Calling all TNs
Comments
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Yikes, I'm doomed
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Oh no Kelben..don't say that! We will all get lean together!
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Kelben -
That is much too long to wait to be seen. Of course, I can only speak for myself, but I assure you - I would be looking for a new oncologist immediately.
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To go hand and hand with Heidi's posting - but this one gives a different slant. would be so nice if ALL the abstracts, and all the medical folks could all agree on some of these things once in awhile!!!
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Oh..and agree with everyone else..you should see your onc every 3 months at least for 2 or 3 years....I think that is basically standard of care of everyone who has breast cancer..not just tn's.....
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I guess I have joined the DOOMED club as well because I have been cheating this past month and I need to shed a few pounds.
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Hey--- I only post the stuff when it arrives in my mailbox! Blame Oncology Journal for the lousy timing.
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Or - I may just be trying to make my 25 extra lbs feel more comfortable and less deadly on my short-sized frame. Plus, it was probably the ONLY article I have EVER read since being diagnosed that didn't zero in on another terribly negative aspect of triple neg! Now, if I could only grow 5 more inches and be 5'8" - then I'd have no extra poundage! A girl can dream......0
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Thanks guys, thats what I thought. I phoned the cancer clinic in Sudbury and the onc. nurse agreed with onc that once a year, with regular visits to GP is all that is ordered for me. She said they don't go looking for spots, but if I find one that doesn't go away, go to my doctor, have it checked out and then she (GP) will decide what to do. Results if they are positive for a cancer then they wait until it is bothering me and only then would they do chemo again, or surgery or whatever is needed. Geez, no wonder I'm fat.
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I see my onc every three months, my surgical onc I've seen three times in the last year and I've seem my GP several times in the last year for some non-cancer related stuff. I feel like I live at the dr's office. And.......they all work at the same facility. I do think the surgical onc visits will fade away, as he and the onc feel they both don't need to do the same thing.
I so need to get back to healthier eating......I was doing really good, then the holidays and some family stress and I'm just not doing what I should. Ugh!!!! The old saying you are what you eat.....I really can feel the difference in my energy levels when I eat badly and don't walk (the fluff is really bothering me).
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http://www.ncbi.nlm.nih.gov/pubmed/19851862
Here is another link, about metabolic syndrome and TN. I believe you can be thin and still have metabolic syndrome.
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Riley702: I don't know if there is a test for insulin resistance but if your fasting glucose levels were normal, I would think you wouldn't have insulin resistance. I've been going through the same treatment you have, MX, then rads (neo chemo.)
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Kelben..are you OK with that? I mean, I love my GP but he is not trained in oncology..I dunno..do you think it is an insurance thing?
It's OK Heidi...I get the oncology reports e-mailed to me too....
I wasn't fat at all when I was diagnosed...I was a size 8...I weighed 125 lbs. and I'm 5'5"..I looked damn good..now I'm still 5'5" but I weigh 150 lbs...25 pounds in 2 years! Ok..chemo weight and maybe I needed a few lbs..but now I have the muffin tops going..I have a gut and my breasts went up a size...36 C!
So enough of that...but..I really don't think most of us tn's are/were obese...at diagnosis..sometimes I think these studies aren't correct.
Gosh..the study sounds like we are a bunch of fat slobs just asking to get cancer because we like to eat...and I think that is far from the truth...
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Titan:
I am still laughing at your post - last paragraph!
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Kelben - I will see the medical oncologist twice a year (July and Jan.) and my GP for an annual checkup...so three checkups. My rads onc discharged me as a patient becuase he said I only needed to be followed by one doctor out of the same regional cancer centre. I can see my surgeon too but my GP has been following me the closest so I've not been back to see him.
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Titan- Actually, I didn't get that impression from that article at all. In fact, it wasn't anything I hadn't already read before (lots of articles have reference to some hip to waist ratio < or something like that>). Basically, I just took it as yet another article advocating maintaining a healthy lifestyle via weight, exercise, diet, etc.
In fact, *because* I am at a healthy weight I was able to give myself a break wrt a low-fat diet. After doing a 20% LFD for months after diagnosis I concluded that probably the best reason it was purported to reduce recurrence was due to it's potential for weight loss, not just the fact that it was lowfat. I still watch what I eat though. Every time I put something in my mouth I watch it!
Seriously though, like many in here I believe in the "everything in moderation" approach.
