CMF Question
Comments
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Packy, I'd also be interested in what a dermatolgist says. Curveball, I agree about the stress adding to the wrinkles but I think it is likely the reduction in our estrogen levels caused by CMF and other treatments that contributes to the aging effect.
Hugs
Mandy
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@Mandy1313, I never thought of that but I bet you're right.
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I finished cmf 1 month ago! After each infusion I had a differnet experience. When the onocologist removed alloxi from the drips, an antinauasea medicene...headaches disappeared...I threw up once after sessions 6 and 7...lost a lot if hair...eyelashes, eyebrows, head..makes me look tired and older...but will grow back. Tired, needed to eat to get rid of horrid taste in mouth..werthers hard candy was my saving grace! not the worst experience, worth the trade off
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Hi all, it's been 5 weeks since I finished my last CMF treatment. Feeling good but hair is still slightly shedding. I started AI's 2 weeks ago and am having hot flashes (thought I was done with that years ago) and some trouble sleeping. Hope that goes away with time.
Has anyone on AI's had any trouble with vaginal irritation? May not be related, but just wondering? Well, everyone enjoy your upcoming weekend and feel well. Hugs to all.0 -
smva...........AI's can cause vaginal dryness. There are several over-the-counter things that can help with this.
I'm finding the wrinkle conversation interesting. Mandy, you may be right here. Estrogen is the natural lubricant for our bodies. The lack of it probably could cause wrinkles and aging. I never thought of that. I just figured that I'd gotten older!
Welcome to our thread, curveball.
Come back often and post. There's lots of neat, informed ladies on here who are willing to help and offer encouragement.0 -
@ritajean, thanks for your kind welcome. I'll certainly come back, but if the treatment keeps up like it has been going so far, you will all get mighty bored reading, "another treatment yesterday, the side effects are still minimal" (which is my report for this week). I did get my hair cut really short on Tuesday,so now I have a TWA (teeny weeny Afro). I've had 3 treatments so far and there hasn't been any shedding I can notice. I'm thinking of changing over to natural hair care as it grows out, rather than straightening my hair as formerly, because of the parabens that are in so many hair care products.
Can someone else who had the same regimen I'm on (oral Cytoxan daily + weekly M & F infusion, continuously) give me an idea how long it took before you started to notice any thinning?
Is anyone on the thread still in the middle of CMF treatment, or has everyone else finished up?
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Curveball-I am on the oral cytoxan (14 days each regimen) and get the other in infusions on the 1st and 8th day of each regimen. I then get 14 days off. I started losing my hair after week 3. One day it was fine and the next it was coming out by the handfuls. It was devistating. I then lost my nose hairs which really sucks because I have a sinus infection along with an ear infection. I have not lost the hair on my legs though, bummer.
Pupic hairs are just about gone. No need for a bikini wax this summer 
. I had a lot of nausea the first round, but not much since. I do have to pee all the dam time though. It really irritates the bladder. I am tired, but can't sleep. How crazy is that. How are you feeling so far. If you posted it earlier, sorry I am so far behind. I have been working a lot and just can't keep up.I have 3 more regimens to go after this one, so I am guessing around Oct. 17th I will be done. How long is your chemo for?
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I am on oral cytoxan plus weekly M & F continously for 26 cycles or maybe only 24, I'm not quite sure about that. Are you doing 6 cycles in total? If I'm thinking straight, I'm about 3 months behind you--I expect to finish up next Jan 17, give or take a week.
I had infusion #3 this past Wednesday, and so far it doesn't seem to me any more hair is coming out when I comb than ordinarily would. Maybe with the two weeks on/two off you get a higher dose of medication at any one time than I do, and it affected your hair earlier in treatment for that reason. So far I have had only minimal side effects. I get two ondansetron before my infusion and haven't had any nausea or other digestive upsets after my treatment. Do they give you anything before your infusion to prevent nausea? If not, maybe that would help. If you are already getting something, that med may not be working for you, but perhaps a different one would. My sleep is a little disturbed, but I think it's mostly from hot flashes (which I had before I started treatment) and waking up to use the loo. As advised, I have been drinking lots of fluids to dilute the meds and prevent them from sitting in the bladder too long, with predictable results. Are you taking a steroid before your infusion? I did the first week as there was a possibility I would change my mind and do the TC after all, but my onc said with CMF I didn't need to take it. I think that might have kept me awake some too.
