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HER2+ and no chemo for early stage?

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  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited May 2014
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    Yes. I liked all 3 of the oncs personally whom I saw at the  major cancer center where supervision for my treatment was provided, and all 3 are very reputable. I tested HER2 +++ by HerCeptest, done at that major center. However, I asked one of the oncs if I could have it confirmed by CISH, since had done only chemo and not trastuzumab and yet had not recurred. The onc refused, without explanation. Perhaps the onc felt that the confirmation or otherwise would be of no use for a doctor.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited May 2014
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    kayb, it probably doesn't seem all that relevant to an onc as compared to a patient. At the time, I was trying to decide whether or not to do "late" trastuzumab, and a confirmation or denial using CISH of the original HerCeptest that at the time was considered questionable by experts even when done in some cancer centers was something that could have provided me with more information.

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    Hi Alaska Angel, Kayb,  I've read before that on the herceptest, if your HEr2+ is high (3+) there is no need of a second test to confirm it. However, if it's 2+, there is need, as herceptin has been deemed too dangerous for HEr2- patients, or rather, it does not necessitate the risk on the heart. Therefore, for those where the HEr2+ indication isn't very strong, a retest is needed to double check it. Given my earlier biopsy of 3+, my surgeon actually says it's no necessary to do the FISH/SISH test, this is also because biopsy of the tumour also included the K167 which would give an overall picture to support necessary chemo or otherwise. And she knew I was on a budget and paying out of my own pocket. Later on, through an oncologist, i was given a SISH test sponsored by the drug company, which confirms it again. 

    AlaskaAngel, I think HEr 2+ was way too new then, and even now i don't think there's supporting data trials on "late" herceptin and it's efficacy. Whichever the case, you're indeed blessed! You've passed not only the 5 year, but 10 year mark!!! :) yay!! :)

  • specialk
    specialk Member Posts: 9,227
    edited May 2014
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    hiking - I had Mammaprint done because my oncological breast surgeon is involved in an ongoing study with Agendia, and my score did come back as high recurrence risk.  I would advise you to determine whether your insurance company will pay for this test - mine did not because it classified Mammaprint as "experimental" even though it is FDA approved.  The test is about $5,000 - I did not sign anything saying I would be responsible for the bill - my insurance company did pay for the biopsy sample transportation costs to Agendia, so that is all they got.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited May 2014
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    *grin*

    Yes, in comparison. There was no mammaprint developed, and no Ki67 yet, and it had just been widely announced that the results of HER2 testing nationally were shaky. At that time, they simply were so early on in offering testing for HER2 with pateints that the testing was recognized as not being rigorously done or standardized, which meant that there were more people being identified as being HER2 positive who actually were not, and vice versa. This was in part because those who were doing the tests in some places weren't doing them often enough to read them proficiently. So initially the recommendation was that testing done in locations where it was done very often was best. Mine had been done at a cancer center, so would have been considered more likely to be reliable -- but even some of the places doing the test often, varied in reliability at that time according to the experts. So confirmation testing at that time with CISH was developed and being made more available in addition for clinicians to use with patients as a secondary test if there was any question.

    Without the Ki67 and without having had trastuzumab (and the really awful track record for HER2 positive patients who completed only chemo) and me without recurrence, and the $100,000 cost per patient for doing trastuzumab (whether or not paid for by insurance), I believe my request made perfect sense at the time. Oncs have their own perspective about it of course, whatever that might be, but it didn't fit me at all.

     

  • hikingandhorses
    hikingandhorses Member Posts: 40
    edited May 2014
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    Thanks for all of the info and notes - I feel like sometimes I'm buried in a room of paper up to my eyeballs and every piece of paper I pick up I learn something new about my disease and all of the people that have gone through similar issues.  The experiences and learned info from others has been amazing and easier to digest than reading an abstract!!!

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    .hikingandhorses, i feel the same.. and i've been reading and reading and reading for the past 3 weeks and still feel i'm not getting enough infor!!! haha, if only i can read and digest faster... 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2014
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    hiking and yens....three tips....register at the nccn's website and read the professionals' version of the breast cancer treatment guidelines.  Be sure to read the last 50-75 pages! Second tip, stick to reading published abstracts on pubmed's website and then try to access those studies.  Be sure to be careful where those studies are coming from.   And the third tip is the most important.  Conclusions drawn from these studies are more often than not, not so conclusive. Often studies are ongoing, so only preliminary data is known and one has to question, what the data actually means to ME.  So here is the third tip in a nutshell....use your critical thinking skills and look for TRENDS.  That's what I do.  I need to continually look for where the research is going and figure out if that impacts my treatment plan.

    Happy reading!

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited May 2014
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    The discussions and questions are open in these threads. This is an especially good group with a variety of bits of knowledge that is so much easier to learn from.

