CMF Question
Comments
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Hi Sara: sometimes it's surprising to see someone's Oncotype. Without that, you might even have been a candidate for no chemo. But your Oncotype seems high for someone with a Grade 1 tumor (I presume the Grade 1 was on the right breast?). I think oncs are going to take Oncotype score into account more in making the chemo decision.
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Welcome Sara! Please stop in often and keep us updated. This is an awesome group of ladies who can offer many great suggestions and support as you make your journey. I love your avatar. I have a one-year-old cat that looks just like yours. I did a "double-take" when I saw that picture.
golfergrandma....I hope you had a great game yesterday and had lots of fun.
cabmom....I will keep you in my thoughts and prayers, hoping beyond hope that the masses are nothing.....and that what they are in most cases. I understand the anxiety that goes with this, but hang in there and keep us informed. You are so right.....it is always something anymore! Hugs to you, gal. Do you have your next biopsy scheduled and if so, when is it?
Well, I am also hitting the golf course this afternoon. The weatherman is predicting showers for late afternoon and evening, and I'm hoping they stay away until my game is over. We really do need the rain, though.
I hope that everyone has a great Friday.
Rita
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Welcome Sara.....hope your 1st treatment goes well. Will be keeping you in my prayers.
Ritajean, not sure about next biopsy date because I had to switch doctors again when I came back to the midwest. My appt is on Sept 12th with the new specialist.....not sure what he'll do that day. Can't believe it took my gp so long to get me in but I think they stay pretty busy. Just praying that it's NOTHING. Thanks so much for the thoughts and prayers. I really couldn't get through some of this stuff without you gals.
Hope everyone else is doing great
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Hi Girls - wow, I am touched by such a warm welcome. I am privileged to have your support and advice.
Golfergrandma - Congrats on finishing your 6 months. Sounds like you handled it like a champ. Being that our dx'es are pretty similar, I suppose CMF is the modus operandi. I too hope that it would be sufficient to prevent recurrence (gulp!)...\
MaryNY - What you said about that Oncotype score is soooo correct. Breast surgeon, PS, and family doctor friends all suspected no chemo until that 21 score came along... and you are indeed correct - the 9 mm tumor was in the right breast - also found was DCIS & LCIS; and LCIS in the left breast. Was surprising to find my self in the gray area...
Ritajean - Anyone who has a black cat is an automatic friend of mine... he is my little buddy - he's 15 and still spry and playful
Cabmom - I'll pray with you that this is NOTHING indeed. Sending you my best wishes for comfort and strength until the appt. If it was me, I would be calling that doc's office every day and do whatever it takes to make them move it up - cry, beg, whatever it takes...
Also, does anyone know about Ki-67 scores? My MO tested mine after I asked her what my number was. She said MSK doesn't test for that. She decided to test after I asked my score. It ended up to be 20%, which she says is "in the middle." I can't find anything online anywhere which shows a lab range for Ki-67.
And if anyone would feel comfy letting me know what to watch out for - my onc seems to think I'll sail through it with a bit of nausea, some GI issues, and the loss of my hair. She seems to think I can work and live life pretty normally. I will be going every other week instead of every three.... I am scared about "chemo-brain" and about any potential CMF side effects that are permanent...
Thanks to you all for such a warm welcome. It is appreciated!
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Hi Sara, just wanted to join into our gang to welcome you...we have all been through the CMF..I finished up over 10 years ago now..just wanted to give you good encouragement...one day at a time...one step at a time...you will walk the walk...hugs, SoCal
Don't forget to drink lots and lots of water...
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Sara: I've also been curious about the Ki-67 test as I didn't have it either but have seen other people mention it. None of the four oncs I saw mentioned it. I was treated at MSKCC too and in fact the onc I met said that they didn't use Oncotype DX in deciding on chemo. Now that's almost two years ago so maybe they have changed their policy.
I can't really comment on the SEs of CMF as I had it after four rounds of AC, so that confused everything and I was never sure whether what I was experiencing were the lingering SEs of AC or were from the CMF. But based on what others say here, CMF is tolerated very well by most women. Having it dose-dense (every two weeks) means you will be finished sooner. If you are having eight treatments you will be finished in four months. I think they like to do dose-dense with younger women or those they think will tolerate it well. Typically I found Day 3 or Day 4 to be the worst day after treatment. I was getting a Neulasta shot on Day 2 to boost white cell count (which I think is necessary with dose-dense) and I would attribute some of the SEs to that.
