CMF Question
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Thanks for the reassurance about the hair loss/shedding. Ironically, after I posted last in this thread, I became really concerned about my hair because it won't stop shedding! It still looks okay but how much hair can I really lose? Anyway, for the most part I'm feeling pretty good after Tx5...good energy, no bone pain from the Neulasta, etc.
Thank you to all you wonderful ladies who have gone on this journey before us but still chime in here. It's so helpful and it means more than you know! I plan to return the favor as time goes on.
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Happy New Years all!!!
I can't believe my CMF start anniversary is coming up next month. I haven't been on in a while. I've had 2 additional reconstruction surgeries and needed a mental break... The thing to remember is to take your meds before any symptoms come up. I did my treatments on Thursdays and by late Fri and the weekend I was blah... The nurses in the treatment rooms are the best. They had some many tidbits of info that were tremendously helpful and this site was the best!!! On the day of treatment I would work.. I'd be so amped from the steroids Some times I'd take the Friday off or the following Monday..
I believe the second treatment I was throwing up and it was just the worse... But the ladies on this board and my Onco walked me through it.. Compazine and Zofran became my best friends... Don't let the nausea come to you.. Keep it at bay...And you need liquids and even though water was disgusting to me I would add lemon to it or buy the flavored water...I sucked on peppermints and lemon drops because that rust taste in my mouth was revolting...After that 2nd treatment you can bet I took my nausea meds constantly and I stayed with a glass of Crystal Light flavored water near me...EAT FRUIT.. I started stewing cranberries, plums and apricots and ate that because I stayed constipated
..Colace became my life.. That was one of the worse side effects.. I would go almost a week without a bowel movement... You don't wanna know!!!...lol, but I'm sure most of you do...I think I'm responsible for Kraft Mac & Cheese financial profits between the months of Feb-July.. I couldn't stomach much of anything else, but I would eat that in droves.. I also had neuropathy in my legs. It felt like pins and needles and sometimes I would walk with a limp..and on some days I couldn't walk much... My nurses told me to take B6 (and believe it or not it helped out) I started also taking Super B Complex..
Also for your memory.. That was the worse because I was working through treatment and I would forget 75% of things told to me. I was in a meeting once looking stuck on stupid.. I had no idea what they were talking about... I remember crying in a parking lot of a mall because I had no idea where I parked. I couldn't remember where I entered and it was a huge mall. I was with my 17 year old and we walked for over an hour. He was asleep when he got there. It was after a football game for him.. So he was groggy so he didn't really remember..It was horrible... Also, I've been going to the same Walmart at least once a week and have been parking in the same general area for years, but during chemo I would come out on a completely different side and had no idea where my car would be. Once, I was wandering around in the rain, hitting my beeper, listening for it.. What I started doing was using my cell phone and taking pictures of where I was... It was a life saver. .I'd park, get out take a few pictures of the area and it just like that it became a game changer... I still have pictures of poles and bldgs in my phone and my kids are like "Mommy why were you taking pictures of that??" It's how I got around.. I was so nervous when I flew to New Orleans because I was sure I'd end up in another country. But I took pix of everything..I still use this method at times.. but I'm so much better...
The hair started thinning about the 2nd treatment and I just knew I'd be bald before it was over.. There was hair all over. I have a white coat and there would be strands all over it like a pet... But I guess just like with pets, they shed constantly but never lose all their hair.. I thought I would complete the treatments without needing the Neulasta shot because I went in once every 3 weeks, so I assumed surely, my WBC would be able to recover given the time in between.. But of course, around the 5th treatment I had to have it..The muscle pain the next day was horrific... And once you start them, you have to continue.. My Onco diluted it to 50%, which helped me tremendously. I was tired, but couldn't sleep.. I had night sweats. Overall the experience wasn't as bad as what I thought chemo to be. There were challenges but I was able to overcome them.. Once I started making sure my meds were taken before and I kept hydrated and rested I was ok.. My WBC count got really bad towards the end and I had to delay a treatment but I didn't feel bad at all.. If you're able to stay on top of everything you'll just feel blah for a few days. But then the next 2 weeks are ok..
I wish you all the happiest year ever!!!
Ann
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Rita....you are a beautiful person inside and out. You are one of the good things that came out of my having cancer. xoxo Robin
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Oh thank you, Robin. What a nice thing to say! The feeling is completely mutual!
