CMF Question
Comments
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Cab mom
What has your onc recommended for this?
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Cabmom, I would go crazy if I had to be there 5.5 hours. I must time the individual infusions the next treatment. I do know that last time it did take a little longer as they gave me Kytril (anti-emetic) as an infusion. For the previous treatment they'd given me Zofran in tablet form.
I've been sleeping a lot too or at least sleeping late. I find that I wake up a lot during the night and it takes me a while to get back to sleep. I get night sweats so not sure if that's waking me up. Then when morning comes I don't want to get up so sleep on until 10 or 11 AM. Awful.
I don't have a problem with achiness other than that caused by the Neulasta. Thankfully that's gone now.
Judy: I'm on the other side of the river from you. I'm in Westchester County, NY. People sometimes even refer to this as upstate.
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For you ladies who have done CMF. How long did you continue to take the compazine?
I would like to go off but am a bit leery as I don't want to become nauseous
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Hi Merilee: For my first treatment, they gave me Zofran with the infusion, then I had Compazine to take at home, but I only took it for a couple of days as (1) it didn't seem to relieve the nausea and (2) I had constipation issues and knew the Compazine would make it worse. This time around they gave me Kytril with the infusion which kept the nausea at bay for two days. Then I still had low-level nausea through Saturday (treatment was Monday) but didn't take the Compazine in case of constipation. I find that if I eat something every few hours, it lessens the nausea.
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Merilee, my onc hasn't really recommended anything yet on the aches because I've been afraid that he would want to increase the Decadron and I DON"T WANT THAT. My weight is already going through the roof and that scares me. Also, compazine did nothing for me so I only took it with my 1st treatment and since then they've been trying different ones. 2nd treatment they gave me Kytril and I broke out in a rash from head to toe and 3rd treatment they gave me zofran and it did the same only not as bad. 4th treatment they gave me emend and it worked ok although I still felt a little nausea late in the day, as you can only take the emend for 3 days.......I was really, really tired on this last treatment, which I thought was odd and I slept a lot.
Mary, I've not had to do the Neulasta shots yet because my blood levels have remained really good throughout treatments, which I credit to the ladies on this board. They gave me lots of advice all of which I took and applied to my life. Thanks ladies
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Merilee....I took the Compazine faithfully for four days after each infusion and then put it away until the next treatment. That seemed to work for me.
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Hey all: had my first CMF treatment today. 1 down, 7 to go....Had some weird sensations in my sinuses--eyes started watering, nose started to run, intense burning in sinus area--and then it disappeared within 1/2 hour of treatment ending. Slight metallic taste in my mouth now so I just brushed my teeth and used the mouthwash they suggested and have stopped eating---no desire right now. Not too bad today.
Treatment nurse said some women will see clumps of hair come out? Is that how the hair thins? Would love some in put in that area so I know what to expect.
Thanks!
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Hi Al: Glad to hear you have #1 over with. I think the Cytoxan is the culprit for the symptoms you experienced. How quickly did they run the infusion? You could ask them to slow it down the next time and it should help with this. I also took a Tylenol last time and didn't feel that uncomfortable sinus thing. I found that very unpleasant.
Maybe someone else will weigh in on the hair loss issue. I was already as bald as a coot before starting CMF as I had four doses of AC prior to that. The onc said my hair might start to grow back on CMF but haven't noticed any growth spurt yet. Some women don't lose their hair on CMF, it just thins, so you may be lucky.
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Nurse said that they could slow it down slightly if I asked them to next time--but they wanted me to go through it the first time to see. All in all, not a bad first day. I understand that CMF is a bit milder but I'm rather sensitive to drugs in general, so I wouldn't be surprised if I have SE's, but I'm trying to stay positive and focus on my kids!
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Sorry for the short post ... but did want to weigh in for AL1841 on the hair loss. I started with rather fine and kind of thin hair .... after my first or second txt I noticed that after washing my hair I had quite a few strands on my hands. I thought to myself .... shoot ... I am going to lose all of my hair. Well long story short .... it did continue to thin a bit ... but it never came out in clumps. All said and done ... I probably lost about a third of my hair. I'm personally not aware of anyone who lost all of their hair on CMF .... I do have a friend whom lost much more than I though.
Hoping that with the advice of others, maybe a slower drip will alleviate your se's for your next infusion.
It warms my heart to read of those of you starting and in the midst of your txts supporting one another ... I know that to have others in like shoes hearing me out meant the world to me.
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Al
You may want to check out some hair products called Nioxin. I t is suppposed to help with the thinning hair. We shall see. Stopped the compozine yesterday and feel quite well so far. I think a bit more energy today too. I am back to work this mornging.