I can't imagine working full time during treatment. I arranged with my boss even before my surgery to cut my hours in half and telecommute instead of coming in to the office. That has been such a help! There is so much less distraction working at home or at a library and I can choose my hours to an even greater extent than before (and my boss gave me quite a long leash in that area even before I got cancer). I sometimes go in to the office on Saturday and it is so quiet I get twice as much done as I ever did working when everyone else is there. Besides, for some reason I don't want to see the people at work while I'm in treatment. Don't know why, but I would feel really weird being there. After two months of telecommuting and working only half hours, I am so spoiled now that I'd never willingly go back to work full time, and whoopee! I don't need to. By the time I finish chemo, reconstructive surgery and recover from that, it will likely be May (or perhaps even later depending on the PS's schedule and my white blood count) and that's about when I was planning to retire anyway.
Best wishes for successful treatment and negligible side effects. Hang in there! only 3 more to go.
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Curveball-It is the cytoxan that will cause the hair to fall out. Sinus issues is my biggest side effect. They hurt all the time. I do get steroids at infusions along with Zofran. I don't have much nausea to speak of. Constipation is another issue, but now that I am on anti-biotics I have the opposite issue. I am glad I took today off from work. Need the bathroom a lot today.. Working full time is hard. I get tired easier. Do you have a port? I don't and I am glad. I have 7 more infusions total. How have your blood counts been. Mine have been so good that he only checks them prior to infusions. You are lucky to have a great boss. I work as a pastry chef, so I have to go in.
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Hi Dianarose,
It's my understanding that the steroids before infusion are an anti-nausea measure. If nausea isn't a problem for you, you might ask your doctor if you could skip the steroid on one infusion and see if that helps you sleep better. So far I haven't had any digestive side effects or sinus pain. I do think I might be a bit more tired than usual. Maybe it's because of waking up during the night. Then again, it might just be laziness!
I don't have a port, and so far that is working well. I don't know if I have enough good veins to get through the entire course of chemo without one. I have only had two blood counts, one before starting and one after the second week. Both were normal. I get checked again the end of this month.
Working full time during treatment must be very hard. I had a job in a bakery once, and since I'm a night owl it was very hard for me to get up so early. That's the only job I've ever been fired from--I overslept once too often.
Does seven more infusions mean one more this week, two weeks off, then three more two on/two off cycles? Do you plan on reconstructive surgery once you finish chemo?
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Hi curveball- the sinus problems have been so bad today that I didn't get out of bed until 5pm other than to use the bathroom. The anti-biotics sure did solve the constipation problem. I feel like crap today. I mostly wake up due to having to pee in the night. You are correct in how my regimen runs. I do have TE's and hope to get my exchange in May of next yr. I have to do radiation after chemo so I want to give them plenty of time to heal. I only want to do it once.
How many weeks since you started your chemo. I didn't have issues until close to the second month. Chemo is cummilative. Not sure if I spelled that right. I hope you continue to feel good. Have a great night.
Diana rose
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Hi Dianarose,
one of the ladies early in the thread also got sinus headaches from the Cytoxan. She said it really helped to have the drip slowed down. She also took an OTC pain reliever before the infusion and said that helped too. Next Wednesday will be my fourth infusion, so I'm just finishing up the first month.
Have a good sleep!
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Hi, Curveball,
I, too, am on the same 6 month CMF regimen and I am from your part of the country. I think the 6 month regimen is more common out here.
My 12th weekly infusion is Friday. Yay! Halfway through. I then get a 3 week break before starting rads for 6 weeks. I get another break after rads and start the next 12 infusions in November. I won't be done until mid-January.
Side effects: Tired! I am so tired. But not really sleepy-tired, just miserable tired. I don't seem to have lost much hair on my head, if any. Other places, yes. Stomach upset, both kinds, yes. No appetite, yes. Lost weight, NO! I feel so lucky that it hasn't been worse. You will do fine! It's just a long haul.