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maryny - thanks for your good explanation. As far as the ki67 - they do not generally test it at msk - my doc just tested it for some reason AFTER I brought it up. I didn't know she was going to do so until it was already done!
I wonder if any of you gals who did dose-dense CMF (every 2 weeks) - how much hair did you lose - and at what point did it start falling? Did you lose hair elsewhere besides your head?
thanks : )
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And thank you Lisa for your sweet words. How wonderful that you are 10 years out from chemo!! Congrats.
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Sara: I didn't lose any hair on CMF ... but that was only because I was already bald. Lost all my hair 16 days into AC treatment.
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Sara1970- Tomorrow will be my 8th CMF tx, I have very thick hair to begin with but I just shedded aprox 6 days after tx and it gradually stops until the next tx. No on can tell but me and my hairdresser. I had more hair come out with tugging on my long hair everyday. Do you go to MSK in the city? Take care -Patty
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Patty: that's your final treatment, right? Hard to believe that you are almost finished! How are you feeling?
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You guys are awesome. I have a better idea about what I'm walking in to thanks to all of you.
Patty, congrats on being almost DONE! Hooray. I'm glad that you have been able to go through most of chemo with hair. Did you do dose-dense, or every 3 weeks? Am I reading you right that you lost hair around day 6 of every treatment, then it would slow down until the next one? I do go to MSK- sort of by default since I had surgery there. My surgeons were terrific, but honestly I'm not feeling confident about the tone and communication between my MO and I... I'm thinking of switching to NYU after tx 1...
Mary, Thank you for your kind response. What would you say would be some things to watch out for and to look for as I start CMF? Any tips or tricks to avoid any SE's? I have already started drinking a half-gallon on water daily in anticipation of Friday... Ugh!
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Sara1970- I started out to do every 3 weeks, but do to my blood counts being low I had to hold off a week the dr. explained I would need neulasta shot 24 hrs after tx so I decided with along with her to do dose dense. The neulasta is worse than the chemo for me it causes me bone pain so I take claratin the day of yhe shot as some people say it lessens the pain. I have never not taken it so I wouldn't know if ghere is any truth to this and my pain is rough for two days it is doable I still cook and clean go out walk my dog, shop. I just rest when I need to. My hair starts shedding aprox the 6th day after tx then it stops . I hope you only shed too. I cut my longer hair to shoulder length before I started , yhen during the summer I cut it again. I just cut It a lil shorter last week as it became straw looking
ng, now its looking good. My tx is at 9am today I have to start drinkig my water . I'm sorry you feel the need to change drs. I go to MSKCC in tarrytown and have a wonderf relatiobship with my Dr. PM me if you want to talk about it. Take care- Patty0 -
MaryNY-done goday . I honestly feel good. I have to say ghank you for all your advice along with the others, I have been able to do this because of you kind ladies. I know we were gking to meet up, things got hectic ... My son is 18 in love lol... nd is being. Pain in my butt so... But ty for everything, I will stay on here to try and help others. Take care Patty
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Patty: maybe we can meet up once you are through this last treatment and before you get into the daily grind of rads. I'm sure you'll feel elated once you have the last treatment over today.
Sara: have you been to NYU for a second opinion? If you are really unhappy at MSKCC, I think it would be better to make the switch now rather than waiting until you are in the middle of treatment. Would part of the problem be that the MO is telling you things you don't want to hear? I didn't like my MO first either as she was very direct and of course telling me that I should have chemo. As for SEs, I think the most important thing is to drink lots of water. Also use a mouth rinse to avoid mouth sores. Rest when you need it. Try to eat healthily. Your skin may become very dry esp since you will be going through this over the winter months, so moisturize a lot.
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Hi Sara and everyone else!
I went away for a few days and so much has come up here.
