Calling all TNs
Comments
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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. -
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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Hi Girls , checking in.....
Thank you all for the Congrats.
MBJ and Retrievermom thanks for the Happy Dances
Titan : The guy in the picture is my other half. Married 18 years, together for 22. Handsome , don't you think? He is going through the police academy and is in the best shape of his life. I need to do something fast to loose the 9 lbs I gained on top of the 10 that I wanted to loose before chemo. LOL
Heidi : Thanks for the informative posting - I agree with Titan we should all get lean together!
MBJ I posted the picture of my 2nd fill on Dec 20th. Check it out.
To all of you... Just in case I do not log in ..... Happy Holidays. Merry Christmas! And a Happy and Healthy New Year to all of us.
Monika
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MBJ - It is wonderful that you have lost all that much weight since diagnosis. Being 6' tall at 155, makes you lean and slim. I am 5'5" and am quite heavy right now, although people say I don't look it. I am at least 184 and was about 179 at diagnosis. I seriously need to lose weight, but have no motivation. My mother who is visiting me from overseas is a sweetheart, but our lifestyles are so very different and I feel that she is now an obstacle in my losing weight. I have to make sure there are meals 3 times a day, and have to eat with her. I just don't make the small meals like before, but preparing for two, makes me eat too much, too many times. She will leave end of January, so I am hoping I can eventually start an exercise program and eating right.
I am so freaked out, since it is now 5 months after diagnosis and I haven't done anything to improve my life, except add a little bit broccli in my diet and eat out much less. I still add a few teaspoons of turbinado sugar to my teas and drink a little bit coffee with milk. I am a total mess. Somehow my spirits have died or something and it almost seems like that maybe inside my heart, I really have given up or something.
Anyone else feeling like me? I am in the "I hate myself" mode. Normally, I was the kind of person who never went a day without doing something to improve her health. Many books on my bookshelf are about how to improve your health, or about exercise, yoga or something. I still have my boxes of herbs and supplements, which were all about improving my health, my life. And now, I am no longer like that, when I need to be. How did you ladies do it?
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I don't think you're pushy at all. If it wasn't for you I wouldn't even know about how aggressive TN is. I am not a sit in the corner and wait kind of person, so I will definately get things moving here. I have a mammogram booked for the second of Jan. and an appointment with my BS and GP for the new year.
thanks again ladies you really are the best.
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Lovelyface - There are so many emotions that we all feel thru this process....sounds like you (as I) feel like your body betrayed you after you worked hard to keep it healthy and the self loathing starts. Sometimes S*** happens and just accepting that can neutralize the negative feelings. It's quite the fight to get thru the surgery, chemo, rads, SE, etc. and it taxes our courage and strength. You are still in the midst of this mess, so try to lay low, focus on pure survival and give yourself a huge break. Do what you can do and go easy on yourself. I say this for myself as well...when it is time, you can begin to push past the trauma and find your life again. For some of us, this is like a hurricane or tornado came through. When the storm passes, you will take a deep breath and begin to pick up the pieces. A year from now, things will be very different and the intensity of this event will fade. Maybe you can start to take some baby steps and that will increase your confidence in your ability to manage your life again. Many hugs!!
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I'm a size 6, but a year ago I was a 4. I'd like to be @125; at 122 many felt I was too thin. I really liked how I felt at 122 though. (I'm 5'4").
I'm not into fad diets but I have heard people talk about something called The 17 Day Diet that is only available online. Channel surfing one day I saw Dr. Phil talking about it--- maybe he plans on trying it also? It looked very reasonable so you may want to check it out.
We are eating out for Christmas Eve and I can't wait! Both my children will be here.
Maybe we should start our own Biggest Loser Club for New Year's resolution?Of course, I will never give up my chocolate...
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Ladies, is it normal to run a fever after your first chemo treatment...they are sending me to the ER...yuck, yuck, yuck..otherwise im feeling ok
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delete
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moe- yes, as long as it does not go above 101, as I recall.
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Lovelyface: TNBCRuth is giving you excellent advice! I still haven't done what I need to do to excercise daily and take better care of myself--I think I am still in shock that this even happened because I too though I was healthy. Having others in our home, especially family, can make it overwhelmingly difficult and, from what I understand, there is much more pressure from your culture then from mine as to how you are supposed to behave. It is only my husband and myself and his family lives far away and don't get that involved in our lives, so I do have it easier then you but don't beat yourself up--You will find the strength within yourself when you are ready. Maybe you will eventually need counseling, or physical therapy or group therapy to help motivate you, but right now don't beat yourself up.
I have never had a weight problem until the last year or two before diagnosis. No matter what I did I couldn't lose weight. I loved the Perricone 28 day plan because I got to eat alot, I never went hungry, I easily lost fat not muscle and it was only 28 days. It seems to have reset my metabolism because even if I eat junk I am not putting on weight now.
Heidi: I will never give up my Red Wine or my Dark Chocolate!
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Titan...you crack me up! and yes, I'm overweight but I have dropped 5 pounds since my diagnosis! Isn't stress FUN!
I start my chemo Dec. 30th...Happy New Year to ME!
I saw my med/onc last Monday and I will be getting 4 rounds of Taxotere & Cytoxin with radiation to follow...if all goes as planned...
I know that chemo affects everyone differently, but can you pass on any survival tips?
My med/onc said to take a multi-vitamin everyday during chemo...anyone else told this? What did you take?
Have any of you been to a chiropractor during chemo?
