CMF Question
Comments
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Amapola - glad 1 of 7 is done! It sounds like you are doing all you can at this point to stay as healthy as possible.
About your hair - I never lost all of my hair. It did thin after the 2nd infusion, but no one but me and my hairdresser could really tell. My husband said the only reason he could tell was the amount of hair in the trashcan that I cleaned out of the sink or drain. I didn't color my hair or anything during treatment and continued to get regular trims.
I did talk with my MO yesterday and he confirmed that my numbers were within normal range and they will jump up and down. He said there is nothing for me to worry about and if there was he would tell me.
Sometimes, you just want to hear it from the people that know.
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Hi Amapola36
How'd it go today? It sounds as if you took alot of time to decide on ways of preventing side effects though I am not sure I agree about a fast before and after. Some of the meds they use in the infusion might be less toxic ifyour body has some nutrition--my onc used to tell me to eat a breakfast the day of infusion and I'd have a full breakfast--one egg, toast, and something to drink. So see how you feel but perhaps ask your onc if you should be fasting. Take care and remember you are one treatment done already.
About hair-- I also did not lose all of my hair, in fact I kept most of it. I did do a big shed after tx4, so big that i thought i would lose my hair, but I never did. I used the Nioxin shampoo, treated my hair gently--shampooed less often and did not blow dry my hair---and I don't think anyone noticed that my hair was a bit thinner.....so I hope you keep your hair too.
Hugs
Mandy1313
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Hi Amapola
Good to hear you did well! Sounds like you have it under control and well prepared. i too did not loose all my hair. it did thin out so i regularly had it trimmed. i also had some color highlights added way before i started since i read you shouldn't color during treatment. i wanted the grey growth to blend in. After several months i wanted to color so bad. i hated my roots and was worried about stressing and shedding more hair. my hairdresser suggested a non permanent color wash. i. did notice more shedding but only noticeable by me. i was getting used to it. i washed it every 2 - 3 days. Today Im over 2 months post chemo and colored my hair with permanent product. Hope it holds up.
Im one week post radiation. I had bad burns under my armpit. The RO gave me some burn cream and it has healed gradually. My skin is still peeling like a lizard! Everyday i see an improvement.
Glad to hear everyone else is doing good. Mandy - Im so glad you are OK!
Libby
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Thank you Libby!
Amapola - it sounds like you have researched fasting and have been doing it successfully pre-cancer diagnosis! Way to go for researching and advocating for yourself.
I just want to say that this CMF board has become a wonderful support system as well as a forum for friendship and learning. Thank you everyone!
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Welcome to the new gals on the thread. The gals on this thread are fantastic and will help you every step of your journey.Mandy (ml) My tumor marker bounced up and down for the entire 10 years and I panicked several times but my onc always told me it was still within normal bounds. It still always made me nervous.
Libby, glad to hear that you're doing well with the rads. It won't be long now and you will be a "rad grad!"
For those of you who are worrying about hair loss.....don't stress too much. Those nioxin hair products work wonders and very few CMF gals lose enough hair to need a wig. Your heart will flutter when you first notice excess hair on the floor of the shower, but the loss seems to decrease in time and most people won't even know that you've lost any.
Both Mandy's....you have done a wonderful job giving the the new gals advice. You are both such special ladies!
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Amapola, I guess we just have a different definition of fasting. For me, it meant that you were not eating at all for at least 24 hour a day . It sounds as if your 16 hour fasts work well for you.
Ritajean: so glad that you are back--I missed you. .
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If you can make it to MSK, then those exercise classes might be great. But if it takes almost an hour each way to get there, you are likely not going to go that often. Though as you say, it will get you out of the house---maybe ont ehdays those classes are offered, that could be your project...getting there, exercising, and having a coffee or a green tea or whatever you would want before you return home. It could be very pleasant. Although perhaps a class closer to where you live might be helpful since you may be able to go more often.
I basically walked while I was on chemo and that was my main exercise. I live in a city so it is easy for me to run errands and do other things by walking rather than by driving. Let us know what kind of exercises you decide to do.
Hugs to everyone!
Mandy1313
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I also walked and did an exercise class for breast cancer patients. I also bowled when I felt like it. Try sucking on some lemon drops for that yucky mouth taste. They also help with any nausea you might get. I took senokot for constipation. It worked better than miralax for me. It can be purchased at Walgreen's and probably any other drug store.