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My surgeon saw me up to 6 months post surgery. I am ok with my family doc. check-ups, because she is wonderful, and will refer quickly if necessary. I honestly don't know how to feel. I'm kinda scared to be left alone, but I do have faith in GP
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Just coming up for breath and checking in. While the weekly chemo hasn't been as bad as the AC, I don't get much of a break before the next one.
Kelben - my oncologist will see me every 3 months and do blood work for tumor markers for the first 3 years, then 6 months until 5 years. She will also have me get a PET scan 8-12 months after my last chemo treatment just to rule out the possibility that I was Stage IV at the start - I had a clean PET scan before chemo, she's just being cautious due to my node status. After that, scans only as needed. I appreciate the one scan, but am not a fan, so this suits me. I don't think I'd be comfortable going longer without blood work though.
I am thrilled to say that my Carbo/Taxol regimen is working wonderfully! After 3 full weeks (4th treatment was Monday), I can no longer feel my tumor! My doctor did a little happy dance, she is so cute, lol. She is optimistic that with 8 more weeks, I will get a pCR. I'm keeping everything crossed, that's for sure! Even though I really dislike weekly treatments, I just keep pushing through knowing that it is killing my cancer fast.
I hope everyone is getting ready for a great holiday, and that we all see the New Year come with wonderful things in store :-).
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Suze 35 - congrats on the obvious response - hope it continues to pCR! I have a question - no one has mentioned tumor markers to me - is that part of your standard bloodwork? Did they do them pre-chemo or is it something they will only monitor post-chemo? what protocol are you doing? Is it the DD/ACT? I couldn't quite tell from your post - I am doing a trial now but will do a more 'standard' protocol after the trial is finished and am just looking around to see what is typical - I am thinking I'll ask for the DD/ACT (with 12 weekly Taxol) but not sure yet. One of the docs on the trial said that some participants have just been doing Cytoxin/Taxotare afterwards.
Wishing Happy holidays with minimal SE's to everyone!
Donna
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Donna - I'm not sure if all doctors measure tumor markers, but mine did when I started my treatment. It is part of the standard bloodwork she does on me. She isn't as concerned with the actual number as she is with trends. So if it starts to go up (once I'm done with everything), that could be an indication that something is going on. I am doing a variation of the standard chemo treatment - I did DD AC x 4, and am now doing Carboplatin/Taxol weekly x 12. Because I am doing neo-adjuvant, we were able to do a MRI after my AC, and my doctor wasn't happy with the 50% response, so she added the Carbo. It isn't "typical," but more doctors are using Carbo from what I can tell.
Hope that helps!
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I will get my GP to do markers for tumors. Thanks alot guys I knew I could count on you.
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Kelben: I would get a new Onc, too. TN can be so agressive and unlike other BC diagnosis, you could grow something quite large in 6 months let alone 12! I found my lumps in between Mamograms, however, I didn't discover the one under my nipple until right before my biopsy and I only discovered it because I aggressively and frantically started comparing breasts and found it myself--no dr. did!
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Sorry, missed the last post! It's great that you have a great relationship with your GP. Anyone can request having the cancer markers once every 3 months. Insurance pays for it and that way if anything does show up you would have less of a chance of having it be too late.
Heidi: Watch food, LOL!
I was 178 pounds when I was diagnosed--fat for me for the first time in my life. Now I seem to be holding steady at 150. I dropped to 140 during chemo. My dr. says 155 is my normal weight but it all seems to go to my belly, so I am not eager to go up. I am amazed that I am maintaining my weight through the holidays, as, like I stated before, I am no angel and have been succumbing to my sweet tooth. Wondering if the weight increase coincided with having BC as I have never been that over weight--I was up two clothing sizes and I have been thin all of my life. I was plagued with uterine fibroids and heavy periods and hormonal and thyroid imbalance, too, prior to my diagnosis.
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thanks MBJ I think I will ask for someone different. This is not a case of acne I have, and I know I would feel a lot better if someone else was checking things besides me and my fam. doc.
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Lovelyface: I am happy that you have a choice. For me, it was MX or I would die. I am now grateful that was my only choice as I have much nicer breasts then ever before, even at my fattest! You sound as if you are in a really good place now that you have made your decision. That was the hardest part for me.