First, Sara, welcome. The gals here will get you through CMF and you will be done before you realize it. You asked a few questions---I did not do dose dense CMF, but I was not offered it either. At the time that I did chemo (December 2008 to May 2009) dose dense CMF was in trial. One of the gals here, Colleen did dose dense but I do not know the results of the study she was in. It was at MSK in New York. Then about Ki67. I can only tell you what it means if it is very low---mine was less than 5 per cent and it means that the cancer was not dividing alot and not that aggressive. At the time, my onc said it was not an important test (I asked for it) but a few months later she told me she'd been to a conference in Switzerland and that it was actually very important. You might ask your onc to explain in more detail what your results meant. Then(this is a real run on)-- I did CMF with 8 doses, 3 weeks apart. I cut my hair fairly short before chemo and while I did have hair thinning, I did not have real hair loss. I think only I knew. After my fourth tx, I lost alot of hair and even had scalp tingling...I was sure I was going to lose all of my hair...but I did not. Just like that it stopped and my hair maintained itself for the rest of my treatment. And one more thing--I was not able to drink water during my whole of chemo--it just tasted unpleasant to me---but i was able to drink natural italian soda in lemon and orange; sparkling water. So if for some reason water does not do the trick after your treatment, then try some other liquid The main thing is to keep drinking fluids. I hope that has answered your questions.
Cabmom: I'd scream and sit in at the doctors office to get the biopsy pushed forward. While it is probably nothing, it is very nerve wracking to have to wait. You will be in my thoughts and prayers while you wait.
Golfergrandma: you are a superstar to have finished chemo and kept your golf swing going. All the best to you and congrats!
Patty: WAHOOOOOOO!!!!! If I read correctly, you are at your last chemo. Congrats and hope to hear from you.
Enjoy the rest of your summer everyone and sending huge cyber hugs to all.Mandy
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Hi, Im in the car on my was home from my last tx. Ttyl-:) Patty
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YEA! Patty is a chemo grad! Super job, gal!
Sara, I didn't have the dose dense chemo. I went every 3 weeks and I didn't lose enough hair for anyone to notice. I had some nausea, and found that lemon drops worked well to squelch it. They became my greatest friend. When water started to tast yucky, I went to Crystal Light, as it's so important to keep hydrated and keep those chemicals washing through your body. Ask for some ice chips to suck on while taking your chemo. These seem to keep the mouth sores away, which are often associated with CMF chemo. I also purchased Biotine Mouthwash and Toothpaste and Wal-Mart and used it faithfully during chemo. I think you will find CMF very doable.....just not something that you really WANT to do. I had my treatments on Thursdays and if I was going to have an "iffy" or "off-feeling" day, it was usually on Sunday. I bowled and did most of the routine things in my life between treatments. You can do this, gal!
Well, I need to run some errands so I'd better get moving. Hugs to all of you!
Rita
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I think I am in love with you all - thank you! And first, congrats Patty. Your completion of this and positive attitude is just what I need as I begin this...
Mary - I really liked everyone and everything at NYU. Apparently there is a shortage of 5FU right now, and they were not comfortable putting me on a dose-dense schedule until they had more info about when the shortage will end. Read the op-ed piece from the NY Times (by Rahm Emanuel's brother) from 2 Sundays ago - it should explain the nonsense behind the drug shortage. That said, first tx at MSK, and then we'll see what happens.
Mandy - wow, your answers sure help me a lot. Glad that your Ki-67 score was nice and low. Strange that I have favorable pathology but a 20% Ki-67 score and a 21 Oncotype score (although we had Genomic do a re-test and it came in at 17. Same thing, though, more-or-less). So it sounds like you handled the CMF like a champ. I appreciate all the detail on your hair. I was going to go and purchase a nice human-hair wig, but perhaps I may not need it. Or at least not right away. Maybe I'll go back and look for Colleen's posts and see how she did on her dose-dense.
Ritajean - Your positivity just jumps off the page. Thank you. You have given some marvelous tips here. I actually bought some Kool-Aid packets incase water starts to taste gross. Loaded my fridge up with different healthy iced teas too. I did not know about the ice chips so THANK YOU for that also.
What a blessing. You gals have taught me a lot.
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Sara: I found the article by Ezekiel Emanuel, it's very interesting. It says: Of the 34 generic cancer drugs on the market, as of this month, 14 were in short supply. However, it doesn't mention any specific chemo drugs. But today fluorouracil (5-FU) was added to the FDA's list of Current Drug Shortages. I'm hoping that oncologists don't modify their drug recommendations based on what drugs are readily available instead of choosing what's best for the patient.
Sara, in your case, did NYU suggest an alternate drug regimen?
