CMF Question
Comments
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Mircann - first of all - I am so happy that you are in a new apartment and things seem to be getting better on that end.
I worked through chemo so I can't say what going back after being away for 8 months will be like. Yes, I have chemo brain at times especially short term memory but you learn to write things down more to remember. Give yourself time. You will be fine.
I am just on Femara, no Zometra infusions.
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Mircann, welcome back to the forum. I am glad that you have found an apartment and that things are better in that end. Try not to obsess about your memory. If you develop an order of doing things, and as the other mandy suggested, write things down, you should be able to do your job. Your co-workers have noticed that you were away and if you tell them about your residual chemo side effects and that you are still recovering, they surely willl be supportive. Let us know how it goes once you are back at work. Hugs. Mandy 1313
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Jenny - as per previous comments, there are big long-term differences between TC and CMF - I had a very hard time choosing but ultimately felt that the risk of neuropathy, etc were just not worth it for what I have. Small tumor, early stage - but high Onctoype score. My MO explained that the high score just meant that my cancer would respond well to chemo, not what type of chemo. You can use a site called cancermath to determine 10 year mortality rates when you factor in age, treatments, etc. The difference in CMF and CT for me was less than 1% - my MO also said that the biggest factor to prevent reoccurance is the Tamoxifen, etc over 10 years. I am using Sloan Kettering and they use CMF a lot for early stage breast cancer b/c they feel that it is "enough" toxicity for many patients. It is a long slog however - mine was 8 treatments spread out every 3 weeks followed by radiation. I was diagnosed in March and am now almost done with radiation (next week). It can be a tough decision, but you have to try to choose what's good for you. so hard. welcome to message me if you'd want to discuss further.
Amy
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Margaret- Regarding your friend on CMF , so sorry she has such bad nausea mine wasn't too bad until the end of chemo (last couple treatments). Regarding the hair loss, I was told CMF usually just thins out the hair, you don't lose it all. I still have about 60% of my hair left. But I got worried everytime I took a comb to it and washed it as hair always came out. I could not work doing chemo, it is too much to go thru physically and mentally and I have a two yr old to take care of too. Maybe she just ask her doctor if he/she can put her out on disability...why go thru the madness and discomfort also at work...most doctors are very reasonable about putting patients on work leave. You might not get a full paycheck but you get at least half a paycheck (but might vary per employer and/or state your in). Legally they cannot take her job away due to her cancer..FMLA federal law with employers (I think of employers with over 15 employees) state your job is proctected. We cant help it we got sick with this...Google federal family medical leave act. Hillary Clinton was instrumental in getting this leave act implemented.. years ago...Yeah for Hillary!
Thank you- to the two Mandys for your support on my issue..
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Micann, good to see you are posting. Let us know when you start work and how it goes. I also could not have worked while I was on chemo but many women do just that.
For all the ladies on this thread, hope you have a wonderful weekend and a good Thanksgiving too.
Hugzzz
Mandy1313
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Wishing everyone a Happy Thanksgiving!!!!! Hope all is well with everyone
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doing the happy dance for thansgiving!done with radiation! See mo next week for drug onfo. So relieved this is done for now. A very happy thanksgiving to everyone!
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starting CMF on 12/3/15 and worried about side effects. I know each case is different based on the person and course of treatment but on average how soon after treatment until you start to feel the effects? And for how long do they usually last before you start to feel better? I'll be having treatments every other week for 16 weeks. Thanks
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My 8 treatments were every 3 weeks. I would have treatment Thursday morning and start feeling bad Friday evening - effects would linger through until Sunday evening (1 time even until monday). Mostly just fatigue after feeling "yucky" those 2 days. My sympoms were nausea, bad reflux and extreme fatigue over that weekend. The anxiety of what to expect can really be the worst. This board is great and very supportive! The worst treatments for me were #2 and #3. After #2 started on reflux meds and nausea meds that did help enormously. Wishing you luck and strength to get through this.
Amy
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thanks Amy! The unknown sure is hard. i'mready for it to be over already!
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Wenrisa - we are hete for you all the way!
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thank you
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Good morning ladies!
I hope that you all had a good weekend and if any of us had treatments, that the side effects were minimal.
My 4 month check-up with my MO is this Thursday. I don't know why, but I'm nervous about this one as my liver enzymes were a bit high last time, but still within limits. The PA I saw said he was not worried, but I guess I am a little. With all the new aches and pains from the Femara, I guess I am just a bit nervous.
I hope you all have a great week!
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Hi All,
I start my CMF on Friday Dec 4th and am so glad to have found this board. The tone of it is so caring and supportive, and information sharing.
Though I had been told there is hair thinning, but not total loss I decided to hedge my bets, and do the Cold Caps for the 4 infusions I am scheduled for.