It is quite common to feel " a little off" while you are going through this. Your body is getting a big "whammy!" Hang in there!
Rita
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I continued to walk as much as could during chemo. If I couldn't get outside because of the weather, I walked on my treadmill and read a book. It helped to pass the time to read while walking, really can't do that in the real world. When walking outside, I used headphones to listen to music or talked with my daughter when she walked with me.
You will likely have to play around with your dosage of a stool softener. I found that that for the first few days after chemo, I had to up the number of stool softeners I took and then back them back down.
I think it is pretty normal to feel a little off right now. Your body is going through so much right now.
You got this!
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Hi ladies,
Well, I'm finding out that this CMF is going to be scheduled month-to-month since my tumor markers are only going up in ten point increments. My ONC says it's a trend, and to be more worried about spikes not trends. I'm at around 127. He has me do a bone scan and chest/and/pelvic CT everything three months and then reassesses tumor markers monthly with it. April will have been 11 months on CMF. You have no idea on how excited I am that I have been able tolerate "one of the tools in my tool box" for that long! As a reminder, I am stage IV, and when I run out of tools in the tool box, I'm done to wait it out for a cure. The goal is to get the most out of every tool, as long as I have a decent quality of life on it.
My ONJ flare has receded and my jaw pain is a little less. I don't know if that's just cyclical or if it's because I added Naproxen 500mg every 12 hours, scheduled along side my other pain meds. Whatever, I am thankful for the relief. My ONC was able to locate non-alcohol containing Chlorahexadine rinse and spit, to prevent oral infection while the site heals. (The alcohol containing was mint, and burnt my mouth/tongue like crazy). (So did Biotene, Dry Mouth Rinse). Because cancer patients can't do hyperbaric treatment, I'm left to heal slowly on my own.
Ladies, I've been on many different chemo's & combinations, and I can tell you for me, CMF has the less s/e. The constipation, fatigue and mild hair loss are much more perferable to me than hand/foot syndrome, neuropathy, nausea, etc. I would recommend staying on it as long as your body tolerates it. Good luck with treatment! I am also a big believer in staying positive and appreciate your help with that here on this positive board!
Many blessings!
Shelley--Wasilla, A
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HI Shelley!
You are a real trooper--eleven months on CMF and still going. I just wanted to chime in and wish you well. I don't have advice for you since you probably know more about CMF than I do.
Lots of hugs,
Mandy
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Hi all as Ampola36 knows I started on CMF today. I have horrible headache and hot flashes. Not sure if it is the Cytoxan and or decadron ( steriods). I have a significant cardiac history. Thus CMF for 6 cycles. It is wonderful to hear from other CMF Warriors.
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Hi Katcan!
I think the hot flashes are likely from the CMF--I can't explain your headache. Have you tried regular headache medications such as ibuprofen or even aspirin. I'd check with my onc about that you might do to relieve your discomfort. There are many foods that oncs request that you not eat while you are undergoing chemo so I don't want to suggest something for the hot flashes. While I had some hot flashes during chemo, they were all during the night and not unbearable so I never did anything for them. But everyone is different.
But hang in there--you only have five more treatments to go!
And I'm glad you are doing so well Amapola.
Hugs
Mandy
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I agree - the hot flashes are likely from the CMF. Mine started pretty much immediately and I still have them although I'm okay with it because I don't have a period any longer!!!
I got headaches during the CMF infusion when they pushed the Cytoxan. My nurse also told me that sometimes it would also make people sneeze. When I told her about the headaches, she slowed the infusion of Cytoxan down and the headache subsided.
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Hi CMF friends,
Slowing down Cytoxin helped my headaches too. Anyone else experience severe bloating during treatment and day after? If not, wondering if I drank ' too much' water?? Also, I felt like crying a couple days after but got so stuffy I couldn't . Is that why some of you are pro-active with Claratin?
Best to all- brave warriors!
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Hi Amapola, sorry about your uti and lymphoma possible. Nurse noticed my left hand slightly swollen/great-doc says watch. Fighting off mouth sores. Soda/salt rinsing. Talking myself into a walk soon. Only dry day for a week again❄
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Hi ladies, I just started CMF last Tuesday. So far so good. I'm doing once every three weeks. I'm so glad I found this thread. I have extensive mets to my liver. Also its in my lungs. I was on Xeloda for five years and it kept it all under control. In 2015 it started growing again. Nothing has worked longer than a couple of months. My Dr. Says this is old school chemo. Hopefully, it will knock it back. You all sound very positive! I would appreciate any information you all have. Thanks so much, Brenda
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Hi Brenda!