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Al1841......I have not heard of anybody either who lost all their hair or even needed a wig for thinning hair from CMF. The hair loss is gradual and like golfer said, you notice it most in the shower when you wash your hair. I used the Nioxin products that Merilee mentioned and thought that they helped. They were a bit cashy but it was worth it to me. Also, lemon drops help greatly with that metallic taste.
Merilee.....congrats on getting through #1! Now you'll have a few weeks of "chemo holiday" before the next treatment. Just keep marking these off your calendar.
Cabmom........It seems like only yesterday that we talked about your first chemo and look at you now. You've about got this "licked." I'm so happy for you!
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Welcome to the club Al1841 and congrats on getting #1 behind you! I don't have a lot to add and agree with everyone on their advice. I do use the shampoo Nioxin and seems to be working fine. Smells a little but not a terrible just minty and is a little pricey like Rita said but to me, so worth it to hopefully help aid in keeping my hair. With that being said, I just finished #4 and I have thinned a little but nothing that anyone else but myself and hairdresser would notice but I also had really thick hair to begin with. Still very manageable but feels a little drier to me sometimes. I try not to wash it everyday which drives me nuts because I always have but it seems to help it not have such a dried out feeling if I don't. I was so worried about this when I started and thanks to the ladies on this board that have gone before us, they help to ease that worry for me. Don't get me wrong, I'm still concerned with each treatment but not to the point of obsession anymore. I really do think you'll be fine..........
Rita, can you believe that I'm done with #4? I still can't but I am so thankful and even though I've had a couple weird issues, I'm doing great. The first few days after are tough but they pass. Yeah only 2 to go!!!!!
Good luck to all of my fellow CMF'ers.....we will get through this and oddly enough I do feel that we'll all be stronger because of it.
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LOL CMF"ers Chemo Mother "F" ers. I am so there LOL
Sorry sense of humor is getting the better of me here
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Sorry, I didn't really think about how that sounded
! Sorry if I offended anyone!!!!0 -
Did not visit this thread for a while, and I'm amazed to see how busy it has been here! Lots of new CMF'ers. And I thought this regimen has been going out of style...
Rita and others - I am one of the few who is using a wig. I lost most of my hair, probably more than 50% but no way of telling how much. It isn't so bad! The wig looks better than my real hair which is thin anyway, and makes me looks much younger, and also brings many compliments... who would not like that! I was finished with chemo just at the end of November, and the hair seems to be thickening a bit, but again - can't tell. My husband wants me to stay with the wig - he likes it
Also, with this harsh cold weather, and with nice warm rabbit-fur earmuffs - I have the perfect head cover!Otherwise I was really lucky with SE's. Very minimal: no moulth sores, no metallic taste. Only 2 neulasta shots during the 5 months. Just light nausea for a couple of days. I also had watering eyes, which some days was almost intolerable, but that is now over, I'm happy to say. Also hardly any fatigue, and I even lost a few pounds! Maybe that was due to not receiving Decadron (because of high blood sugar.) I really can't understand why they give it at all: the SE's from Decadron seems to be worse than its value.
I am now in my second week of radiation. So far no side effects, of course. This is easy to take - they treat you very well, there's never any waiting (as long as I come on time), and in 15 minutes I'm out of there, on my way home.
This treatment is different for evryone. I wish all of you who are going through it now lots of luck, minimum side effects, and let those months go by quickly! Elisheva.
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Elisheva.....congrats on finishing the CMF! I hope the rads go well for you. They were much easier for me than the chemo, but everyone is different. I guess I didn't know that you lost so much hair, but I'm glad you're pleased with your wig and have a new look!
Merilee..you crack me up! I'm forever saying CMF'ers! Didn't think about your version before! LOL
Well, I need to think about an evening meal here. I'll be back tomorrow!
Rita
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Hi everybody!
So made it thru CMF #1 on Monday afternoon. Been feeling drowsy (but think that's mostly from the stress of this rather than a symptom) and off & on nauseous, but more than anything right now I can't seem to shake a headache that seems to originate in my jaw area. I only took one dose of Compazine last night and haven't felt I needed that since. I'm more afraid of constipation than I am of dealing with some nausea. It's basically like really mild morning sickness right now and totally manageable...even managed to sit thru a conference call for work feeling bleh. I'm trying to be REALLY proactive with brushing my teeth and keeping my mouth clean. I don't have any teeth issues now and I'd kinda like to keep it that way. That's another concern of mine. Will be happy to pull thru this without much constipation and without my mouth paying the price...we'll see. Don't go back for another treatment until likely 2/2 after an appt. next week with my oncologist and another the following week with the PA to check my levels. Just thinking tonight how much it stinks to go from being a generally healthy person (haven't been to a primary doc in over 7 years) to now having to feel pretty lousy while drugs attack my bad AND good cells. They can have the bad, but giving the good ones up kinda irks me. I'll get over it. I'm happy to say that only the Zofran made me feel totally odd (couldn't focus on anyone or anything with my eyes), but after that subsided the other infusions were just fine...no real cold feeling, no metallic taste...so all in all I left feeling really positive...that I can do this.
