CMF Question
Comments
-
Hi DesignerMom: My stats are fairly similar to yours -- same stage but my tumor a bit smaller at 1.8cm, my grade higher Grade 2 and I had two positive nodes. My oncotype score was 18. I saw four medical oncologists before making a decision. Three of the four recommended chemo, one left the choice to me. My medical history made the taxanes a poor choice for me, otherwise I would probably have gone with the recommendation of the first oncologist which was TC*6.
The treatment I eventually decided on was AC*4 followed by CMF*4. Actually originally it was to be just AC, then onc decided to follow with CMF for extra insurance. In my case my choice was not based on medical studies but the fact that the taxanes (Taxol/Taxotere) did not seem like a good choice since I already have a degree of neuropathy. Also my score was low on the MUGA scan so I didn't want prolonged treatment with Adriamycin. So I took the advice of the last med onc I saw who brought my case up in front of a tumor board and had me see both a neurologist and a cardiologist before starting treatment.
0 -
Hi Designer Mom
My stats were similar to yours ---Grade 1, one positive node and oncotype of 15. Both my onc and a consulting onc were comfortable with CMF. There never was any question of no chemo because of my positive node---the question was whether I would do 4 doses of CT or 8 doses of CMF. I went with the CMF and haven't looked back. The gals on this board are wonderful and will see you through.
Cyber hugs to everyone.
Mandy
0 -
MaryNY and Mandy 1313-
Thanks for the reply . Even my Onc who intitially chose TC for me says CMF is still a good chemo. I think the confusion comes because they have not proven ANY chemo benefits for low Oncotype women. It is probably hard to document. If women use no chemo and have no recurrence versus women who have chemo and have no recurrence, where is the proof? I just know the more severe SE from CT were just too scary for me. With TC the possibility of permanent hair loss and neuropathy, especially as some Oncs said I could elect NO chemo, just felt wrong. By choosing CMF I feel I am giving myself an added safeguard without long term damage. My Onc says that the standard is now only 6 infusions. I know other Oncs give 8. Any of you ladies have an opinion?
0 -
Hi ladies,
I am feeling a little frustrated and have a questions about my CMF treatment... I am on a protocol for 8 treatments and so far have had three with some side effects (mostly queazy feeling and general tiredness) which I have been able to tolerate and even exercise except the past couple of weeks have been harder.
Today I was scheduled for treatment number four (which would mean I am at the half way mark) and the onc said my WBC's and neutrophils were too low and she could not approve treatment. I am scheduled to go back on Wednesday afternoon to recheck blood counts and see if I can have treatment.
Does this happen often and is there any way to organically raise your WBC? Kidding around I told the onc I had a great piece of steak last night and she said my RBC's are fine and the steak does nothing for WBC... I appreciate any feedback and advice you can give me!!!
Designer Mom - I am receiving treatment in MY and my Onc is giving me 8 treatments. My oncotype score was a little higher at 24 and tumor grade 3. Don't know if that makes a difference. Good luck to you!!
0 -
chanellygirl- That has to be tough! Not that anyone wants chemo, but once we start, we sure want to keep it rolling. It means it will be over sooner. I don't know of any organic ways to raise white counts. I know some of the chemos are more prone to low white counts. Don't they give some kind of shot to boost counts? I would think that lots of rest so your cells can regenerate couldn't hurt. You will get back on track. Before you know this will be behind you.
On a different subject. Anyone read the MSNBC article today about cancer risk from excessive use of radiation from PET scans? Some radiologists are advocating keeping track of lifetime exposure of radiation as there is so much. I bet all of us have had a lot of radiation already, more to come with RADS for me. More to think about!
0 -
I'm 1/2 way through my CMF treatment and have recently developed an awful metallic taste in my mouth. I know it's been discussed before, but rather than search through the boards, I was hoping those of you with remedies could chime in. I've also developed a constant state of mild nausea, which flavored drinking water helps a bit, but not all the time.
I'd appreciate any insights. Thanks.
