CMF Question
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Hello, I have a question and am not sure where it makes sense to post it as it seems few people get CMF, so here goes:
I had a 1.1cm idc, stage 1a, grade 2, ER+/PR-, HER2-, node-negative tumor. Recently learned that my Oncotype DX score is 30 (very top of "intermediate risk") and am considering chemo, on the cusp of making a decision. I am 59 years old.
It appears after speaking with several oncologists that my absolute benefit from doing chemo is hard to calculate... but with the small tumor, possibly 2-5% benefit--they figured since the report shows recurrence range 15-24% and the test subjects include people with tumors up to 5cm, it's likely I would be on the lower end of the recurrence scale, but who really knows. I am considering 6 months of CMF.
I am trying to learn more about long-term side effects before making a final decision. I understand that I can expect short-term SEs such as some (or all) hair loss, fatigue, nausea, mouth sores, constipation and/or diarrhea. I have read that "chemo brain" or the brain fog that occurs during chemo can persist in some people, but I understand that this is true with any sort of chemo, sadly.
My online research shows that CMF carries the potential for heart damage (immediate risk and developing after treatment), liver damage, vision loss, and some small risk for leukemia. Has anybody here experienced any of that? My understanding is the side effects of CMF are about the mildest you can expect from systemic chemotherapy delivered through an IV. I know some would say CMF may be slightly less effective than the more aggressive "3rd generation" chemo regimens, however, since the benefit in my situation is slightly iffy in any case, I would forego an extra 1% benefit for a lower risk of long-term problems created by the chemo itself.
Thanks in advance for any information, I appreciate it.
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had treatment #4 on Thursday. I've made it 1/2 way... Talked to the dr about reducing the total number of treatments asking if 8 was really necessary. He acted like 6 might be ok but since I seemed to be tolerating everything great he'd try to keep me to the 8. I guess we'll see what happens.
I'm just feeling a little crazy in my head actually. My mind doesn't stop but my body is so tired. How do you deal with that side effect? Nausea hasn't been too bad so far which is great. Hope it stays that way..
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Congrats Wenrisa! You're half way there. For fatigue---how about resting? Or I found that acupuncture was energizing for me so you might try that. Hugzzzz. Mandy 1313
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Wenrisa!
WooHoo!! Halfway through! You can do this. Yes - fatigue is definitely challenging. All I can do is suggest resting when you can. See if other family members can pick up some things so you don't have to. I remember being so darned tired that I would close my office door at lunchtime and sleep for a 1/2 hour rather than eat.
You got this!
Mandy J
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Hi Wenrisa,
Half way through and it seems as though this round the nausea was not as bad as the last two times. I hope that is true. I found it curious that your MO describes you as tolerating the chemo so well, while you are telling him you are nauseous and exhausted. Well, at least you know, he would be willing to consider cutting back to 6 in case you feel really bad ( see my note below about possible interruption on my schedule). As for your mind spinning and your body being tired, I know what you mean, and the advice you are getting from your CMF sisters is wise. Listen to your body and rest, when needed. A friend who had many rounds of chemo for colon cancer described that year as the one she spent on her back! Though it will take time and effort , and I know you are busy running a household and have a little girl to take care of , it might just be worth trying acupuncture as Mandy1313 has suggested.
Dear CMF sisters,
I had my 3rd infusion on Friday, and though I have not had to deal with the awful kind of side effects that I have read about here, my body seems to be reacting to the chemo in unusual ways, Or maybe they are not unusual. My pre-infusion blood work found I had very low salt levels ( though I had received a saline drip during my 2nd infusion-- boy were my legs and ankles swollen for 3+ days). Because of low salt, MO decided to leave out the "M" from the CMF infusion this past Friday, and suggested I see a Kidney doctor. She also has me drinking Gatorade for it's electrolytes instead of straight water. Has anyone else had issues with your salt or potassium levels? She also said that unless levels get normal she would consider delaying next infusion. She would be willing to delay it until I get back from long planned vacation scheduled a week after last infusion. It is important to realize that doctors have a good deal of flexibility in their plans for our treatment.
