CMF Question
Comments
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Jeannie, I'm glad the port insertion is behind you. I hope you're not too uncomfortable. I'm sure tomorrow won't be pleasant. I'll keep you in my prayers.
My prayers to the rest of the ladies going through chemo.
Deborah
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I met with my surgeon today and she was so positive. She said my onco was not a waste at all. Even though I did have a lot of positive nodes and a low score she said it told us a lot of the biology of my cancer. She said staging has nothing to do with it. She does not like numbers and statistics because our cancers are all different. She said what we learned from the surgery, path, and onco score is I don't have an aggressive cancer and it has been there a long time. After the surprize of the lobular showing up in my path from the lx ( they went in to take a 8mm IDC) my bs took the time to get all of my mammograms for yrs back and said as she compared them each yr she could see the tissue getting denser with each yr. She said it is typical for lobular. Most of the time they only compare it to last yrs mammo so they don't see a big difference. I talked with her about CMF and she was positive about it and she does attend all of the tumor board meetings and goes to a lot of bc seminars all over the country. I have an appointment with my MO on Monday and we will discuss if this is an option.
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I am on treatment 5!! and hanging on to my hair, going to work, taking it easy and trying to eat well. The end is in sight..good by trucking to treatment, headaches, minor bruising, bloody noses..
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Hi- I have a few questions if anyone can help. Did anyone have a port in there arm or didn't have a port at all?
Are there a lot of foods to avoid while doing chemo? Someone said no fresh produce.
Also are the benefits of cmf different if you do it every 2 weeks, every 3 weeks, or weekly?
I want to have as much info before I meet with the MO on Monday.
My hair dresser said I should start using Nioxin now. Did anyone use this during chemo?
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As you may know, I got a port under my collar bone on Monday. A friend of mine had one in her arm and hated it so much, she had it removed. Arm movements really hurt her. Another friend wished she had a port when she went through chemo. That's just my info; others were fine without one.
As for the rest of the questions, I'm curious, too. You should have a chemo "lesson" by your nurse before you start that will answer some of these questions.
Where do you buy Nioxin?0 -
Jeannie- I got my shampoo and conditioner from my hair dresser, but you can buy it on line as well. He suggested I start using it prior to chemo.
I have to ask. Did it hurt to get the port put in? This part freaks me out as well.
I can't believe they took 39 nodes from you. Do you go to an LE therapist? I started going right after surgery and it has done wonders. She is great.
I have also done some research on foods to eat during chemo that help keep your white blood cell count up.
http://www.naturalnews.com/028275_white_blood_cells_immune_function.html
When are you starting your chemo? I am going to start after Memorial day mostly due to work and it is really busy that weekend and I want to get some hours in prior to.
I also have been comparing CMF to the newer chemo's and the difference in long term suvival is very mimimal, only 1-2 %. The newer ones are really harsh on your heart and I don't want to go through all this to end up with heart issues.
I have red hair as well. I have a ton of gray hair so I do have to color it. Do you know if we can have our hair colored during treatments?
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Diana, thanks for the info. The port didn't hurt going in but it hurts some now. I haven't had to take narcotics for it, just Advil or Tylenol. I even got a 60cc fill yesterday in my TEs and I was okay. It is very doable. Apparently there are risks with the port, like with anything, but I know it's best for me.
Yes, I was surprised when the surgeon told me she took 36 nodes (3 sentinel nodes before). I am seeing an LE therapist and doing the Lebed method at home.
I only recently colored my hair red because I thought I wouldn't be doing chemo. Coloring it during chemo is not allowed, according to everything I've read. So I am going to look pretty gross as my color grows out! I think I'll get a red wig. I just looked up Nioxin and it said it wasn't for chemically processed hair?
I start chemo on the 25th. I wish I could start this week but they want the port to heal this week. I chose Fridays for chemo so I have to wait until the 25th.
I just do one thing at a time, try not to think about how long I'm going to feel lousy, and I just think of all this as a seasonal job. It will be shorter than a pregnancy. We can do this!0 -
Jeannie- I called my hair dresser this morning and I just use the shampoo on the roots and reg. shampoo on the rest of my hair. I will look gross with gray roots during chemo.
