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CMF Question

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Comments

  • Wenrisa
    Wenrisa Member Posts: 59
    edited February 2016

    now my daughter has a stomach virus... I'm so hoping I don't get it

  • windward
    windward Member Posts: 57
    edited February 2016

    Wenrisa,

    Fingers crossed you can avoid the stomach virus. You certainly don't need any more assaults to your GI system, especially spoiling your week of relief between infusions.BUT, at the very first sign of any discomfort, call your MO and get some meds and advice immediately. Don't wait!! Even if it turns out to be nothing.

    Good luck!

    Windward

  • Wenrisa
    Wenrisa Member Posts: 59
    edited February 2016

    too late! I got it... I've called the mo twice but they don't have many suggestions for me. Other than stay hydrated and call if I get a fever. I'm totally dehydrated though and feel so sick even water is a struggle. I might just go to the ER..

  • mandy1313
    mandy1313 Member Posts: 978
    edited February 2016

    Wenrisa,

    have you tried ginger ale or a lemon flavored drink. I could not drink water for most of my chemo--it nauseated me. I had good luck with gnger beer (which is not beer but a strong ginger ale) and lemonate which is san pelligrino's lemon flavorted soda...if those fail and If you are dehydrated, do go to the ER and don't be embarressed. Your immunity is somewhat down and you should take care of yourself. Sendin you a big hug.


    mandy 1313


  • SueH58
    SueH58 Member Posts: 106
    edited February 2016

    Wenrisa - I found lemon seltzer to be so refreshing. In fact, it is still my favorite beverage (prior to this was diet coke and fresca).

  • SueH58
    SueH58 Member Posts: 106
    edited February 2016

    Hi guys

    Here's a picture of the rebuilt bracelet. I hope y'all like it.

    I'm going to enjoy it for a week or two and then it's on its way to KSusan.


    image

  • SueH58
    SueH58 Member Posts: 106
    edited February 2016

    Sorry, CMFers. Posted the bracelet to the wrong board...

  • ml143333
    ml143333 Member Posts: 190
    edited February 2016

    Wenrisa - how are you feeling? Did you need to go to the ER for fluids? Please let us know how you are doing.

  • Wenrisa
    Wenrisa Member Posts: 59
    edited February 2016

    hey! I did go to the ER and got fluids, some pain and antinausea pills. Felt much better. Chemo was moved to next week to give me time to fully recover..

  • mandy1313
    mandy1313 Member Posts: 978
    edited February 2016

    Hi Wenrisa,

    I was just wondering how you were doing. Thanks so much for taking the time to post. I am glad that you were able to get some help at the ER. I had a chemo postponed and I was on the 3 week cycle; I was so relieved that I'd get time to recuperate before the next chemo.

    Take care of yourself and when you have the time, let us know how you are doing.

    Hugs,

    Mandy1313

  • mircann
    mircann Member Posts: 11
    edited February 2016

    Thanks ladies...for your support.;;"Just know not every bump post treatment might not mean cancer".....Wenrisa sorry its been such a wild ride...glad you got more antinausea meds...I had to postpone chemo a few times too..once to fly back East to see a terminally ill family member and because I had strep throat after my mastectomy...the pre and post period before my mascectomy..I had horrid mouth sores and had whitel blood counts so low they had to almost put me on that drug to boost your immune system...Nutrogen? forget the name.... just keep in constant contact with your clinics nurses and Oncologist that's what they are there for...hang in there....

  • windward
    windward Member Posts: 57
    edited February 2016
    Hi Wenrisa,


    What a bummer, to be deprived of your "recovery" week by a stomach virus. I have to say I am disappointed in your MO, who only seems interested in taking an active interest if you get an infection. At least you had the good sense and got CMF sisters support to go to the ER, and their they knew how to help you feel better. Maybe the anti-nausea pills from ER will be more helpful than what you get from MO? Good that you have a weeks reprieve. Interesting that so many people who post on this Board have had various detours and delays in the course of their treatment., and it seems to come out okay.
    Hope you are feeling better and having a comfortable week.