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Hope everyone is doing well! Just dropped in to say 'HI" to everyone and keep our thread active. I'll be back in a few days!
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does anyone know if the methotrexate and 5 fu cause thinning? I am wearing cold caps during infusions and not sure if it's worth it since I take cytoxan orally. Thanks girls.
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Hi Marciniakk.
Can't answer your question but just thought I'd say hi and hope you're doing ok. Hope you're hair doing ok too. I've also cold capped during infusion. I've used a PAXMAN machine. Not sure if you have something similar in USA? It's hard going don't you think? But will persevere. Every little helps?
I couldn't have my infusion this week as I am very neutropenic. Wasn't expecting that after 3 weeks break. However it does answer why I've felt so exhausted and generally run down. Hopefully levels will increase when I have bloods tested Monday. Anyone have experience of this? Any tips? I was bothered I couldn't have infusion but understand why. The MO said he thinks with the liver enzymes being out (slowly returning to normal) and the reaction after 2nd infusion that he is going to reduce doses for next infusion and give me NEULASTA following.
Love to all. Hope all you ladies being infused are doing well xx
Lilly x
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@ softness - lovely informative post Ann. Inspirational. Thank you. Xx
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Hi Ladies,
I did not practice what I have been preaching. It's been almost 6 months since I finished chemo and during treatment I was strict about taking my vitamin & meds.. Oh well I take my tamoxifen as instructed, but big bad Ann let the B6 vitamins fall to the side.. I had neuropathy during chemo & the B vitamins work. Omg after all of this time my leg is tingling again just like during chemo. Of course my nurse asked if I was still taking the vitamins. I have an appt next week but I've started back and hopefully it helps like it did before.
I guess I got cocky & thought I was 100%. Ohhhh good news. I had a bilateral last yr & did most of last yrs with no nipples (TMI?) anyway I had my nip recon in Dec & had slight complications but ladies, tonight I got out the shower and for the first time since 12/12/12 I didn't frown. My girls look damn good. I had some skin peeling & slight necrosis (enough to depress the hell out of me) but they look good now.. It's been over a month. Perky. My skin is healing. I'm so excited I stood in the mirror posing!!❤️ Now if only I can ease the nerve damage in my leg from making me limp. I can't win for losing. But I'll take the limp any day..
Hope everyone is doing well & Lillypoppy I love your name. Hope you're feeling better & Marciniakk my hair shredded ridiculous & I initially assumed I'd lose my hair. That never happened but again we were on 2 diff regiments
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Hi All, I hope you are doing well. Please know there is light at the end of the tunnel. I had my first mammogram and ultrasound on Friday after being diagnosed last dec. After undergoing a lumpectomy, chemo (CMF of course) and radiation. I was given the all clear. No evidence of disease (NED). Yay! Hang in there, I never thought i'd get through it and I did with all of your help! xoxo Robin
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Robin! That is such awesome news. Congratulations!
I'm doing well other than my hair shedding which is driving me nuts! After thinking I was in the all-clear after making it so long with only one shedding event...well, I spoke too soon. Please tell me it will stop! I have 3 more tx's to go.
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Robin that is great news!!!
And softness so glad your surgery went well.
Ritajean, you were wonderfull when I was in treatment too! In fact I look in on the CMF gals because of all the help I got when I was in treatment---I feel it is my payback to you and the others who helped.
For you gals in treatment--as Robin has said, there is light at the end of the tunnel.
Many hugs.
Mandy
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All of you are wonderful, caring ladies! I'm so glad I found this thread.
Softness, that is so exciting about your successful surgery. What a great feeling that must be. Oh, someday, someday...
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Yay!!!!!!! Robin!!!!
So glad everything turned out great for you and thanks Macy.... I've been back and forth between wanting to hide under my bed and/or walking around topless now...lol...
Hope all is well with everyone.
Ann
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YEA ROBIN! It does seem like the time has gone pretty fast since you started your treatments! I wish you many, many more years of NED.
Ann, I loved your long, informative post. It brought back many memories, but especially my craving for Kraft Mac and Cheese. Maybe we liked it so much because it's rather bland without distinctive seasonings. Don't know but I loved it too, then. I am so sorry that you're still experiencing the tingling in the legs and hope that the vitamins help get rid of it again. My neuropathy was mainly in my feet and I still get it every so often for no apparent reason. It stays about a week and then disappears for a time.