I also had a Neulasta infusion from that cute little pod that self releases 27 hours after it is enabled. Last night, I started to feel muscle aches on the upper part of my arms,under arms, tender breasts, and tender around the shoulders. I read that Neulasta can cause muscle aches, so I am thinking that , despite taking Claritin, this may be a reaction to the Neulasta. Anyone have any experience with it? Symptoms are not bad, but I am wondering what they might be due to.
Windward
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They can also reduce the strength of the chemicals if needed. Everyone is given the standard dosage to start. There is a pocket of about 15% that can be reduced and still be effective, according to my oncologist. You might ask about reducing the strength of the dosage if it gets too bad and still go the number of treatments that are scheduled.
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Hi Ladies-
Happy New Year and hope everyone had a nice holiday. Hi also to the newbies here starting chemo .
I went back to work Dec 2nd but had a weird insomnia episode for three days so my MD has me on Bipolar meds to rule out Bipolar. Ugh....just what I need..So work has been very slow and my work load really light (much different than when I left).so Im very happy with the low stress at work..I started Tamoxoflen 10 days ago and it kind of makes me spacey at times (memory?). But last night I did a breast check and I discovered a tiny bump in my remaining right breast , so now I have to call for appt with my doctor...this couldn't be the cancer coming back this quick? could it? or could it be just a cyst...? it feels like the size of a small pea. I hope and pray this isn't a reocurrance. I did some research on the internet today and some referenced if cancer comes back before a year of treatment, they didn't get all the cancer or it progressed despite treatment. My last chemo of CMF was October,its only been 3 months....I try not to worry but ...ugh...Has anyone here had a cyst after treatment like this?
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mircann - I'm still in treatment so I can't get you my experience for after chemo, but from what I remember 80% of lumps found are not cancer. Try not to stress overly about it and get it checked as soon as you can.
Thank you mandy1313, ml143333, windward! I guess the Drs think I'm tolerating chemo so well because my wbc and other numbers have been so positive and the nausea is under control. The fatigue they say is par for the course and I just rest the days it really gets to me. I barely leave the bed the few days after chemo. But other than that I try to continue to do as much as I can on my good days. I definitely will try the acupuncture and my friend got me a massage too that I am much looking forward to.
Thank you all for your support and wish you the best
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Mircann - My thoughts and prayers are with you. Call your doctor and get in as soon as possible.
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mircann....My thoughts and prayers are also with you. Every little bump or lump will now bring concern and fear for quite awhile now. You should have this checked out as soon as possible, keeping in mind that the majority of lumps are not malignant. Try not to stress too much until you have answers. I had a lump shortly after my lumpectomy that really scared me it was in the same breast and was scar tissue. I have never heard of it returning that quickly so I think it would be very rare but I understand your fear since we have no control over this. Hugs to you. Please let us know what you find out.
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I was always told the best thing to do to thwart off fatigue is to get exercise. Even if it's little bits of exercise on really bad days, i.e. walking down to the mailbox or doing something around the house. I found that to help. When my MO asked about my side effects and I told him fatigue, it was barely acknowledged. That's just a given. Try to rest, then get a bit of activity, and rest again.
Hang in there!!!!
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Sue, I think you are right about exercise and fatigue. A walk or some activity still perks me up when I get tired during the day.
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mircann - any update for us? U r still in our prayers.
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We've been quiet for a while so I am just checking in to see how everyone is doing. I hope that those affected by the recent blizzard have dug out and are fine. i enjoyed walking in the snow on Sunday after the storm stopped.
For everyone in treatment, sending big hugs. Mircann, sending you an extra hug.
Mandy1313
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hello ladies! I just had my 5th treatment today. 3 more to go! Let's see how I feel the next few days...
Hope all are well
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Hey Wenrisa, you are on the downhill slide now! I hope you get along well after the 5th treatment! Hang in there! Hugs!
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Hi Wenrisa,
3 more to go! Glad you were feeling "well enough" to send us your update. Hoping the next few days are tolerable so you can pass quickly to the better days. How are you doing with nausea? Keep drinking fluids, maybe add some Gatorade to be sure you don't pee away your electrolytes as I did. If just the thought of Gatorade makes you sick, there is Smart Water. We are all by your side, and quietly cheering you on.