I will be getting DIEP eventually. I need to lose some weight after chemo first, but not too much belly fat! We need it for fantastic, lifelike foobs!0 -
@Jeannie57, we will be finishing up about the same time. There was some chance I would need to do rads even with MX because of the tumor location, but the surgeon was able to get enough of a margin so it wasn't required. I'm so relieved about that--I have kind of a phobia about RT.
As for weight, I have the opposite problem, I don't want to get any thinner, which is about 5 lbs under my usual weight. I think I worried it off between diagnosis and surgery, and also had a nasty bout of intestinal flu back in the spring--hardly ate anything for three days. The first PS I consulted said I was too thin for any kind of flap surgery, but the second PS I spoke with (who actually does microsurgery--the first one doesn't) said I had an adequate donor site, so I am planning on DIEP or muscle sparing TRAM. So far, my weight has held steady since surgery.
I was really sleepy and took a long nap this afternoon, but I think that was more from the heat than anything to do with chemo. Thank goodness it's expected to start cooling off tomorrow!
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Curveball- I don't get any of the chemo in a drip. I get the cytoxan in pill for and the other 2 are pushed through the IV. I have been using saline solution the past few days and it has helped. I am also on some anti-biotics.
I am glad Jeannie jump on the thread as she is doing the same regimen as you. I know all of us are looking forward to next summer.
We will all be on the hormonal roller coaster by then. 0 -
@Dianarose, I had a different nurse last week, and even though I get the M & F in a push rather than a drip, the nurse I had the first two times administered it very slowly while the one last week gave it quite rapidly. I didn't have any ill effects from the speedy push, but maybe you would benefit if your push went in more slowly, or even only half at a time with a delay in between. I'm just guessing, but there seems to be some correspondence between speed of delivery and those sinus headaches, at least for some people. It can't hurt to ask about it, eh?
What hormonal roller coaster is that, tamoxifen/AIs? There's some uncertainty about my status because of [omitted due to TMI]. I need to verify this with my gynecologist, but if I read my blood test right, I'm already menopausal. Dr F (oncologist) says he plans to put me on tamoxifen for 2 years then switch to AI, but if I'm already post-menopausal, I think I'll look into going straight onto an AI.
Ahhh! so much cooler today.
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Hello all,
I was wondering if anyone has heard of someone going thru six rounds of CMF and then switched to CAF? My Mom has bc and just finished her sixth tx of CMF. The onc wants her now to do two to four rounds of CAF.
This is my first post but I've read quite a bit from several threads. I just haven't seen this switch mentioned and I'm not sure if it was the original plan or is being done because he wants better results.
Thank you,
Carol0 -
Hi Carol, I've heard of people doing more than one kind of chemo and of switching types of chemo during treatment (e.g. due to a severe reaction to one of the drugs in the original regimen). I don't think I've heard of the specific sequence of chemo you are asking about, but I'm pretty new at this, so the fact that it's unfamiliar to me doesn't mean much at all. I think the oncologist would be the best person to explain why the change from one drug to the other. Was this explained to your mom?
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Hi Carol:
I did four rounds of AC, then four rounds of CMF. My oncologist initially wanted me to do AC-T (four rounds of AC, followed by Taxol) but I have an underlying medical condition which might have been affected by the Taxol so she decided against the that and had me follow upp with CMF instead.
What your mom is having sounds almost like the reverse of what I had. I do think it was easier on me starting with the AC (which is harder to do than CMF) and then finish with CMF, but your mom's oncologist likely has his reasons. Four or six rounds of AC on their own or followed by a taxane (Taxol/Taxotere) is more typical. Also, I've notice that CAF and CEF are more common in Canads and the UK than in the US.
How long did the six CMF treatments take? -- was she treated every two weeks (dose-dense) or every three weeks? Has Tamoxifen been mentioned? There is a test to see how well a person metabolizes Tamoxifen. If the test shows the person is a poor metabolizer, then chemo becomes more important.
