HER2+, CHEMO RECOMMENDED NOT THERE YET
37, had lumpectomy on 12/23/10, successful surgery, lymph nodes clear (4) but that her2+ is the driving force of my onc recommending chemo. My first visit with her I didnt want to hear chemo conversation so she scheduled me to come back in 2 weeks to get results of the fish test that confirmed the her2+, at this visit my mom came with and she was not feeling chemo but I did take some printouts of the chemo med along with herceptan that I would be taking. I'm just not there yet. HELP
Comments
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Hi nupinkie18: I was diagnosed 11/29/10 and it sounds like we have some things in common. I'm only a few years older than you (41). I had my lumpectomy on Jan 7th and the margins were clear and I had 4 lymph nodes removed which were also all clear. I'm Her2+ as well and it's taken me a long time to fully accept that the standard recommended treatment is chemo and Herceptin. I've spent the last two months reading everything I could get my hands on to understand, why chemo? The answer is that Her2+ tumors are very aggressive and recur at higher rates than other types of breast cancer so it's recommended that you treat them equally aggressively to reduce the chance of recurrence. When I sat down with my oncologist for the first time I asked her, "but if my lymph nodes are clear and the tumor is gone, how could this recur?" She said that it is not really known exactly how it happens but that the best guess is that sometimes cells break off and travel through the bloodstream and not just the lymph system. With a Her2+ tumor it's not something to mess around with. I've cried, I've been angry and I'm still dealing with it but I've come to accept that it's important to be as aggressive as possible with something so dangerous. So, I'm beginning TCH chemo with Herceptin on Tuesday. I'm only sharing my personal thoughts and decison in hopes that it is helpful. This is not easy and you have to make your decision based upon your own situation and with the help of your oncologist. Many people seek a second opinion as well just so they feel more confident in their decision. I'm sure others will add in this discussion as well. Thinking of you and wishing you all the best!
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I just finished 6 tx of Taxotere, Carboplatin and Herceptin 4 weeks ago. I just did 1 herceptin alone last week. I'm 49+ 6 days. First 3 rounds were not bad. I started to get side effects that were a bit rare but still not as horrible as I thought. I was never rushed to the emergency room and my white counts were good troughout (Had Nuelasta shot that kept the white counts in check)
How many rounds do they want you to do? What are they recommending. There are specific threads I can direct you to if I knew what they were recommending.
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Hello nupinkie18,
I am about as chemophobic as they get, so take that into account with my opinion -- and one single opinion is all that it is... but the younger one is, and the more ER-/PR-, the more of a chance for better outcome with chemotherapy. What is "young"? Certainly anyone under 40, and most likely anything under 45 as well. Ask your doctors to FULLY explain ALL your choices, including your odds if you choose to have ovarian ablation plus drugs instead of chemotherapy. Keep in mind that trastuzumab only "works" for around half of those who are HER2 positive and doesn't work for the remaining half -- and it also can stop working for those it originally did work for. For better or worse, unless you can find an onc (and an insurance) that would allow having trastuzumab without chemo, likely you will only be able to get the trastuzumab if you do the chemo. I think oncs are being rather cavalier about that, since they aren't the ones who have to do the "time" with it all. Especially considering that those who are HER2 positive and don't want to do chemo have only a 50% chance that the trastuzumab will help. You can see by my signature that I have my own way of doing things. But knowing what I know at 10 years out, I have to say that the younger one is, the more likely one is to be ER- and PR- , and the more likely that chemo probably would help.
AlaskaAngel
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To put it bluntly, you will be a fool not to do chemo and herceptin unless you have a death wish.
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Hi there! I'm sorry u have to face all this! Im 30 just finished chemo and am continuing with H for the year, u didn't mention the size of ur tumor or what chemo ur doc is recommending. If it was small you may want to ask about weekly taxol and hereptin. My tumor was 2mm so it was very small I was on the fence with chemo but went with weekly taxol and h b/c it is less toxic and side effects are minimal, I got through and worked everyday accept infusion day and I have a baby and it was all truly manageable for the most part and with help from my husband and family members. Also I kept ALL my hair I used penguin cold caps and lost hair eveywhere else but did not loos the hair on my head, brows lashes legs etc are gone but i have all the hair on my head and keeping my hair seemed to really help me get through. Chemo is a tough decision but with her2 u don't want to risk anything you came this far fight it as much as u can and throw everything at it the first time around! Hang in there and make the decision that makes u most confident regarding ur health only u can decide!
