CMF Question
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The 7th infusion was a killer for me. For some reason it hit me like a ton of bricks and I called a halt. My husband and internist talked me into going for the last one. They did find that my white blood cells were low and I needed my first and only neulasta shot. I tried not to take nausea pills in the beginning but that was foolish. I started taking them freely after about the 4th week and I wondered what I was waiting for, they work! I can't imagine working and commuting throughout. Hats off to you!
One thing I didn't realize was how long it would take to recover from the CMF. My surgeon in Chicago told me that after 3 months I should be back to normal and on my bike again. 4 Months in I was dishrag. I called sloan and was told that it would take a full year before I'd "begin" to feel "normal". Of course i've been on anti-hormonals which complicates things. March 15 was a year since I finished CMF. I am feeling better but still nowhere near where I felt pre CMF. This may just be me, especially since I gained 60 pounds in one year! It's coming off now. But I just wanted to warn you not to expect too much too soon, It takes time and patience and we have to be grateful just to have "time", right? Good luck, it's all downhill from here,
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@ Traii - I also had MOPP and ABVD. sorry to hear that you relapsed during. thats rough. what stage were you.
I was just surprised bc I thougth CMF was stand alone. But I guess there are many combinations. I will have a total of 8 treatments. can i cannot wait for it to be over.
I will undergo my expander exchange surgery on August 6. Are you doing reconstruction?@Timbuktu- I feel like I ran a marathon, my body is trashed. walking upt he subway stairs is just so hard. I thought maybe i was fighing something cause i just feel so rundown. I have been getting nuelasta after every treatment. the side effects are horrible. Its comforting to know that this is normal. Ikeep wondering what is wrong with me. Why cant i bounce back. I force myself to run sometimes and if eel like im going to collapse cause its just so hard. What anti -hormone are you on? thanks for sharing.. and the encouragement. its only 1 more and it cant come fast enough, but i am also dreading the side effects. almost there!!!
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I used to say that the chemo was at war with my body, It is poison, after all, and you just have to hope and pray that the body is strong enough to fight back! After that 7th infusion I felt the poison was winning. I didn't think I could get through another one.
I was wondering how you could go on the subway with low white blood counts. I can see why you need neulasta and yes, it's painful!
First I was put on arrimidex. the side effects became unbearable after a few months so I was put on Femara. Same side effects so I was put on Aromasin. I just went off of that March 23. I will go back on Arrimidex in a few days. My onco said that some people have to do it this way for the whole 5 years.
When I went off of the Aromasin I immediately dropped 17 pounds without trying, It is a steroid, I believe.
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Dianarose, I took Arimidex/Anastrozole for the entire 5 years and experienced no hair loss at all. I feel so much better now that I am off that drug.
I am one who has the tumor marker test every year now. At first I had it every 6 months but now I just get it done once a year. My oncologist believes it can indicate new problems. There seems to be quite a bit of controversy between oncs on this, though and who knows what the right answer is!
I've been so busy trying to get my yard in shape between the rains that I haven't been posting as much as usual. I think of all of you often though and hope that you're all getting through the treatments as easily as possible. Hang in there. There is an end to this journey. Hugs to all of you!
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Done my 1st chemo, so far so good. Light headache and body sore. Hope it will stay as is.....
Fight on to all of you!!0 -
Cherish- I had my first treatment last week and felt similar. Good luck! Are you every two weeks or three? I am every two weeks for 8 times with a neulasta shot the day after.
I am hoping next one goes similar. I am also doing acupuncture which is supposed to help ease some side effects.
