CMF Question
Comments
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I forgot, someone did mention that before.
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Hi friends, Hope everyone is feeling fine and keeping cool. I have a question... I had my 6th tx a week ago, I feel like it hit me with a ton of bricks. Has anyone felt real tired as the tx have gone along? Also, my hair is dhedding a lot it also looka very dry, ratty looking. I cut it shorter a while ago i'm wondering should I keep trimming it, or will it fall out worse as the last two tx progress? I meet with the RO tomorrow. Hopefully I will be be able to start three weeks aafter the last tx. Hoping so bad bc I have a vacation planned in October, about a week or do after last rad tx. Can anyone tell me what cones after Rad tx and have you had any tests during rsds? Take care Patty
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Patty, It is quite common to feel increasing fatigue as the treatments progress because the chemo is cumulative. When you got your second treatment, some of the first treatment was still in your body. When you go the third treatments, there was a little more of the treatment remaining, etc.
As for the radiation, I found it much easier than the chemo except that you have to show up everyday for the radiation treatment. After my rads, I received no scans.
Each oncologist has their own feelings on the scans. Some will scan after the chemo and also after the rads. Others, like mine, prefer to scan only when symptoms warrant a scan. I also had some fatigue with the rads but most of it came the last week an I recovered quickly from it. I imagine that your basic treatment will be complete when the rads are done. Since you are Er and Pr +, they will probably put you on Tamoxifin, Arimidex, or Femara pills for a few years. They help to control the estrogen in your body, which often contributes to cancer. I take the Arimidex because I was post menapausal at diagnosis.Hugs to you, dear gal! Hang in there. You are on the downward stretch now!
Rita
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Patty,
I second everything that Ritajean has said. As the treatments go on, you may become more fatigued. After my 8th tx, I could hardly walk around the block. But the good news is that the fatigue will lift. I had my last of 8 tx in late May and in July took a trip to Europe. I didn't stay out all night, but I certainly was able to walk around Paris and London and to enjoy myself. I had a pedometer and was walking 6 and 7 miles every day. Since I had rads while I was having chemo, I can't tell if the rads will make you more tired. I found rads easier in terms of side effects---I used the creams that my rads onc suggested and I never had any skin problems. My hair did look pretty ratty after the 4th tx and I even had scalp itching and tingling---but no more fell out....I think I was more aware of the thinning than anyone else.
So hang in there---the end is in sight.
Cyber hugs
Mandy
PS I did not have any scans during treatment---the fall after, I had a bone density test and then just follow up with mamography and mri.
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Patty- I second and third what RitaJean and Mandy said. I bounced back from chemo pretty quickly (and my hair stopped thinning and began growing in right away). Rads was tedious and seemed never-ending as it was every single day. I had some fatigue, but it seemed to go quickly after quick nap. It wasn't like the chemo fatigue where I didn't feel like moving all day long. My RO warned me that the fatigue from rads could last 6 months after completion, but I did not find that to be the case. I am now 8 months out from rads and feel almost back to normal. I do get winded climbing up steep hills and trails, but I don't know if that is due to treatment, age, or the extra 25 pounds I never seem to be able to get rid of.
As I was mammo occult (BC did not visualize on mammo), I had a mammo plus US after rads. I am scheduled for an MRI six months after that.
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Hi everyone! It's been over a week since my last tx and I played 18 holes today without any fatigue. Haven't experienced fatigue from CMF, just hair thinning and some GI problems. Am not having rads, but understand it causes fatigue.
My hair is a mess -- dry, brittle like straw! Hope it begins to grow again soon. Have had many compliments on my wig so I plan to wear my hair in its style.
Patty -- You're almost finished with CMF. YaY! The other ladies know about any SE's from rads.
Too Many - My onc put me on CMF because adriamycin can damage the heart he said.
Am having blood work tomorrow which will probably show low WC. Will find out what plans the onc has for me. I know he's putting me on tamoxifen at some point so am worried about any SE's from that.
Later....
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Good for you, golfergrandma! I'm so glad to hear that you're back on the golf course! Let us know what's next for you and get out there and enjoy the links!
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Hi ladies, The last few days I have been having a little burning sensation while urinating. Also a mild discomfort right above pubic area. I know it ia from the CMF, I was wondering if anyone else had this and what did you do for it? Did it delay tx?