Colleen
0 -
One of my oncology nurses suggested using plastic silverware to eat with. I also have to flavor my water.
0 -
Try Crystal Light or the old fashioned lemon drops for that metallic taste. I also found the lemon drops to help with the nausea.
chanellygirl....I don't know of any organic way to boost the white blood count but I was given the neulasta shot for that and it worked. I had no side effect at all from the shot.
It's wet and rainy here this afternoon. My afternoon golf got cancelled! Poor me! LOL
Rita
0 -
Hi codavis.
I also had metal mouth or some kind of unpleasant taste in my mouth. I didn't realize it and thought that there was somethng wrong with the water and ice at my chemo center. That is why I brought lemon flavored Italian ices with me to chemo. I found that tart flavors worked best---I drank West Indian style ginger beer (which is not beer but is a very ginger flavored ginger ale, available at Whole Foods), San Pelligrino Aranciata and Limonata (Orange and Lemon flavored sparkling water but naturally flavored).Occasionally I could drink sparkling water if it was very cold. Like you, I had a low level of nausea for a great deal of my chemo. I sucked on ginger hard candies all of the time for my nausea and I think it made it better. Acupuncture also helped (I don't know how, but it did). The good news is that the nausea does go away and you will be fine afterwards. My onc said that the low level nausea was a common side effect of cmf.
Hope that you get the nausea and metal mouth under control.
Hugs from Mandy
0 -
Thanks ladies!! I had some blood taken today, results not yet know and will go back tomorrow to try again for #4 and my half way mark!! Will keep you posted....
As for the nausea and yucky mouth taste, I drink a lot of flavored water and sparkling water. I make a mix of water, lemons and limes and leave it in the refrigerator.... I like hot mint tea and for the mouth taste I have started to chew more gum than I did in the past. For the past month I have had cravings for baked potatoes. they are easy on my stomach and I eat them a few times a week with a little bit of olive oil. Sometimes melted cheese or whatever veggie I am having with my meal
Best to all and thanks again for your response, barbara
0 -
Thank you all. I found some lemon drops in my daughter's long-forgotten halloween candy, and it helped. I think it's weird that this stuff is starting half way through my treatment.
chanellygirl: It's so funny. I stayed home with my sick daughter today and we had baked potatos for lunch! They were great.
0 -
I wasn't sure if I should post another topic, but thought I would start on this thread... I've been reading trying to find the answers, but this thread is so long, so I'm just going to ask. Is CMF just as effective as other chemo's? I've read alot of this thread and think CMF may be my choice, but my onc says they don't use that anymore and is suggesting the most aggressive treatment, even without my oncotype test results being back yet. She doesn't think it will be a low score because I'm grade 3. She said this is my one and only chance to "cure" my cancer and if it comes back, they can only "treat" it. (I didn't think there was a cure). I'm not comfortable jumping in to a aggressive treatment and thought I read somewhere that CMF was proven to be just as effective.
On the outside everyone thinks I'm so strong and calm, but really I'm just overwhelmed, confused, stressed, basically a emotional mess and I'm struggling with treatment decisions, work, my reconstruction process, Dr appts, tests, etc, etc. Some days I can't even think straight, other days I don't want to think and just don't care. But I know I need to make a decision about chemo very soon. Can anyone advise me on CMF and how I could convince my Onc of using it?
0 -
Dear Lindy323
It sounds like you have so much being thrown at you right now... Recovery and making a decision about chemo. My feeling is that you have time to make a decision that you will feel at peace with and do not have to rush into a decision. The onc' I talked to said they like to start treatment within 80 days of surgery. My surgery was Feb 10 and I started chemo on April 12.I needed the time to heal and consult. The oncotype will give you additional info about your chance of recurrence and help you make a more informed decision. in fact the oncotype company (can't remember name) is very helpful and if you call them will let you know approx how much longer. I too was also very anxious and called probably three times to ask different questions and ultimately when i received my results to have someone go through the report in detail with me.