I'm so happy you are all doing well and hanging in!!! I definitely need to go and take a Tylenol now...was trying to see if the headache would subside, but no such luck.
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Hi all...I am one of the few that had to wear a wig..I would say I lost over 60 %
of my hair..AL..I did have them slow down the infusions after the first one
it made a big difference..
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Cabmom ...... LOVE IT ..... as I took my cytoxan orally ... I literally went in for the "MF" infusions !!!!!!!!!!
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Just discovered Metro mint waters...yum and ahh...
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Day 6 out of first treatment and feeling pretty darn good today.
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Oh Judy I wanted to ask you if you have found the Biotene products? They help with mouth prevention.
You can order them online. http://www.biotene.com/Default.aspx
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Merilee--Thanks and yes.
When we filled my Compazine prescription, I was sure to buy some Biotene toothpaste and gum at the pharmacy. I'll have to get the mouthwash online, though. So far, my mouth is still my friend. Today is Day 2 out of treatment for me, so I woke up with that morning sickness feeling and I was feeling pretty tired. I let it play out a little, but then finally took a compazine and that helped. We just packed the house with a nice load of healthy groceries (fruits, veggies, and I was so happy to get some Pellegrino water, because it's not always easy to find here in cases--darn expensive stuff, but I actually really like the taste of it and the bubbles help my stomach). I did the shopping online and boy, it wasn't easy picking out food for my family to eat while I felt queasy, but I got over it. Can't make them suffer because food doesn't appeal to me right now.
I'll have to look into Metromint water...always looking for a way to make drinking water more appealing. I just need TASTE! Of course, the oncology nurse already warned me tastes just won't be the same. Haven't noticed that yet, but I can see why people would lose their appetite if that's the case.
Hope everyone has a good night or keeps enjoying your day (depending on your time zone)! Off to see what I can make for dinner for my crazies.
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Hi Judy: Not sure if you have a Costco near you, but they usually have the Pellegrino in cases and it's less expensive than the supermarket. As for the Biotene moutwash, I think it tastes really nasty. My preferred mouthwash is a tea-tree mouthwash someone gave me or a Tom's of Maine mouthwash. But if you do want to get the Biotene mouthwash, most supermarkets seem to carry it as do Target and Walmart.
Merilee: never heard of Metromint water before. I looked online and see Wholefoods carry it, so I'm guessing it's not cheap.
I find that I crave acidic tastes. My current craving is for grapefruit which luckily are in season at the moment. I've loaded up on ruby red grapefruit. I have half in the morning and the other half at night. Just bought some lemons too, so plan on making some lemonade. I usually make it in a cafetiere which makes it easy to press the juice out of the lemons.
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Day 3 out of first treatment and felt queasy and tired all day---but took it easy and just did home stuff (computer stuff, paperwork)--did manage to go on the treadmill for a light walk for 30 minutes this morning though. Hope I can keep that up. I find I need to eat to manage queasiness--hope I don't gain tons of weight.
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AL
The Copmpazine worked for me. I took it even though I did not feel sick and I think it prevented it. I stayed on it 4 days and now have been off 2 and feel good. Good for you for getting on that tread mill, you go girl!
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Merilee, I think that hitting the Compazine right away (before the nausea ever starts) and continuing for four days without fail was what saved me from that nauseous feeling. I did like the acidic taste, too. Lemon drops became a favorite so I always kept them handy. I had a hard time finding the old fashioned Brach's kind but finally located them at our Walgreens.
It sounds like all of you are doing pretty well! Hang in there!
Rita
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Al, companzine didn't work for me even though I took it for 5 days after my first treatment but they did try other anti-nausea med's but emend is working great for me. Good for you on getting on the treadmill.......you've given me inspiration!!!
Merilee, glad you are feeling so well.....that's great
!Judy1973, hope you're feeling better by today. I know how that nausea feeling feels and it's YUCK! Hopefully the water helped that Merilee mentioned.
Hope everyone else is doing good right now.
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Okay ladies....it's me one more time today! Just showered and have to admit, first time I'm a little freaked out by how much hair is coming out. Did anyone else experience a major shedding after treatment 4? Trying not to worry to much but kinda am
! I had been so lucky up until now with only minor shedding. Anyone with advice......please!!!0