Keeping the way I look as much as possible, largely for reasons of privacy, is important to me. I am a researcher and read that with CMF you can lose your fingernails. Has anyone had that experience?
I am hoping I will have the same experience with best and worst days as you Amy, as I arranged my chemo for Fridays, hoping that the first few days would be worst. I am self-employed and work full time, but arranged for Mondays to be a very light day. I was told you should not wash hair 3 days before or after infusions. Does anyone have any experience with that? I read above about nausea, and reflux etc. does that mean that the medications we are given do not help, or do not help enough? I thought the medications they give you before each infusion really work.. maybe they do and it would be a lot worse without them?
I have also been alerted to the possibility of what I now think of as Hoof and mouth disease, but they call it mouth and foot syndrome, which sounds awful. Has anyone had those symptoms and if so, how did/do you deal with it?
I guess for me, forewarned is forearmed, and I will be delighted to have worried for naught.
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Winward - glad you found us!
Good luck with your first infusion on Friday. I'm sure it will go fine. Take some snacks and things to keep you occupied. You'll find that if you keep a regular schedule, you will make a friend or two or at least someone to talk with if you want to.
My hair thinned, but no one could really notice except for me and my hair dresser. I didn't use any special type of shampoo although some of the ladies on the board did. They can tell you the name. I also didn't alter how often I washed my hair. For me, it tended to get worse after the 4th infusion if I remember correctly.
I have always loved to paint my nails and have them look nice. Consequently, I was always able to grow nice nails. While undergoing treatment and for about 4 - 5 months after, my nails were brittle and broke often. I couldn't grow them out for anything. I just kept putting on strengthener and eventually they came back. I never lost any.
They do give you something during the infusion for nausea but I also had two prescriptions. One was Zofran and the other was Compazine. I took a Zofran when I got home and every 6 hours for the first two days. I used the Compazine for break through nausea. I never actually vomited which was a good thing, but still generally felt like I had a mild case of the stomach flu until Sunday evening.
I never had any mouth problems, but there is a mouthwash that your MO can prescribe, I think. Some of the ladies on the board used Biotene, I think.
I always had my infusions on Friday mornings. I usually felt pretty good right after the infusion, probably fro the steroids that they pump in. Sometimes, my husband and I would go out for a bit and act normal. LOL By Friday evening, I was slowing down. Saturdays were usually a down day of laying in bed or sittigon the couch. I did a lot of sleeping on Saturdays. Most Sunday mornings, I would feel really good then by the evening I was not feeling right at all. If I got a Neulasta shot on Saturday morning, then I felt like I had the flu on Mondays but was always back to work on Tuesday.
Hope all goes well!
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Dear Mandy, I am so glad I found you, and thank you so much for your response, and detailed information. and support. I hope I have the same reactions to the infusion that you did. A yucky weekend and Monday to recover, and better by Tuesdays. I will follow your experience and take the Zofran after the infusion and then Compazine for any breakthrough nausea.
Since I will be doing cold caps, I will be staying at the hospital in the caps for 4 1/2 hours after the infusion, so having read your experience, I will bring the Zofran with me to start right away!!! Never would have thought of it on my own!!
I have bought every shampoo and conditioner recommended, which is unusual for me being a contrarian by nature, but did not want to take any chances that I would find reason to regret not doing what was recommended, ( even on the chance the recommender had a financial interest in the product!!) I have even lined up a hair extension to buy and use if my long straight hair ( clipped at the nape of my neck) gets too too thin. Hope I won't need it, but if I do, it's there waiting for me.
Mandy, what triggered the need for you to get a Neulasta shot on some Saturdays?
I am delighted you did not have any of the foot and mouth syndrome symptoms, or bad dry mouth, and maybe I will be as lucky.
Did anyone have it?
I am ready for Friday, have books, and audio books and Ativan and my husband to help me get through the day. I would sleep if I could, but having to drink all that water, I imagine I will be peeing regularly. My oncologist recommends 6-8 glasses during the infusion day. The Breast Center where I am being treated provides free reflexology session while tethered to the IV on infusion day, and they provide lunch for patient and any companion. That is so nice. It makes a difference if a place is really patient friendly.
Thanks for your response Mandy, was very reassuring. I hope you are well and that your follow up visits to the breast surgeon are all happy ones.
windward
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Winward - while I am sorry you have joined us, I am glad you did. The ladies here are the BEST!
The white blood count is what triggers the Neulasta shot. I didn't have to get it for the first two infusions, but did for the remainder. If you do have to get it, start taking over the counter Claritin on Thursday. It helps with the bone pain.
I totally forgot about my center giving lunch to the patient and their companion. Some days they even had Chick-fil-A! My favorite! They also had a refrigerator stocked with waters, juices and the like. Crackers and things like that were also available.