-jsrose0 -
@MaryNY, with my health care provider, the emphasis is on "evidence-based" medicine. I appeared to have early-stage cancer, with no symptoms suggestive of metastases and no indication that the cancer had even spread to my lymph nodes. This study, if I understand the abstract, shows no significant difference in ten year survival between intensive followup with scans, tumor marker tests etc and scanning only if there are symptoms suggestive of metastasis. Plus, scanning has its own risks--every scan gives you a dose of radiation, there is a slight risk of adverse reaction to the tracer, scans can be false-positive and prompt biopsies, and so on. So, I think the reasoning is, if intensive followup has risks and doesn't improve survival, there's no reason to do it. I did have a breast MRI before the MX to check for cancer elsewhere in my breasts. According to the radiologist's report, my breast tissue is "extremely" dense, so there easily could have been additional cancer that didn't show on my mammogram, and (I would guess) there is a study that shows that in early-stage BC, survival is affected if not all of the detectable cancer is removed during the original surgery. So, you do the MRI, which gives a lower dose of radiation and produces information that can affect survival, but you don't do the other tests unless something shows up to suggest the cancer may be progressing. In my case, I had an odd tender area, with something that felt like a lumpy chain in/under my skin. That was a symptom, so it got investigated further with ultrasound, and that was when the liver growths were spotted. Even if I hadn't had the tenderness and lumpy chain, they were also visible on the CT angiogram I had to locate blood vessels for the DIEP reconstruction I planned, so they would have been detected within a few weeks after that. Even though I suspect that the mets were there all along, it doesn't bother me that they weren't detected until after I had my initial treatment. As I understand it, MX/LX isn't part of the usual treatment if the cancer has already metastasized at the time of original dx, and since I'm glad that the original lump is gone it's OK by me that the progression wasn't discovered earlier. And in fact, I saw somewhere online, I think it was here on bco, that a new study suggests that removing the original tumor can be be beneficial and increase survival, even after metastasis. If that's the case, there may be a medical as well as psychological benefit to me from having had surgery.
(edited to add--since dx stage IV, I have had tumor markers tested twice. I think the idea is to see whether my tumor markers match scan results, and if they do they can be used to monitor treatment results rather than repeated scans. I don't think markers are a reliable indicator for everyone, and I also don't know whether tumor markers always rise in the case of a recurrence or metastasis many years after initial treatment. So, I can't say for sure, but my guess is that with my health care provider tumor markers wouldn't be tracked for people with early-stage cancers.)
As for CMF vs newer chemo, that was my choice. My oncologist originally suggested TCx4, but when I found out that taxotere sometimes (about 3% risk) causes permanent hair loss, I asked what my other options were, Dr F told me I could do either CMF or AC, but the latter was more aggressive than needed for what was thought at the time to be borderline between stages 1 & 2, and had the risk of causing heart damage. CMF is a little bit less effective than TC, but the way I thought about it was, I could do TC and end up bald, and if the cancer didn't come back I'd be bald for maybe 30 years--YUK! Or, I might do TC and ended up bald, the cancer still might come back, and I'd be furious! But the difference in effectiveness between TC and CMF is so small that if I did CMF and the cancer came back, I would not be kicking myself and saying "if only I had done TC this wouldn't have happened". If the difference in effectiveness between the two had been greater, I would have given more serious consideration to doing TC in spite of the possibility of losing my hair forever.
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@kcmanis, even though I was officially on half time at work, and actually only working 12 hours or so a week, I got extremely fatigued for about the last month of my CMF treatments. Have you checked whether you have a fever? I developed a toxic reaction to one or more of the meds that put me in the hospital for a week, and what should have tipped me off that there was more going on than the ordinary side effects of treatment was a fever that kept creeping up in spite of over-the-counter meds.
Have you looked into applying for FMLA (Family Medical Leave) so you can work less than full time? Being on chemotherapy definitely qualifies you for it.
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Jsrose - I'm doing every 3 week for 8 time but no shut, yet. The nurse gave me the pills before it started, 2 x dexamethasone 4 mg tablet n 3 Zofran 16 mg. She said the medicines prevent the nausea n give energy, but SE is might be too much energy so can't get to sleep
... I feel good today but I feel my face is red n hot whole day. Hopefully we will all stay good for the rest of treatments!! Thx for the tip, I might try that later!!0 -
Cherish
the steriods are keeping you awake. They are a pain but need to have to prevent reaction. I was only on 1 x4mgs morning of chemo. Once dex is out of your system you will be able to sleep better.
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Suebele - I'm wondering about the hair loss. In my 3rd week after starting chemo, my hair started coming out by a good handful a day. Now week 5 still coming out by handfuls. How do I know if its all going to come out? If its just thinning, does anyone know if it just slows down or does it usually come out slower than mine? Also, I've been sick on my weeks off infusion too. I also think its from the Cytoxan. I don't think you're wimpy. It sucks to feel sick all the time and have your outer appearance change drastically at the same time. Lots of hugs to everyone.