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    kayb,thanks for mentioning how invitro and invivo experiments don't translate to cures!!! I went to see yet another oncologist yesterday.. happens to be my brother's friend's brother! (all doctors), and because he is in a way a "known person" I trusted his opinions, and he too was hesitant and even discount stage 2 trials as there is no fair comparison/control group. Also said the same regarding the invitro and invivo experiments when I mentioned all the wonderful "natural cures" out there.. and because he's an associate professor and was researching for many years in the UK, I feel I should go with his suggestion.. it really is tough to have to do chemo.. the word is still so terrifying for me that I'm having crying spells.. something which is so not me!!! :(

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    yensmiles - will you be able to have Herceptin? Which chemo are they recommending?

    I know it's hard to face, but it will be over before you know it. I had 6 chemo treatments, 1 every 3 weeks. The Herceptin by itself after chemo finishes is a walk in the park. You'll lose your hair - it will grow back. You won't feel well (make sure you get good nausea meds) but you will feel better. I'm now nearly 5 years past treatment and it's all a distant memory - yes I remember the bad times, but celebrate being here now.

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    Hi suzieq, i will be able to get everything.. out of my own pocket! :( The semi-government hospital only subsidises certain drugs like FEC, but not the TC that goes with Herceptin. I also can't get a referral to a government hospital (full-subsidy), when I asked why, the oncologist said it would affect his reputation, and if I've 5 nodes positive, he would, but not in my node-negtive situation. I do understand as there are many people worse of financially than me at higher stages and only a very limited quota for a year for the entire population. I'm thankful, at least i've a house to sell!

    Thus far, the popular chemo choice for me is TCH or FEC + TH followed by HErceptin for rest of year. I've decided I'll go through with everything, but now am having crying spells.. think it's hard for me to come to terms with it, especially since the side effects are really unpredictable and varies person to person.. and a friend did die earlier this year from infection during chemo...i know it'll pass, and perhaps that's just how i'd cope for the next few days to a week.. i know i should be thinking, "what if i'm the lucky one without much side effects?" yet i'm thinking, "What if i'm the unlucky one having to be wheeled to emergency or have some permanent damage for life?" pardon my whining, i think i'll be like this for the rest of the week till chemo day.. :(

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited May 2014
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    yensmiles,

    In the US, blood counts are done whenever you've had chemo and start to get close to your nadir (lowest blood cell count), and there are cutoff counts for watching closely, so that you can personally try to avoid contact with others who might have any infections, as well as any materials that are generally contaminated with organisms that might be more dangerous while your immune system is compromised. After the nadir your blood counts will improve again. When you are compromised, you just need to stay cautious and aware of your blood counts. Fever is another sign, so you should monitor that and have a low threshold for seeking help for that.

    If you are generally healthy at the start of chemothearpy and you do what you can to stay healthy during chemotherapy, including some exercise when your counts are better, the risk for complications is lower and most get through it without many of them. Others here can help with advice particular to getting through the choice of chemo that you are making and for the trastuzumab. Effects will vary somewhat with your age and the age of those who advise, so keep that in mind.

    The fears and tearfulness are common among many of us. Doing treatment that is as yet so unknown to you personally will be emotionally difficult and frightening. You will meet many others who will share their knowledge and experience with you along the way, and that bond is healing.

    A.A.

  • footballnut
    footballnut Member Posts: 449
    edited May 2014
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    yensmiles I am on FEC for 3 rounds then taxotere / herceptin for. 3 rounds. I just had round 2 last Wednesday. So far I can't complain about SEs. So far everything that I've experienced hasn't been as bad as some of the hangovers that I've experienced

    If u have any questions let me know

    Best of luck and ((((hugs))))

    :-)

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    Footballnut, thank you! I've actually been in the background reading your progress on the other threads, the ups and downs, and glad that you look FABULOUS! you really do, and you have a gorgeous smile! 

    AlaskaAngel, here, they'd admit patients as soon as temperature hits 38 degrees and then do the blood test to see if the shots are necessary.. the gcsf shots (which i think in many threads here they call it by the brand names neulesta or neutrogen). I've already been told by my brother's friend (the onco I saw on Monday) that I WOULD need it given my age profile, it always happens!!! 

    One good thing is, I've stopped oncologist-hopping with the hope of hearing "no chemo needed"... now it's really getting all the emotions out of my system and be ready for chemo with a smile next week! :)  My brother's friend, whose own mother is in stage4, said very frankly, "You only have ONE shot at it, it's now. Once it has mesta... there is nothing you can do, it will keep coming back." So, I'm now determined to go through chemo, herceptin, radiotherapy, the works.. because there is prevention now and very close to a cure, but no cure later.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    yensmiles - some pre chemo and post chemo meds I was given:

    Dexamethasone (a steroid) - taken the day before, the day of and the day after

    Emend - best anti nausea medication - ask for it - you take one on the day and then one each day for 2 days

    Onadestron was also given - taken for a couple of days after

    I'm so glad you have made the decision - I know it will cost you a lot but it is worth it - your brother's friend is right


     

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    Thank you Suzieq, those medication look familiar, think that's what my doctor wrote in advance for me to digest! :) haha, i won't even take paracetamol for flu or fever, and would just have heaps of water to flush everything out if i ever have food poisoning, now i've to take steroids and loads of other stuff! 