Mandy, I am so glad that I could help you a little as you went through the treatments and I'm so glad you stay in touch with the thread to help others. You have a "way with words" and have offered so much help to others already. :-)
To all of you going through treatment now...hang in there. There is good life after treatments just ahead of you!
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Ritajean!!! You rock❤️❤️
I love how you Make the time to come here and offer advice, suggestion, encouragement and lend an sympathetic ear. You have been a constant on this board helping countless women going through this treatment. I've read several pages and you've been there with a positive, outgoing perspective. You are a pure delight
From the bottom of my heart I thank you!!
Robin is following your example & reached out to me via fb & suggested that I continue to check in here from time to time just to reach back & help others. After chemo I had a few minor surgeries & kind of stayed off this board. It can sometimes bring back anxiety and I needed to escape..but I'm glad she reminded me of how important it was for us to hear from pple who had successfully completed chemo while we were going through treatment.. Gave us hope.. It let us know that it could be done.. There is a wealth of knowledge in here by pple who went thru this... As the old adage goes " Each one, teach one"
Ann
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Hi Ladies
Just checking in. Had 3rd infusion 4 days ago. Due 4th on Tuesday. Nausea lots easier this time with Emend and other anti-emetics. Thank you for everyone's advice which I spoke to oncologist about. Have felt as I expected to this time round. Flu like, fatigue, nausea but doable. Not keen on the steroid effects and flushes. Aches and pains bit better today.
Macy - how's the hair going? I have really started to shred this week and it's panicking me....
Robin, Rita Jean, Ann and Mandy - thank you for continuing to contribute - I admire you so much for doing so. Reading your positivity helps as I feel pretty low at the minute with the full thing - think the day 1&8 is hard going for me and having 9 more infusions is blowing my mind. Sorry for moaning....
Love to all
Lilly x
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Lilly...Just take it one day at a time. Try not to think about 9 more infusions. Just get through each day. You can do anything for one day! Sometimes it helped me to keep a journal and release my feelings and emotions in it. I still go back and read parts of it. You will get through this and will be a much stronger person when it's done.
As for the hair issue, I think we all have panicked about that! Hair is so important to a woman. I used to get so upset with people who told me, "Oh don't worry about the hair. It's only hair and will grow back." BUT it wasn't THEIR hair. I think you will be ok with the hair issue. I'm sure it will thin....but most of us got by without a wig. Still, it does cause anxiety, doesn't it?
Ann, I am so glad that Robin reached out to you and helped you get through this. She is a great gal and I'm so glad she's stayed around to offer advice and help. I didn't handle my diagnosis very well and I relied on the gals on this thread to help me get through it. That's why I stay around.
Hugs to all of you!
Rita
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You girls are so sweet. I didn't handle my diagnosis well either. This wasn't supposed to happen to ME! There is no history in my family, this was a complete shock out of the blue! I still can't believe all that has happened. Rita, was so kind and Renee so I totally want to help others realize that even though it stinks and feels like forever, it truly will be over before you know it. Rita, I had the same experience with you, if I had a dollar for everyone who told me it's just hair it will grow back....it's MY hair! I have long hair, would have taken forever to grow back. It defines me...so I was truly upset out it. Lillypoppy, don't think of it as 9 more infusions left. Just focus on the next one. That way you'll be surprised when it's over. I felt like I was just existing until May when my chemo was done. Was hard for me to participate in stuff and interact with people, cause in my head i'm like...i'm a good person, I don't deserve this. Or this person sucks...why don't they have it? ( I know, I know i'm going to hell for that one). But it was hard NOT to think that way. I also kept a journal so I could remember it. If I read it, I can't believe I went through all that. I found Ann right at the beginning of my treatment, we started chemo a day apart, and I could NOT have done this without her. We haven't yet met in person, but we plan too! It's great to be able to talk to someone going through the same treatment. There was no one in my doctors office except me doing CMF. Cause if my oncologist had his way, i'd have done the harsher chemo but I had the oncotype dx score of 19, so being under 25, he let me do the CMF. ONLY because I bugged him. One thing I learned is to speak up for myself. I have a big mouth, but speak up for others. It's hard to do it for yourself. :-)
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Thank you so much for your words of wisdom and strength, ladies. You have all made this journey much easier. Robin, I totally get what you are saying about the unfairness of it all. I find myself getting really pissed at people who focus on trivial, stupid stuff. Maybe it is important to them, but Sheesh, if that is all you have to worry about in life then you are lucky. I actually de-friended someone on fb because I couldn't stand her trivial complaints and judgments. She knew what I was going through and still. Sorry, but I was upset.
