CMF Question
Comments
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Timbuktu- earlier today I emailed my MO and asked him why with the extent of my cancer I got such a low onco score. Below is his response.
With regard to your question, the score represents the fact that it is a slow growing tumor that is likely hormone dependent and less likely to benefit from chemotherapy. The staging says otherwise, that it was advanced in terms of involving the lymph nodes and has a risk of having spread prior to our finding it (though just not with a lump big enough for us to find it). This puts more emphasis on the hormone therapy and unfortunately suggests that a recurrence might still occur and that it could be several years down the road.
Which brings us back to your last sentiment – we have to live our lives and enjoy whatever time we get…with or without cancer.
Thinking of you-
-Jon
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Thanks so much for sharing that Diana. Somehow I still feel a bit confused.
it's slow growing and unlikely to spread according to the oncoscore yet it did spread.
I wonder if this is why Sloan does not put 100% faith in the oncoscore or the AI's.
The oncos I saw here were absolute in their confidence in both the scores and the AI's.
Sloan was not. It seems it's not an open and shut case.
My onco at U of C told me that the oncoscore was more important than size of tumor, or anything else.
We have a friend who is a pathologist who trained at Sloan and said that the findings are not definitive.
how can we be expected to make any kind of intelligent decision when even the drs don't know what's going on?
I just hope and pray that a real cure comes along in time. They are supposed to be close to a vaccine, at least that's what I heard.
Let's wring the most out of every day!
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Ladies, at least you get an oncoscore....I spoke to my onc about this after reading all about it here and he said 'have you been reading USA sights?' I said yes they are very informative. He said 'USA are very big on oncotype scoring, it is not big here, we don't do it.' I had to ASK for my staging from my onc as it was not on any of my reports. He said that they only go off grading and lymph node status and size of tumor!! Due to my BC being caused by radiation I had to my chest 17 years ago, regardlesss of anything I would of had to have chemo and MX anyway...but still I would have loved an oncotype score. Apparently its like a $4000 cost I think thats why they don't do it here in Australia because not everyone has Private Health insurance.
Timbuktu, I heard it not long ago about a vaccination...what the hell are they waiting for !!! Lets just hope it comes out Sooner rather than later!!
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Thanks so much to dear Rita, softness1, and Dianarose!! It helps so much for my hesitation. Indeed, I'm totally agree that the decision making is worse than treatment. Currently, I'm not working but my lovely husband wants me to suffer from these SE to the least. Therefore, when the onco provide this option, he is kind of lean to this treatment even though this is still my call. I'm so thankful all the inputs and feels much better and positive now!
I have my port done today. Everything looks fine so far except the shoulder pain is killing me
....
Fight on!!!0 -
I ask my onco about my oncotype, she said she only do that for people in the early stage ,like stage 1, in order to determine if the chemo treatment is needed. Since my tumor size is big, so she didn't run the test for me. She also mention that cost about $6G to run the test. Well, it got me curious is because of my tumor size or $ concern... Is the oncotype score an important factor in the BC diagnoses?
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Cherish,
I think that the onco score gives oncologists a better idea if chemo is really needed once you have been diagnosed. It helps decide what treatment plan to use with early stage patients and helps with those whose scores fall within that "gray error" where nobody is really sure if chemo is or is not needed. Because of the size of your tumor, your oncologist KNEW that you should do some type of chemo....thus he or she probably didn't see the need to perform the test because the test is very expensive.
Isn't this all just mind-boggling? It's really hard to know what to do and it's such an important decision to make. If you ever feel uncomfortable with your doctors, do not hesitate to get another opinion. Many people do!
Hugs to you!
