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CMF Question

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Comments

  • dash
    dash Member Posts: 173
    edited February 2007
    Ah...physically feel much better today! And it's only Wednes! I think it made a huge difference having my chemo drugs cut back last week.
    3ofus--yes be sure to take your nausea meds as long as you might need them. Easier to avoid the nausea than to put the brakes on it.
    Hugs and encouragement to all the ladies here!
  • 3ofus
    3ofus Member Posts: 201
    edited February 2007
    Hi Ladies,
    Rewards are a great idea. I am thinking of planning a trip sometime in July (finished chemo mid June/ rad starts Aug). Something great to look forward to and to celebrate my husband's 5oth Bday, my 45th bday and our 5th anniversary. I am thinking/dreaming of Spain.
    Holly, I am so glad you feel better. How did your doc cut back? Did you go to infusions only every 3 weeks? Depending how #4 goes today, it would be good to know. Still feel fluish going into this today, sniff. I will take my nausea meds through out this time!!!
    Hugs and prayers to all,
    Ginny
  • ritajean
    ritajean Member Posts: 4,042
    edited February 2007
    Ginny,

    Hope all goes well with you today!!!! Be sure to let us know how you're doing.

    Just keep thinking and planning that trip to Spain! Wow! That would indeed be a great reward!

    Thinking of you today as you tackle #4 and hoping for the best!
    Rita
  • dash
    dash Member Posts: 173
    edited February 2007
    HI Ginny,
    All my counts--white, red and liver were bad last week so my onc reduced my meds by 25% instead of giving me the various shots(like neulasta and procrit). I'm still very low normal but at least it's not below!
    A trip to SPain sounds great! I went to college in Seville and lived there for the semester--it was amazing! I would love to visit again someday. If you go, I hope you'll be posting lots of pictures for us to live vicariously through you!
    HUgs--fluish is not fun! If your meds don't do the trick, ask what others are available.
  • ritajean
    ritajean Member Posts: 4,042
    edited February 2007
    So how are you doing now, Holly? Just thinking about you!!!

    Rita
  • b445
    b445 Member Posts: 980
    edited February 2007
    Holly hope you're doing better today.

    Hope all currently doing CMF are doing well. Remember to keep drinking water, get exercise and reward yourselves

    Hugs & prayers
  • ritajean
    ritajean Member Posts: 4,042
    edited February 2007
    Hi everyone! Thanks CY for your usual "pep me up encouragement." I need it today. BC is on the back burner for me this week as I lost my dear mother on Saturday. Yesterday was spent making all the arrangements, today I'm home to regroup between my "crying jags," tomorrow is visitation and Wednesday is the funeral. Although I know it was for the best, I feel like I have been hit with a "double whammy" right now. Maybe if I can get in a nap this afternoon I'll feel better. I haven't slept much since this happened.

    Hope everybody is doing well today!

    Rita
  • 3ofus
    3ofus Member Posts: 201
    edited February 2007
    Dear Rita,

    I am so sorry to hear about your great loss. Double wammy all right. Crying is healing. I hope you can get some sleep. Have you tried Ativan, it may help now?
    You and your mom are in my prayers,
    Ginny
  • Sue227
    Sue227 Member Posts: 45
    edited February 2007
    Rita,
    I am so sorry! I lost my mom 7 years ago. My thoughts and prayers are with you through this difficult time. Take care of yourself.
    Sue
  • b445
    b445 Member Posts: 980
    edited February 2007
    Rita, I'm so sorry for your loss. would you mind sending me you address. just PM me if it's OK.
    Hugs and prayers hon, we're thinking of you and the family
  • JULY17
    JULY17 Member Posts: 8
    edited February 2007

    Rita I'm so sorry for your loss. my prayers are with you and your family.

  • hockeymomfl
    hockeymomfl Member Posts: 73
    edited February 2007
    Rita, I am so sorry for your loss. I lost my mom 3 1/2 years ago suddenly and I know there are no words to console you.
    But take heart that it does get easier to accept as time goes on. She'll always be in your heart.
    God bless.
    Jel
  • b445
    b445 Member Posts: 980
    edited March 2007
    Hope everyone is doing well tonight
    Hugs and prayers
  • dash
    dash Member Posts: 173
    edited March 2007
    Rita, I am very sorry for your loss. I lost my mother in 1987 and still miss her. It does get easier though, with time. Sending my hugs and support through this difficult period.