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WOOHOO Patty
! Huge SMILE just for you.....so happy that you are done! Way to go!!!Sara, I can't really add anything that all the other ladies haven't already said. Like the other's I'll stress drinking lots and lots of water, fluids! You really can do this and I'll be praying that it passes quickly for you!
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Sara
I sent a private message.
All the best to everyone.
Hugs
Mandy
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Hey Mary:
NYU could offer an oral replacement for 5FU, but they could not do dose-sense with the oral, as there's no study or proceeding trial with the replacement. I could have began with the oral on an every-three-weeks basis until the 5FU became available again. Hence, I'm at MSK for now... who has plenty of 5FU stored and can administer dose-dense...
MaryNY wrote:Sara: I found the article by Ezekiel Emanuel, it's very interesting. It says: Of the 34 generic cancer drugs on the market, as of this month, 14 were in short supply. However, it doesn't mention any specific chemo drugs. But today fluorouracil (5-FU) was added to the FDA's list ofCurrent Drug Shortages. I'm hoping that oncologists don't now how to modify their drug recommendations based on what drugs are readily available instead of choosing what's best for the patient.Sara, in your case, did NYU suggest an alternate drug regimen?
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CABMOM - Thank you for your prayers. I'm grateful for them!
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When we returned from 2 days away, there were many new messages!
Patty - CONGRATS ON FINISHING YOUR TX! YAY, RAH! Onward and upward from now on!
Mary and Sara - Am keeping up with your progress - keep those fluids coming! I did not experience nausea nor mouth sores - bought the bioten toothpaste and mouthwash, but didn't need it. The neulasta shots were worse than the tx. They caused bone pain (especially back!) and some GI problems for me. The first few days after my tx, I had these extreme hunger pangs like something was eating my stomach so I ate something to relieve them. My appetite never waivered (unfortunately). I think I'm the only one who lost alot of hair - bummer! So you should not be too concerned about it. Keep us informed and stay cool!
Cabmom - Have you heard from your dr.? Prayers.
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I have a box of Allegra-D - this is similar to Claritin, correct? Should I take an Allegra-D with my Neulasta shot? Do I take it prior to the shot or at the same time? Should I take a few more doses afterward? I think it's every 12 hours...
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Hey guys! My appointment with the specialist is still on the 12th and I tried to move it up with no luck....so I'm leaving this in God's hands
! Forgot to tell you guys but due to the fact that I did not stay in menopause after chemo, I will be taking a shot called Lupron until I can make some other decisions. Unfortunate for me but I've not been able to get it under control and the only options are either the shot or a hysterrectomy. Not ready to make that decision yet.
Sara, I really hope you don't have to have the Neulasta shot. I was fortunate and did not have to take one. Hoping that you'll be lucky too. Not sure if anyone has mentioned the Nioxin hair products to you yet but they were great.0 -
Sara - I don't know if Claritin is the same drug as Allegra-D, but the D is a decongestant. Claritin is just once a day. I would take the Claritin the morning of your shot.
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Cabmom - keep calling that office every day. They always get cancellations. Get the name of the person who answers the phone and be diigent and vigilant! And yes, unfortunately I absolutely will get the neulasta shot since I am on the dose-dense (every 2 weeks) schedule. Good times : P
Golfergrandma - Thank you for the Claritin tip. I will buy some tomorrow and take it Saturday when I get my shot. Should I also take one the following day, or the day after that?
Thank you my friends xxx
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Cabmom: I hope you can get the appointment moved up. It's miserable having to wait so long and have too much time to dwell on everything. Maybe with the Lupron shots you won't have to make that other decision.
Sara: Good luck tomorrow. I know it can be scary going in for the first treatment, but I know when I actually got there I was strangely calm. There was something comforting about the nurses calmly going around the treatment room as though it's just another day's work ... and it is. One of the nurses will sit with you and go over all the SEs. Don't be scared by this -- they will list every common SE for the drugs you're getting, but most people will not get all the side effects. But it's part of their job to inform you of the possibilities.
Do have a good filling breakfast tomorrow as you may miss your lunch if you go in the morning. You will probably see the oncologist first and this initial treatment will take a bit longer than the rest as they have to go over everything with you.
I took Costco's version of Zertec instead of Claritin. I really don't know if it helped. I used to take it the day of the Neulasta shot and the next day (or maybe two).
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