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Cherish
I am getting the neulasta shot the day after bc I am on a 2 week cycled so. My white blood cells don't really have a chance to rebound back.
In terms of the sleeping and steroids my onc gave me Ativan to help me sleep. She said it also helps with nausea and gives you amnesia to the nausea! It definitely helped me sleep and i still took the decadron, zofran and compazine.
Jsrose0 -
Traii - thx n hug:)
Jsrose - I feel sick today. It similar with those symptoms when you getting the flu, bady sores and fatigue. Well, it's hot in LA today so might be the weather ?! Hugs
Just heard a bad news that one of close friend' sister just diagnostic the breast cancer. She is waiting for the surgery n very sad:(. BIG hugs to her!0 -
Cherish- I had the same symptoms day two and three after treatment. Day 4 was better and by day 5 I felt great. Hang in there and drink lots of water!
Jsrose0 -
Scottietoo When I saw my oncologist, I pulled out my hair and said "is this thinning or falling out"...he said, "falling out":) So I shaved it. It is hard to know for sure. I did ACT in 2005 and I didn't even wait for 'alot' to fall out, as soon as it started-I shaved. So even though I have done it before, I had no idea what 'thinning' was. I was 4 weeks out. I guess I figured if it was coming out this much with one treatment it would surely all come out. So annoying for it to fall out everywhere.
I still do feel wimpy, but can't fix blood counts...go tomorrow to see if it is back up to do chemo #2. This will be a long haul if it is like this the whole time. Good look!
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Hey guys, my hair thinned a bit, but not one person can tell. I also have the flu achy symptoms 2 days after chemo. I can usually tell that my white blood cell count is going down that's when i feel more "achy". But after that, I go on a "chemo holiday" and totally feel like myself. I'm so grateful to be doing cmf, that I didn't lose my hair, that the side effects are so less severe. AND did I mention one more to go! Whoo hoo! Next wednesday is the last chemo for me! Yay!
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Robin - last one!! Big 5 for you n you are so brave! Hugs
Jsrose - as you said I feel better today n able to take care some daily works. So, when is your next schedule ? Hugs
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Wow Robin, bring on Next wednesday, last CMF
Hope you're doing wellHope all you ladies that are undergoing CMF at the moment stay strong and have minimal SE's. Remember there is light at the end of the tunnel. You CAN and WILL do this. Good luck to you all.
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Had my second treatment last Wednesday. Had a pretty yucky weekend but honestly the worst so far is the constipation. I am doing everything- colace milk of magnesia, prunes, water with lemon , miralax, stomach massage and still slow! Hopefully this will be my last day for antinausea meds so that will help. How are others doing out there that have started cmf? Last night the only thing i could eat was watermelon! Still have my hair after two weeks! Hopefully it will stay that way although I did get a wig just in case!
Jsrose0 -
The constipation was the worst for me too. I had to take 3 dulcalax a day plus too stool softeners. That did the trick.
Now that I'm out in the sun again I notice my skin is blotchy. For a year after the cmf I would get blisters in the sun. It's been 14 months since my last infusion and still my skin is reacting oddly to the sun. Take care people and stay out of the sun while under treatment!
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Robin, way to go!!! Wednesday will be here before you know it!
Yeah constipation was pretty bad--once I figured out what I needed to do, I was ok. I took a colace for about 3 days before each chemo infusion; ate stewed prunes every evening and first thing in the morning every day of the entire treatment. Plus I would begin the day almost with a ritual--of slowly eating the prunes, then slowly drinking a cup of black coffee. I would try to taper off the dexamethasone as soon as possible, by that I mean if the RX was 3 a day, by day two only took two etc. I found that reducing the amoun tof dexamethasone really helped and my nausea was kept in control by other meds that did not seem to upset my digestion as much. But everyone is different and I know you have infusions every other week jrose so your anti-nausea meds are more often and you may not be able to taper off as I was.
Hope all you gals in treatment soon feel alot better.
Hugs
Mandy
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Thanks Mandy. It is difficult on the two week dose dense bc I am not allowed to start the zofran until three days after my infusions bc of the aloxi and emend. I do think its the decadron causing the constipation. Can you tell me how you stew prunes. Do I just heat water and pour over dried prunes? If so how long?