    I have a couple of weeks before the radiation phase begins.
    Once it starts ( daily for 28 days) will be glad to hear any helpful hints. I asked about the chance of having a higher dose for shorter period of time, there is a name for this kind of radiation. But since I had chemo, and this procedure is higher doses of radiation it is very hard on ordinary skin, chemo already compromises skin, I am disqualified! So, it will just have to be 28 days.
    Wenrisa, Good luck on the SE of next infusion,
  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Hi ladies. I was dx in Septmeber 2015 and reaffirmed in November that I was HER2 positive er/pr negative. Grade 3+. I am doing my treatments at the University of Michigan and my oncologist recommended I consider participating in a trial program. Therefore some additional testing was done this month on the tumor by the Dana/Farber group in order for me to participate in their trial. They performed 2 separate (Fish) one on my biopsy and one on the lumpectomy and both reported the cancer as equivocal or 2+. Mayo Clinic, who performed the lumpectomy, also tested it (Fish) and found it to be TN. So based on the three different pathologies it is determined I should be treated as HER2 positive and HER2 negative. I have elected to go with the GMF Regimen because I am early stage and I want less toxicity and a regimen that would be better tolerated than AC or TC. I also have made arrangements for the use of cold caps during treatments. I have very thin hair so losing 25-50% of it would be a disaster. Question: Has anyone had Herceptin in conjunction with CMF? And for those who have complemented this regimen of CMF are you glad you chose it?

    Thank you.

  • SueH58
    SueH58 Member Posts: 106
    edited February 2016

    Hi Tuboss. Sorry to hear of your dx. I was diagnosed at this exact time last year. I was early stage as well, had an oncotype of 20 (low intermediate) so also had a Mammaprint test which came back high risk. So, to have chemo or not. I decided to do so, and because I was questionable, chose CMF as it was less toxic and more tolerable than the other choices. I was glad I had chemo, and that I chose CMF. I had very few side effects other than fatigue, which is just a given.

    Best of luck to you!

    Sue

  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Hi SueH58,

    Thank you for your reply. It's good to hear you are doing well and did well on the Chemo. Can I ask how many treatments did you have and did you keep your hair?

    Thank you.

  • SueH58
    SueH58 Member Posts: 106
    edited February 2016

    I had 6 treatments, and lost about 1/3 of my hair. I know it thinned, but it really wasn't obvious to others. Now that it is growing back, it's obvious how much was lost.

  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016
    I wish my hair was thicker. If it was I wouldn't feel the need to use the cold caps and that would save a lot of bother and money. Thanks for sharing with me.
  • ml143333
    ml143333 Member Posts: 190
    edited February 2016

    Tuboss - I am sorry to hear of your diagnosis, but glad you came to a good group for answers and support. My choice to take CMF was a good one for me as I worked full time throughout. Nausea was at a minimum. Fatigue was definitely there but will be with any treatment. I did lose some hair for sure, but it wasn't noticeable to anyone but me and my hairdresser. I didn't experience any other side effects except weight gain from the steroids.

  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Thank you for your response Mandy,

    That is good news about your experience with side effects. It is encouraging. Did you choose this regimen or did your oncologist make the recommendation? How many treatments did you have? I'm curious as to how much weight gain experience during chemo and whether you were able to loose it after treatments?

    I'm sorry to have so many questions! I was able to find so many answers to my questions when I was DX as Her2 Positive and all the treatments used for that, but I haven't found many who have used CMF much less CMF with Herceptin. I am so appreciative of groups like this who have ladies that stay on and help newbies through the process.

    Trisha

  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Question to you alumni sisters..Can I get some feedback on hair care? I'm 57, graying with long, very thin and very fine hair. Haven't started treatment yet and leaning toward cold caps. If I brave it and don't use the caps, I was wondering what hair protocol you do on CMF. Can you cut and color? How often can you wash it, blow dry it etc. Seems like I hear and read hair loss is somewhere between 25-50% on CMF. I'm doing 8 treatments so I have even given it thought of doing some cold cap in the beginning but not at the end. Any answers or thoughts?

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

    Tuboss.. So sorry that you are having to make this journey but I'm glad that you found us. Thre are many good women on this site that will help you through it with their continuous support.

    I did CMF chemo in 2007 and am so glad that I did it. I decided to do CMF because I was also Grade 3. At that time, they did 6 infusions spaced three weeks apart. Naturally I was also concerned about hair loss so I did alot of research and talked to many other ladies who had been through this treatment. I decided to use the Nioxin hair products which I think helped. They are a bit "cashy" but I used them throughout the whole process. I even colored my hair. I lost a little hair after the second treatment and was really worried but the shedding slowed down after a few weeks and I never even came close to needing a wig. I did try to avoid the blow-dryer when possible but still used it when I needed it

    This whole journey is just scary. Ask any questions that you have. We have all een there and understand how much anxiety accompanies the "unknown." Hugs to you.

