CMF Question
Comments
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Golfergrandma: if you are feeling tired, please rest, no swinging those golf clubs for a couple of days. If your white blood count is low, is it possible that you picked up an infection? I had the Neulasta shots after every chemo treatment except the last one. For that one, the onc figured that my white cell count would rebound on its own given time. I know the Neulasta was very effective in restoring the white cell count, so if the onc offers it, I would go with it. Perhaps you won't need to have it after every treatment. I was prescribed it as I was having dose dense treatments. Neulasta does have its own side effects though.
Glad to hear you're staving off the constipation. I think I would count that as my worst side effect.
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I know I am too much of an on-the-go, high energy type person so it's very frustrating not to feel 100%. Will try to tone it down during the first few days after tx. This hair thing is also bothering me. It's still shedding like crazy. Am ordering a wig tomorrow. Don't want a buzz cut, but hoping it will stop the shedding. Would like to have enough left to hang under a hat for golf and other activities. I am so dependent on all of you for support, and it's wonderful to share my concerns.
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Golfergrandma: Sorry about the shedding. After my 4th tx, I had alot of shedding---it looked as if there was a mouse in the drain when I took a shower. But somehow it did not matter as much as I thought it would. Hopefully you will get lucky too.
Take care.
Mandy.
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Hi. Glad to meet you all. I have been obsessed with this website since I found it yesterday! I'm so thankful to be able to find advice form others who have travelled this road. I started CMF 9 days ago. I am terrified about losing my hair. Any advice? I feel pretty great now ... Neulasta helped. But I know if my hair is going to come out, it is going to come out soon, and that is very troubling to me. Any advice?
Also, I had bad tingling all over for two days right after CMF. Has anybody else experienced that? Did anything give you relief?
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Atlantalady:
I think it is really hard to know who will keep their hair under CMF. I had alot of shedding after my 4th tx and I had scalp tingling and signs that I would lose the hair. My onc thought I'd probably lose the hair, but she was wrong. It never got any worse and probably thinned about 25 per cent total.
Tingling all over doesn't sound like fun. How about just resting for a day or two. Or call your onc's office and then rest? I had alot of side effects and found that resting really helped me (and acupuncture).
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Hi friends.
I have already had one tx of CMF ... have another scheduled in ten days.
I just found this wonderful discussion board ... full of info!! Love it. So I was just reading about the Rapunzel Project and Cold Caps. Do you think it is too late for me to use cold caps to try and save my hair, since I have already had one treatment? I don't want to waste more money ... this BC is expensive enough already! But if it would save my hair, it would be so worth it to me.
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I had some thinning, mostly on the right side. It was so long, I did trim it up to mid back but I never lost it all. As it was thinning, it never came out in clumps, just kinda like I was shedding more.
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atlanta - You may not lose all of your hair - mine is still shedding and getting thin, but not coming out in clumps. Everyone is different. Ritajean and Designer Mom kept most of their hair and ritajean even colored hers throughout chemo. Keep the faith and welcome! I think we're the only ones currently getting CMF. I had my second tx last Wednesday. Keep up with the questions! And don't be afraid. CMF is doable so I'm told.
I haven't had any nausea, just generally tired and shaky. Resting for the first few days helps!
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atlanta: though I picked out a wig and was told that they could get it to me in less than 24 hours, I never needed it. Many people do not lose that much hair with CMF. But if you want to look into "cold caps" go right ahead. I know one CMFer who did use them because she worried her hair would thin too much.
Anyway, sorry that you have joined us, but welcome to the newbies. You will find this to be a very supportive group of women. They will get you through any questions and will help you through the chemo.
Hugs.
Mandy
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atlanta- Welcome, but sorry you have to join us. Like most of these ladies, I did not loose enough hair for anyone else to notice. Usually about 3-4 days after infusion I would shed a lot of hair and get freaked out. However it would only last a few days then stop. Then at the next infusion, I would shed a bit more. My hair seems to have grown in thicker than ever. I hope you will be lucky too. My Onc said 70% of the women on CMF don't loose much hair.