Oh well, I am blessed to feel as good as I do...which is about 90% of normal. My health has maintained through this.
My hair is a different story. I really worry I will have to be one of those few cmf ladies who has to get a wig. 3 more txs but this stuff will still be built up in my system for a long time afterwards.
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This can be done.
I was going through so much at the beginning of chemo. My ex left me 2 weeks after my bilateral. I felt sorry for myself. I felt ugly and I thought that maybe he was dodging a bullet. I thought "I lost both breast, and now I may lose my hair, how could he be attracted to me? I don't blame him" I was out on workers' comp so I had nothing but time to be depressed. It was me and my sons.. One was at college, but he's only 4 hrs away and he drove up a few weekends to help out. And my youngest was 16...He was unbelievable. His friends... They all rallied.. I couldn't believe how a bunch of kids and a woman I met on this website became my guiding light.. My son and his friend would drive and do the grocery shopping the weeks' of my chemo.. They cooked (All I wanted was Mac & Cheese) my son did the laundry because lifting the full laundry basket the first few months after surgery was painful..
Going back to work and finding this board and especially my Robin (my chemo buddy and friend for life!!!l) was a life saver...The things we discussed...lol... At the time it seemed as if time was moving in slow motion.. But as time did go by I realized that my ex was an asshole. I've known him over 15 yrs & we lived together 3 years and were talking marriage and this is how he did me??? Never once asked if I needed anything...Even with him leaving, I couldn't believe he didn't check in on me..We were friends for years before becoming a couple...But karma is hysterical... He is going through a rough time & of course he called me... Needless to say I have a changed number.
My youngest (with my oldest being away at college, it was basically just us 2) has been offered a few college football full scholarships... As I write this I'm waiting on the D1 coaches to come by because he's decided to commit to a school, getting about $60,000 for tuition, room & board and books...This has been a revealing year... The best and the worse of people around me was made visible. Sure I have a little neuropathy in my leg and I do get fatigued and insomnia (tamoxifen) but I'm feeling good about life again... I look back on last year and realized how fast everything actually was moving...I feel stronger. I finally have nipple (TMI)
and my new foobies no longer look like a Dr. Frankenstein creation. They're looking decent..I no longer feel like I will live out my life alone..Once the baby goes off to college.. Mommy may start dating again... I can't believe I feel this optimistic, but I am... It can be done.. Just keep moving forward..Ann
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Oh Ann, what an amazing gal you are and what a great attitude you have now! When major health problems hit and we're "down and out...both physically and emotionally" we certainly learn who our friends are. It is also strange how so many of us experienced major upheavals during our diagnosis and treatment journey. My Mom died between my second and third chemo. She lived three hours away and I always felt that I didn't give her the attention that I should have given her the last few weeks of her life. I think these traumas make us stronger in the end even if they made everything else so much harder. Hugs to you as you move on with your life. There is absolutely NO reason that "Mom" shouldn't start to date again when she's ready for companionship. Please keep in touch! :-)
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Ann...I could NOT have made it throughout this without you! I'm psyched that you might start dating! Who wouldn't be lucky enough to want you! Rita was also so kind and generous and helped tremendously, along with Traii and Renee. The women here are so wonderful, it is why I keep checking in, I want to offer other people the support, that I was searching for and was lucky enough to find. When you are diagnosed and NO one around you is (honest, I am the first of anyone I know to be diagnosed) people don't know how to react to you, and don't know what you are feeling. Everyone is either syrupy sweet or run for the hills. It was hard to take. It was hard to take so much attention. Here is where I didn't feel "different". I am forever grateful to finding all of you ladies. Not that I wanted cancer, but glad there was somewhere where I could go to talk to others who have been in my situation and gotten "real time" suggestions, not something that happened 20 years ago! xo
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Hello everyone. After months of trying to find information on the internet regarding CMF, I finally found this forum, what a great site, thank you all for creating it and keeping it going.