Welcome to the CMF group. We are very friendly and will help you get through your tx. I also had CMF every three weeks by IV. I think you have to trust your onc for finding a chemo that will help hold your mets back---many people try different things for met s and then bam---one of the chemos does the trick. I hope that CMF will do that for you. If you have any questions feel free to ask. You will probably find this alot easier to tolerate than the harsher chemos you have been on but that does not mean it won't do its job.
Hugs and welcome.
Mandy1313
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Thank you Mandy, I was just on Abraxane and CMF does seem to be much easier. I'm looking forward to getting to know everyone!
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Welcome Brenda!
I had CMF every three weeks via infusion and did pretty well all things considered. For you, I think you just need to trust yourself and your oncologist to find what works best for you in keeping the mets at bay.
I never had any other form of chemo, but my oncologist did say that is was not as harsh as other forms would be. It still did the job for me though, so I'm happy.
We are a pretty friendly group here, but not always as active as some other groups. Always feel free to PM me as well.
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Hi everyone,
I'm recently diagnosed, and will start chemo May 15th. Old-school CMF plus Herceptin and radiation. Party time!
MO chose CMF because I have moderate neuropathy in both legs and can't afford the risks of taxanes. There were other reasons, too, but I'm too tired at the moment to remember. I have a variety of other physical and mental illnesses, among them, fibromyalgia with its chronic pain and fatigue, bipolar disorder, ADD, OCD, oh geez, there's so much more, and I'm on so many meds. I'm so tired of all these problems. And then on top of it all, BC!
Most people with my diagnosis seem to be on the more modern taxane combos, so it occurred to me that following a CMF forum might be a good idea instead of just the IDC and May 2017 chemo forums. And am I on the HER2 positive forum, too? Ugh, I am SO overwhelmed! One thing about having assorted mental illness issues and frequent fibro fog is I figure I won't even notice chemo brain.
Anyway, I'll be on IV chemo for something like 6 cycles, followed by radiation. And the herceptin goes for a year, starting with the first chemo.
I can hardly believe how utterly exhausted I am, and I haven't even started treatment yet.
Nice to meet you.
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Hi NC Beach Girl!
This CMF group is a very supportive group and you will find that we are here for you and happy to answer any questions and to give advice and also to just listen. Many of us have become close over the years and have even managed to meet eachother and/or talk to eachother on the phone. CMFis a doable chemo and gets good results. I am 9 years past diagnosis and doing fine. I had my tx every 3 weeks IV for 8 doses and I did not need a port--just a regular IV. If you have any specific questions, please come back and ask.
And I hope that you have a wonderful day today!
Hugs.
Mandy1313
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Thank you, Mandy. I was feeling awfully overwhelmed last night. Better today. Ugh, this cancer really does a number on your emotions.
You didn't have a port? Didn't that tear up your veins? I have only one good vein in my whole body (or so it seems), so a port was pretty much a must.
Thanks for telling me you're 9 years out and doing well. It's scary having Her2 3+ with a very high cell division rate and grade 3-- seems things could grow out of control very fast. I just hate having to poison myself with the chemo, radiation, and all the other drugs that come with the package, but everyone recommends hitting this cancer hard because it likes to metastasize.
Thanks for the welcome!
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Hi NC!
Try not to think of the chemo/rads as poison but as medication--that may make it easier to tolerate. I took each tx as it came and had different side effects each time.
I also had a little kit of simple things to help me prepared ahead of time--anti-acids, stool softeners, anti diahrrea meds, ginger ale, -- a variety of comfort foods.....(if you want the whole list, private message me your email address and I can forward it on to you). After the chemo, be sure to take alot of fluids in--I found that I prefered lemon and orange flavored sparkling water to plain water but everyone is different. And be sure also to take the anti nausea meds that your doctor will prescribe....
I sometimes think waiting for that first chemo is worse than the chemo itself--the anticipation can make you (or at least it made me) really nervous. After the first chemo, I knew what to expect and it was easier for me.
So take care and stop back here to let us know how you are doing.
Hugs,
Mandy1313
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NCBeachGirl - welcome to our little group and sorry at the same time that you had to join us.
Feel free to ask any questions here.