It being shorter than 9 months of being pregnant is a good way to put it. Instead of a baby afterwards we can get our squishy girls and we won't have to get up every 3 hours to feed them.
I am praying that we don't feel too sick during this. How many months exactly are you doing the chemo for? I work weekends so I will have to plan to have chemo on my day off and then take the next day off as well.
I read that if you take the pill that is an option for CMF you are more likely to have hair loss. One thing that the MO in Boston told me is they know our hair will grow back.
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Well, if I lose my hair, I lose my hair. Like your MO says, it will grow back. My MO says it's more effective to take CMF in pill form, not to freak out those who have it in infusion. I am having light doses of CMF every week for 24 weeks. 12 weeks, then rads for 6, then 12 more weeks. We'll see how it goes. My MO is still saying that if I react to the chemo horribly, I can stop because my Oncotype score was fairly low, although there are really no good studies relating Oncotype to those of us with cancer in nodes yet. I am going to a well-regarded cancer center in the NW so I feel like I am getting good care. It has been a wild ride so far, because in the beginning we thought it would be a simple lumpectomy with rads. Now I've had a BMX and am having chemo and rads. And the the anti-hormonals later, of course. I was really hoping I wouldn't have to have TEs for a year or more, but I haven't had any problems with them, so I am blessed so far. I am growing foobs in my belly for a later DIEP. I will be glad to be rid of that fat! Not looking forward to that surgery, though.
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Jeannie- even with 17 positive nodes my onco score was a 6. It is all so crazy. I too went in for a lumpectomy with the notion of waking up with the mammosite in place. When I woke and felt and it wasn't there I knew I was in trouble. She had taken 4 nodes during surgery and all 4 were positive. When I went back to see her and got my path report I had a melt down and had to leave for a bit and come back. No clean margins and tons of dam lobular in every specimen that did not show up even on the MRI. My path from my BMX is just as ugly. I had rads on the left side 8 yrs ago and I did get reallly tired half way through it. Just no energy. I did continue to work though. It was hard because my son was 5 then and full of energy. Now he is 13 and it won't be any easier with a teenager. I too am getting used to the tissue expanders. I am not doing the diep though. Just alloderm and silicone implants at the exchange. I am going to have my ovaries out at the time of the exchange. All doc's agree that is a good choice being ER and PR positive. Just a few yrs ago based on my path reports I would have been staged the same as you, but they have since changed the way they stage BC. To me it is all numbers and we are all different. My surgeon said the more important thing is the grade. We are not grade 3 so we are lucky in that sense. I don't know about you, but I have so much more that I want to do in life so I plan on sticking around for awhile. I am trying to be as positive as I can and live my life as I would be without all of this crap. I watched my dad get so consumed with the fact that he had cancer and not live with the time he had left. I refuse to do that. He passed 8 days before this past Christmas and I really miss him.
I put on a regular bra today and I look so normal. I actually have cleavage and no one would know any different.
Did they find any other ILC after your mx or did you have just one tumor? Lobular is so weird. Very sneaky. I am multifocal.
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@Dianarose: Just had 6x of CMF today .. 2 more to go .. I go every 3 wks. .. Have not had any serious side effects .. Got a rash last 2x .. Prob.drug reaction to the Cytoxan (per Dermotologist & MO .. Hair loss not too bad ..sheds after every treatment but is curly so it doesn't show too much .. Use Nioxin Stage 4 for colortreated hair .. Bought from Amazon .. No coloring but I use Roux color mousse and it helps with the gray .. They also make a plain temporary color .. Worth a try ..it washes out with each shampoo ..Ido not have a port .. Veins are good and have not had any problems .. All drugs IV .. GoodLuck you'll do fine.
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SMVA- thanks for all of the positive words. I feel good about my decision. Half the battle was making the decision.
Have you been working through your treatments? How about fatigue?
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Hi Dianarose, no I am not working. I am 71 yrs. old and retired. Do not notice much fatigue, except maybe on day 1 or 2 after treatment. It really is a very doable chemo, compared to what I have seen other people go through. Good luck again and keep us posted.
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Smva, your post about CMF being doable made my day!
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smva..So glad you are doing well! Now you are on the downward slide! You go, gal!
