CMF Question
Comments
-
js37
Hi, nice to meet you. Sorry you are having trouble with your IV lines. My veins are shot from first time with chemo in 2006. I even had a port in 2006 and I have a port for this treatment too. My veins just roll or collaspe. So I love my port. First CMF chemo yesterday went well, much better than TAC in 2006. Just looking forward to getting this all behind me and I intend to kick cancer's butt this time, lol.
Take care
Labby
0 -
Hi Labby, thought I recognized your avatar name...sorry you have to do chemo again...
hope it goes well for you...
hugs, Socal
0 -
socal
How are you doing? Thank you for your kind thoughts. It will be all okay. Been down this road before and intend to make it my last. Got my BIG Girl panties on and ready to kick cancer to the curb. Nice seeing you again.
Hugs
Labby
0 -
Welcome Labby........this is a great thread and like you I was really happy to have found this thread. I have just finished my CMF treatment on Feb 17th and will be starting radiation next week. CMF was definitely doable and I had minimum se's with it. Wasn't completely smooth sailing but definitely doable. I'm feeling great right now at 2 weeks out......I'm sure you'll do well on this plus everyone on this thread is great. Good luck and we're all here cheering you on......
0 -
cabmom thank you. I am looking forward to getting this over with soon. How many rads txs are you going to have? I am doing 30 after 6 rounds of chemo. Did you have a lot of nausea with CMF? I am taking Emend, but just the normal 3 days though. What did you take? What se's did you have? Sorry for all the questions, but I had a pretty crappy day 4, so just wondering. I am glad you are doing well, good luck with rads. Good thoughts coming your way.
0 -
Hi again labby...I really didn't have too many side effects until the third month..I had the trots badly and upset tummy...we didn't have emend back in 2001 that I know of..so I just had compazine..and immodium AD...(I should have bought stock in that company), but most gals have the opposite problem..I also lost about half my hair, my eyebrows, eyelashes, etc..
what worked for me best back then were the compazine suppositories, gets into the blood stream not thru the stomach..I also had progressive fatigue..and the dreaded neupogen shots..
BTW..has anyone else had a recurrance of hair loss...eight years later my hair fell out again..the doctors have no clue..
0 -
Just finished 2nd injection of Cycle 1 of MF (C taken orally). I found that I do the injection on Monday and am wiped out on Tuesday. I feel much better once Wed gets here. I have not had any nausea. I had them take the steriod out, so did not have it the 2nd injection...felt no difference, so will leave it out.
My scalp tonight is "tingley", which is freaking me out. I keep thinking this is a sign that my hair is about to start falling out. Here I am thinking I was going to be one of the lucky ones and not lose much hair at all. My hair is thin (but long), so I dont have much to spare. I think I may go wig shopping "in case".
I am now on my 2 week off period before getting injection 1 of Cycle 2.
Again, thanks ladies for listening to me vent...and for all the advice!!
0 -
Labby, day 3 or day 4 was always my worst day. Then things started to gradually get back to normal. The last week before my next treatment was really good (probably why they call it chemo holiday) and then that next treatment loomed up. Basically, I found the CMF quite doable. I had nausea but controlled it with Compazine. I learned to take it as soon as I left the treatment room instead of waiting for the nausea to hit. I took it for about 5 days and then put it away until the next treatment.
SoCal.......that's really strange about your hair. I'll be interested to know if anybody else has had this happen to them. I have a friend who did CMF 14 years ago and she had no hair loss in the years after the treatment. You are just unique!
Janina...come and vent any time it's needed. We've all had our share of venting sessions! I still think that you're going to be O.K. with the hair. You'll probably lose some but not enough for others to notice. Hugs. The hair issue is always a scary one for us!
Well, I'm off to get something done around here. Everyone have a great day. The sun is shining and that makes me energized and gives me hope that golf season is right around the corner!
Catch you later.
Rita
0 -
Hi ALL....hope everyone is doing well today. Well just back from simulation and it went really well and was really QUICK. I was shocked at how quickly everything was done....I was in and out in a little over 30 minutes. I will start rad's on the 10th due to a couple other appointments scheduled early next week with the medical onc. Looking forward to putting this behind me.