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Hi My CMF Friends, My husband and I have gone back to the mountains where we normally live and have been getting settled in after being gone since October. We had been staying closer to Seattle for radiation treatments that are not available out here. Now that I've finished I don't have to see my med oncologist in Seattle till May (and get mamos). I had my two month follow-up mid-Feb and so far, so good. Now I don't go back for 3 months.
Ritajean - the gentle pink yoga you described sounds really nice. Deep breathing sure helps to release tension. On choosing CMF over a harsher treatment, I also did not want the long term effects I read about.
Golfergrandma - I was sorry to read about hair thinning. As I recall the majority of what I lost came out all at once (which was worrisome), then there was just a little shedding through the rest of it. It must be difficult to go through chemo a second time. I'm sorry to read the second tx gave you some trouble. My WC fell during tx and by cycle # 4 my doctor cut back the dosage of cytoxan. I didn't have neulasta. My worst days tended to be the second day after treatment. There were some days that I felt incredibly tired. So I really encourage rest when needed. You sound like a very active person and I hear you on being frustrated to not feel 100%! I'm glad you're getting a wig, for me just having them helped my mind rest about it.
DesignerMom - that is an interesting perspective on using gen 1 chemo in case of a recurrence later that a harsher chemo would be effective. And yes, let's pray we don't have to deal with a recurrence!
Malou - I was all set to do TC or ACT and only went with CMF because my highly trusted med oncologist thought it would be okay in my case. If she had recommended the other I would have done that. I'm so glad you have a good oncologist to help point you to the right treatment for you. I wish you all the very best!!
Mandy - I also had protein cravings through most of my CMF. I kept on hand a lot of nuts, all kinds, and at a lot of peanut butter. I was losing weight so I believe the nuts helped provide extra calories too. Over time most food became less and less desirable. Fortunately the nuts were palatable all the way through. Then toward the end I got this terrible craving for chocolate and peanut butter cups. I've never been a big candy eater, so this was strange. I've since gone back to no candy, but hey, whatever gets you through! That's so nice you got to England and had fun. We are thinking about getting a sail boat to put in California for snow bird activities.
Atlantalady - I just finished 6 cycles of CMF in December. My hair thinned but I didn't lose it all, it was mostly noticeable just to me. I just got hats and scarves and wigs lined up for in case I needed them and that took a lot of the worry away. I never needed them. I had chemo at a cancer center in Seattle and they were not recommending cold caps. The women on this thread helped me so much as I had questions come up. I hope you will find this to be a great resource for you too. Sorry you have to be here, but I have to say now that it's over, the treatment went really fast. The worst was mid-cycle when I realized I had only come half way, got a little down a that point, but then the rest of it flew past! I wish you all the very best!!! ~ Beanie
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Does anybody know how to find the standard dosage of CMF? I am wondering if my dosage is high or low.
Thanks!
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Beanius.....I LOVE YOUR PICTURE!!!!!!!
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Beanius: I also love your picture. Where in the mountains do you live?
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Beanius...a high five to you on your finishing your CMF...it is a very long time
Here is a picture of San Diego with the snow covered mountains behind..this rarely happens
as the snow usually doesn't fall this low....
I hope the rest of your treatment goes well..there is an end to the tunnel...
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Beanius- Good for you! Enjoy your beautiful country, mountain life. I can't wait to get back out your way this summer!
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Ritajean.....I sent you a PM....thanks!
Beanius....so happy for you. There's nothing like mountain life, can't wait to go home for the summer to mtns of NC! Love your pic too!
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Beanius - I love your picture too! Since I wear my hair short, I think the thinning is more noticable and will probably need my wig, but also like to wear newsboy hats, fedoras and straw hats. I have lots of hats because of golf. Those with longer hair probably don't notice the thinning as much. We love our mountains here in VA, but they're a far cry from the Rockies. Am originally from IL which is flat, so enjoy the scenery here. Springtime in VA is beautiful!