Dianarose and Jeannie....It looks like you have your plans in place now. Whew! I just hated those decisions at first.
I ate pretty much anything that smelled and tasted good during chemo. I was told not to eat my favorite foods because if I did get nauseated, I might associate that feeling later with the food. I didn't have any trouble except that I could not stand the smell of Chinese or Asian food during chemo and I still can't stand that smell. I didn't eat it during chemo or get sick from it so it's rather strange but I've run into a couple of other gals who no longer can stand certain smells or foods. I kept a stock pile of the old-fashioned lemon drops and they relieved any nausea that I had.
Also, I am one of the few who colored my hair during CMF. I was told it was OK unless I experienced burning. I had my hair dresser do it and had no problems.
You gals will do just fine. If you have any side effects, they are usually easily corrected. Chemo has come a long way from the horror stories that we used to hear.
Hugs to both of you.
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Thanks, RitaJean, I have a supply of sugar-free lemon drops already. I enjoy Chinese food, so I hope I can handle the smell. It would be really devastating if I suddenly hated Mexican food or the smell, though! With a port put in, a fill and now physical therapy, it's been a physically demanding week for me. But the sun is out and it's a new day! Have a good one, everyone.
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Smva- you are so positive and a great inspiration for me. Thanks.
ritajean and Jeannie- My hair dresser said he would use foils when I need to get in touch with my roots and it won't touch my scalp.
Is anyone doing their chemo every 2 weeks and if so how doable is it?
Did anyone make the decision to do cmf verses the MO suggesting the AC/Tx?
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Hi Dianarose: I had dose-dense chemo (i.e., every two weeks). All chemo is "doable" -- if you have to do it, you will. It may not be pleasant at times, but you've got to think of the long-term benefits. We need to realize how lucky we are to live at a time when these treatments are available. In the 50s and earlier, treatment was surgery and radiation and those woman who had locally-advanced disease (node involvement) had a very poor prognosis. Chemotherapy has changed all that.
I got chemo recommendations from four oncologists. They were (1) TC (2) AC-T and (3) CEF (4) AC. I went with the last one since I wanted to avoid Taxol/Taxotere because of my medical history and this oncologist did a much more thorough review of my case and medical history than the others. I felt the CEF might not be agressive enough since I had positive nodes. So I started out with AC which I was having dose-dense (every two weeks). The oncologist considered giving it to me for six rounds but I was not tolerating it well, so I only had four rounds of AC. Then she had me take four rounds of CMF as added insurance.
The good thing about having the chemo every two weeks is that you get through it faster. The downside is that you can have more bad days than good -- I found that towards the end, but I know a lot of women tolerate chemo much better than I seemed to.
While I found chemo difficult, I'm glad now that I did it as one only gets one chance to nip this thing in the bud.
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One week after 6x .. No rash this time, guess the pre-treating worked .. Hair still shedding, maybe a little worse this time .. 2x more to go then done .. Looking back, not so bad!!!
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DianaRose and Jeannie , glad to see you here. I spent alot of time here when I did Cmf. So much support!
I used Nioxin shampoo during chemo. I also used Biotene toothpaste and mouthwash as I sometimes had dry mouth. You can also use Tom's of Maine found at Whole Foods or Miracle which is a prescription.
Hi Ritajean...glad to see you...and that all is well! I am coming upon 6 years this Friday.....I am sooo excited and dancing all over...another year cancer free!!!
hugs
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Jeannie, just a note to let you know that I did the C by pill also.
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Hi, this is what my cmf plan is. I will start on Wednesday with one round via IV along with 3 pills for the c part. Then I will continue the pills each day and have another round via IV on day 8. He said a 20 day break after that, but when I picked up my prescriptions today it said 3 pills a day for 2 weeks. I will have to ask him about that on Wednesday. I will admitt I am terrified to go on Wednesday. Has anyone had this regimen and what should I expect the 1st time? I hate throwing up. I hope that doesn't happen. He gave me Prochlorperzine for nausea and another one that has to get approval from my insurance first. Which makes you feel worse, the IV crap or the pills? Do you feel yucky right away or is it the next day or day after that?