I have one more infusion left ( hoping there won't be any lab surprises next Friday), my 3 week and still dragging on cough/stuffed nose etc did not turn out to be Walking Pneumonia, ( Thank you Urgent Care!). Boy talk about compromised immune system with no ability to fight off infections!! Interesting that most nights I am really tired and can be in bed with light out between 8;30- 9:15. Strange to be able to sleep so early.
Meeting the Rad. Onc. for consult on Monday. Things are moving on
Hugs to all you wonderful Guide and Carers , and all those going through some hard times.
Windward
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Windward....You are also nearing the finish line! Good for you! Fatigue is certainly an issue toward the end of the treatment program as our bodies have been constantly bombarded. Rest when you need to rest. I always found that walking perked me up, too. I think you will find that rads will be much easier....just an inconvenience. Hugs to you!
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Hi RitaJean,
Although it was totally counterinutitive, when I recently felt really wiped out, I went out on a very short errand in the cold winter air, the last thing I wanted to do, and came back feeling energized. It was really strange. Thanks for reminding me.
Wenrisa, How are you doing 3 days out from Thursday, hoping you are beginning to get your energy back.
Windward0 -
hey windward, ritajean and Mandy1313
I'm doing ok I guess. Feeling a bit better today. Last cycle I felt much better than this time. Had a bit of nausea again this time. Found if I forced myself to eat something it wasn't as bad. And I've been taking meds for it too. But worse this time than last for sure.
I still feel like telling the dr that I'm done after 6... I just hate feeling so sick and tired and sore for 4 or 5 days from treatment and then just when I feel good again (except tired) it starts all over! Frustrating!
Windward so happy for you that you have just one infusion left! Congrats on making it this far and best wishes that nothing gets in your way of completion! Prayers are with you!
Sam
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Wenrisa - hang in there! I know you want to call it quits after 6 treatments and I certainly can't tell you what to do, but please talk with your MO about managing the nausea better. It also sounds really crazy, but even when you don't feel like it, pull yourself up and do something even if it is little. Walk the dog, walk to the mailbox, get out and run a small errand - it really helps somehow make the body feel a bit more alive and not so exhausted. You'll still be tired and your body sore, but for some reason, maybe it is mental, the body feels a bit better, like it accomplished something.
All of these treatments pile on top of each other and it gets worse toward the end. I did 8 treatments and it did feel daunting at the end, but I kept thinking of my end date and that I knew my body would come back in 6 months to a year after.
No matter what your decision, know we are here with you.
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Wenrisa, Mandy has given you good advice. I know it is hard when you face the side effects aafter each chemo. Have you considered asking them if they can reduce the dosage (strength) of the drugs. They reduced mine for the last two treatments and I tolerated it much better.
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Hi Ladies,
Update...Im thrilled found out the pea sized bump was just a cyst....! Thank you Lord! I was shaking in my boots waiting for the radiologist to walk in with the u/sound results and instead the u/sound tech came back and said "its just fluid " and confirmed it was a cyst. Now my next step is to get the implant..sometime this Spring or early summer- Any of you go thru gummy bear implants?
Wenrisa- Sorry you've had such bad side effects, yeah, insist on stronger anti nausea pills or a different type. Are the nurses available to talk with if oncologist isn't available? We had a phone number we could call if side effects got bad. Ive always heard exercise helps to..even if its just a walk around the block (if its not too cold)...or do some floor exercises? just a thought...andlots of fluids/water to get the chemo crap out of us...
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Mircann: That is the best news possible! i've had a couple of scares and luckily they have turned out to be just that--scares like yours. Do something to celebrate !!! And enjoy the rest of your weekend.
Hugs!
Mandy1313
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Wenrisa, have you already finished number 6? I remember wanting to stop at number 6 too (I went on to have all 8). I went to my onc with all sorts of articles showing that many only got 6 tx and then she stopped me in my tracks by saying well it was probably enough but that all of the studies on which she relied involved 8 tx....so I went on for the last two. And the chemicals are cumulative so I can't promise that the next tx will have fewer side effects. If you can hang in there and go for the full series, good. If you need a change such as a 3 week break, shout out to your onc and ask for it. And if you absolutely cannot continue, many of the ladies on thie board, have also only had 6 so you can contact them and find out from them. But you are really in the home stretch and congrats! Sending you a big hug.
