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CMF Question

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Comments

  • SueH58
    SueH58 Member Posts: 106
    edited December 2015

    Lisa,

    Congrats on 15 years out! Wondering if you made any major changes to yoru lifestyle since your BC, i.e. food, alcohol, weight loss, exercise, etc.

    I'm sure hoping I will following in your footsteps!

    Sue

  • socallisa
    socallisa Member Posts: 10,184
    edited December 2015

    Hi back to you, Rita good to see you too ❤❤

    Sue, I did stop drinking alcohol, but that was because of liver damage. I try to get exercise ,but that has been interrupted by injuries. Best of luck to you.

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2015

    Sue, I have made several changes to my diet since my bc journey. Like SoCal, I drink very little alcohol. I have a drink every once in a while when celebrating something special, but I try to stay away from alcohol for the most part. I love wine and Dave and I loved wine tasting at new wineries so it's not been as easy for me as I'd hoped. Also, I have cut out most refined sugar from my diet. After I got through with the chemo my body was really out of sync. I went to a naturalist/holistic medicine doctor and he helped me get back into balance through supplements and an exercise program. Now I don't take any supplements except for a probiotic. Anyway, he claims that research shows that refined sugar serves as food and fuel for cancer cells. I use Stevia instead of sugar and I must admit that I feel much better.

    I no longer do all the exercises that he suggested. I bowl and golf and will do alot of walking while we are in Florida so I stay pretty active. I wouldn't do too much different until you are through with all the treatments. Then you might want to research this area more. There is a book called "Anti Cancer: A New Way of Life" by David Servan-Schreiber, MD, PhD that gave many good suggestions for making your body more resistant to cancer cells. I found it in our local library and have checked it out a couple of tmes....interesting reading that gave me some things to ponder.


  • Wenrisa
    Wenrisa Member Posts: 59
    edited December 2015

    ritajean - I am reading that book now! Trying to be and eat healthier during chemo. I've gotten a lot of good info from this book

  • socallisa
    socallisa Member Posts: 10,184
    edited December 2015

    If you can get a hold on Dr. Kaelin's Breast Cancer Survivor's Fitness Plan, from Harvard Medical School, it is a great book.If you turn to Chapter 5, there I am..look for Liz and page 25 to 27...

  • windward
    windward Member Posts: 57
    edited December 2015

    Thanks for your wise words SoCalLisa. I take water therapy classes twice a week and had decided that warm water is an incubator for bacteria, chlorine not withstanding. So your admonition reinforces my decision. Only chance of me digging in earth where I live is re-potting a plant. Do you think that counts or just out of doors?

    People on the board are talking about drinking, or not. Is there an injunction against alcohol while on chemo? I haven't had any, but just wondering.

    Had a tooth pulled today , but I had to have blood work done and get clearance from MO. before it could be approved. It worked out, and I was not even in the

    " window of opportunity" between day 14 and 21. I am on a 21 day cycle of infusions. So am finding out that things that seem to not be " allowed" can be worked out. More wiggle space.

    Wenrisa , good luck on your upcoming #2 infusion. Hope you and the MO have developed a plan to eliminate the SE you had the first time!


    Windward


  • Wenrisa
    Wenrisa Member Posts: 59
    edited December 2015

    thank you windward! #2 is on Thursday. I have to follow up with MO tomorrow to see if we can get the patch as an option for anti-nausea and refill my Ativan. Hopefully those options will get me through this weekend!

    I'm glad to hear your dental work was able to be done! And you are doing well

  • socallisa
    socallisa Member Posts: 10,184
    edited December 2015

    The advise about alcohol with CMF is that the M, methotrexate, is especially toxic to the liver as is alcohol, so you run the risk of more liver toxicity than is already there in the treatment. I was told no drinking while on this chemo. Don't know about the other types. I didn't drink and still had liver damage so my advise is strong on this during the whole CMF treatment program.


  • ml143333
    ml143333 Member Posts: 190
    edited December 2015

    I'm not much of a drinker, so not having alcohol isn't a big deal for me but my MO told me the same as SoCalLisa - no alcohol during chemo, but others may have gotten different information.