My tumor was also IDC, a grade three but a bit smaller than yours.. As all of our situations are different I think it is best to focus on your personal situation tumor size, grade, oncotype, your age, pre or post menopause and make your decision with the facts presented to you. i am 48 but was already post menopause so the belief is follow up hormones also provide a little more protection for post menapause. If you want there are also research studies that break down the oncotype results based on the diferent elements for age / tumor grade etc. My beautiful sister the scientist was able to research for me Also, ask your onc (or you can on your own look at adjuvantonline or math something?? ) If you are a person who needs all the data these are programs which look at prognosis data and statistics. But also remember, nothing is guaranteed having chemo doesn't mean there are any guarantees and likewise, not having chemo does not mean the cancer will come back. This is a decision you make that will give you personally a sense of peace.
If your onc is not wiling to do what you want you may want other opinions.... After the oncotype comes back... Make the appointments now. You have time and do not have to make this decision tomorrow. Your first priority is to heal from your surgery.
I am being treated at a major hospital in NY and the absolute recommendation for me was CMF. The onc's opinion was that I did not need the more toxic drugs. I had other recommendations for more aggressive and one who tried to push me into the taylor study where I would be randomized. Since my score was 24, the mid range I would be randomized between hormones or hormones and chemo.
After lots of conversations with my family I knew the CMF was right for me. I am overly sensitive to many medicines and eventhough the CMF protocol was 8x instead of 4x I thought the less toxic each time because of my sensitivity would be better for me.
I hope I was able to give you some useful info and I am sure the other ladies on this thread can add to my thoughts. Best to you in healing, Barbara
Ladies,
On another note, I was able to have treatment yesterday afternoon since my blood counts went back up ... YEAH I am at the 50% mark... Barely slept last night because of the steroid but I am so happy and relieved about being at the half way mark I could dance around the room.... Lots of water and for me today!! This is my last week of school/teaching and I look forward to my summer and making exercise my first priority.
Thank you everyone for all of your love, caring and support on this site!! Barbafra
0 -
Lindy,
I was told that 6 CMF treatments (and some oncs now do 8 treatments) are equal in effectiveness to 4 of the the stronger regiments. Chanellygirl has given you good advice. Weigh all the options and decide which is best for YOU. You still have time to get another opinion if it will give you peace of mind!
Rita
0 -
lindy323- I was in your exact same shoes a few weeks ago and it is torture. My Onc initially chose TC for me. After much research, I was fearful of the possible permanent side effects. The ladies here were so helpful. Every person's cancer is unique. Even my Onc could NOT tell me which chemo was best. She actually said "chemo is an art, not a science". I do know that Sloane Kettering and Dana Farber still use CMF. For me, I finally chose CMF when I asked my Onc if her TC would be more effective and she answered "there is no proof that is is". When you get your Oncotype score back, you will be able to have all your facts to help you decide. I found the cancer math site very, very helpful. Just google "cancer math", you will find it. You are able to plug in every detail (age, estrogen receptor, menopause etc...) Then you can "play" by plugging in different chemo regimens, hormone therapy (or not), and it will project the different outcomes. It sounds like you have enough time to really sort through this, and be sure of your decision. Stay strong and just keep moving in the right direction.
0 -
lindy 323- Another thing I found out is that the Oncs and hospitals make a LOT more money on the newer chemos (probably still under patents). I think someone said $30,000 for TC versus $300 per treatment for CMF. I might be wrong about the exact dollar amount, but for sure, the newer ones are money makers. I hate to think this is about profits, but it could be a factor in why Oncs choose certain chemo regimens.
Any of you ladies who get your insurance statements have any real dollar figures for your CMF insusions? I bet we can get some of the ladies on TC and other regimens to reveal theirs. I would find it an interesting survey.
0 -
I would very interested to know the dollar amounts too. Anyone willing to help provide info?
0 -
Just bumping up our thread on this Sunday morning and hoping that everyone is doing well and enjoy these summer days!