Have a great weekend
Patty0 -
I had gotten urinary tract infections while on CMF. I had to take antibiotics. Notify the doctor so that they can get a UA.
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I had my last CMF tx on Tuesday. It seemed to have made me really tired and irritable. I've been feeling really miserable for the last few days. I don't get it? The CMF has always made me tired; but not this tired and uncomfortable.
I could use some energy. *grumble* At least, I get three weeks off of chemo before starting the Abraxane; and hopefully, I will not need the steroid premedication anymore!
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Patty: I think the burning sensation is from the Cytoxan. I understand that if the residue is anyway concentrated in the urine, it may burn the skin in the genital area. This is why it's so imporant to drink lots of water esp in the first few days after treatment.
Someone mentioned this tip in the one of the starting treatment threads. Keep a plastic squirt bottle by the loo and use it during the first week after treatment. I did that and would fill that with warm water and squirt it on myself everytime after I urinated. I wished for a bidet.
In your case, if the burning is bad, it's possible that you have cystitis. You should call your treatment center. They have someone on call 24 hours a day.
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Patty:I'd do what TooManyCocktails and MaryNY suggest--notify your doctor of the burning sensation and the pain in the pubic area. You may have a bladder infection and will need some antibiotics for it. In the meantime, keep drinking fluids and use MaryNY's squirt bottle technique. As my chemo went on, I couldn't stand the taste of water so if that is preventing you from drinking enough, try some aranciata or liminata or flavored sparkling water or whatever tastes good to you.
TooManyCocktails: hang in there. The chemo effect is cumulative so that is why you are more tired after this chemo than the one before. Just give in and let your body rest and you'll be up and running soon enough.
Wishing everyone a great weekend.
Hugs
Mandy
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Patty -I read urinary infections are possible with CMF so you should definitely contact your onc and probably get some antibiotics.
Had blood work today and talked to my onc. Have an appt. for a "survivorship meeting" with the nurse practitioner at the cancer center at the end of Aug to discuss future plans. Am starting tamoxifen in Sept. My WC was 2900 today so it needs to build up. Nurse had trouble with a vein. My veins are about gone now so it's so good that I'm finished with tx. Still have bruises from the blown veins from two wks ago with my last tx.
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Golfergrandma: Congratulations on coming through chemo smiling! I think you'll find your WBC will bounce back pretty quickly. But they will keep an eye on your bloodwork for a while to make sure everything is normal. I'm on Tamoxifen and apart from hot flashes don't find it bad. At my last onc visit my bloodwork indicated that I'm prob now in permanent menopause, so onc is suggesting the she might switch me to an AI. I'm not sure I want to do that.
TooManyCocktails: Glad to see you have the CMF behind you too. I had a sense of elation when I finished CMF. I still had radiation ahead of me but knew that was going to be easy by comparison. But in your case you're still facing Abraxane and you're probably anxious about that. I hope they dose you up well with Benadryl or something like that before the first treatment. But in the meantime, I hope you get some down time and have at least a couple of weeks without doctors' appointments.
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I hope everyone had a great weekend. I had my 5-year-old grandson all last week and we took him back to Sikeston, MO to meet his parents on Saturday. I must admit that I am one tired grandma, but our week was great!
I hope you gals in treatment are doing fine. Hugs to all of you.
Rita
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Hello to all, just wanted to let you know right now im doing #7 ! My hair has been sheddin a lot, i dont care but my plumber does lol. Cant tell you how many bottles of drano we used since this started. I dont know why but I think this one will be a hard hitting tx. Anyone care to comment? Have a good day. Patty
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Hi there..I echo all the above who said the tiredness was cumulative..and the drinking of tons of water to avoid the UTC problems..sending hugs...I finished my six months of CMF chemo ten years ago now...i lost over 50 percent of my hair on my head and almost all the others..the hair under my arms never came back ( one blessing) but my eyelashes only are about half as long or thick..with summer here remember more water
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Hello, lovely ladies! I am new at this site, and am not particularly good at navigating around these sites. (I've been known to send myself messages!) I just had BMX 6/29/11, no reconstruction planned. (My newest motto: Better Flat Than Fatal!