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I also had the Onco type test done and had an intermediate score of 19. I had a tumor with clean margins but did spread to lymph nodes so agreed to cmf treatment as it's not so intense as the act. I'm 3 treatments in out of 8. I can't wait til this chemo part is over. It's doable, but just so not fun. The side effects have been minimal after the first week, my doctor has been proactive at trying to minimize them. Although this week I seemed to have an allergic reaction to "emend" we switched to that from a steriod which I thought was making my moods swing. I'd rather have the mood swings. I'm talking to him this week about my meds again. But so far I get chemo on wed. By Friday i'm exhausted and saturday. Then back to my self by sunday and good for two weeks. I don't get the nulesta shot I could not tolerate it, so I get a series of nupogeon shots. They are also not fun, but doable. I have a great team of doctors and nurses, so one day at a time...this will pass!
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Robin, I was the same as you. If I was going to have a bad day after a treatment, it was always the third or fourth day. Then I was on "chemo holiday" until the next one rolled around. Hang in there. Just keep marking those treatments off your calendar.
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Ritajean..you are always such a postive source for me. Thanks for checking in on these boards you really always make my day. After reading a bunch of postings on these boards, it makes me realize that I am actually lucky that I was able to have CMF chemo as opposed to anything else and that I caught my cancer so early. It's not the best situation, but as i read these boards, if nothing else...it changes my attitude from angry to grateful. :-)
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Hey, Robin. If I got through CMF chemo, you can, too. I am such a wimp about things like this. I learned to suck on ice chips during an infusion to ward off the mouth sores that can be a side effect of CMF and to suck on Brach's lemon drops to get rid of that metallic taste and to stop any nausea. Like you said, we just have to take it one day at a time.....and then finally, it is over and there is indeed life after chemo. Do you have to do rads after chemo or will you be done then?
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I am a huge wimp too. You should see me go for my shots. I make such a scene. LOL They laugh at me now, but I think I used to make them nervous. I have the lemon drops. I have not tried the ice chips but I now bring a huge glass of ice water and drink it the whole time. Honestly ...it's going by fast...but also feels like forever. Yes I have to do rads after this. I have barely even given that a thought. I know it's six weeks..five days a week and of course Tamoxifen. But they keep telling me it's a walk in the park after this. As much as i've been through in the last few months, the surgeries (lumpectomy and port) all the doctor appts, the procedures...it's still so very surreal..is this happening to me? I think it's going to hit me more when the chemo is done.
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Ok if you guys don't mind I have a question about treatment. How many rounds of cmf did you all have to do. I know people's treatment vary with pills and Ivs. I'm on a straight cmf iv. Once every 2 weeks for 16 weeks. 8 total. I questioned my doctor on why 8 instead of 6. He gave me the run down why. Basically said its standard here in ct. But if I had a good reason we could shorten it to 6. There is no proof 8 is better than 6. But there is also no proof that it's not. I'm tolerating the chemo ok except for an allergic reaction last week. I'm seriously considering shortening it because of the allergic reaction. I'm going to wait and see how I feel. Next wednesday will Be my 4th treatment so i will be halfway done. I'm also a chicken and am afraid not to do the whole 8. What if I had a recurrence. I'd just kick myself. Even though there is no proof that the last two rounds would have prevented it. I'm curious on what types of regimes you are all doing? Thanks in advance :-)
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One more question...did anyone experience any weight gain? I'm curious.
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Hi Robyn
I had 3xtaxotere and 3xCMF no radsas Ive previously been radiated on in the chest area.
I think every onc and country and state is different.
I didnt have weight gain with CMF as much as the other chemo i had purely because steriods were a lot less for CMF that I had.0 -
Robin,
I had 8 tx every 3 weeks on CMF. I almost stopped after tx number 7; I was just sick of it and sick of feeling sick. But my onc was keen for me to have the 8th tx--she said that the studies were all based on 8 tx. However, in the UK and many other places, the standard treatment is 6 tx. And you are having yours dose dense....so why don't you read a little and see what you feel comfortable with.
I read that weight gain of from 10 to 20 kilos (20 to 40 pounds) is common with CMF. And, lucky me, gained about 30 pounds. I lost the first 10 pounds easily and I am still struggling to lose the rest--and it is almost four years since I finished chemo. (I used to be quite expert on most of the side effects since I had them all; but over time you tend not to remember them and you do feel better).