0 -
I think it's unfair to oncologists to suggest that they are choosing one regimen over another based on profit. I looked back at my bills for CMF treatments vs AC treatments and certainly the AC treatments cost more, in part because of the fact that Adriamycin (doxorubicin) is a much more expensive drug than methotrexate and fluorouracil combined, but also because of the strong and very expensive anti-emetic prescribed along with the AC. I know my oncologist put a lot of thought into deciding which regimen she would use. I know factors she considered were tumor pathology, node involvement, past history, age, menopausal status and family history. I would be highly surprised if cost of the drugs played any role in the decision.
0 -
Mary- I certainly am not saying Oncologists would choose a particular chemo ONLY based on profit. However, I know that doctors, hospitals and other medical facilities are struggling financially. We just had St. Vincent's Hospital close here in NYC after more than 100 years because they could not pay their bills. The financial incentive for doctors to prescribe certain drugs is just one small part of the huge puzzle. Knowing that it MIGHT be a factor, motivated me to ask whether other chemo regimens could be comparable. MY motivation was to find comparable outcome with lower permanent SE. My Onc never even offered CMF to me, though it is still used at Sloan and Dana Farber.
0 -
I went in Friday to start my 5th cycle. Dr asked me how I was doing..and I broke down in tears. I told him that I am just tired of doing chemo and want to quit. I asked if I were to quit, what are the risks (% wise)....and he said "Janina, I work for you and want what makes you happy". He said "Chemo is most effective the first 2-3 treatments (cycles), you have done 4 cycles, so you have already benefited for the most part from the chemo". He looked at the graph, my diagnosis, and then went online and pulled some numbers....and looked at me and said "your reoccurence rate doesn't change at all if you want to quit now...it will be the same as it would be if you complete all six cycles". WHOO-HOO!! I cried tears of happiness! I feel I regained my life back in that very minute. I go for my radiation appointment tomorrow to get that all planned out.
Funny, I feel like a whole new person already. Dr did say that my hair should start filling in in about 2 weeks....so counting down. I probably thinned about 40-50% hair...and had thin hair to start with.
I will say to all newcomers of CMF. It is very doable. I had no side effects at all until after my 3rd cycle, the fatigue kicked in. I am very active, work-out and play soccer...but definitely needed a nap after 3rd month. I was more depressed about the hair thinning if anything. It started thinning afer 2nd cycle and continued. I do have a 10% reoccurence rate..but Dr said he really doubts I will see bc again. I wish his words were GOLD! lol!
Best to all you ladies. I will check in from time to time to read and see how everyone is doing and coming along.
0 -
Wahoo Janina, you are done!
Cyber hugs
Mandy
0 -
Yeah, Yeah, Yeah Janina! So happy for you that you were able to move on. Wish you the best in radiation...for me, it went fine and only slight discoloration on my breast and underarm. It was just a little time consuming since it was an every day thing. Wishing you all the best and we're all praying that bc never darkens our doors again
! lindy323, I can't add any more than all of the ladies have already said but I would strongly suggest taking your time and being your own advocate for whatever you choose. Don't just agree with whatever is suggested for you without researching exactly what the drugs can and will do to your body. Took me a while to decide on chemo regiment that I chose and I'm still happy that I went with CMF. It's very doable and I've talked to a lot of ladies that are still around after 20 + years that used it. It's tried and true.....for me, it was all about the risks of the toxins that would be going in my body, not that any of them are great but CMF was by far the less of the two evils that I was offered...
Good luck to you and once you've made your decision, you'll be amazed at how much that will calm you. A very wise lady on this thread told me just that and she was so right......I'm was very thankful to have all these ladies of this thread on my side before, during and after.....they were a God send to me. Please know that you have tons of support on here and are always around to answer questions.
0 -
Hi, Looks like I will be starting CMF x 6 next week. I thought I was prepared, now getting nervous again and I'm wondering what should I bring to the first treatment? If anyone could help me get a list of what to bring I would be grateful. I think I have pre-chemo-brain and I'm having trouble getting organized...Thanks for your help!
Congratuations Jannina!!