Merry Christmas!!!
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Mommafluff- I was about 20 pounds overweight (145) before chemo. I dropped 10 in the time after surgery and end of first chemo. After the second chemo though I ate all the time!! I have my last chemo on the 30th (TC) and am still eating! I have gained 5lbs back, but I'd better watch it!! My experience with TC has not been as awful as I thought it would be. Days 3-7 are my worst. Just a yucky tummy (I've never thrown up) and kind of flu like feeling. I had Neulasta TX 2 and 3 and have taken Claritin every morning and Aleve when needed. I have had a cough and runny nose throughout treatment-the Claritin helps there too. I have one black toenail that I will probably lose, but have not had any neuropathy so far. I have not seen a chiropractor (although I would like to) because I have a tissue expander and can't lay on my belly. If you have any other questions re: TC just PM me any time!
Tiffany
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mommfluff61. Well, the sooner you start the sooner it will be over. I hope you do not experience a lot of SEs. I was very lucky and I am overweight also. I dropped 20 pounds during everyting (yeah!) Had very few SEs with AC and then had Taxotere every 3 weeks. I had more SEs with Taxotere but compared to some of the others, mine were nothing. I drank a lot of water - could not stand the taste of most other drinks. Lemonade was good. Someone told me to suck on lemons and/or limes to help with everyhing tasting bad after chemo. I never tried it but maybe you could. My worst SE was with the last 2 Taxotere. Could not eat day 4,5,6. Just had no desire. Here is hoping you have manageable SEs.
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DigniCap, an experimental cold cap, may help cancer patients undergoing chemo keep hair
BY Rosemary Black
DAILY NEWS STAFF WRITER
Tuesday, December 21st 2010, 5:00 PM
Read more: http://www.nydailynews.com/lifestyle/health/2010/12/21/2010-12-21_top_hats_experimental_treatment_in_the_form_of_a_cap_may_help_cancer_patients_ke.html#ixzz18yTs8jp4
A mechanical strap-on cap worn during chemotherapy may one day keep cancer patients from losing their hair.
Four patients here in the U.S. are trying out the "DigniCap" - a hat that contains a cooling gel and fits tightly on the head - reports Msnbc.com. During treatment, the gel chills the hair follicles, thus restricting the amount of chemotherapy that reaches them.
San Francisco breast cancer patient Heather Millar, one of the patients trying out the experimental treatment, still has most of her hair despite the fact that she's already had three chemotherapy sessions.
Typically, patients begin to lose their hair after a single treatment, and at least 65% of cancer patients who undergo chemotherapy lose their hair.
"I think that if women knew about this, there would be a total stampede," said Millar, who blogs about her experiences on "My Left Breast."
The idea of losing her hair devastated the 47-year-old freelance writer last summer, when she learned she would undergo chemo. She's not alone.
Some women who are anxious that they will lose their hair decide to either forgo or delay chemotherapy, or they choose a treatment that is not as effective, according to Dr. Hope S. Rugo, who directs breast oncology and clinical trials education at the UCSF Helen Diller Family Comprehensive Care Center.
"It's torture for the women," Rugo said. "Patients will say to me, 'I know this sounds stupid, it seems so much like my vanity, but the thing I’m most worried about is losing my hair.' "
The DigniCap, made by Dignitana in Lund, Sweden, is part of a trial limited to patients whose breast cancer is in the early stages. While UCSF is now one of the two sites in this country testing Dignicap, it will soon be tested at Wake Forest University Baptist Medical Center, according to Dr. Susan A. Melin, an associate professor of hematology and oncology in the comprehensive Cancer Center at the school.
Patients wearing the caps, in which the gel is cooled to -30 Celsius, are instructed to change the caps frequently during and after their treatments and sometimes switch caps 15 times during a treatment so that the proper scalp temperature is maintained.
Keeping the scalp cool causes the blood vessels around the hair roots to contract, so that the hair follicles don’t get such a big amount of chemo drugs. While cold caps and other similar freezing devices are not uncommon in Europe, here in the U.S. they're not widespread.
Medical experts fear that cancer cells could somehow remain in the scalp since the cold would keep the chemo drugs from killing them.
But so far, it appears from studies that the risk of this happening is very low. In one study of 1,400 patients followed for between five and nine years, only 10 patients went on to develop scalp cancers.
But not all cancer specialists think the caps are a recommended treatment. Oncology Nursing Society spokesperson Marlon Garzo Saria does not recommend the treatment for patients where he works in the Division of Neuro-Oncology at the Moores Cancer Center at the University of California, San Diego.
"There is a concern that it prevents chemotherapy from reaching cancer cells that may be present in sanctuary sites in the brain," Saria wrote in an email. "Until we can find clear evidence that this is not so, I would rather err on the side of caution and presume that the risk of cancer recurrence outweighs the benefits of preventing hair loss in patients receiving chemotherapy."
But patients like Millar are happy for the opportunity to wear the cap, which comes equipped with several layers. Someday, if approved by the FDA, the chilled caps would be put into use for the 225,000 women diagnosed in the U.S. annually with breast and ovarian cancer.
One breast cancer patient who's grateful for the Dignicap is Shirley Billigmeier, who was diagnosed with breast cancer last year, did not want a wig, and saved her hair after wearing the cap.
"No matter how good a wig is, it just was not me," the 60-year-old Orono, Minn. resident told Msnbc.com. "I'm not a victim-type person. I didn't want to be labeled as sick and a victim. This was a protection for what I already had."
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