Labby, hi again
! I had 6 CMF treatments every 3 weeks....all IV and everything went well. I did have a few se's but all were manageable. As for the nausea med's. They started me on compazine (didn't work), then on to Kytril (didn't work-bad rash), then to zofran (didn't work-another rash), then finally to emend and it worked great so you hopefully will be very pleased with that. I did have some crappy days but after getting on Emend, it was much, much better. I still felt a little bad even the fourth day but then things got better.....I found each day that passed I would feel just a little bit better. I will say that as the treatments progressed it was a little tougher to get back to normal quickly......my #6 was by far the worst one for me but it passed and now I'm feeling completely back to normal. I think it will go much better than you're expecting.Janina, I understand how you're feeling but I do think you'll be fine with your hair. I had those same tingling feelings but they would pass as the days went by. I also understand the need to have the security blanket of the wig (I had already bought mine because I thought I would be doing TC and knew that hair loss was a sure thing but it helped me to even know that I had it through the CMF, however it was an expensive security blanket for me). Thankfully I didn't need it and I really hope and feel that you won't need it either. I know it's a tough call to make......good luck
!Hope everyone else is doing well..........
0 -
Hi ladies
Just dropping in to say hi and that all is well. This is my week when I am without toxins so I am feeling great. I can't believe my 4th treatment is already this coming Thursday. Man time is flying!
I have not decided about rads yet. So far I have not been able to get anyone to tell me why rads after Chemo makes sense. Seems to me that the chemo should do a pretty good job of cleaning up any cancer cells.
0 -
Hello. I had a good day, but now I am feeling nausea and it seems to hit me when I get tired. Maybe I should be eating more throughout the day. I have had my emend for the 1st tx., so I guess I can call for something else. CMF is definetly better than TAC, but I guess I am just tired. I think the surgery took a lot out of me. I guess it will just take some time and patience. Anyway hope everyone had a good day.
Hugs
Labby
0 -
My onc had me on both emend and kytril for my nausea---at the same time. It worked pretty well. So feel free to ask for additional anti-nausea meds. That is one thing they seem to be able to control.
Feel better.
Mandy
0 -
My onc had me on both emend and kytril for my nausea---at the same time. It worked pretty well. So feel free to ask for additional anti-nausea meds. That is one thing they seem to be able to control.
Feel better.
Mandy
0 -
hi all - Labarbara - sorry you don't feel good....definitely call your onc. or onc. nurse for better nausea meds.
Merilee - thought I would tell you what my onc and radiologist said about chemo and radiation. Radiation is necessary when there has been a lumpectomy or surgery without clear margins because even though chemo travels thru the blood stream, the surgery has temporarily disrupted the blood vessels in that area which makes the chemo not reach that area effectively. If a few cancer cells remained, well you know what can happen. Lumpectomies have a higher recurrence rate when radiation is not done. That is how it was explained to me! WOW - # 4 is this week - you are on the home stretch!!!!
Janina - hope you are doing well, and your scalp calmed down. I did not have that as a side effect - could it be new shampoo?
edited to fix my run-on sentences!
0 -
Aprilgirl1- you guessed it...all that crying I did this morning and it was the new shampoo making my scalp feel that way. It is a medicated shampoo for thinning, so when the medication part is on my head, it feels cool..like icy hot on skin, or Noxema on your face. Although I am prepared for SOME hair loss, the feeling was so much, all over my scalp, I thought if I ran my fingers through my hair, it would all come out. I am in TX and called my dad in NY, crying. Now I feel dumb!!
Cabmom-The tingling did pass, thank goodness. I have not bought a wig, have been looking more at the hats with built in hair hanging from them..but thought I would wait to see what happens first. If I lose SOME hair, then I can pull my own hair back everyday and put a hat on my head.