Candie1971- I drive by Tom's of Maine everyday on my way to work. It is made in Kennebunk Maine. It is in all the stores here. So happy for you and your 6 yr cancerverary
I started using the Nioxin 2 weeks ago. My hair dresser said it was best to start using it before chemo. I don't use the conditioner as it made it so I couldn't get a rake through my hair.
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Diana, now I am getting nervous! I only have one more day that will forever be "pre-chemo." I think the fear of the unknown is the absolute worse thing. I hate throwing up, too, or feeling nauseous all the time, a recent experience with Vicodin. But all of this is for a good purpose: killing this sucker. We can do it. I like that Michael J. Fox quote that talks about not worrying too much because if it doesn't happen it's a waste of time and if it does happen, we've lived it twice. No, thanks, once is enough.
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Jeannie- we can do this. I didn't take any pain meds after my bmx for fear of throwing up. It is a big pet peeve of mine. I went on a cruise to Nova Scotia once and threw up for 12 hours. I hope I don't feel like that ever again.
Everyone talks about certain odors of food bothering them which has me worried. I work as a pastry chef along with regular chefs in the kithchen. I hate the smell of shrimp cooking without chemo. I used to sell cars and I had a smell trick. A lot of people will spend 40k on a car, but not invest a dollar in a bar of soap. I used to have to take them on tests drives and they would smell so bad. Especiallly in the winter with the windows up and he heat on. I kept a bottle of vicks vapor rub in my desk drawer and would put a dab up my nose before the test drive. Worked like a charm.
For those who took the c part in pill form it says to take on an empty stomach. My MO gave me no instructions what so ever to do the day of treatment. I think I am the first patient to get cmf with him. He had to call Boston to see what regimen to use.
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I did have another question. Did you stop having periods with cmf?
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Good luck Jeannie......it will be ok
Diana I will be back tomorrow to read the new posts...gotta go for now...hugs
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Diana, I did the same regimen. I took 9 pills a day for 2 weeks on an empty stomach.I had 12 treaatments ofer 6 months. I did not throw up at all. I did have nausea so I started taking the P stuff they gave you and I wound up taking it everyday the whole time and it pretty much helped me. Be sure they do the infusion SLOWLY. That will help reduce the side effects! Insist on it! I like your remedy for odors..I will have to keep that in mind. How nice that you are a pastry chef! Remember that everyone handles this differently.
hugs
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Diana and Jeannie, I predict you two will breeze through CMF. I only got *slightly* queasy only once or twice, and it was quickly alleviated by the Compazine (prochlorperazine). I ate whatever I felt like through the whole treatment. My regimen was once every 3 weeks by infusion.
I'm post-menopausal so can't speak to whether your periods will stop with CMF. Somehow I doubt it, though.
Jeannie, I see you're starting today -- good luck! I think you'll be surprised by how much less awful it is than we fear. ;-)
One thing that is bugging me is that I'm almost 2 months out from the end of CMF and my hair is still coming out as much as it was during treatment. I have fine hair but used to have a LOT of it. Now it's noticeably (to me) thin in front.
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smva, It's so nice to read your posts since you are ahead of me in CMF treatment. I am doing all IV treatments every 3 weeks for a total of 8, which is what I think you are also doing. I just had #4 this past Wed. - woo-hoo! I am so happy to have reached the halfway point. I too have hair shedding, but not noticeable....so far. I use the Nioxin shampoo as suggested by others. This being my second day after treatment, I am happy to report that I feel better than I did on the second day with my previous 3 treatments - I was referring to them as "Frumpy Fridays." I was recently worried about my liver enzymes being elevated at last month's treatment after a vacation of wining and dining but they are coming back down with no cocktails or even Tylenol since the trip. My MO has advised me to keep this regime until I am done with the chemo. I have needed a Neulasta shot after each treatment when my numbers dropped after the first round. Luckily, I haven't had any of the muscle or bone pain side effects : ) I try to do everything I normally do - working, walking, socializing and don't let this bump in the road take over.
Please keep me posted on how you do with treatments 7 & 8. I hope you continue to do well
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etherize, you can still be losing some hair if your are doing radiation. Oh, your stats say you are. Hair loss is a SE of radiation also. Mine stopped doing that about a few weeks after I stopped the radiation.
hugs
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