). Right breast, sentinel node biopsy (negative! Yea!); diagnosed Stage 1; Intermediate Grade; left breast axillary w/2 positive nodes, diagnosed Stage 2, Intermediate Grade. Frankly, I was pleased w/this diagnosis and considered myself lucky to be only at Stage 1 & Stage 2, and intermediate grade. Therefore, I was terribly surprised and upset when my onco told me she was recommending Dose Dense chemo, (followed by radiation, & the anit-hormone pill for 5-10 years). She said the 2 nodes, and the fact that I got b.c. in both breasts (only 3-4% do) makes me high risk for recurrence. I balked at the Dose Dense, which is given in a 2 week cycle instead of the more standard 3 week. It is known to be harder on patients and have more serious side effects. It just seems like overkill to me, considering the onco told me "for all intents & purposes, we consider you cancer free right now ... but, maybe there's something going on systemically we don't know about. The chemo is like "insurance."
Okay; I get that ... but Dose Dense? I did a lot of research and did not like what I read; DD seems more like The Guns of Navarone than mere "insurance!". So I went back w/hubby to tell her all of my concerns; I was especially concerned about the possible long-term side effect of acute myeloid leukemia, a disease that killed my husband's only sibling. The Dose Dense is supposed to give us a 6% better chance at non-recurrence within 10 years, but the AML odds are 3%; that didn't seem like a big enough benefit vs risk margin for me!
My onco was very understanding; she has given me 3 options, one of which is CMF, and I am 99% sure that is what I'm going to do. I have to tell her by Aug. 15th. My treatment won't start until around Sept. 1, 2011. CMF apparently doesn't have the neuropathy side effects that Dose Dense has, and none of this AML stuff! I must admit I'm a little freaked out by all of this, but being able to come on to a website like this and hear from other women who are going through it or have gone through it is unmeasurably helpful! I like that CMF is referred to as "Chemo Lite!" I think compared to Dose Dense, it really is!
Do any of you have any particular opinions re: Dose Dense vs CMF? I also have had fibromyalgia for over 20 years, and would be very interested in hearing from anyone else who has FMS and is undergoing chemo. Thanks again, Ladies; I hope to get to know some of your better here as I start on this new journey.
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Welcome cydsong! I too am bilateral, but my BC's were 10 years apart. #1 was h2n+ and then, 10 years later when I was on arimidex, was diagnosed with ER PR+ cancer in the other breast. I was on AC with #1 but this time was on CMF "lite" every 3 weeks for 6 months. Just finished 3 weeks ago. The onc believed this tx would be sufficient since all cancer was removed. My onctype was 24. What was yours? I will be put on tamoxifen starting in Sept. - probably for the rest of my life? This is a wonderful site. The ladies have been soooo helpful! Later....
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Hi cydsong!
And welcome to the place no one really wants to be. I am sure you will get lots of advice from different women once they see you have posted.
I can't tell you about what side effects you will have from chemo since everyone is different. I believe that we may have a member of this thread who had prior issues with neuropathy and who can share her experience. I was able to use acupuncture to reduce some of my side effects and I know others have been successful with acupuncture as well. So that might be something for you to consider. I went once a week during the 5 of the 6 months that I had chemo--I had tx every 3 weeks for 8 doses. I did not go for the first month because i had not heard of using acupuncture for chemo side effects. In the end, I am very glad I did acupuncture because for me it worked very well.
Making the decision is one of the hardest parts of treatment. Once the treatment began, I actually felt relieved.
All the best,
Mandy
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Hi cydsong and welcome. Your diagnosis doesn't mention your HER2 status, so I'm presuming you're HER2 negative.
Dose dense is not a particular drug regimen, it's is a chemotherapy treatment plan in which drugs are given with less time between treatments than in a standard chemotherapy treatment plan. This shorter timing can be used with TC, AC and CMF. I believe there are some studies that show it cn be more effective. There is also the advantage that the treatment is over much quicker. So eight regular treatments with CMF would take six months, eight dose-dense treatments of CMF would only take four months.
I don't know anything about AML. The number you quoted of a 3% risk sounds really high. It would be worth finding out if this increased risk is associated with particular chemotherapy drugs and whether those drugs are used in BC treatment.