Ritajean-I think I am just paranoid!! Everytime I feel something, I think something is going on. For instance, I forgot where a place I was going to was located, just yesterday. Could have just slipped my mind since it has been a while since I have been there...BUT, of course, I wondered if my forgetfulness was due to "chemo brain". Seems I am looking for side effects that are not there. lol! I think I read too much on this stuff...although, every person's story is different, I look for ALL of it to happen to me. One cycle down, 5 to go...think that puts me towards end of July...so hope I "snap out of" all this paranoia soon! lol!
0 -
Thanks April for the feedback.
My Mastectomy was a year ago, so I am thinking that my circulation must be back to normal by now. I had a tiny incision in Novemeber to take out a 8mm size bump. By the time I would get to Rads that would be 6 months later. Both times I had clear margins. I just don't want to put my poor body vehicle through anything else. This toxic stuff is hard enough on it.
0 -
Labby, if you haven't already done so, try sucking on lemon drops to help ease your nausea.
Janina, I think we're all paranoid during and after our journeys. I had a good talk with my onc about chemo brain on Thursday. He says the blockages, forgetfulness and other brain "farts" that we have are not from the chemo. I guess new research suggests that it is a form of post traumatic stress, caused by the shock to the brain with the diagnosis, treatment, etc. He says there is a blood/brain barrier that prevents chemo molecules from entering the brain because they are too large to pass through the barrier. According to the research, much of the trauma diminishes as time passes but sometimes it takes about 2 to 3 years for the brain to return to a normal state. I hope he's right!
Well, I started my taxes the other day and today is the day that I'm going to finish them....with no more procrastinating. Then I'm going to get out in the yard, pick up some sticks, and enjoy the sunshine.
Everyone have a great Saturday.
Rita
0 -
Rita - I think your onc. is so right about the post traumatic stress. I don't feel like I have chemo brain, but I am not back to my old self either. I actually started working to keep my mind occupied. I am working at my son's school with kids that have learning differences, and I love it. Great hours, I'm home when my kids are home and will have summers off! I woke up thinking about my taxes - and the need for me to start an excel spreadsheet of my medical expenses (including transportation as I had to take a ferry to chemo and rads)..
Merilee - I hear you about putting ourselves thru toxic procedures! Listen to your onc. and radiologist and then YOU get to make the final call.
We are having the most amazing end of winter/start of spring. We actually did not have winter for the Pacific Northwest. El nino I guess!
0 -
I'm one of the few CMFers who does have chemo brain. It became quite bad with my 6th (of 8) Txs but it has gotten better in time. While PTS disorder and low estrogen may cause some of the cognitive issues in some people, there is no doubt that chemo can affect brain cells as it has in my case. My onc did not want to go over this with me, until I really insisted on it. She said that most oncs don't like to talk about chemo brain because they do not want to cause fear in their patients. But she admitted that there were studies showing that there are changes to the brain cells during chemo and that for some, not all, people there will be permanent cogniftive differences. A study done at University of Rochester highlights the actual changes to the brain cells from chemo, but also stresses that chemo is an important treatment and that one should not avoid it. I fully agree. All cancer treatment is a matter of balancing risk and benefit and chemo is one where, at least for me, the benefit outweighs the risks.
As for hair loss, I know everyone on CMF is terrified to lose their hair. After my 4th tx, I shed some hair and went into panic mode. I had tingling of the scalp--even my onc was not sure what was going on. But in the end, I lost very little hair and did not need a wig or scarf or any kind of cover up. Before I began CMF, I went to a wig store and tried wigs on. I was told by the owner that she could order a wig and get it in to her shop in 24 hours after the order so all I had to do was phone her if I started to shed hair. So I never bought one, but did have one ready so to speak.
You gals in treatment, don't worry. CMF is one of the most doable of the chemos. It gets good results too. My friend's mother was on a CMF trial many years ago. She had several positive lymph nodes. And lived until her mid eighties (about 30 years after her chemo) when she died of something else.
Cyber hugs to all.
0 -
Hello all, It has been 1 week since 1st tx of CMF chemo. I was having probs going to the bathroom, now I am in there all the time. Oh well, I guess it could be worse. I hope everyone had a good day.