I wish you well. Please continue to post here! It's not a super active board, but very supportive. You could also look for the December Chemo Board and start to post there. Not many ladies do CMF, but it is still a good resource.
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Hi Mandy,
Did you figure out about Claritin yourself, or did your MO recommend it?
I thought Claritin was for allergies.
You are right about not many people getting CMF. It seems more popular in UK than here. Thanks for the suggestion to connect with other December starters. I will do it!
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I actually read about taking Claritin on the boards. When I talked with my MO about it, he said absolutely to take it. I tried once without it and the bone pain in the larger bones like the sternum and hips are real. I thought I was having a heart attack. My advice - take the Claritin. I'm not sure how it works, but it does!
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I've heard Claritin helps for the bone pain from Neulasta as well. So I would certainly try it if I start getting bone pain.
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Windward, I am sorry you are so overwhelmed with what's before you. We all were. But I have to say, and I bet most would agree, if you have to take chemo, CMF is the cocktail to have.
I lost maybe 15% of my hair. Mostly in the front, and ironically more on the side with the cancer (must just be coincidence). Some may lose 40%, but I think that's on the high side. I don't know that you need to do cold caps with this protocol. I understand it's costly and uncomfortable. My hair did turn very dry from the chemo. I was introduced to Pureology Gold Nano. It is very expensive, but goes a long way and did wonders for my hair.
I had no problems with my nails, nor with mouse sores. At the advice of someone on the board, I took L-Lysine 1000 mg every day during chemo. Best to start before to ensure that if you have any problems with it you can deifferentiate it from the chemo. It's taken for skin and tissue health. I don't know if it helped, but I didn't have any problems. I also sucked on ice chips when the cytoxin first started up (kind of the cold cap theory). Again, don't know if it worked, but no problems.
I had great fatigue the day after chemo, and into the next day. But then I picked up and felt stronger. I didn't work during chemo, but I probably could have with the exception of those days. I hope you'll be like me and be fine.
My mom cursed the message board because she thought it brought up all kinds of things that could go wrong. But I disagree. I was prepared for what may happen, and got all kinds of good tips.
I'm hoping your treatment will go well. It seems like a long haul at the beginning, but it will be over. Now it seems almost surreal.
Please keep us posted on how you're doing.
Sue
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going for my first CMF treatment tomorrow. I understand the doctor will probably give certain prescription meds to take home for nausea and such. But are there over the counter items I should plan on having at home just in case
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Hi Wenrisa!
I am sending you a private message with the various items that I used during chemo. So if you have a minute, take a look at your private messages today. I was lucky in that my onc gave me a list (and it was a list) of various over the counter meds to keep on hand during chemo. This included:
Pepcid AC (for heartburn); colase (stool softener since sometimes that steroids they may give you constipation); immodium (for diarrhea); biotine mouth wash for possible mouth sores (i never used this--instead I used salt water which I found more soothing).
Additionally, my onc suggested that I have on hand: bottled water, ginger ale, creamy soothing things to eat (that were easy to cook) such as macaroni and cheese, cream of mushroom soup. .
I also had acupuncture once a week when I was on chemo and it helped a great deal with some of the usual chemo side effects
Your onc will give you some medication for nausea. Don't wait until you are nauseous to start taking it. In my case the first med prescribed, zofran, did nothing for me. But later I went onto a combination of kytril and emend and it really prevented nausea. So speak up if the first meds do not work---something else will work.
If you can go out and get the various items, it will give you the security of knowing that you are ready. You may find that others will have other advice for you---everyone is different and different things work for different people. Some people breeze through chemo and don't need any of these items...I think the anticipation is the worst part.
Hugs to you and I will think of you tomorrow. Let us all know how you are doing.
Mandy1313
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Hi Sue,
Thank you for your support and sharing your experiences. Finding this CMF board is like finding someone from your home neighborhood in a foreign country where you landed and found yourself without passport or any money . So far I have heard from 2 people that you found the first two days after chemo the hardest, and that is very encouraging, Gives me hope that I will be able to be in decent shape when I return to full days work on Tuesdays, after having chemo on Fridays. And wonderful to hear you as well as Mandy had no problems with your nails or "hoof and mouth disease". I think I will stop worrying about those Side Effects for now. And I am only scheduled for 4 infusions. How many did you have?
What about constipation or diarrhea?