    During chemo, I wouldn't change your diet much because you need to be able to eat what you feel you can eat.  After chemo, I would look to make dietary changes.  Just do your research and talk with your MO.  I know my MO's office has a registered nutritionist and dietician on staff.  It might do you good to talk with one.

    If you can exercise during chemo - go for it!  If not, you need to get on that exercise bandwagon before you start AIs or Tamoxifen if you will take them.

  • ritajean
    ritajean Member Posts: 4,042
    edited December 2015

    I took lots of walks while doing chemo and the activity always made me feel so much better and more energetic.

  • Wenrisa
    Wenrisa Member Posts: 59
    edited December 2015

    had my 2nd treatment today. So far so good. Got the sancuso patch to wear for 7 days to help with nausea. I can also still take the Compazine for breakthrough nausea and I also got another prescription for Ativan which also helps the nausea so I think I'm all set. I have the nuelasta pod so I started my Claritin too. Hopefully I'm all set.

    I got to meet with the nutritionist today during my treatment. She gave me a lot of good information. I also met with the ACSrep AND I got to meet the cutest therapy dog

    Good luck to those having their 1st (or 2nd or 3rd) treatment in the coming days! Best wishes to you!

  • ml143333
    ml143333 Member Posts: 190
    edited December 2015

    Hoping all will be well with you Wenrisa!

  • windward
    windward Member Posts: 57
    edited December 2015

    Wenrisa, So glad to hear that all was going well for your second infusion, so far. Sounds like you and your MO have worked out a good plan and contingency plans.Hoping this infusion experience continues to work out well, so that you feel well enough to focus on getting ready for the holidays. Will be thinking of you.




  • ritajean
    ritajean Member Posts: 4,042
    edited December 2015

    Hoping you gals in chemo or rads have a good couple of weeks so that you will be able to enjoy the holidays. Hugs!

  • Wenrisa
    Wenrisa Member Posts: 59
    edited December 2015

    so finished CMF #2 on Thursday. Not too bad... I got the sancuso patch so while I was still down for the count over the weekend the nausea wasso much l less. If history repeats itself I'll feel almost back to normal tomorrow. I did do a bunch of holiday stuff today but now I'm wiped out. A friend ordered some of my groceries for me and will drop them off later. I'm very lucky for the friends and family I have. Happy holidays to all of you! Hope you are feeling well

  • ml143333
    ml143333 Member Posts: 190
    edited December 2015

    Wenrisa - glad you are done with infusion #2!  Hoping you have a great Christmas!

  • windward
    windward Member Posts: 57
    edited December 2015

    Wenrisa, Good to hear that the plan you and MO worked out for this second infusion provided decent relief from the nausea, and that you felt well ( safe?) enough after the first few days to push yourself to do holiday things, even if you were wiped out. Hope you were right about feeling back to normal by day 5.

    VeryBest wishes for happy and enjoyable holiday in the company of those you love to you , and all the wonderful women on this message board who take the time to offer support, advice, and caring companionship to those of us just starting out on this "journey".

    Windward

  • Wenrisa
    Wenrisa Member Posts: 59
    edited December 2015

    ok CMF comrades... I have a hair question. What is happening with yours?

    I came to terms with losing my hair when I found out I had to have chemo. But then when I found out that that CMF usually just causes thinning I put it to the back of my mind. But now a week after infusion #2 I feel like a lot is falling out and I'm not prepared. Logistically not emotionally... If I lose a bunch I have no hats, scarves or wigs... Maybe I am overreacting. Just wondering what others are seeing..

  • windward
    windward Member Posts: 57
    edited December 2015


    Hi Wenrisa

    As much as yout think you are prepared to deal with loss of hair, whether in clumps, or what seems like endless shedding it can be very upsettiing. I think it is a process of dealing with the loss of the way you have presented to the world, and having to consider a new way of looking. For some women it can be an opprtunity to take an active role and get a new shorter hair style , rather than sit by anxiously / helplesssly while hair sheds, more or less


    But you will probaby receive all kinds of advice and suggestions about hair loss and coverings from those who have started their chemo journey before us. And the personal advice and experiences of others has been so helpful.

    Even tbough I am cold capping i have noticed shedding of my bangs, which havd become a bit sparse as dos happen as one gets older.. way older than you.