    Rita


  • ml143333
    ml143333 Member Posts: 190
    edited February 2016

    Tuboss - My MO recommended either TC or CMF. He said both were just about equally effective with TC edging out CMF by a percent or two. TC would have been much more harsh on my system, but I would have only had 4 treatments. CMF was easier to tolerate, but is still chemo. I ended up having 8 sessions three weeks apart. There were times that I had to push chemo back because my counts were low, but that can happen with any chemo regimen.

    Weight gain? Well, I gained about 40 pounds, but my MO said that was coupled with being thrown into chemopause so my body is storing fat right now rather than shedding it. More weight gain happened for me after chemo when I started on Femara. I have to believe that I can lose some of this weight. I'd be happy to lose 30 pounds and be back to 120. I'm only 5'0" so extra weight is really obvious.

  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Thank you Rita..I will look up the Nioxin and I will not use the blow dryer. I'm already shedding just from the anxiety of all that is to come.


  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Mandy, I will have to work hard at not gaining. Prior to dx I had lost 30 pounds and of course I gained 10 pounds just going out with friends and eating "feel good" food after surgery and in preparation of not being able to do and eat things while on chemo. I think that was a mistake...LOL.

    I have read through most of the post on this board from back to December. I want to thank all of you, my new CMF sisters, for sharing your experiences here. I think it may help me mentally get through the first infusion.

    This Friday I start my 1st treatment at dawn. It's been 70+ days from my surgery and I am so ready to get this behind me. I have decided to use the cold caps and I am hoping the expense pays off. I feel like Windward..and I too have long thin graying hair. My treatments are CMF and Herceptin 8X every three weeks then just Herceptin 9x every three weeks. I will only do the cold caps for the CMF portion.

    Any advise of what I should do the night of and what meds I should take prior to going in please let me know. As of right now I have nothing on my med plate to take. Should I pre-treat myself for nausea? Feeling anxious, scared and already mentally drained!

    Have a good night and prayers for you all!

  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Windward,

    I have followed your experience with the cold caps and I was surprised at the 10-15% hair loss. Like you it confirms I am making a good choice, or at least I hope so. May I ask how long after the infusion you left the caps on and how long were they on your head prior to your first chemo infusion of the day? My Penquin Cold Cap assistant hasn't used them on anyone receiving CMF before and I'm wondering if I could consider not keeping the caps on for the recommended two hours after infusion is over, or a least for a shorter time. Clearly the caps make for a longer day.

    I"m sure you are glad to be done with the chemo and are happy to be on the last portion of your treatment. You and I have the same dx. My tumor was 1.8 and I was thankful it hadn't gone to the nodes. I too wanted a less toxic regimen..I'm 57. May I ask why you are doing 4X and not 6 or 8 which I see most often? Was that your choice or Dr. recommended?

    Trisha


  • mircann
    mircann Member Posts: 11
    edited February 2016

    Hi gals...

    Well after the good news of "just a cyst"....my previous surgion wants to do a manual breast exam (for second opinion)....WTF...sorry, but is this really necessary..?$^#%@*.? So Im going anyways next Friday....just everytime I see her- I think of the big "T" word....tumor...I know they are just following their stupid Kaiser protocol...but I just wish I didn't have to go. The RN case mgr reassured me when I emailed her I wouldn't have to do a biopsy....what a rollercoaster this is...

  • ml143333
    ml143333 Member Posts: 190
    edited February 2016

    Tuboss - I will be thinking of you tomorrow morning!

  • ml143333
    ml143333 Member Posts: 190
    edited February 2016

    Mircann - sorry you are going through this.

  • Wenrisa
    Wenrisa Member Posts: 59
    edited February 2016

    chemo #6 in the books! 2 to go... Praying for a few not too bad days. Dr gave me a millionth anti nausea med to try. I feel like I've been on everything. This one is a steroid, starts with a D, but can't remember the name. Worth a shot I guess...

    Mircann hope all is well! Prayers for you and all the rest of my CMF chemo friends!

    I want to try acupuncture but I'm not sure I can get out in the few days after chemo. Is there any benefit in going when I'm feeling well?

  • Tuboss
    Tuboss Member Posts: 15
    edited February 2016

    Thank you Mandy! I'm anxious so I'm just going to relax and call it an early night tonight. God bless all.

    Trisha

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