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CMF Question

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Comments

  • mandy1313
    mandy1313 Member Posts: 978
    edited September 2010

    Cabmom: What wonderful news!

  • ritajean
    ritajean Member Posts: 4,042
    edited September 2010

    WOO-HOO!  Wonderful news, cabmom!  Breathe in.  Breathe out, and go and enjoy your weekend!  I am SO happy!!!

  • DesignerMom
    DesignerMom Member Posts: 730
    edited September 2010
    cabmom-I'm doing the happy dance for you!
  • MaryNY
    MaryNY Member Posts: 486
    edited September 2010

    Great news Cabmom. One positive thing about this experience is now you really know that your onc is vigilant and will follow up if anything changes. This is a good thing.

  • Beanius
    Beanius Member Posts: 1,494
    edited September 2010

    Mom2acat - I haven't heard of Vinblastine, you posted you started on the 7th and I am so hoping it's going okay for you and you will have great results!!!

    DesignerMom - Big congratulations on finishing # 5 - you are so close to through with chemo!! Way to go!!! I'm sorry your blood counts were down, so be extra careful with places you could get exposed to infection (I'm sure you know...but raw veggies and things like that could be a problem with low white counts). I have almost finished #3 and definitely notice the fatigue grows with time. I've still been able to do most of what I normally do, but I have to stop for naps. I'm sorry you are shedding and wish I knew what to tell you. I notice more shedding too, but it is not noticeable to others. If it's only noticeable to you I wouldn't sweat it. You just have one more treatment and it will start regrowing after that. My blood counts have been okay so I don't have any advice on that either, glad others do!! Hang in there my sweet friend, you are almost there!!!

    Cabmom - I'm so happy for you!! That is great news!!!

    You are all in my prayers every day! Wishing you all the very best!!!

  • Drim
    Drim Member Posts: 134
    edited September 2010

    Hi Ladies,

    I have a hair question. I did TC x 4 and finished in July 2010. I also did the Penguin Cold Caps so I did not lose my hair but my hair is fragile and a little dry so I still need to be pretty careful with it. I also have LOTS of gray hair and I would very much like to color it but I'm scared to use any harsh chemicals - or really any chemicals at all.

    I know that on CMF you keep your hair. I was wondering if there were any hair rules that you follow during/after chemo to make sure you don't lose it afterwards.

    Thanks! 

  • mandy1313
    mandy1313 Member Posts: 978
    edited September 2010

    Drim: Thanks for answering my question---Penguin Cold Caps do work. Did you get yours on your own or did your cancer center offer them to you?

    I was very careful with my hair during chemo and for about a week after....only washed it every 3 days and used very gentle shampoos/conditioners, did not blow dry it etc.  I don't know it that applies to you since the chemo has finished and in a few weeks will be out of your system. Ritajean had a special shampoo that she suggested and which I used during chemo (but don't remember the name now). And after that I used a gentle shampoo from EO. (essential oils, marin california)

  • Drim
    Drim Member Posts: 134
    edited September 2010

    Hi Mandy and thanks - yes, they worked great in saving my hair. It is definitely a difficult process and there are a lot of strict rules. I used to be a daily hair washer and I've only been washing my hair 2x a week since the beginning of May. Due to the drying effect of chemo my scalp did not get oily so it wasn't that big a deal. I had to wash my hair in tepid water, I used sulfate free shampoo and no heat or styling products at all. Conditioner had to be kept away from my scalp.

    Even with all of those rules it was well worth it. If I didn't have gray hair everything would be perfect but I have a ton of it so I really need to color it and people are waiting 6 mo. after chemo to do so. I'm not sure how much longer I can take this. I've been 'painting' on temporary stuff but it takes a lot of time, it doesn't work great and it's expensive. I've been doing research and there doesn't seem to be anything that safe out there that actually would work. Maybe I'll wait another month or so and then try demi-permanent.

  • Beanius
    Beanius Member Posts: 1,494
    edited September 2010

    Drim - Congratulations on finishing chemo and keeping your hair!! I had read about the Penguin cold caps. I tried Nioxin shampoo which I ordered from Amazon, however, I didn't care for it because it made my head tingle. I'm doing what Mandy described, messing with it very little and using very gentle products, I'm half way through and have my hair. As for coloring the gray, I can understand your frustration. I don't have an answer but I bet others on here will. I would be inclinded to wait. Best wishes to you and once again congratulations!!!