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Maura Dickler, MD: My Approach to Anthracyclines in Breast Cancer
OncologySTAT Editorial Team. 2010 Dec 21, Interview by L Scott Zoeller
Dr. Maura Dickler is Associate Attending Physician, Memorial Sloan-Kettering Cancer Center, and Assistant Professor of Medicine, Weill Medical College of Cornell University. For more information about Dr. Dickler, view her profile. OncologySTAT: Would you discuss the data that have lead to the declining use of anthracyclines in the treatment of patients with breast cancer?Dr. Dickler: There has been controversy concerning the treatment of breast cancer patients with anthracyclines. These patients fall into two groups. One group includes the women who have HER2-positive disease. The other group includes all other patients, including women with triple-negative breast cancer as well as those with hormone receptor (HR)-positive disease.For patients with HER2-positive disease, the trial that has had the most impact on the use of anthracyclines is the BCIRG006 trial, presented by Dr. Slamon.1BCIRG006 was a large adjuvant phase III trial in HER2-positive patients who were randomized to either doxorubicin and cyclophosphamide followed by paclitaxel (AC-T); doxorubicin and cyclophosphamide followed by paclitaxel and trastuzumab (AC-TH); or docetaxel, carboplatin, and trastuzumab (TCH – a non-anthracycline-containing arm). For the analysis, the study was designed to compare the control arm of AC-T with TCH and AC-TH. The efficacy of both trastuzumab-containing regimens (AC-TH and TCH) was statistically improved when compared with AC-T without trastuzumab. There was no statistically significant difference for patients between the two trastuzumab-containing arms (TCH and AC-TH) in terms of disease-free or overall survival. Numerically, there were more recurrences in the TCH arm, but this was not a statistically significant difference.However, there are differing side effects between these two regimens. We have known for some time that trastuzumab potentiates the cardiac toxicity of anthracyclines. In this study, there were more patients who developed congestive heart failure in the ACTH arm, although none of these cases resulted in cardiac death. This study therefore offered physicians an alternative trastuzumab-containing regimen without the need for anthracyclines, and the potential for less cardiac toxicity. The use of this regimen has increased for HER2-positive patients, particularly those patients with co-morbidities that increase the risk of developing CHF in the future.I consider the use of the TCH regimen for patients who have a decreased left ventricular ejection fraction or significant co-morbidities that increase the risk for subsequent CHF (long-standing hypertension or underlying heart disease). I have not generalized the use of TCH to all patients because I am not convinced that we do not still need anthracycline in the majority of HER2-patients. I think that the majority of healthy patients can tolerate an anthracycline-based regimen and that remains my preference in healthy high risk patients.OncologySTAT: What approach do you use in your practice for patients with HER2-negative disease?Dr. Dickler: A randomized trial that compared an anthracycline-containing to a non–anthracycline containing regimen in HER2-negative patients was the US Oncology Trial by Stephen Jones. This study compared TC (docetaxel/cyclophosphamide) vs AC (doxorubicin/cyclophosphamide), both given intravenously every 3 weeks for four cycles.2 In that study, there was an improvement in disease-free survival for patients on the TC regimen.For patients for whom I once would have considered using AC, I would now give TC because it is equally, or more, efficacious with less cardiac toxicity. However, the fact of the matter is, I do not use AC alone very often in my patients. In my low-risk node-negative patients, I still use cyclophosphamide, methotrexate, fluorouracil (CMF), and I use dose-dense (dd)A-CT most frequently in my node-positive patients. I use TC for patients in whom cardiac toxicity is a concern, such as patients who are older with a decreased LV ejection fraction.OncologySTAT: What are your thoughts on patients with triple-negative disease?Dr. Dickler: I often give patients with triple-negative disease ddAC-T, as I think they are the patients who have derived the greatest benefit from anthracycline- and taxane-based chemotherapy.OncologySTAT: What are the benefits of adriamycen in patients with HR-positive disease?Dr. Dickler: We are trying to avoid chemotherapy in our hormone–receptor positive patients, particularly, in our low-risk, node-negative patients. So, I am using OncotypeDX testing in appropriate patients to see where I can avoid chemotherapy completely. Once I do use chemotherapy, I favor CMF or ddAC-T.0 -
Kelben - good idea. We will ALL feel better knowing you are seeing an onc more than once a year.
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Kelben..I hope you don't think we are being a little pushy here but dang it..tn is aggressive and we need to be watched closely for at least 3 years...tell them we said so!!!
MJG..how tall are you? You must be fairly tall to have 155 as a normal weight...I think my normal is around 135..which means I need to drop 15 pounds.
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Titan: I am tall-6'
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Heidi: Thank you for sharing this, as it is so informative! Great stuff.
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