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Hi nupinkie 18. I'm sure you are completely overwhelmed with all of the decisions you have had to make and continue to make. Unfortunately that is the world we live in when diagnosed with cancer, fortunately you've found a very supportive group to help you get through the up and down emotions.
I too really feel that for us who are Her2+, chemo and Herceptin are so important. I am also young--27--and I know that I wanted to do everything possible to live a long life, and hopefully chemo & Herceptin will become just a moment in that life. Even if a recurrence does happen for me I know I'm the type of person who needs to know that I did everything I could to prevent it.
Chemo is not fun, but it is not as horrible as I thought it would be and is manageable. I did 3 FEC then 3 Taxotere. I still am getting Herceptin. Through chemo you still laugh and smile and visit with others. I did have trouble with low white blood counts, but even I still went out when my counts stabalized a bit. Wet wipes and anit-bacterial spray became my best friend.
Hopefully all of these posts help you in your decision. Let us know if there is any other information/personal chemo-herceptin stories you need to help make the decision.
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I have to agree with Sassa and it is not true that Herceptin only helps 50 percent of Her2 patients. The statistic is actually that Herceptin supports a 50 percent increase in survival rates. For example if a Her2 patient is node negative stage 1 Her2 and their DFS was 65 percent for 5 years without treatment, it has been shown that with Chemo and Herceptin the DFS for 5 years is more like 10 percent.
You can look at these same statistics with the HERA trial. Both of my Onc's are actually quoting after 5 years, stage 1 is more like 92-95 percent DFS. So I will take Herceptin any day to change my statistic from 65 percent to 95 percent. Dr. Slamon updated his Herceptin data at the San Antonio Conference this past year and the DFS after Herceptin remains consistent with past reports that has changed the statistics in Her2 cancers and there are no surprises 8 years out.
There is a great study out of MD ANDERSON on this thread a few pages back that illustrates even tumors less than 1cm should be given Herceptin as this group recurred at a rate of over 20 percent with no Chemo/Herceptin.
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DFS=?
What is DFS?
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mm5- the studies that you are talking about are EXACTLY why i choose to do the H and Chemo! Nupinkie- try to find these they really will help you to see clearly the benifit you will get from the chemo and more importantly the Herceptin!
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Disease Free Survival = DFS
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nupinkie, I was your age (38) when diagnosed. My bc was 7mm. Onc recommended chemo (TCH) without hesitation. Even with small tumors (as others pointed out above) even less than 1 cm, they have found with retrospective studies that the recurrence rates are just too high for HER2+ cancers. I think the study I read stated the recurrence risk was 23%!!! That is just too high for me to gamble with. Noone likes being told they have to do chemo, but. . . we do it because our only other choice is to not do it and have a very real chance of recurrence. There are also some retrospective studies out there (small studies of only about 150 women), but promising none the less) that have found that the group with T1a & T1b (1mm-9mm cancers) node-negative tumors, none of the women treated with herceptin had recurred at (I think) the 5 yr mark. Since chemo and herceptin are given together (and studies have shown that chemo helps herceptin tremendously) there really wasn't any decision to have to make. Yes, you have to get used to the idea, but once you accept that this is what it is going to be, you can do it. It wasn't fantastic, but definately not as bad as I had anticipated. And I had a 6-month old baby and 2 other kids (8 and 5) to take care of at the same time!
You did not mention the size of your bc, only that your nodes were negative. But still, unless you only had an extremely small tumor, like 1-2mm, I still think you should really, really, really open your mind and accept that chemo with herceptin is a must. We all know what you are going through--we've been there. I hate this disease.
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I was 42 when I was diagnosed. Within 4 weeks, mine went from Stage 2b to Stage IV with mets to my liver, bones and chest nodes. HER2+ is aggressive and moves fast. I also would encourage you to consider chemo with Herceptin. The one thing I can say is that as quickly as it moves, it also responds quickly to treatment. After 3 cycles of TCH, I had no evidence of disease. I have been taking Herceptin only now for 2 1/2 years and remain disease free. Those 4 months when I had chemo where difficult. However, it was a small chuck of time out of my life and if it has bought me 3, 5, 10 or 20 more years, then it was very well worth it. You are a young woman, and you need to do what you have to do to ensure you get to live a long and happy life
I hope you will research it and consider it with an open mind. You want to take care of this now and not let it reoccur in an organ or your bones because once it does, the treatment never ends. . I will be on Herceptin for life.