You are probably right about not needing cold caps with CMF, but If there was any chance I could save some hair decided this was the time to spend the money I saved for a rainy day.( I hope this is the rainiest it gets). I know cold capping will also make the chemo infusions more like torture , but ... I always have the option of cancelling the deal after a couple of infusions, if it is unbearable. I didn't know they give each chemical separately. But if they do and ice chips helped, or maybe helped with the Cytoxan, I will do it too. What made you decide to do chips with cytoxan vs. the methotraxate or 5 F-U? I looked up your recommendation for hair product and it sound lovely. I bought the Kenra products- shampoo and spray conditioner that cold cap recommended, plus a comb with large teeth and large spaces between teeth. I have long straight ( old grey hair) which I now wear clipped at the nape of my neck. When I use up the Kenra stuff I will try the Pureology Gold Nano, which says it is for old hair!! it sounds like a treat for the hair.
Just got a call from the hospital confirming my appointment for 7;30 am Friday.... so here we go...
windward
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HI Mandy 1313,
Thanks for all the additional information and advice. Especially to get back to MDs if the heavy duty anti-nausea meds do not work.
I have started taking Prilosec at MOs suggestion, and was going to take Zofran on the day of, at your suggestion. I also have a prescription for Compazine if the Zofran does not work, and will be sure to get back to the MO if neither work. I will ask MO about giving me a prescription for kytril and emend for just in case. Did you take them at the same time? There are things one MO knows that others may not, which is another reason why this Board is so special.
I have to remember that I live in a large metropolitan city, that has drug stores open 24/7 and that I don't have to have EVERYTHING I might need on hand , for just in case. I can always go out and get it , if needed.
Interested in your experience with acupuncture. Do you know what SE it helped with?
Your experience made me think I should consider it for intestinal issues, because I have a long term problem with Irritable Bowel Syndrome, and since I don't know if I will become more constipated , or go the other way ( no pun intended) , I am concerned about what more I can take for some regularity than I already take. Which is practically everything. But, maybe acupuncture can help. I will check on it.
Once again, a great suggestion.
I was wondering about what kind of foods will seem " appetizing", and I guess creamy stuff. Like creamy soups? Smoothies? Did you gain weight with that kind of diet, or did you have to force yourself to eat?
Off to make one of the last real dinners I think I will be cooking for a while, or... maybe not. If it weren't so scary, and with such unpleasant SE, this could be like an adventure. How is that for putting a bizarre spin on things.
windward
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Hi Windward,
I sent you a private message. Just remember though that everyone is different so my experience may differ from yours.
The good news to share is I never need a neulasta shot and my chemo was given all IV and I did not need a port. I kept most of my hair and my hairdresser was quite surprised at how well I did.
For those of you gals beginning this journey, we are here for you and will help you get through it.
Many hugs.
Mandy1313
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I received methotraxate and 5-FU via an injection into the line. Cytoxin was the only thing I got via drip. I didn't get a port either. I think i read to suck on ice for cytoxin...Mandy, did you do that?
I did have constipation several days after treatment a couple of times. I think due to the zofran. I used Colace and Senecot and they worked well. But, as Mandy points out, many suffered with diahrrhea. I stocked up on all sorts of stuff and ended up returning a lot of it. You are right that you will leave the house, and can get additional items if you need to. I used Biotene toothpaste and mouth wash and highly recommend (again, cuz I didn't have mouth problems).
And, trust me, you will eat good, normal foods most of the time. The first couple of days maybe not, but you won't eat mushroom soup and mac and cheese for 3 months!
Oh, I had 6 treatments (which was a drawback to CMF vs. 4 TC treatments. Still glad I chose that, tho).
Please try to roll with it. I didn't find SEs that bad, and hope you will find the same. If not, we'll be here to support you and provide advice if you like.
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I forgot to mention one other item I had in my basket of "chemo support"---refresh eye drops which I used to keep my eyes moist.
Take care all.
Mandy1313
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Sue - I got everything via drip.
Windward - I forgot to mention that if you take the anti-nausea meds, you should take stool softeners as well. If not, you will be terribly constipated.
I also remember sucking on ice chips during the cytoxin part of the infusion. I also remember getting a terrible headache and sneezing. If you get a headache, tell thr nurse and she can slow the drip down a bit.
You are going to do fine!
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Lost about 30% of hair more or less, not too bad and no one but me and my hubby noticed. didn't really start until 3-4 treatments in - didn't do cold caps (I thought this was reserved for more aggressive chemo). Had slight nausea (citrus ice pops helped) as well as taking meds for 1-2 days. I had serious hearburn and maalox and prescription strength reflux meds helped immensely. Bad constipation - used stool softeners throughout most of the 5 months. I had to slow my drip of cytoxin to 60 mins - got horrible sinus pain and headache with 30 and still some at 45 (But I tend to get sinus reactions to everything). About 3/4 of the way through drip I would sneeze violently and then get pressure. 60 mins helped with pain. you can do this! not as bad as "in the movies". just allow yourself 2-3 days to rest and be a couch potato. good luck!
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