    I have been advise by my Cold Cap person to look into a product/ process called TOPPIK. A friend of mine, not on chemo raves about it it,

    I also found this list of rescourse on this Board under another topic heading, Some of it might be of help, and you can always ask your CMF sisters about their experiences..

    For those of us facing hair loss:

    http://www.4women.com

    http://www.sparklingearth.com/products.asp?categor...
    http://www.bandanas.net/skullbest.htm
    http://www.myskullcaps.com/
    http://www.sungrubbies.com

    Pointers on tying scarves: http://www.coveryourhair.com/HowToTieTiechels.html
    http://www.tznius.com/ This has more extensive scarf tying instructions (click on link in nav bar or at the bottom of the home page).
    - You Tube: search "how to tie head wraps." The video is by galaxyswurl.

    Cheap synthetic wigs: http://123wigs.com/wigstore/
    More expensive wigs: http://www.paulayoung.com/

    Inexpensive synthetic wigs may be available on ebay.

    --=============

    Had my second infusion yesterday, and learned my neutrophil count, like yours is way down which I have added neurolasta to my list of medicines that help but with side effects. I have a little gadget taped to my abdomen scheduled to start bleeping just as we sit down to xmas dinner!!! It is an automatic self injection, supposed to take 45 minute complete. I was told take Claritin after infusion yesterday, today before the gadget goes off.How did you tolerate the Neulasta side effects. Did you have to take it again for your second infusion ?

    I hope you have recovered enough from Thusday # 2 to be able to eat with some pleasure, all the foods on your families Holiday dinner, and have enough energy to enjoy , and participate without pushing yourself too hard. Listen your body., rest when it tells you need to rest.

    Hugs,

    Windward




  • Wenrisa
    Wenrisa Member Posts: 59
    edited December 2015

    Happy New Year to you all! How are you all doing? This board has been quiet lately. I just had my 3rd infusion today. All went well as usual. Using the sancuso patch for nausea again as it worked better than the Zofran the first time. And I get the neulasta pod again. Just relaxing and dealing with side effects for the next 4-5 days... Usually then I start to feel more normal.

    Windward thanks for you info! I ended up cutting my hair short because I couldn't stand it shedding around the house. Hardly any fell out when i washed my hair today so I feel better about it.

    Good luck and happy new year

  • mandy1313
    mandy1313 Member Posts: 978
    edited December 2015

    Wishing my sisters on this thread a 2016 of health, happiness and peace.

    Hugs.

    Mandy1313

  • SueH58
    SueH58 Member Posts: 106
    edited January 2016

    Happy New Year, y'all. Hoping for a healthy 2016 for all of us!!!

  • windward
    windward Member Posts: 57
    edited January 2016

    A Healthy 2016 for us all, good results for those of us still going through the hoops, and an a year of only good news for everyone else. I am one week out of my second infusion, and despite the cold caps I am shedding. I never measured the length of the hair I normally shed during the year, but now I notice how many short hairs are turning up in food I prepare!, and coat colors etc. I feel sad to lose them, as though they are vulnerable little strands of hair that can't protect themselves.

    I console myself that I might have been one of the women who lost lots and lots of hair if not for the cold capping. Who knows, and never will.

    On Thursday, was totally blindsided by a sudden sharp and then throbbing pain on right side of back. As if I had pulled a muscle, only I was sitting in a comfortable chair and had not moved. No position was comfortable. Realized it must be a kidney thing. I was at work so in between appointments I connected via email with clinical coordinator of medical oncology, and though the breast center closed early ( it was new years eve, of course) I was able to get there in time for urine and blood tests

    ( Found out among other things that the Neulasta did increase Neutrophils , somewhat, so that is good) . Long story short , I was having a UTI, started on Cipro and was told I could take Motrin or Ibuprofen for the kidney pain.. which was about the worst pain I have experienced. The Ibuprofen took the pain away in 23 minutes, and after two days it has not returned. No other additional symptoms to indicate anything worse was going on. What a total surprise. Now I see what they mean when they say, vulnerable to infections. All is well now, will probably hear more from the MO on Monday, once the report of the full culture is in.

    Never a dull moment.