Take care.
Labby
0 -
I have been watching this thread & have found it very helpful. I had my first CMF treatment last Thursday after 4 X AC tx's.
MaryNY -Our treatments are similar & your comments have been encouraging. Unfortunately, I seriously hurt a disc (while vomiting) in my back 6 weeks ago & could only lie down or walk for 3 weeks with severe sciatica. I can now at least sit down, and cant wait to be able to drive again & feel normal. To top it off I had a cough, that pushed on the disc making the pain even worse, so Tx's were delayed while I got over the cough which may have been a reaction from AC.
I am on a 28 day cycle where I have the treatment on Days 1 & 8, followed by 14 days of tablets. The first 4 days I felt Nauseous in the mornings ( the afternoons have been OK), with Day 3 my worst. I took the advice of drinking lots of water with & after the tablets & have found it to reduce the nausea enormously much to my relief.
My onc described the nausea as only like having morning sickness - like I should feel happy about that. Personally I didn't like morning sickness, I know it is early days but I am feeling like this is do-able like others have reported on this thread. Vicki
0 -
Welcome Aussiemom and the other newbies.
I am sorry that you have to join the group no one wants to join. But since you are here, I think you will find the CMFers are a wonderful group who will be happy to help in any way they can. I never would have survived chemo without these wonderful gals.
Mandy
0 -
Welcome AussieMom......It sounds like you're off to a good start. Come backl and post often.
Labby, things should be easing up for you now and you should have several good days ahead of you! Hang in there.
Rita
0 -
Hi ALL! Went for my followup with the medical onc today, three weeks out from my final treatment and it went well other than I'm still having the pain under my breasts so I'm going to finish up rads and then do a bone scan just to be sure. That will be in 8 weeks....hopefully all will be well but I'd rather know than not ........ I start radiation tomorrow....can't believe it.
Hope everyone else is doing well......
0 -
Hi Aussiemom/Vicki: You are the first person on here who had the AC followed by CMF like me. Nice to meet you. I had treatment every two weeks by infusion, no tablets. How many cycles of CMF will you have? I had four, though the onc had originally suggesting doing more. I had the nausea too after each cycle, usually days 3-5 were worst.
Sorry to hear about the back pain. As if you didn't have enough to contend with already. However, delaying the CMF treatment might have been a good thing. I think going straight to CMF after AC was hard for me as I seemed to experience SEs to a greater degree than others on this thread. The onc said CMF would be so easy after AC. Easier maybe, but not easy. I'm glad I'm out the other side now. After chemo, radiation just seems so easy.
0 -
Thanks for the welcome. After such a good day yesterday I was very disappointed this am when I felt quite sick even before I had my tablets. I'm wondering if I didn't drink enough before hand. My Onc told me to have my anti-nausea tablets, Stemetil, before breakfast, & chemo after breakfast. I had found that by having the Stemetil about 1/2 hr before brekky, & chemo 1/2 hr after brekky worked OK, but obviously I need to be patient & find out what makes the difference.
MaryNY - I think you are right about delaying the treatment as being a good thing. I feel that it has given me the chance to regain more stamina. I was feeling like I would climb to the top (well maybe 3/4 of the way there) of this hill, only to be pushed backwards to the bottom again,before starting all over.
labarbara2006- I was warned about constipation & the runs. I hope you are doing better now.
0 -
Please send positive light my way in the morning. I go in for treatment #4.
0 -
Sending some flowers to light up your day Merilee
0 -
Hang in there. I rejected port too -- didn't need any more scars. I wound up having regular chemo -- and then an additional 10 rounds (every 3 weeks) of Avastin as part of a clinical trial. Luckily my nurses we kind and apologized profusely everything they couldn't get something in my tiny veins. There was one 'expert' who could get it in almost every time.
Tricks that seemed to work: drinking lots of gatoraide (or similar drink) before treatment & the nurses wrapped my arm in a warm blanket to encourage the veins to pop up.
Good luck -- hold your ground!
0 -
Thank you Lisa
0