Thanks.
Jsrose0 -
jrose: basically you are right and you just pour water over prunes and heat to a boil. I add sliced lemons and prunes, water to cover the prunes, and then just bring to a boil. After that I left it sit for maybe an hour until the prunes are plump and full of the water. I store it in the refrigerator. My grandmother always added lemons to her prunes and that is why I make mine that way. I think it tastes pretty good too. I also added other dried fruits such as apricots or even raisins to this "dish". With apricots, though, be sure to get organic as the non organic have sulfer dioxide as a preservative (to make them bright orange) and I don't know if you'd want to have that while you are on chemo (or any other time). "Newman's Own" has organic prunes and apricots and can be found in alot of regular supermarkets--otherwise Whole Foods has some. All the best.
Mandy
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jsrose- cheerio's worked for my constipation. Corn pops did too. Cereal seemed to be the thing for me. Sometimes I did take a stool softener as well. I don't think I could have choked down a prune. Even now after 6 months pfc there are things I can't eat. I ate red meat during chemo and now I have no desire for it. It's all weird.
I noticed you had your ovaries removed. I am having mine out next month when I have my exchange. How did you feel afterwards. Just wondering what to expect. What was the pain level on a scale of 1-10. I am trying to open a bakery/cafe next month as well so timing is important at this point.
Do you have to do radiation as well after chemo?
I hope you feel better. Hugs... Diana Rose
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Dianarose - I did have my ovaries out with my bmx bc I am brca2+ and 41 with 2 kids so it was time! Really I can't say there was any extra pain given that I did it all together but I was told that if I did them separately it was really minimal in terms of the pain and is done outpatient. Maybe some soreness on the right hip but I don't think anything compared to bmx.
Aside from being in menopause at 41 it wasn't that bad!
I hope it goes well for you! Looking forward to my exchange day!
Jsrose0 -
Also no radiation so once cmf is done just exchange and then hopefully moving on with life! Good luck with your bakery/cafe!
Jsrose0 -
jsrose- The chemo put me into menopause by week three. I have been one big hot flash for a yr now.
Have you noticed any hair loss? I was one of the unlucky ones. I lost bout 70% of my hair on CMF and had to get a wig by week 4. I was a mess. I lost my eye lashes after that. I used the Nioxin shampoo the whole time and still do. My hair has come back thick and very curly.
I wish I had done the ovaries at the time of my bmx because I am sure I wouldn't have notice any extra pain over the dam drain tubes. They were worse than child birth.
I hope you do well during your chemo. My worst problem was I couldn't sleep. I still take a Xanax every night to sleep.
I am looking forward to opening my own shop. I want to have fun with it. I have already decided to be closed on Sundays because I want time with my youngest who is 14 and I have 5 granddaughters and my first grandson will arrive in September.
Have a good night. Hugs.... Diana
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Dianarose- I have definitely noticed the hot flashes are worse with chemo but I was already in menopause for two months so I guess not that bad. My ovaries were laproscopic and only took an extra 45 min. I pushed for it all bc the gyn onc that i wanted to use was leaving in may so he advocated for me to get it all done together.
Still have my hair and hoping it stays although i did get a wig just in case but hoping not to use it. I'm going on week three and haven't noticed too much shedding.
Looking forward to getting this all behind me! It seems like an uphill climb!! Hoping tomorrow I start my rebound until the next treatment!
Jsrose0 -
Jsrose- How funny. My gyn is leaving too and that is why they are doing it at the same time of the exchange.
I am happy you haven't noticed any shedding. Mine came out in clumps in the shower and then I had to get it cut short because it was all over the house. I think the loss of my eye lashes was worse. I looked like Yoda. LOL
I hope you rebound this week.
Diana
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So crazy how different everyone's SE are. 2nd treatment is a bit better-knocked back my cytoxan to 150mg instead of 200mg. It has made a slight difference. One thing I do hate is that when I did ACT I would go in ONE time and feel like crap-but I had 3 weeks to recover and 'forget about it." This regimen you have to go in on day 8 when I already feel like crap and plug back in-mentally I struggle with that. Anyway, glad some of you are almost done and I will be thinking of those that just started.
Take Care! Susan
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