  • Wenrisa
    Wenrisa Member Posts: 59
    edited January 2016

    windward - sorry to hear of the uti! I'm glad you were able to quickly see someone for it.I know they say the c in CMF can cause bladder issues right?

    You doing ok otherwise?

    I'm here 3 days out from infusion #3. Overall I'm ok I guess but I still deal with a couple days of nausea which sucks. And then now I got my period! I haven't had it in years because I had an iud but now it decides it a good time to show up. Hopefully tomorrow is a new and better day for all

  • SueH58
    SueH58 Member Posts: 106
    edited January 2016

    Wow, Weinrisa- you are flying through your treatments! Do you have 6 total???

    Windward - I had one or two UTIs while on CMF as well. Also, quickly resolved with Cipro.

    Hope you guys are hanging in there. Seems you are having minimal SEs - so glad for you!!!

  • Wenrisa
    Wenrisa Member Posts: 59
    edited January 2016

    hi sue - I am scheduled for 8 CMF treatments but they are every other week instead of every 3 weeks. It's getting tough. I just don't feel well for about a week and then after an ok week I am back at it. I kinda wanna say screw it, tell the mo I'm only doing 4 treatments and getting on with everything else so I can go back to some idea of a normal life... I'm exhausted, can barely eat anything cuz I feel sick and I'm sore from the neulasta, from getting my period!, and from laying around cuz I have no energy. Urg! Not a good few days here to put me in this mood. Plus my scalp is killing me and my hair is falling out kinda a lot. I cut it reallyshort to deal with it better...

  • windward
    windward Member Posts: 57
    edited January 2016

    Dear Wenrisa,

    I am so sorry you are having a bad time, and it sounds like you are getting battered left and right by the cumulative effects of the infusions.

    My diagnostic profile is not too different from yours, I even am triple negative, and I am getting infused every 3 weeks . I know that younger women are treated more aggressively than old ones, but , you are getting a very, very aggressive course of treatment . Perhaps talk to your MO about any downside of getting infused every 3 weeks, and the need for more time to recover. Also have you spoken to the MO about trying some other meds for the nausea? Do you have a good , collaborative relationship with your MO so that you are comfortable complaining and asking for more help? I hope so. Get on that phone, or text device!

    Hope tomorrow is a much better day, and the next day a really good one. But even so, be in touch with your MO!



  • ml143333
    ml143333 Member Posts: 190
    edited January 2016

    Windward and Wenrise - I hope you two will continue with your treatments and continue to get better.  Once your treatments are over, your bodies will slowly come back and you will have more energy and do more of the things you used to do.  It will take a bit for your stomachs to get back to normal, but it will happen.

  • mandy1313
    mandy1313 Member Posts: 978
    edited January 2016

    Wenrisa, don't be discouraged. I agree that you might ask your onc whether you could have your infusions every three weeks if it is simply unbearable for you. But even in the UK where they generally use less chemo, they give 6 tx of cmf so try to keep going. I looked back at some notes I wrote (and I was on the every 3 weeks X 8 tx) and I saw that after my second treatment, I wrote to a friend and complained that I had no energy I know that I went for acupuncture which improved my energy and reduced some side effects (my onc approved of that). Why don't you ask your onc if they'd agree to your having some acupuncture treatments? And for hair--I shed alot but I never actually lost all of my hair; After my 4th tx, I lost a lot of hair and had scalp tingling...my onc did not even know whether I'd lose my hair---but in the end, I was lucky. and the hair shedding pretty much stopped. Like you I cut my hair short which made it easier to manage. When your tx is finished, your energy will return and any hair that you have lost should come back too. So hang in there and don't be too discouraged! And come here to complain as many times as you want...we are here to listen. Hugzz.

  • Wenrisa
    Wenrisa Member Posts: 59
    edited January 2016

    Thanks Mandy1313! It's so much easier to deal with when you aren't in the throes of discomfort. We do have accupuncture available to us here through the hospital so maybe I'll try that. It's just so hard to have almost a week of hardly being able to eat anything and then an ok week and then it starts all over again. Maybe every three weeks would fix that, only problem is I just really want it to be over with and that would drag it out further... Thanks for listening to my complaining

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