It must be tough on your mother if she thought she was coming to the end of treatment and then additional treatments were sprung on her.
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Hi Ladies,
Thank you for responding. My Mom has a tumor pushing thru the chest wall that the dr is trying to shrink down enough to hopefully operate. It is not in the lymph nodes and she has no mets which is good. She has been having the CMF every three weeks for six sessions now. I don't recall him mentioning in the beginning that his plan was to try different regimens. She has tolerated it well so far with just the usual SEs. I've heard of it referred to as chemo-lite. Her tumor has changed a bit from being hard to a bit more squishy for lack of a better term but hasn't really gotten much smaller. I think he wants it to shrink even more so next time she will do CAF instead.
I'm just concerned that this cancer is stronger than the chemo and will the switch to the Adriamycin help shrink it more. My Mom is 79 and prior to chemo felt and acted like a 30 year old. Now this chemo is tiring her out. I just want o see light at the end of the tunnel for her. I thought by now we would be talking about an operation or radiation.
Thank you for your help. I really appreciate it. All of you ladies I have been reading for awhile are so brave. I wish you the best and will say a special prayer for you all.
Carol0 -
So she's having neoadjuvant chemotherapy. I think everyone on this thread had or is having adjuvant chemo (surgery first, then chemo). I think it's typical during neoadjuvant chemo to do a scan midway through to see how well the drugs are working on shrinking the tumor. One big advantage of neoadjuvant chemo is that one can see whether it's working or not. It seems that in your mom's case CMF has affected the tumor but is not working as well as the onc would like. I'm guessing since your mom is 79 the onc didn't want to start with a more aggressive treatment.
When will she have the first round of CAF? The "C" and "F" of CAF she's already had as CMF, the new agent she will be having is Adriamycin (doxorubicin) which is hard on the heart. But they will presumably check her out fully before the start and monitor her closely while she is being treated.
Has the doctor discussed surgery with you or your mom? Just wondering if because of her age, they thought the neoadjuvant chemo would shrink the tumor sufficiently so that she doesn't need surgery or that it might be possible to choose a lumpectomy over a mastectomy.
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Hi Mary,
The first CAF is three weeks away from this past Friday. I'll be taking her and staying with her that weekend to make sure she tolerates it ok. I live in Mass, and she lives upstate NY. The doctor said he will order another scan when the chemo is done. His plan apparently is to shrink it enough to operate. He said he would like it down to the size of a dot. I have felt the lump myself and it doesn't feel round, it feels like two inches long if I had to guess. She had an echocardiagram and her heart is ok, just showing signs of aging naturally.
It seems as though it's decide as he goes along and I understand they need to figure out how chemo is doing, but this is the most frustrating part of this sort of medical situation(as you all have had to go thru). This drawn out process is emotionally draining. My Mom has always been the caretaker. First my father, and then my brother who both passed away. My brother passed away right at the same time my Mom was diagnosed with this recurrence breast cancer. (she had had a normal lumpectomy with radiation in the same general area of the breast about seven years ago)
She's strong though. When I asked her how she felt about the switch in medicine, she said firmly, "Bring it on!".0 -
Carol: I know how you feel about the situation changing. I had a little of that as initially my onc said I would just have ACx4, then as I was coming to the end of that, she added the CMFx4. I had been marking off the treatment dates on a calendar but when the additional treatments were added it was hard to cope with. In your mother's case it's worse as once she finishes chemo, she still has to face surgery and possibly radiation.
When your mom is getting CAF, they may give her shots of Neulasta to boost her white cell count. It's hard to know which SE is which but I think the SEs from Neulasta were worse for me than the SEs from the chemo. I feel so sorry for her (and you) going through all of this.
Would you consider getting a second opinion? -- not necessarily to switch doctors but just to get someone else's input. The onc she is seeing may even be able to suggest another cancer center and send on her records. I was treated at MSKCC and even though I only see one oncologist, I feel I have the expertise of a team behind her decisions. She brought my case up in front of the weekly tumor board initially and again when she wanted to add the additional treatments so she had group input. Despite all that I was taken aback one day when my onc said "oh, we make it up as we go along!" That sounded so flippant and is probably true although I do know she puts a lot of thought into her decisions. When I started down the road to chemo, I did have the belief that the suggested treatment would be the same no matter which onc I went to. But I now realize that it's as much of an art as it is a science.
