice and sip that in the morning and take 1 Colace if I feel necessary.

    Question for those of you who had success with acupuncture: Did you find relief from insomnia, fatigue and/or hot flashes after the first session or did it take a few? I had my first session last Friday and have had no improvement. I have found immediate benefits in general relaxation from Reiki. Massage Therapy definitely helps me with clearing out some lingering post-infusion fog and general "not feeling good".

    Wishing the best to you all.

  • 2002chickadee
    2002chickadee Member Posts: 79

    Ihatechemo,

    I didn't do acupuncture during chemo, I started it during hormonal therapy many months later. I had 4 sessions over 3 weeks that helped me tremendously, I think cumulatively. I took a few months off and went for a session last week to help with pain and hot flashes, which were creeping back, even this one session made a tremendous difference, although I've been wearing little points in my ear for hot flashes for a few days too. The acupuncturist I saw said we should do 3-6 sessions close together and then I can come back from time to time for maintenance as needed. I would guess this might be similar for managing chemo symptoms?

  • Inthegrey
    Inthegrey Member Posts: 68

    hi ihatechemo - it takes several acupuncture sessions to get the benefit. I started shortly after my 7th treatment and had a session once a week for 3 weeks. It seem to help my overall well being I think.

    I go weekly now since starting Tamoxifen in November and it definitely helps with hot flashes. He also addresses my winter sinus issues. I thought I could decrease to every other week, but my hot flashes got worse, so I’m back to weekly. Hope this helps you.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    hi ihatechemo. I get round 2 on Friday. Saw the doctor and he is reducing the steroids since the brain fog was so extreme I was seeing things. Just the first day, but it was alarming. He is also changing The type of anti-nausea medicine since I was nauseous before The infusion was finished. I have genericZofran. Week two All I needed was some ginger drops. I have been using the Cerave which I like. My hair is thinning after just one round. I'm surprised it started so soon! I hope to keep my hair as well. Side effects come and go. Some days I'm energetic, other days mild nausea and fatigue hit unexpectedly. I teach three days a week and so far I haven't missed a day. So thankful! Encouraging that round two might be less stressful or maybe I'll just know how to handle it.better. Do you recommend starting Alev two days before the infusion?

  • Joyce65
    Joyce65 Member Posts: 30

    Hi Laufie DPT,

    I'm currently 5 days post my 3rd round of chemo. If you aren't keeping a journal of your side effects, eating, etc. I would strongly recommend it. It really helps me to be able to look back at the same day 1 or 2 treatments ago and know what to expect. It's not always the same, but there is definitely similarity in the patterns. I've found that while my appetite comes back during the second week, my taste buds aren't really working very well anymore. I can taste and enjoy sweet things, but all the things I should be eating for my health just have no flavor. My nurse suggested using lots of fresh herbs to add flavor, so I'm trying that, also there are so many foods I just don't want to eat.....and I'm a foodie!

    As for the hair, I'm sorry it is already thinning for you. I have cut back to washing mine every 3 days, I gently towel dry and then finger/air dry. I am no longer using a hair dryer unless I have somewhere to go and want to look well put together, then I let it air dry until it's almost dry and style it lightly on a very low heat. If your hair is long, you may want to consider cutting it shorter so its easier to deal with and doesn't require as much styling/brushing. As a just-in-case, you may want to visit a wig salon to match your color and style so you can quickly order something if you find you need it. I've also practiced tying headscarves in case I need it.

    Stay strong, appreciate your good days and get out and enjoy the spring weather if you can!

  • LaurieDPT
    LaurieDPT Member Posts: 15

    Thanks Joyce65

    I’m definitely feeling more attracted to sweets and breads. Not a good thing! Going to have to really watch it. I found two soups that do appeal to me - lots of flavor - pasta fagoul from Olive Garden and homemade chicken noodle soup. Hope you can find some favorites too.

    My hairdresser, whose husband had cancer and who sponsored a hair donation fund raiser for me, suggested using the cool setting on my blow dryer when I need to style. She cut my hair a wash and go cute shor style and I’m thankful for your suggestions. I still like to style it sometimes.

    I was given extra strength Tylenol for my infusion headache. No effect. I understand alternating Aleve and Tylenol could be more effective. Shopping for Aleve and ginger drops tomorrow. I appreciate this group and your support.

  • socallisa
    socallisa Member Posts: 10,176

    watch how much tylenol you take.

  • Joyce65
    Joyce65 Member Posts: 30

    I echo SoCalLisa on the Tylenol. My liver enzymes have been elevated ever since I started my chemo. My doctor said to avoid taking too much Tylenol as it is harder on the liver than Advil or Aleve.

    LaurieDPT, I don't know if it will help you, but I find going for a walk to be very helpful with my headache/fuzziness, bone pain (Neulasta) and just general unease. You don't need to go far or fast, but the fresh air (particularly on a sunny day) can be very helpful.

  • socallisa
    socallisa Member Posts: 10,176

    I had so much bone pain on the Neupogen but it helped to lower the dose with the same white blood count boost.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    socallisa and Joyce 65

    Great info. Thank you! I will add 20 minutes of walking to my routine. Just brought home some Aleve.