((((hugs))))
Jennifer
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I was also 37 when I was diagnosed in 2005. I did chemo with a year of herceptin. I was NED for 5 years. It came back this July in my liver. I believe that if I had chosen not to do chemo, I wouldn't be here today. Her2 cancers are extremely aggressive. Do the chemo.
Laurie
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nupinkie, I would like to make a suggestion if that is ok--it could be helpful for you to put chemo out of your mind for right now and learn all you can about HER2. Let that sink in and then take another look at chemo. When I was first diagonsed i told my doctors that i would rather be dead than take chemo. Thankfully i had a wonderful oncologist who didn't scare the crap out of me. Chemo and Herceptin were very doable for me. what a big surprise that was. I also didn't want to have any regrets if I had a recurrence and would then beat myself up for not having done chemo. Please know that we are all here for you.
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Dragonfly hope your chemo went smoothly. Like you I felt like I could take anything they wanted to throw at this HER2 tumor. libraylil
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I too did the TCH cocktail and due to liver mets and a possible bone met, I will be a lifer on the Herceptin. After just one treatment they couldn't even find my tumor and it had measured 5cm. I am so grateful for the Herceptin...Tax and Carbo certainly were not fun, but it is do-able. It is so worth it to get them. I also got a second opinion and was told that I certainly was on the right path. this cancer is such a fast spreader, do anything you can to keep that from happening. I pretty much put myself in the hands of the Dr.'s , they know way more than I do about it all!
Jenin, your story sounds like a mirror image of mine! I have one liver met and they are thinking about a resection, just want to wait about 3 months to see how much more the herceptin will shrink it. I started with 6 rounds of chemo, get my lumpectomy next week, and was SUPPOSED to start radiation the end of March, but after meeting with the rad Dr. yesterday, they are thinking I may need a bone biop on my possible met they found hiding behind a cancerous node on my sternum. the bone met is the only one that has not gone down in size, so they are hoping it is benign. They were going to just radiate it, but the angle they would have to go in at would incorporate some of my heart. But the bone biop wouldn't be so easy either. Meeting with my BC surgeon on Friday and will discuss it with her, then with another surgeon that would actually do the biop to see what they think. I am considered a very gray area....every Dr. I go to says there is no right answer for which way I go...I'm sort of a medical mystery. Usually someone's liver is either covered with mets or have none at all. the fact that I only have one is weird and not seen often. Needing to just get thru the surgery next week and then will focus on the rest. Also having a node removed from my armpit, but from what they can tell, it's only 2 positive nodes.
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6 cycles of chemo (taxotere, carboplatin, neulasta) along with herceptin (year)...I've decided to go ahead with the treatments...I think it just took me a minute to wrap my mind around it and in doing that I have met and spoke with numerous people that have gone through or know someone that has and they have offered good advice and words of encouragement just like you ladies have done. I appreaciate the bluntness and the detail advice...I'm looking to start treatments sometime next month. I was able to get a second opinion and he thought it would be a great thing to do. You just don't know how many ppl are going through the same thing until it visits your address. I think the good thing about this is through it all I believed that I will be fine and I thank God for giving me that peace of mind but it just took me a minute to get it. I will definetely keep you all posted on whats going on.
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nupinkie: Check out the thread here for taxotere, caboplatin, herceptin (TCH). That was my "hangout" when I did 6 x taxol/carbo/herceptin (with neulasta to keep up my white blood cells to guard against infection.) I was 54 then - took off 4 days during chemo week, but other than that I worked, traveled, exercised, etc.
I know you've read the advice you've gotten here very carefully. Please consider the experience of all of these intelligent, well-researched, and wise women as you make your decision.
Best wishes to you!
Sue
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Thank you for your input. I am so afraid of the chemo treatment. Can you give me details as to what exactly the side effects your felt were? My imagination is out of control and I'm having such a hard time finding courage.... help me please
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I am 5 months into 7 months of chemo treatment. I swear to you that I haven't even so much as thrown up once...it has been a breeze. A total breeze. And I have had 4 different chemos now (always the plan - started with Adriamycin and Cytoxan, now Taxol and Herceptin). I have worked full time the whole time. I certainly don't mean to crow over it because some people really do still get very sick, and you can react badly to any med.