I hope everyone has a good weekend.
Hugs,
Mandy
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Thanks you guys for answering so fast. I probably will go ahead and have all 8. I've already started ...i don't want to regret anything.
I also feel like the 5-6 lbs i've put on so far is all in my waist. I'm only 5' 2" and i feel every lbs! I'm trying not to stress about it. But i'm trying to feel in control of something!
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Mandy, I too decided after the 7th treatment I would stop. It was at that point that I felt the poisons were winning and my body was losing. Everyone pushed me to do the 8th treatment and I did. One onco told me 6 treatments were enough so I asked the Sloan onco and she said that there were no studies of 6 vs 8 treatments! She said that people who get CMF are not likely to have recurrences anyway so it would take huge numbers to get any kind of statistically significant info. So they are making recommendations based on nothing. Or, maybe not nothing but cost. I would not follow anything that the Brits do. The NHS rations care. There was a recent article about how the US has the best survival statistics in the world because treatment is swift and cost is not a factor. Not yet... Each chemo treatment was over $3000. I paid nothing, my insurance was great.
I guess we have to remember the real enemy is the cancer. It will all have been worth it if the cancer stays away!
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@Robin3, I had cytoxan pills every day, M & F infusions every week, for 6 months. I had a reaction to one or more of the meds during the last month which put me in the hospital for a week and on a ventilator over one night. I felt so rotten that I skipped the very last infusion. I was not given steroids. I think I gained perhaps 5 pounds, but it was five pounds I needed to gain back. I had a nasty stomach bug right before my dx and ate hardly anything for three days, then worry and indecision surrounding my original dx and decisions about treatment. By that time I was down to 122 lbs which at 5'7 is a little on the skinny side.
@Timbuktu, I wonder what the onco from Sloan-Kettering meant about CMF. I would have thought anyone who does any type of chemo is less likely to recur than a patient with the same dx who doesn't get chemo, otherwise why do chemo at all? The statistics I saw before I started is that CMF is slightly less effective than other chemos, two percentage points lower in overall survival at ten years after than TC.
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curveball, I was referring to the difference in survival between 6 and 8 treatments. The Sloan dr said that there have been no studies of the different outcomes between 6 and 8. They have only studied 8 treatments. So their recommendations can only be based on the findings for 8 treatments. In spite of the fact that there is no scientific proof that 6 treatments work as well as 8, some drs are suggesting 6 is enough!
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Curveball, to clarify. What Sloan dr. meant was that CMF is prescribed for people who have a good prognosis, The chance of recurrence has to be low if you are getting CMF. So, say out of one hundred people only 5 who have CMF will have a recurrence. In order to study the difference between 6 treatments and 8 treatments you'd have to study thousands and thousands of people. Such a study has not been done.
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I had 6 CMF treatments by IV given 3 weeks apart. That was the standard dosage for CMF six years ago. They didn't even offer 8 then. I think there is much disagreement about whether more is better because there haven't been enough tests and studies to compare. Oncologists have differing opinions, too so I guess you just need decide which is better for you and not look back after you've made your decision.
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I'm getting 8 treatments by IV once every 3 weeks. 6 weeks sounds like a dream. I think I'll bring that up to my onco next time I go in. @Robin I'm losing weight, which honestly, I needed to lose about 10 pounds and I've actually lost that and still losing
It's noticeable to everyone. I'm okay now but if I continue to lose it might not look right. For some reason I can't tolerate eating too much. The first week after treatment the thought of food repulses me & I'm a little afraid of feeling queasy. Then after that I think I just get used to not really eating. When I do have a meal I just nibble. My last treatment was the worse and I was so nauseous, threw up. My aunt wanted to take me out to dinner and the sound of it made me sick. I just can't go through that feeling.
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Robin: What Ritajean says is right--you need to decide which is better for you and not to look back after you make your decision...they've been doing 6tx and 8 tx for years. There also is a pill form of cmf and some oncs like that. So just go forward and before you know it, whichever you do, 6 or 8, you'll be done! All the best!