I had/have an underlying autoimmune disorder (transverse myelitis) which left me with some residual neuropathy. This was a concern to me in deciding which chemo regimen would be least likely to cause issues. I consulted with four oncologists before making the decision to have AC. Initially I was supposed to have six cycles, but I was finding it difficult. After four cycles of AC, onc switched me to CMF and I had four cycles of that. If you want to read my earlier posts about how I made the chemo decision, trying doing a search for my member name and look for posts around Sept/Oct 2009.
The drugs to avoid if you have reason to suspect that you have an increased likelikhood to develop neuropathy are the taxanes (Taxol and Taxotere).
With two positive nodes, I think most oncologists are going to recommend chemo for you.
I'm sure there are others on this board who've gone through treatment with fibromyalgia -- try searching on that term (search button is at the top right of the page).
This is a tough decision for you. If you haven't already done so, you might want to get a second opinion. I learned a little from each consult I had.
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sydsong - I did not experience any neuropathy during CMF. In fact, I tolerated it quite well, except for hair loss and some GI problems. My energy level remained high, except after the 1st tx. You have a difficult decision and I agree with the others that you might perhaps want to get a second opinion. Good luck!
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Hi cydsong!
I just wanted to add that I agree with MaryNY and golftergrandma...you may find getting a second or even a third opinion about your options to be helpful. I went out of state to another cancer center and got a very different opinion about chemo....so different you'd have thought it was another disease. So I went to a third oncologist and finally was able to figure things out. For me CMF was doable and I am glad that I tried it.
Hugs to all and especially to newcomer cydsong.
Mandy
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Welcome cydsong. I agree with the other gals. I think most oncs would prescribe chemo since you have positive nodes. If you have any question at all about which chemo is best for you, please seek out another opinion so you are well-versed and able to make a good decision.
Let us know what you decide. We will be here for you as you make your journey. Once the decision is made, you will have more peace of mind. I think that the decision -making process was almost as hard as the treatments!
Hugs to you! This is very doable....it's just not something that we prefer to do, but it can be done and there is life after chemo treatments.
Rita
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Cydsong- Welcome to the group, first let me tell you this group of women here are wonderful. Where else can you find people who have been there and done that. The people in this group can tell us what they experienced and answer any questions you may have.I agree with Ritajean, seek out a second opinion, that is what I did I was terrified. I can also say that chemo is doable. Write down all your questions for the onc and ask away. The first Dr. I went to handed me a few papers and told me to go home and decide. I felt like I was being asked if I wanted a sunroof or not when buying a car. The second Dr. sat with me for over an hour we loojed at severl options, she also gave me her input. Good luck to you, we are all here for you. -Patty
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Welcome Cydsong!! This is definitely a club that none of us want to join but what a blessing to have others to help us along the way. I felt so blessed when I found this group and the ladies here really do ROCK! Everyone will be here to help in any way we can through this journey and the others are so right....making the decision is so HARD!
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So is everything good for you, cabmom? I've missed ya!
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Hey Ritajean
, thank you! I've missed you too! Yes and no, the ENT specialist found 2 masses in my thyroid when he did an ultrasound, then did a biopsy but hit an artery on the 2nd stick so he QUIT! Unfortunately, he did not give the pathologist enough to work with so now I have to go through it again. I'm back in the midwest now since school is about to start so now I have to find another specialist. Gosh, it's always SOMETHING 
BUT other than that and I'm still praying that it's NOTHING, I'm doing fine. Hope you're doing well and enjoying your summer! I'm getting back into golf again since I got back home and I'm LOVING it.....of couse! 0 -
Hi Cydsong,
I am starting dose-dense CMF next week. My onc seems to think it has similar capabilities as straight-up AC but with less side effects. Despite really favorable pathology, my Oncotype score was 21 (gray area) so I chose to move forward with chemo... I feel like anything I can do to potentially cup down on a chance of relapse is worth doing. Let us know what you decide!
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Sara - Welcome to the group! I just finished 8 tx of CMF every 3 weeks. I mentioned my onctype was 24 but it was 19 also a gray area. I hope the CMF "lite" I had will be sufficient to prevent a recurrence. I certainly hope so!
Cabmom - Good to hear from you! Hope and pray your "something" turns out to be nothing!
Cydsong - Keep us all informed about your choice of tx.
Am off to play golf today with my league. The weather is finally getting a little cooler!
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