There are at least two reasons for it - one, I'm lucky as hell and hope my luck holds out for a few more weeks. Two, because it has had zero to moderate effects on me, I view it as a medical treatment. Not the dreaded "chemo".
I thought, when I was at your point, that I would be lying on the bathroom floor every night too sick to get myself off of it. I did not expect to be going to parties and sledding and gardening and shopping, which has been the reality.
They have *wonderful* side effect medications.
We're taking the time to try to talk you in to chemo in our own ways because for me - I believe your cancer is likely to come back if you do not do chemo, and I also believe if you do chemo, in a few year's time this will be a dim memory for you. I believe these things because of statistics that I've read because I'm Her2 +++.
I'm so sorry you're in such a difficult place. For me, I didn't have to wrestle with decisions...for IBC they throw the book, the chair and the table at you in turns of treatment. It must be so hard for you but I sure hope you'll go with chemo and herceptin.
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PaminWVhit the nail on the head...everyone is so different. I was told so many different things...how I was the first treatment would be the way I was for every treatment..it would get better...it would get worse...I just never knew from one to the other, yet some women do have the same SE's the entire time. Sometimes I had insomnia, sometimes I slept for 24 hrs straight. The only advice I can give is DON'T QUIT! I begged my onc to let me skip the 6th treatment, and I am so glad she talked me out of it...I would have regrets! Looking back (I'm 5 weeks out) I feel like it's sort of like having a baby...after a while you forget about the pain, but you remember that it sucked. It is so doable, when you consider what it can do for you! I always dreaded "chemoday", but my husband told me I should look forward to it, it was kicking my cancer's a$$. He was so right...it's just all in the way you look at it. You will be fine Archimoon....you have a great support system here and we are all pulling for you! Best wishes! April
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My first time on any site. 64yrs old. (new 40,lol) Had lumpectomy 1-19-11. 1.6cm . No lymphnode removal. Surgeon said I would probably do radiation. Knowing that I was HER2 possitive she went ahead with oncotype testing . I was sent to radiologist and onc. Waiting for call from surgeon about port when I got a call from her office saying my oncotype report came back it was 8 which is very low. So the caller said I wouldn't have to have chemo. I questioned the HER2 which the onc said was the factor for chemo. Why do chemo if oncotype is so low that chemo wouldn't be benificial? Onc said they don't do Herceptin without chemo. I'm going to Univ of Phila for second opinion. Really confused
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Sorry....University of Pennsylvania
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cynde~ I see an onc here where I live in Lancaster, but I got a second opinion from Dr. Fox at U of Pa...he is excellent, along with many other doctors there. I hope you get everything worked out! In fact, we still go down to see him and he is working together with my onc here!
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thegood5- Thanks so much. Did you see Dr Fox at the Rena Rowan Breast Center in Phila.? I'm under the impression that its part of the U of Pa. Good luck to you. Seems like you have the best doctors on your team.
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Yes! Is that who you are going to be seeing? Good luck to you also. Waiting in limbo is the worst.
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thegoods5 I'll be seeing Dr. Angela DeMichele at the Rena Rowan Center this coming Thursday. Had to check in with physical therapy in case of Lynmphedema.... Head woman on team told me she is from U of Pa. and that Dr. Fox is great. She absolutely loves him. You hit the jackpot!!!!!
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The time has come, I start chemo Thursday got my port this past thursday, no problems so far (with the port that is) chest feels a lil heavy and I think thats from the coughing spell Ive had. The side I got the port on I did have shoulder pain later I was told that some ppl experience shoulder pain and that its probably gas from the anethesia. Ive decided to take sum time off leading up to chemo to have sum me time and let my mind, body, and soul be relaxed. Jen was telling me about penguin cold caps, has anyone used?
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How are things going archiemoon? Hope all is well
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Hey I am seeing Dr. Carol Tweed from Rena Rowan breast center. She is very young (under 40 I'd say). I like her a lot. I think all the doctors there are great; you can't really I don't really think you can go wrong. I LOVE my BS, Dr. Tchou. I haven't had surgery yet, but have all the confidence in the world in her.
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