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Oh Amapola36-- don't tell me you had weight gain! When I first met with my MO I told him I can't afford weight gain (I'm already far too heavy) and am afraid of steroids for that reason. So he's only giving me a pre-infusion steroid (apparently for nausea, along with Zofran).
So far (I'm one week post chemo), things have been manageable. First three days were mild nausea, mild headaches, moderate fatigue, sore throat, weakness in the legs, and terrible drippy nose, and needing lots of sleep. Then came the fiery diarrhea on day 4. OMG!!! It's almost as if after day 3 my body said, "Let's switch gears here!" The nausea, headaches and fatigue stopped, sore throat is at a minimum, so is leg weakness. But the terrible drippy nose persists, and of course, the diarrhea started.
LOL, now I've forgotten what thread I'm on... I'm on so many forums and topics! Where was I?... Oh, DONE!
NCBeachGirl
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NCBeachGirl - I was one that gained weight during chemo too but hopefully you won't have that.
Keep managing your side effects and you will be good.
Fatigue will start piling up with each infusion. Try and exercise when you can and stay hydrated.
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Hi all,
Well, the side effects have been adding up!!! After a few days of the fiery diarrhea (I finally had enuf and did the OTC meds and stopped it), I was feeling pretty good. Then I got a weird rash under the breast that had the tumor. Trip to the doctor ASAP. Diagnosis: SHINGLES!! Okay, so I got antivirals, treated it topically with my CBD hemp oil tincture twice a day, and it's very much under control.
But meanwhile, something brewed in my head...I started getting a mild ear ache in my right ear, and mild sore throat on the right side, off and on. Pretty minor stuff, I could deal with it. But noooo, my teeth decided to get involved. Seriously bad pain!!! Right side, top and bottom, either/or and often both hurting at the same time. I even had to break out some old narcotics for a little relief.
Okay...got on the phone with the nurse from the cancer center, called my dentist, was on the fence about what to do. Then fate stepped in and made the decision for me. 4pm and i had to pee. yup, you guessed it-- PAIN!!! Groan. So, more phone calls, and I finally got an appointment with my primary care physician for the next day (today). But was never gonna survive that long, so I held my knees together and raced to the store for some AZO maximum strength urinary pain relief cranberry extract tablets with anesthetic added. Was so desperate I took the first dose in the parking lot with some nasty warm water that had been in the sun all day--AACK!! But that stuff is amazing. The AZO, not the warm water. By the next time i peed a couple hours later, no pain, no more urgency, no more of that weird uncomfortable feeling "down there." Thank heavens!!! And a bonus perk: bright orange pee!
So who knows what the heck is wrong with me all together. I spoke with the cancer center again this morning and they said to just let the PCP do whatever tests she needs--probably only urine test for white blood cells and infection. She said there's nothing they can do for a viral infection if I've got cold. They said the PCP should go ahead and prescribe antibiotics if that's what's needed, and i should go ahead and show up for my next scheduled chemo appointment on Monday.
My poor mom-- she just had eye surgery yesterday morning and is in a lot of pain, and on top of it she's having to deal with learning about all these crazy side effects i'm having (we live together). She finally reached top level of freak-out mode and sent me out on a pizza and Ben and Jerry's reconoissance run last night!!!
Oh, the party never stops around here!
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Hi No Beach Girl!
Sorry that it took me so long to respond to you--I haven't been on bc.org for a while. My goodness you are certainly having many side effects. I also tried out many of the possible side effects when I was on chemo--it makes the experience more miserable than one would hope. But it sounds as if you are a real champ. Just taking things one by one. One thing I did, at the advice of someone on this thread, was to get acupuncture when I was on chemo. If you are interested, let me know and I will give you the details. My internal medical doctor gave me the name of the acupuncturist. It made a big difference and lessened my side effects...
Anyway I just wanted to say that I hope your side effects are reduced by now and that you are feeling better. Hang in there---you will be finished before you know!
Hugs,
Mandy1313
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Just had my second chemo Monday and today I feel like roadkill. UGH!! Even tho I had a thousand SEs from first chemo, I felt pretty good the whole time. Not this time!
I woke up today with a sore throat, stuffy head and stuffy nose. Could hardly breathe. Everything on my body hurts. I got my mom to pick up some magical Chinese food that always clears up a stuffy head. Could barely eat any of it, but managed to get enough spices into me that my nose is much more clear now.
I've heard all over this community that we react to each chemo differently. Yeah, well, I guess! Can't wait to see what happens next.
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