Have been resting much more since last tx a week ago - don't have much stamina at all and tire easily. We'll see Friday if the WC is way down and am supposed to have a shot I think.
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atlantalady - It seems like there are variations on the dosage. Some got all IV and some (like me) got part IV and part by pills. I also think the docs determine how much based on your weight. I'm not sure about a standard dose.
Thanks ladies for your nice words!
SoCalLisa - What a gorgeous pic of San Diego and with snow on the hills and you can see the hills! What a beautiful day!
golfergrandma - I'm sorry to hear the tx is affecting your stamina. For me it was up and down and there were a few days where I was extremely tired. That's all you can do is to rest and don't let the fatigue snowball on you. Sure hope your WC is good on Friday. Hang in there, you can do this!!
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Golfergrandma....what part of IL were you originally from?
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ritajean - My home town is Aurora and my husband is from Centralia. We both lived on the near north side of Chicago when we were single - that's where we met. Maybe I should visit the IL group? We've lived in VA for 39 years though -- almost feel like a native!
Atlanta - I don't know the standard dosage of CMF, but my tx are 3 weeks apart and last for 30 minutes. Is this CMF lite?
Today I started wearing a hat and will get my wig next week. Also, my hair is kinda straw-like even though I use conditioner.
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golfergramdma....I'm about midway between Aurora and Centralia!
Your CMF treatment is the same as I had. I think it's just the original standard CMF treatment.
Well I'm off to moderate a scholastic bowl match at one of the local schools. The sun is actually shining here in IL today, even if the temps are still cold.
Hope everyone is having a good day!
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golfergrandma, I LOVE the VA/NC mtns in the Spring and Fall. You're making me so miss home
. Most all of my family live in the NC mtns and piedmont and we actually still have a home there that we stay at during the summers and major holidays.....there's no place like HOME ! Enjoy the SPRING a little extra for me......we won't get to go home until end of May!Rita.....THANK YOU SO VERY MUCH!!!
SoCalLisa.....love the picture. Thanks for sharing!!
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Just had to share some good news! I just got home from the oncologist and my blood work and tumor markers were all within the normal range. I will now see my surgeon for the mammograms in December and won't see him until next June. See? That CMF chemo is working!
I find it a bit scary to give up my 6 month security blanket with the oncologist, but I guess it's a step in the right direction! YAHOO!!!
So to all you gals doing treatments right now..........there is a good life when they are through! Hang in there and keep marking them off!
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Ritajean, YEAH! YEAH! YEAH! So very happy to hear your news......that is awesome! Been thinking about you all day and praying for good results
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ritajean- Couldn't think of a nicer person to get such great news! May the good news continue forever!
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Ritajean: great news. you go girl!
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Thanks girls! We do need to hear good news every so often! It helps to remind us that there is life after all these stressful treatments and that the CMF chemo does work! No matter how far out we get from our diagnosis, it's scary when the blood work and the tests roll around. It is good to be able to come here and express our fear and then come back later and report good results. Many of the gals leave the threads once they have completed their treatments. Some leave because they want to put cancer on the back burner and just leave it behind and go on with their lives. Others leave because they are feeling good again and are too busy living their lives to come back, and others don't want any reminders of their journey. We all cope in our own ways and not one way is right for everyone. Since so many leave and go on with their lives, we don't always hear about the successes.............just the problems of those who are currently going through their journeys. We tend to forget the millions of ladies that have been helped by the chemo and rads and have come to grips with the "new normal" of their lives. Sometimes I think we need to think about them more often, as that is so positive!
I hope everyone has a great weekend. It looks like it is going to be cold and rainy here.
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ritajean - I'm so happy for you, that is great news!!! And yes, couldn't be going on for a nicer person!
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Ritajean....thanks for being so positive
! I for one am very thankful for the reminder that there are millions of ladies continuing on .....0