0 -
Lordy, I am out of the loop on here! Hello to all the new folks. I'm sorry you have to be here, but you're in good hands on this board and you will do GREAT thru your CMF treatments. I finished MY LAST CHEMO (#8) on June 7th and I already went for my initial planning CT for rads. I go again tomorrow for my "dry run" to make sure the plan they have for me lines up and to get my lil' dot tattoos and then I start on Thursday with the real deal. I'm so excited to be getting that underway! CMF was kind to me. I shed my hair only slightly more than normal and I only noticed that. I wasn't a happy camper the week of chemo, won't lie, but just because I didn't feel like me. I felt rundown, a little nauseous, just icky like I was coming down with something. But, I made it through with great blood counts...never had to skip a chemo or get any injections to help with my counts, so I consider myself SUPER lucky! Hope all of you continue to feel well and those of you starting experience CMF as I did!
Mary!!! I lost your last email to me. It's been nutty here. Hope you're doing well with the MT stuff if you decided to go with Career Step! I will email ya back...but if there's any questions you've been waiting for an answer to...email me back! So sorry about that. I'm usually MUCH better about such things.
And Janina....YAY!!!!!!
0 -
For you ladies that lost hair, did you notice if it came out all over, or just in spots?
I noticed while doing in my hair this morning, that it harder to cover up the area in the back where I have a cowlick. I really have to work to get the hair in just the right spot to cover it, then I have to use hairspry on it to keep in it place.
I should also get into the habit of wearing a scarf or hat when I'm going to be out in the sun any length of time; I notice that part of my scalp looking a little red.
Just had CMF #5 on Tuesday; next one is July 13th.
0 -
Beanius.........welcome to our thread. There won't be alot that you'll need to take for your first chemo. The nurses will be talking to you alot......explaining things as they go. They'll probably also tell you things to do to make the experience better. Usually the actual chemo is pretty uneventful, which is good. Since they usually administer the drugs a little slower than usual on the first time, you may want to take a few snacks. I took some cheese and crackers to get me through. They did bring around some other snacks at our chemo center, too. Be sure to ask for ice chips while getting the treatments. This will help prevent mouth sores. Just suck on the ice or chew it while they're giving you the chemo. You may also want to bring something to read to help pass the time. I know it is scary. I was so scared that I made myself sick before I ever got there, but really, the actual treatment was pretty ho-hum! Hugs to you!
Rita
0 -
Judy1973 - Congratulations to you for finishing chemo - hurray! Hope all goes well for the first rads, I've heard it's not too bad after chemo. Thanks for your encouragement, it is much appreciated!
Mom2acat - I think your idea for wearing a scarf or hat is good. I'm sorry I don't know about hair loss yet. How many treatments do you get altogether? Are you almost through?
Ritajean - Thanks for the welcome here! I so much appreciate the encouraging words - ho hum sounds really fun!!!
0 -
Beanius, welcome! This is such a wonderful group of ladies and Rita has already given you great advice so I just wanted to say welcome and good luck with your treatments.
Mom2acat, on hair loss....mine only thinned but it thinned all over. I didn't have one spot except for in the front where my part was that I felt that it was noticeable but I think it was mostly me being so self conscious over it already. I think a scarf is a great idea to keep from sunburning too badly.....
0 -
Well, I scored a 19 on my onco test which means I have a 12% chance of recurrance with Tamoxifen alone for 5 years. I talked with my onco and she flat out refused to treat me with CMF - even if I would agree to that or nothing. The only reason...she said it's just as toxic as T/C and will be a longer course. I said, "I realize you're the Dr, but I out rank you in decision making". I'm sure she wasn't thrilled. Can't help but wonder if it's profit related.
Anyway, I would have probably done the CMF, but am thinking of just going with the Tamoxifen now. I'm tired and just want to get on with my life. Maybe I will get a third opinion, but I'll have to go out of town since all onc's in my town work at this treatment center which will not use CMF. We'll see, have alot of thinking to do yet.
0