I have been on CMF since October 2013. I am done with 5 cycles, should have 3 more to go. I take CMF via IV once every 21 days. With the exception of one treatment, I had the Neulasta shot every time. The one time I had no Neulasta, the se were much more manageable.
I am having a tough time with heavy nausea (no vomiting, but feel horrible) from the second day to the fifth day after chemotherapy, I also get headaches, lower back pain and total loss of appetite through those terrible days. I am on Emend for three days with each treatment. My hair has thinned about 50%. It bothers me more than anyone else who barely notice.
My Oncotype score was a 22, I went with CMF as a compromise between the oncologists who were suggesting 4xAC and my instinct that was telling me to go with no chemo.
I am considering stopping chemotherapy after the 6th cycle. My oncologist is suggesting a reduced dose for the remaining 3 cycles. My family are concerned that I would not be completing the prescribed treatment. Has anyone faced a similar situation, can anyone shed some light to 6 cycles vs 8 cycles CMF?
Lots of love to everyone from France.
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Hi Medmermaid, I asked my doctor the same thing. I tried to cut my dosage down from 8 to 6. He said no dice. He really wanted me to see the whole thing through. I argued that they were doing it in Canada, but he said there weren't enough studies done that he would feel comfortable with me doing that. My oncotype score was a 19. I ended up doing the whole 8 treatments. I lost hair, it definitely thinned, but not enough that others could notice. I didn't do well on the emend. They put me on a patch. I would put it on my arm the day before my chemo infusion (I had it every 2 weeks). It was called a sancuso patch. Then I would get the chemo, and take Zofran, Compazine and to combat the nausea. It really helped me with the nauseous feeling. I would put it on on Tuesday and take it off on Saturday night. I even taught a Zumba class with it on. I would put a clear patch over it so it didn't fall off. I can't remember what that was called. It has a name that starts with t. I couldn't tolerate the nulesta shot, so I had to have 3-4 neupogen shots every 2 days. So Friday, sunday and Wednesday, and by the end the following Friday to keep up my white blood cells. I sucked on lemon drops, and ginger candies to help combat the nausea. And plenty of water. If you private message me and are on fb, you can certainly be my friend and check out my pictures. Good luck on this journey, we are here to help you! Ask anything you want! xo Robin
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Hi medmermaid.....I did have the dosage reduced for my last 2 infusions. I HAD the infusions but the strength was decreased. My onc said that the dosage that's given as standard is not the best dosage for all and there is a pocket of lee-way in which they can effectively alter the dosage. Some gals even require slightly more than the standard and some do better on a slightly reduced dosage but they continue with the infusions instead of stopping them. The old-fashioned Brach's lemon drops helped me tremendously with that nausea that hits a few days after the infusions. You may want to ask about this and get your onc's reaction to this.
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Hi ladies! Sorry it took me so long to get back to this thread. Life kind of took me away for a few days. We have had so much snow here in Michigan that it is an almost constant battle to stay ahead of it. I'm really ready to go to Florida again-like permanently.
@Ann, isn't it amazing where the help comes from when we need it most? I liked reading your story. I know it wasn't all happy for you but your teenage son and his friends...well that is so sweet with everything they did. And your older son too. Gosh, sons are the best aren't they? Best of luck to your younger son with his college possibilities. Keep us posted! That is so great!
@Rita, that is so sad about your mom. I wish I knew what to say other than I'm sure she understood that you were in the thick of it too, if that makes sense. Rita, you are such an amazing addition to these boards and your optimism and encouragement has meant so much to me.
@Robin, you have been such a source of strength for me. Thank you! I keep looking in the mirror at my poor hair and I hope you're right and I have a feeling that you are!
@medmermaid, Welcome! I also started CMF in October. So you and I are close together...I just had #6 this week. Funny enough, I was recommended to have 6 rather than 8 infusions of CMF. I would love to stop now but I am going with the 8 and got my oncologists (yes, plural) to agree. So, I can't really help you with the 6 vs. 8 other than to say I am right here along side you in treatment!