  • Drim
    Drim Member Posts: 134
    edited September 2010
    Thanks so much Beanius! I remember that you were almost in my May chemo group but had a delay. Great to see that your onco score was a 6. I hope you are feeling well. I think you are right. As much as I would love to do something about the gray I need to wait a while still. 9 weeks PFC and counting Smile!
  • DesignerMom
    DesignerMom Member Posts: 730
    edited September 2010
    Drim-  Great to hear you are doing so well!  Like the other ladies, I am using a very gentle, unscented Omega 3 hemp shampoo every other day and no  hair dryer.  So far, so good, some shedding, but probably I'm the only one who notices.  I saw on the "natural girls" thread that some  of those ladies use henna to color as it doesn't have all the chemicals etc...  One lady used a mahogony color on her dark brown hair and it looked like highlights.  She said to definitely use the pre-mixed creme henna or you would be washing grit  out forever.  Maybe do a test in a small area?  Hope rads are going well! 
  • Beanius
    Beanius Member Posts: 1,494
    edited September 2010

    Hi Drim - Yes, I was supposed to start in May but there were so many delays! I remember you too! Then I moved to the June group, had more delays, then started finally in July. It's so nice to see you got through, with hair! on now on to rads. There is really light at the end of the tunnel!! Thanks for the well wishes, I'm doing quite well, considering all!! I think DesignerMom has a great idea (as usual) maybe henna would be a temporary way to go.

    DesignerMom- Great idea (as usual)!!

    My prayers are with you all! Hope you have a great week!!! XXXOOO

  • codavis
    codavis Member Posts: 48
    edited September 2010

    It's been a long 6 months. Three months ago, I started having side effects and wondered if I'd ever get through my CMF treatments. I'm happy to say that I did it! I had my last infusion yesterday and will finish my Cytoxin pills on Tuesday. Woo hoo! Then I get a month off before strating Tamoxifin.

     Regarding hair, I have a ton and I did lose a bunch but no one noticed other than me and my stylist. I didn't change my routine at all--I wash every other day and blow dry it. I use Aveda Rosemary Mint shampoo and conditioner. The only thing I noticed other than the shedding was occasional sores on my scalp. Just small little bumps that hurt if I scratched them--no big deal.

    I hope that everyone is doing well and having a good weekend. 

  • ritajean
    ritajean Member Posts: 4,042
    edited September 2010

    Codavis...........YEA!  No more CMF transfusions!  Way to go, gal!  You did it!

  • mandy1313
    mandy1313 Member Posts: 978
    edited September 2010

    Codavis-----YAY!!!! You have done it!!!!

  • codavis
    codavis Member Posts: 48
    edited September 2010

    ritajean and Mandy1313: Thank you.

     I'm so glad to be done and ready to move on to the next stage of my treatment.

     Unfortunately, I've developed mouth sores in the last two weeks. Can you remind me what you use for rinsing your mouth? Thanks.

  • mandy1313
    mandy1313 Member Posts: 978
    edited September 2010

    Hi Codavis!

    I never had bad mouth sores---I had acupuncture throughout my chemo and that kept them away (apparently there is a study that shows that, but I just had the acupuncture to deal with my general chemo exhaustion).  I don't know whether acupuncture might give you some after the fact relief, but if nothing else works, it might be worth a try.

    As for mouth rinses, many have found Biotine mouthwash to be good for keeping your mouth moist. I did not like it and just used salt water (but that might hurt with your mouth sores).  There is a prescription mouth wash that alot of people get from their oncs for sores---it is referred to as "magic mouth wash", and your onc will know about it and have his/her own version that you can use.  It should give you relief and help clear up the sores.

    All the best.

    Mandy

  • ritajean
    ritajean Member Posts: 4,042
    edited September 2010

    codavis...........go to the drugstore or Wal-Mart and purchase Lysine.  It is a natural supplement that takes care of the mouth sores once they develop.  Take four (500 milligram) or two (1,000 milligram tablets) with water as soon as you get them.  Take an additional 1,000 milligrams about 6 hours later.  Then continue to take 2 tablets a day until they are gone.  They should be gone in just a couple of days.  Many people take a tablet a day to prevent them, too.

    Rita

  • ana
    ana Member Posts: 3
    edited September 2010

    hello ladies,

    I got my #3 CMF 2 weeks ago and still not doing well in term of leg pain.  I have neuropathy from may be compression fracture in 2007 or as side effect of one of my chemos, probably Navebline.