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    Emend is the most important but it is expensive

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    Thanks Suzie, i'll be sure to take the meds! While at the waiting room, heard some tales of people not taking it or took it a bit late and suffered! 

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    It's great if it is offered - take it - I never threw up but my tastes for different foods changed. If I think of some of the foods I ate back then and  feel sick.

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    Yes Suzie, the hospital + doctor/nurses team that i will be choosing are very experienced.. so they give the works! and i get frowned upon when i ask questions such as "Can I not take this?"

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    I'm glad you are in good hands ThumbsUp

  • footballnut
    footballnut Member Posts: 449
    edited May 2014
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    yensmiles thank you for ur kind words!  I'm glad that u have reached a decision. A will go well!!  I also get the neulasta shot a day after chemo. I hate needles and whimper like a little girl but it really is nothing. Thankfully I have not experienced any bone pain as a result. I have heard that some women take Claritin as a precaution for bone pain which may ease symptoms but while I have some just incase I've never needed any

    Today my little friend came up visit. This is the. 2 nd time that My period has come since starting chemo. Hurray for me !!

    Lol

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    Good one Kayb - I took claratin and a pain killer when I got dreadful leg pain 2 or 3 days after a treatment - only had it once as I started taking them before it was due to kick in.

  • specialk
    specialk Member Posts: 9,227
    edited May 2014
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    It is important to take the Claritin (or generic loratidine) at least an hour prior to the Neulasta injection, and to continue for several days - up to a week.  I have a friend who is in chemo currently and her doc says take a 24 hour Claritin (10mg) every 12 hours - so essentially a double dose.  It is thought  to lessen bone pain by controlling the edema in the bone marrow as the Neulasta prompts it to produce extra white cells.  Here is the link to the study if you need it:

    https://clinicaltrials.gov/ct2/show/NCT01311336

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    I didn't have Neulasta - the pain came from the Taxotere

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    thanks kayb for sharing! it is super-helpful!!

    and thanks SpecialK for the link! :) thanks suzieQ for the mention on claritin.

    I know i'm bordering on whining but after being okay for most of the morning, i feel super-down again, after checking an email from my oncologist (replying to an earlier question on circulating tumour cells), that chemotherapy doesn't cure all those who have it, it only works for 1 of 3 or 1 of 4 patients who go through chemo!!! Makes me feel sad again.. I HATE CHEMO!!! I don't wanna thrash my body and not knowing whether it'd be "perfect/natural" again after chemo. How did you ladies do it?! 

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2014
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    yensmiles - saying that it works for 1 in 3 or 1 in 4 is not really fair to you. Yes it is a crap shoot, but one you need to take. I was 57 when diagnosed - now nearly 5 years out - and I got over it. Really the only lingering disability is seeing those foods I had cravings for at the time and feeling sick. I did it because I had complete faith in my oncologist - he cured my husband of bowel cancer spread to the lung - I did a lot of research and decided I had to do it, for my husband and children's sake and my grandchildren's sake and most importantly for my sake. Once you get to the Herceptin only treatments, it's a breeze - it really doesn't take long to get through the first 18 weeks and then you can relax a little and continue with the Herceptin. Remember Herceptin is not chemo - it's a monoclonal antibody - it shouldn't make you sick at all. BTW - TCH is the standard treatment and I'm not sure of the research success of FEC-TH - something worth checking I think. Most of the studies have been done on TCH.

  • yensmiles
    yensmiles Member Posts: 211
    edited May 2014
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    Thanks Suzie for sharing, and am so happy to hear that the oncologist successfully cured your husband. I am not afraid of HErceptin.. just the chemo effects.. and after spending much of the afternoon in misery, i dug up more studies, read more, and am comforted again by the results of HErceptin (which of course means i've to take chemo, since it goes hand in hand for now). According to one of the oncologist, FEC-TH (altogether 6 chemo cycles) would be stronger than TCH(4 cycles), with the T being cyclophosphamide. Two oncologist actually recommended TC+H (Taxotere,cyclophosphamide + herceptin). One would recommend FEC-TH to patients who don't have any heart issues because it's slightly better at preventing the cancer from coming back. Yet another say TCH (with the C=Carboplatin), though he earlier said FEC-TH too. That's the TCH (with Carboplatin) is very popular in the US, after one of the trials show good results and lower severe side effects. FEC is very popular in UK and I think parts of Europe, and also here in Malaysia. It is considered a 2nd generation chemo for breast cancer, while FEC-T is considered a 3rd generation chemo for breast cancer. arghghgh.. decisions!!!

  • specialk
    specialk Member Posts: 9,227
    edited May 2014
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    yen - don't know if it is helpful, but Dr. Slamon, who brought Herceptin to the market at UCLA, likes the TCH combo better than AC-TH combo - patients here are split between these two regimens, and the decision is based on a number of parameters - age, cardiac health, nodal status, physician preference, etc.  AC-TH is comparable to FEC-TH in the U.S., as Adriamycin is the anthracycline based regimen. The logic behind using TCH is the avoidance of two cardiotoxic agents.  Cardiac damage from Herceptin is usually reversible, but damage from an anthracycline is usually not.