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softness....Welcome to the CMF thread. If you've been here before, I missed you and I readily apologize for not officilly welcoming you earlier. Come back often.
We probably didn't make ourselves clear. It's not 6 weeks of treatment. It is 6 treatments, given 3 weeks apart, which still adds up to 18 weeks...a little over 4 months.
I remember that nauseous feeling. Brach's lemon drops helped me conquer the nausea. Other found different things to help them. Maybe somebody will pop on and tell you what helped them most. We're all different but I think we all found something that helped get us through.
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I finally found the article that I read before deciding on CMF. It helped me and I hope it will help others. If you are just starting, sorry you are here with the rest of us, but we will be here for you, hugs... Diana
http://annonc.oxfordjournals.org/content/early/2011/06/29/annonc.mdr309.full
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Thanks Ritajean. And yes I've posted here a few times since my first treatment 2/14. Not often though. I am on the 6 months plan... Lol. But I would like the 6 rounds (4 months) plan. The Brach's lemon drops will be bought tomorrow. My aunt brought a burger over tonight. I ate half of it and is nauseous now. Bleh!!
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Dianarose, thanks for posting the link to that interesting article.
Softness: Sorry you are having so many unpleasant side-effects. I also did the 8 tx every 3 weeks. You mentioned that you have severe nausea after your treatment. Tell you onc because there are anti-nausea medications that he or she can prescribe that will really help. The first one that was prescribed for me did not work at all and after a few tweaks, I had a combination of kytril and emend during/after each tx that really did away with the nausea. In addition to the medication for the immediate nausea that followed each tx, I had a prescription medication for heart burn which was adding to my nausea. A bit into my chemo, I became unable to drink water or suck on plain ice due to "metal mouth" where it tasted awful. Like Ritajean, I found that lemon helped and I did have lemon ices and limonata, a natural Italian lemon soda. I also found that ginger helped--I had ginger candies which I sucked on and drank "ginger beer" which is not beer at all but a strongly ginger flavored ginger ale. It is readily available at Whole Foods. My food cravings ran towards creamy things and I made home made macaroni and cheese for the first time and found it helped with the queasiness. My cooking became incredibly bland but for me that helped. Now everyone is different but try to play with different foods and try to figure out what helps. If the smell of cooking is adding to the nausea, then perhaps you can use some instant meals. But above all, you should talk to your onc and see what they suggest...I am certain that they want you to be able to eat and not to lose too much weight. Sending you a big hug.
Hope everyone has a good day and that the gals in treatment are doing well.
Hugs to all.
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Great advice, Mandy!
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Yes softness. For my nausea They started me on a sancuso patch. I put it on the day before my chemo treatment and leave it on for 5 days. And some zofran and compazine. I'm not doing emend but decadron I think it's called. I have lemon drops at home in every room and at work and in the car. And we talked about the crystal light. The energy one really helps when I don't feel great. All of this has really helped control the nausea that I experienced the first week. We can get through this! As always great to hear from ritajean and Mandy. Thanks you guys for checking in and helping us currently going through treatment. Your experience is so helpful.
Robin0 -
You guys are the best!!! thanks for the advice...Robin myOnco did add the compazine, along with the Zofran. I did pick up the lemon drops yesterday too & I am a crystal light fan.......Omg @Mandy!!!Kraft Mac & cheese is all I eat within 5 days after chemo. I crave it like I'm pregnant. Even if I'm nauseous. I eat Mac & cheese, feel awful, curse myself out for eating it, get hungry then eat some more... Lol. I get the metal mouth about day 4 & that's when the appetite goes out the window. The thought of eating becomes gross.
I think it's more of a mental thing then physical. And my sense of smell is enhanced. It's like my first trimester of both my pregnancies (definitely not pregnant ) but I can't eat & I smell everything. At work the other day I could smell the ink of my pen made me queasy. Although this morning I woke up dying for a hot fudge sundae with nuts and whip cream... Mmmmm. Lol0