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Hi Mary,
We'll see how the CAF treatments go and go from there. Not quite ready for a second opinion yet and the onc appears to be handling it ok so far with her age considered. I can't help my uneasiness because this is my Mom we're talking about. This woman deserves many good free years ahead.
I feel better after talking to you and hearing about your change in regimen even if it was in reverse. My guess from how she started you off with the stronger one first is that you must be a younger woman. May I ask how you're doing now and are you on maintenance drugs? Your hospital was ranked second best in the US. We have a couple good ones in the top ten in Mass too. I wish my Mom was open to being here for awhile to get treatment.
My Mom's onc isn't sure yet if they'll even do the rads after the lumpectomy. Interestingly, tonight on the news they had a segment regarding whether rads for an older patient after lumpectomy is recommended. I hope my Mom quickly makes it thru this nasty phase in her life.0 -
Carol,
I understand how confusing and mind-boggling these changes and decisions can be. It is so important to remember that all of our cases are different. There are standard methods of treatment, but they are varied according to the situation. It sounds as if they want to reduce the tumor more before surgery, so they're going to take a different treatment route to get that accomplished. I have heard of this happening. If you are not comfortable with this, get another opinion. You and your mother need to feel good and confident about her treatment plan. Most oncologists are not insulted when somebody asks for another opinion.
Hugs to you and your mother as you sort this all out and proceed with her journey. Please keep us updated about what she decides to do and how her journey progresses.
Rita
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Hi Carol:
Yes, your mom deserves a break after all she's been through. But her "bring it on" comment makes me think she's a very strong woman.
It's three years this month since my lumpectomy (August 2009). I finished active treatment in April 2010. Then I did two years on Tamoxifen and switched to Aromasin recently. I had a follow up mammogram and breast ultrasound a week ago and everything was clear. I had been going every six months for imaging, now I don't have to go back for 12 months. I'm doing well now except for some SEs from the Aromasin, but if it's preventing a recurrence I can live with those.
Is your mom's recurrence in the same breast as her original tumor? I think if it's on the same side/similar location that was radiated before, that they won't do radiation again.
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Rita: Thank you for your support. This site is a God-send for everyone connected to bc, patients themselves as well as family. We're all in it together and will remain vigilant.
Mary: You too...thank you to you ladies who unfortunately are experienced with bc, and fortunately for newly involved people we have you for the support and knowledge.
My Mom's reoccurence is in the same breast but this time it's deep against the chest wall. My Mom neglected to do follow-ups some time after her ordeal several years ago. Her focus was on taking care of my father who had medical battles of his own, years battling colon cancer, etc. Then my brother passed away eight months ago after his own battles, very much a part of my Mom's life always over at her house and needing her assistance due to heart problems.0 -
Carol: Maybe the decision on radiation will depend on how much they can shrink it with chemo and also on whether she's a good candidate for hormonal therapy..
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I'll post again as time goes on. That's an interesting thought about hormone therapy. I wonder if she would be a candidate for that. I wish there was a minimal-effect option for her. This CAF better do the trick and get her at the point of lumpectomy. If we can just be at that point, it'll be a big sigh of relief. Even if she has to pop a pill going forward after that, that's fine.
I'll come back and post how she does with treatment #1 in a couple weeks.
Thank you again for speaking with me about this terrible disease. The knowledge shared is so helpful.
Take care,
Carol0 -
Question- for those of you who went through chemo-pause is there something they can prescribe for the dam hot flashes. I am ER positive, so not sure what they can prescribe if anything. They wake me up constantly in the night. Also did anyone experience bruising while doing cmf? I am now halfway done. It seems like it is forever though.
Hope everyone is doing ok. My neice glued some eye lashes on for me. It looks real. That's what she does for her job. Tired of the wig. It is a lot of work to keep it looking nice and it is hot.
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