    It is very bad leg pain, pullling like feeling, pain usually getting worse at night and it is just bad.  I don't know what to do.  I take sleeping pill, pain pills with no help.  I am considering to start massage and acupuncture.  Do you think that it can be connected to CMF?  what can I do to help myself with pain/neuropathy?

  • mandy1313
    mandy1313 Member Posts: 978
    edited September 2010

    Hi Ana!

    I don't know what is causing your severe leg pains and I'd say check with your onc before you listen to me.  Your onc may have a better idea about pain management than I do.  

    I developed severe shin and knee pains towards the end of my CMF treatments---they would wake me up during the night and if I sat down, I could not straighten my legs when I stood up; I could hardly stand on my feet due to neuropathy.   I found that acupuncture did give me relief from the pain. But I went for acupuncture once a week for general chemo side effects. Also, my leg/foot pains  became less severe in the months after the chemo.  

    Hope that you feel better.

    Mandy

  • socallisa
    socallisa Member Posts: 10,184
    edited September 2010

    Hi there...I too have/had neuropathy and take Lyrica

    for that...it really helps..also acupunture

  • ana
    ana Member Posts: 3
    edited September 2010

    thank you so much for respond, I definitely will recheck with my onc, it is probably neuropathy which is getting worse with chemo

    I will do acupuncture for sure and ask onc give me Lyrica instead of neurontin.

    thank and god bless you.

  • poohbear21
    poohbear21 Member Posts: 23
    edited September 2010

    Hello Ladies. Hope everyone is doing well.

    I am wrapping up my last cycle of CMF next week. I can't wait to be done, just before my birthday too :)  Best present ever!!! Then on to rads for 5 weeks.

    I was wondering when does the hair shedding stop? And when did you all start to color you hair again? 

    Would love some input.

    Thanks Ladies :)

  • mom2acat
    mom2acat Member Posts: 87
    edited September 2010

    I finished CMF in August, but now I am on Vinblastine (also called Velban) which also causes hair shedding, so mine is still coming out.

    Congrats on almost being done Poohbear, that is wonderful birthday present!

  • ritajean
    ritajean Member Posts: 4,042
    edited September 2010

    Wow poohbear.........you're just about done with the chemo!  Yea!!!!  I think your hair should stop shedding any time now.  Actually I think mine stopped shedding after the fourth treatment, but everyone is different.  Also, I can't tell you when you can color your hair as I had mine colored all the way through the treatments and had no problems.

    You're getting to the end of the tunnel!  Rads are a pain because you have to show up everyday but for me they were so much easier than the chemo!

    Hugs to you!

    Rita

  • DesignerMom
    DesignerMom Member Posts: 730
    edited September 2010
    ritajean-  You rebel you!  Coloring your hair throughout chemo!  Okay, that does it.  I saw a demo for some all natural henna hair color (guaranteed to cover gray) at Whole Foods.  I'm going to get a golden blonde shade (who knew it came in so many colors!).  Hopefully when I put it on my brown hair, it will just color the grays and look like highlights.  Friday is my last chemo, as long as my counts are up (please God!!)  Then on to Rads.  I feel like I'm heading for the finish line now.  You ladies have been so encouraging and helpful!
  • codavis
    codavis Member Posts: 48
    edited September 2010

    hi everyone. Thanks for the tips on mouth sores. My onc wrote me a prescription because by Monday the whole right side of my tongue was covered with them--it looked like I'd been biting my tongue! Much better now and I'm able to eat more. I guess I should count myself lucky that I didn't have them all through my 6 months of treatment, but it's weird to get them after I finished. Just glad it's over!

  • cabmom
    cabmom Member Posts: 291
    edited September 2010

    codavis....Yeah, so happy to hear that you're though!

  • DesignerMom
    DesignerMom Member Posts: 730
    edited September 2010

    I am doing my own little happy dance as I FINISHED CHEMO TODAY! It has been a looooong 18 weeks, but I did it, I did it...I can't believe I did it! All you wonderful, encouraging friends have certainly helped. Next it's on to rads. For now, I am going to chemo crash one last time.

  • mandy1313
    mandy1313 Member Posts: 978
    edited August 2013

    Designer Mom:  Yay!  You have finished chemo! Rads will be a piece of cake after chemo.  Take care.

    Poohbear, you are almost there too!

    Cyber hugs.

    Mandy

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