Mandy1313
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Mircann, We share your relief, and have been holding our breath till hearing from you.Hopefully this will be the last scare you wll have too through, for a long, long time. Though I know that scares come with the territory, but are mostly only false alarms.
Wenrisa, You have been getting some great advice from your CMF sisters, about shouting out to your nurse or oncologist about lowering doseage or more anti-nausea meds.
How are you feeling? I think this is your feeling better time before your next to last infusion?. I hope so.
I had my last one Friday. Had Neulasta automatic infusion that self released on Sat.
Day after infusion felt fine. Then neulasta released it's little goodies, and maybe the cumulative effects of chemo, and I feel yucky! Took some Zofran, and checked my notes from earlier Neulasta infusions and found out the swelling and tenderness happened before, even with taking the Claritin. And then eventually,it went away. Glad I arranged to do nothing over this weekend, and that I did all food shopping yesterday, as today I don't want to have anything to do with food.
FYI in case anyone you know is ever interested, i did the Penguin Cold Caps. Very expensive, although less so in other parts of the country. At this point I think I have lost
from shedding, about 10-15% of my hair. I only had 4 infusions. I have also discovered Toppik which is a powder that fills up thinned spots with fiber like stuff, and really helps to hide scalp ,especially for me around the bangs area. It washes out with shampooing.
HAd consult with Rad. Onc, and will start 28 days of radiation March 9. I tried to get her to consider the accelerated higher dose rads for shorter time, but if you have had chemo, it's effects on your chemo infused skin are bad, and so I did not qualify.
Ah well, at least I tried.
Hugs to all,
Windward0 -
mircann....YEA! YEA! YEA!!!!!!!! So glad to hear that it was just a cyst. I think most of us have been through scares and we know the anxiety associated with them. So......take a big deep breath and go right on with the rest of your life! :-)
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It's interesting the different protocols used with CMF in different areas. I had 6 treatments but no Neulasta. MY WBC counts were fine. And then I had 33 rounds of rads - 28 full breasts and 5 boosts.
This week is my cancerversary, the day that started 9 unbelievable months. My second mamogram will be 2/29. I will be glad to get to March.
I find it so interesting that, while our bodies had abnormal cell division (cancer), that this cycle doesn't resume more than it does. It must be an anomaly, since most people whose cancer is caught early don't encounter more cancer. I hope that will be the case for me.
Wishing you all a great Superbowl Sunday!
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sueh58 - we will pray for you getting through this month without too much anxiety!
Great news mircann!
Windward hope you are feeling better now!
I'm getting ready to go for #6 this week. I'll probably finish with the complete 8 but I won't like it! LOL! I talk to onc or a pa everyone I go but they don't seem to feel that my SE are anything to worry about. They had changed my anti nausea meds at the beginning to the patch and that's helped some but I still end up so tired and slightly nauseous that I spend a few days in bed... Is that normal? Are you guys still active in your daily routine in the days following treatment? I guess I always just assumed it was normal... Once I get past those days then I start to feel fine although I do get tired more easily. I'll try to force myself to be a little more active and make sure I still eat and see if that helps. I really want to try acupuncture too but I keep forgetting to ask about it at the office...
Wish me luck with #6 this week! Thank to all of you for your advice. You are always in my prayers!
Sam
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Wenrisa, fatigue is perfectly normal. And when I say fatigue, I have never experienced the kind of fatigue you get with chemo--like you can barely raise your arm. I remember after one treatment, I wanted to make pasta salad the next day. I was going to make it in 4 steps, resting in between. Between step 3 and 4 I was in tears, I was too exhausted to continue. But when you ask your MO about that, they just nod and move on. There's nothing that can be done for that, other than to try and get a bit of exercise during those days (even walking to mailbox). Your body is going through great disruption--of course you're tired. I personally was on leave during chemo so, fortunately, didn't have to do anything but worry about getting my strength back. I didn't have much nausea, but don't hesitate to take your anti-nausea meds and, if necessary, your stool softeners (those things can be nasty on your digestive system).
Good luck this week. Be good to yourself.
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