It was strongly encouraged that I do AC or TC because of my diagnosis but for a lot of reasons, I decided that CMF was the right way to go at least for me. I want the full regimen of 8 due to my diagnosis. I have yet to see another stage IIIer here do CMF. CMF just doesn't seem to be used as much so like so many others here, I was glad to find this thread and these lovely ladies who have gone on this path ahead of us. My chemo nurse, who helps me every time, told me that I was the first CMF regimen she has ever done. Of course, I live in a fairly rural area but that surprised me.
Anyway, medmermaid, if there is anything I can do to help since we are together on this, please let me know. I don't have a lot of nausea, a little bit but not much. I just have a lot of stomach aches and other intestinal issues that bother me on and off. Food tastes good to me, which I am grateful for. Drink lots of liquids--that helps a lot. I've also had the Neulasta shot after every treatment except the 1st one. I was told by my oncologist team that CMF was mild enough to not need the shot but obviously my body thought otherwise. My counts were really low without it-and even with it I'm still below the low end average for many of my counts. I've tolerated the shot better and better as this has gone along. Hopefully it will be that way for you too.
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Hi Ladies,
Thank you so much for responding to my message, you are great, and I am sorry you have all had to go through this. I will be going in for CMF #6 on Wednesday, I will try all the good tips and I hope the results will be better than #5. I will also speak with my oncologist here about dose reduction.
Please let me know if there is anything I can do as well to help out. I am available to share my experiences.
@Robin3 I think cutting the CMF to 6 cycles was wishful thinking in my case. I think I may have to replace the Neulasta shot with something else. On one of my cycles I had four shots of Granocyte 34 instead, and the se were much more manageable. Unfortunately I am not on fb, but I do enjoy Zumba as well. My exercise since surgery has been long walks every day. I walk 5 km, (~3 mi) every day.
@Ritajean Thank you for the tip, I have a friend coming out from the US, and I will ask for the lemon drops.
@Macy Thank you for your support, please know that I am also here to help in any way that I can as we go through this. I will push myself on the liquids. There are days when it takes an effort to drink the 2 litres of water. I also have issues with my counts, #4 had to be postponed because my neutrophiles were sub 1000. I am taking maitake mushroom extract daily to boost my leukocytes, but I am not sure if this is helping. I took a 4 day regiment of Granocyte before I could receive Chemo #4, in addition to the Neulasta shot I had taken following the previous chemo. On #5 the counts were borderline.
Has anyone experienced headaches and weight fluctuations? I have had my weight go up by 3kg (~7lb) early on, then down 5kg (~12lb) mid way, and then back to the original weight. I suspect it is related to the loss of appetite that is particularly prevalent for the first week after the chemo.
hugs to everyone.
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Hi Medmermaid,
I also wanted to reduce my tx from 8 to 6 and said that was how they did it in other countries. My onc said she was not comfortable with that because all of the studies were based on 8 tx (now this was 5 years ago so things may have changed). What she did do, because of some side effects that I had, was that my last 2 tx were only methotrexate and 5Fu, without the cytoxen. Every onc seems to have a different theory of how to administer the chemo and the only thing I can say is that your onc is looking at you and making a decision based on what he/she knows about you. I also never had a neulasta shot--maybe if your onc did not do the neulasta (neupogen) shot you'd be ok. Ask them to try it that way--they can only say no and then you are in the same place as if you had not asked. Now it is 5 years later and I just had a clean bill of health from my rads onc whom I use for follow up. So I'm glad I went through to the end with the tx although at the time I was not happy about those last two doses.
Hope that everyone has a nice weekend. We have snow where I live and since I love snow, that puts me in a happy mood. Also I have a birthday coming up and just got the best gift of all--the gift of good health .
Many hugs to all.
Mandy
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Ok I have a question for you guys that have gone through CMF treatment. When I was diagnosed in December 2012 I was 45 and pre-menopausal. Since being diagnosed my period stopped 3 1/2 months later in April. They have not come back. Has anyone had this happen and then it DID come back? My doctor thinks it is gone for good. BUT that I can still release an egg and get pregnant? What have you guys heard? I'm curious if i'm done. Am I in peri-menopause? Pre-menopause? I know some people call it chemo-pause. He has me on tamoxifen now and in 2 years switch to arimidex cause he thinks i'll be in menopause for sure then. Do you think there is a really weird chance with no period I could get pregnant. I'm confused. What have you guys experienced??
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