    I had my 8th infusion on Tuesday. All my meds are still reduced because of my counts. For about 24 hours after my infusion, my throat seemed swollen and I couldn't swallow unless it was liquid or something soaked in liquid. Anyone have this happen?

    I hope everyone is doing well...hugs!
  • 3ofus
    3ofus Member Posts: 201
    edited March 2007
    Hi everyone,

    It is hard to share this, knowing Rita is going through such a difficult time now with the loss of her mother. I know what I am going through does not compare.

    I do need some support now, hope this is not selfish.

    I have had a really rough 2 weeks. Thought I caught a stomach flu, who knows maybe that was part of it, but I could barely eat or drink anything. Lost 10 pounds and must say feel quite helpless. Had a rough time with vomitting... The chemo nurse told me to stop taking those cytoxan pills (I had 11 of the 14). My kytril and compazine just didn't seem to work. I really am having a hard time sharing this because I don't want to scare anyone or bring anyone down. But I don't know what to do---can't do those pills anymore, that is one thing I know.
    Is anyone doing CMF infusions only? What is that like? I don't want to wimp out, I just don't think my body can go through another 4 months with 2 weeks like I just survived (barely). Boy this sounds melodramatic---sorry. I just got my period too. Yup, Holly, soon as I stopped the pills, within 2 days---that makes my period 1 week early (which doesn't really ever happen for me, I am quite regular). So I am hormonal, gun shy and hoping someone can give me some light.
    Holly, sounds like some kind of allergic reaction. Have you called your doctor? Hope this is resoved quickly. Are you off the pills?
    Rita, again sending you love and prayers. You have an angel in heaven that will be taking good care of you! My angel is my grandmother, who was really like a mother to me. She will always be with you Blessings!

    Ginny
  • Sue227
    Sue227 Member Posts: 45
    edited March 2007
    Ginny,
    I did the cytoxan all infusion, it was not that bad. I would get really bad sinus pain during the drip which they can slow down to help with it, then for about 3 days I would feel rough. The nausea wouldn't be too bad as long as I took my meds on schedule. I am so sorry you are dealing with all of this. Hopefully they can switch you to the iv and help with your symptoms. Hang in there.
    Sue
  • ritajean
    ritajean Member Posts: 4,042
    edited March 2007
    Ginny, OMG girl...I am so sorry that you are having such a hard time. I am doing all my CMF by IV infusions. I've had the first two.....#3 comes one week from Friday, and the only side affects I have had is a rough third day after the treatments with nausea and fatigue. By the fourth day I am fine and then I have a good two weeks. My infusions are 3 weeks apart. My hair has thinned a little, too but it's hardly noticeable yet. My oncologist never even mentioned the pills to me......just put me on the 3 week regiment of CMF by infusion.

    Thanks gals for your consolations. I am back home after a very traumatic week. Nothing about the last 5 days was easy, but as with our surgeries and treatments, I made it through. The tears still come at odd moments and I can't imagine how much I will miss my Mom because she was my best friend and cheerleader for 59 years. I do know it was for the best. Now I just have to adjust to my new life without her. Once again, thanks for your prayers and concerns. They meant so much to me.

    Rita
  • bajalady
    bajalady Member Posts: 14
    edited March 2007
    I have not posted, but have been lurking/reading posts since the beginning of Dec 06. I have had 2 lumpectomies, then masectomy, then a 4th surgery due to infection. I am presently on antibiotics IV. As soon as I finish this 2 wk treatment I should be ready for chemo. I am going to do CMF. My oncologist talked about 8 sessions x3. I was just wondering though if maybe I should ask her about going dose dense. I have read a little about it but do not know if it is appropriate/doable for CMF.
    The women on this board/forum have been really so helpful to me these past months. I have learned so much. I know what ever happens - it is all doable.
    Thanks

    Carole
  • b445
    b445 Member Posts: 980
    edited March 2007
    Holly it does sound like an allergic reaction. please be sure the docs and the nurses know about this.

    Ginney. I'm so sorry this has been hard for you. I hope they can come up with something to help you.

    Carole, I had weekly treatments for 6 months so am not sure how the other CMF treatments compare. I went in every Monday for 22 weeks to do the M & F by infusion. I took the cytoxine pilss daily the whole time.

    I will keep you all in my prayers.
    Hugs to you all
  • dash
    dash Member Posts: 173
    edited March 2007
    Thank you CY and Ginny--I better let the doctor know, I guess.