    I’m going to take 2 Aleveat the start of my infusion Friday in hopes of avoiding the headache I got last time. I’m also increasing vitamins B and C and taking N- acetyl L-cysteine for liver detox/support.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    I’m on neulasta. I saw some recommendations for taking Claritin 2 days before and several days after. I did that and it seemed to minimize the bone pain. Hope the suggestion helps

  • Joyce65
    Joyce65 Member Posts: 30

    LaurieDPT

    I'm also on Neulasta and am using a combination of Claritan plus Advil and its managing the bone pain well. There is a small study that showed the effectiveness of the Claritan. You should take it the day of your chemo (so the day before the Neulasta shot) and for the following 4 days, so 5 days total. It turns out histamines are generated when the white blood cells are being produced which is part of the cause for the bone pain, so subjects in the study found the Claritan helped. Don't know if you can use any old antihistamine since the study was done using Claritan.

    Make certain to ask your oncologist about the supplements. There are some that you should avoid while on CMF.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    this from WebMD tells why it’s good to take Claritin before you start the neulasta. I love it when science and experience confirm each other :’j. “Antihistamines can ease your symptoms, but they work best when you take them before you feel a reaction. They can build up in your blood to protect against allergens and block the release of histamines.“.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    chemo round 2. I took 2 Aleve and 1 Benedryl at the start of infusion and was able to avoid the headache this time. Yay! Dr. Halved my steroids so I’m feeling more in touch with the world. Aloxi and Emends for nausea working 75% effective.

    This infusion mix has left me with dry mouth (drinking 1/2 gallon water daily plus ginger ale, tea, etc) and bad heartburn. Any suggestions would be helpful.

  • Inthegrey
    Inthegrey Member Posts: 68

    hi LaurieDpT - good to hear round 2 is a bit better for you😊. Heartburn and dry mouth were two of my side effects as well. For heartburn, I took Nexium starting three days before chemo for a week. It takes a while to be most effective. For dry mouth, I had Biotine gel and dry mouth tablets that stick to the inside of your cheek. The tablets worked the best and I was able to sleep with one stuck to my cheek. They are in the toothpaste aisle with other dental items. I kept on eye on the shade of my urine to know if I was hydrated enough. I drank up to 250 oz a day!

  • LaurieDPT
    LaurieDPT Member Posts: 15

    Inthegrey- great suggestions. Thank you! I will add those items to my regimen. Wow 250 oz! Just wow

  • Joyce65
    Joyce65 Member Posts: 30

    Hi all,

    Happy to report that Round 3 was the easiest so far. Very little queasiness, limited bone pain and energy returned at day 8 which was quicker than previously. Hopefully my body is more adept at handling all this, and now I have a routine. I tend to drink approximately 90 ounces of water daily for the first week along with ginger tea, ginger ale, etc. 250 ounces sounds like overkill, but whatever works for you. I'm finding I can exercise during the second week after treatment, not as aggressive as pre-chemo, but still fairly vigorous.

    I must admit that my taste buds are not working well -- sweet yes, but the rest, not much flavor. I make myself eat, but really have limited interest. I find protein shakes at lunch are a big help.

    Sending positive vibes to everyone on the CMF path!


  • Ihatechemo
    Ihatechemo Member Posts: 22

    Hi Everyone,

    I completed Round 4 on 4/9. I have had such strange food cravings for salt and carbs and sugar. I made a HUGE mistake of eating a fried fish sandwich (with hot cocktail sauce) on Friday. It tasted sooo delicious but it took until today for my stomach to recover!! NOT doing that again. Back to my healthy soups, fruits and vegetables.

    My hair thinning has continued although it has greatly slowed since Round 2. No need for the wig yet, but it gets more difficult to manage. I'm still hoping enough stays until the end. So strange though, I noticed some hair has actually grown on my legs.

    I hope everyone is having a good day. Thank you for being there!

  • RiRi11
    RiRi11 Member Posts: 70

    Ihatechemo_ I always craved a cheese calzone on day 4 of my treatments! Hang in there, you will feel like yourself again.... 7 months since my last treatment and I finally feel like my hair looks thick again :)

  • Joyce65
    Joyce65 Member Posts: 30

    Hi Ihatechemo

    Congrats on finishing #4, I head in tomorrow for my 4th. I too am craving salty, sweet and carbs which are things I never normally eat. How strange. My whole goal is just to eat something healthy, but so little appeals!

    Have a good day!


  • 2002chickadee
    2002chickadee Member Posts: 79

    Hi all, congrats on being done with #4! Does that put you halfway through? Cause for celebrating. I found miso could satisfy my salty craving in a more healthy way -- miso soup! miso dressing! etc.

  • LaurieDPT
    LaurieDPT Member Posts: 15

    cheering for you I hate chemo and Joyce 65 ! I appreciate your sharing your experiences because you are a little farther down the road than I am. It is particularly encouraging that your round three was less difficult. Everyone’s experiences are different and it is good to know it can get easier.

    Ditto the weird food cravings. I ate a red velvet cupcake with 2 inch high cream cheese frosting yesterday. I can’t do that normally. So much frosting. UGH... Loved every bite :-)

    I cleaned all the hair out of the shower drain yesterday and cried. No one but my hairdresser and I can tell. Keeping my fingers crossed