    Ginny, I had a similar time of it until my doctor gave me marinol and ativan--it seems the combo really can work wonders. Maybe worth a try for you. My onc did tell me though that some people's stomachs just can not handle those @##%! cytoxan pills. Don't feel bad or wimpy if you are one of those people. You can't go on the way you were. I'm still on the pills but it gets more difficult to take them each day. I'm keeping it in my mind that I can switch to IV if it gets too bad. And you can always complain here--that's one of the reasons for this thread to give and receive support for the tough times...we're here for you! (((Hugs)))

    Welcome Carole-I am doing 6 months of CMF, 2 weeks off 2 weeks on for a total of 12 treatments. I might have read about one woman on here doing a double dose of CMF? I was given the choice origianlly of 3 months of AC or 6 months of CMF--turned out AC carried too much heart risk for me so here I am. Let us know what you decide

    Rita....more ((((hugs))))
  • 3ofus
    3ofus Member Posts: 201
    edited March 2007
    Wrote this long...and it wiped me out--grrrr
    Here goes again....

    Sue, thank you for your support and good advice. (((hugs))

    Rita, God bless you for your support and time now. Sounds like the infusions are doable. Glad it is working out o.k. for you. Re: hair report...keep losing lots each day, annoying finding strands on clothes, furniture...however blessed to still have a full head of hair. Followed Holly's good advice re: blow drying head upside down for volume. It is amazing when I see how much comes out after washing it (big pile) and yet can't really tell. There is hope for our hair. Count our blessings
    My love and prayers to you through this time of healing and loss.

    Welcome Carole, I was also offered AC or CMF and chose CMF also because it is easier on the heart, supposed to be easier on the side effects (you probably will keep your hair..) and also once you do AC, you can't do it again. Not that any of us will have to, right! Anyway, make sure your doctor explains all the different types of CMF regimes, with the benefits and the risks fully explained. I didn't have this done. All the best to you.

    CY, thanks for your continued support to us here. You survived the pills? How?

    Nice to hear from you again Holly, how are you doing?
    What is marinol? Did your #5 and #6 go a lot better?
    So you're keeping up with the pills, is it manageable now?
    After 2 weeks from hell, I think I am pretty turned off them forever. Don't think my body could take another 2 weeks like that. Can't afford to lose more weight..not drink anything...Plus psychologically it did a number on me. I want to keep positive and it gave me a big challenge.
    Anyway I will be talking to my dr about infusions. My onc nurse said the pills just give a slight benefit, so for slight, I think I'm going IV. How are your blood counts, you were having some trouble, is it resolved? And also your throat? Keep us posted on how you are doing.

    (((hugs))) and prayers to all of you. I so appreciate your support and kindness. You are all wonderful, beautiful and strong ladies.
    There is an end to this....it is coming....keep thinking about the snow melting (we have tons), and spring coming.
  • 3ofus
    3ofus Member Posts: 201
    edited March 2007
    PS.

    Can anyone help me get my picture to work?

    Thanks
  • dash
    dash Member Posts: 173
    edited March 2007
    Ginny--Marinol is the pill form of marajauna and somehow taken with the Ativan( I only take marinol for 3 nights but contuinue with the ativan), it made 5,6,7 and knock on wood for 8 much better. Of course, with 7&8, my chemo drugs were reduced anyway so who knows. I don't blame you one bit not wanting the pills..it's virtually impossible to stay positve when the nausea is so bad. You do what you have to do. This week I am feeling pretty tired...counts still down and I went to a Young survivor's BC conference in Washington DC area this past weekend so I'm worn out. Plus, they had a norvo-virus outbreak at the hotel and might have a touch of that? I called about my throat and also about the rhoid or fisure problem too. Still having a lot of trouble there and I've tried everything.

    ((((Hugs 'n comfort))))
  • ritajean
    ritajean Member Posts: 4,042
    edited March 2007
    Thanks everybody for your consoling thoughts and words.

    I have my Look Good Feel Better session on Monday night. Dud those of you who took this class wear your make-up to the class or do they actually put it on you while you're there?

    Holly, I'm so glad I'm doing the infusions instead of the pills. I feel so sorry for you girls who are tackling the pills. Hang in there!

    Rita
  • dash
    dash Member Posts: 173
    edited March 2007
    Rita, When I took the class, they had us take our make-up off in class. Our kits contained makeup remover. I wouldn't wear a lot of makeup(if any) to the class, however, because some ladies had removers that required water. In my class we actually applied our own makeup with really good directions from them. I don't know if it works differently with other classes though.

    I'm still doing the cytoxan pills, sorry if my chemo brain and fingers gave the wrong impression.

    I called today about my 2 problems and they were very concerned. Thanks to the ladies that told me to let them know about my throat swelling. Still awaiting a call back though. I wonder what will be decided? I'm wondering if they will they stop the chemo completely. It really shook the nurse up when i told her the food was stuck and I couldn't speak and started to panic until I realized I could still breathe. I then used my throat muscles to push it down enough to drink water and get it all down. I'm pretty concerned now that I think about it--a real duh though, huh?
  • ritajean
    ritajean Member Posts: 4,042
    edited March 2007
    Holly,

    You have EVERY right to be concerned. I'm worried about you. Why don't you see if you can continue with the IV fusion or drip instead of the pills. You have given those pills an A+ effort and you just haven't been able to shake the problems that they are causing. Believe me, the CMF by IV is very doable. It takes about 2 1/2 hours and there are very little side affects. Perhaps they could even space out the treatments to every 3 weeks like I take them. It takes a couple more months to get everything finished, but I've had some really good weeks between my treatments. That extra week helps to build up some of the white blood cells again. Ask your oncologist because I think we had very similar diagnoses.

    Thinking of you............
    Rita
  • bajalady
    bajalady Member Posts: 14
    edited March 2007
    Thank you for the warm welcome & info on CMF. My oncologist has only talked about doing CMF for 8 sessions every 3 weeks. I don't know if she would recommend or be willing to do dense dose. Those cytoxan pills sound scary. I just assumed that this was all going to be done by IV, I will need to check that out with her. Is there a benefit in taking it in a pill form? Why don't they just give it to everyone in IV form.
    I can not start my chemo though until I get rid of a bacterial infection I picked up after 4th surgery. I am now on a heavy duty antibiotic IV. I am suppose to do that for 2 weeks - 2x a day. My husband is doing it for me. I have a port so the visiting nurses came out and showed him how to do it and they just have to come back and draw blood weekly and clean port. Today I went to my PS and he took out stitches from 4th surgery and removed the drain (yipee).
    I also discovered a rash under my arm pit (yesterday) which the PS said is actually a fungus from all the antibiotics I have been taking since 1/22. So, off to drug store to buy over the counter medicine which he recommended (after talking to my infectious disease Dr)which is really for jock itch or athletes feet. I got a chuckle out of that.
    Not looking forward to chemo - but really want to get it started so I can get it behind me.
    You ladies are fantastic. The information and support you provide is invaluable.
    Carole
  • b445
    b445 Member Posts: 980
    edited March 2007
    I made sure I ate before and right after I took the pill and down a bottle of water with it. Didn't eat much for dinner which always worried the hubby but I came out of it all weigh the same as I did when I started it.

    Holly I'm glad you talked to the Dr about the swelling. That is never a good thing. That part of why you take the steroids. they act like an antihistamine so your body lets you asorb the chemo better.
  • ritajean
    ritajean Member Posts: 4,042
    edited March 2007
    Carole,
    When I was first offered CMF, I asked about the dose dense since I thought I needed the most effective treatment if I really decided to do the chemo. My onc told me that you never give more than is needed. We are all different and it's amazing the number of different types of treatments that we gals have. You probably don't need any more than the regular dose. There is no need to subject your body to more than is needed and the regular dose IV regiment every 3 weeks is very doable. I'll do #3 this coming Friday. You might ask about the dense dose but go with what your onc suggests because he or she is the specialist.
    I'm so glad you found us here.

    Rita
  • SCMartin
    SCMartin Member Posts: 112
    edited March 2007

    Hello CMF girls, I think about all of you going through CMF at this time. I had 8 infusionf of CMF, all IV and had it every two weeks. I asked my oncologist if that was possible and even though he had not done that he did some research and asked others and we decided to start it every two weeks and switch to 3 weeks if needed. I was able to get all 8 every two weeks with the help of a Neulasta shot following the first 7 treatments. I tolerated the schedule well and always had ten good days between each one. I came to the boards ofter during that time and some girls were getting only 6 treatments and most were getting the Cytoxan in pill form. I always asked for the Cytoxan to be infused slowly to prevent headaches and other side effects. I completed my 8 rounds Oct. 30th of last year and went on to have 30 radiation and am now on Arimidex. Ladies, trust me, you will all get through this and it will become a memory and not a daily obsession. You feel so elated when you leave the hospital after your last treatment. Good luck to all and keep supporting each other. Susan

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