Calling all TNs
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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!!0
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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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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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re: Dignicap...from the article "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."
I vote to forget the cap. Although I am finished with treatment, I have less than a 1/2" hair and I hate it, but getting scalp cancer??? Bet THAT would do a number on your hair~~~Thank for sharing articles and ideas to discuss Heidi!!
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I'm with you Ruth. Though my hair loss was very emotional, getting cancer back would be more so. Will be interesting to see how well the idea catches on. At least it gives women another choice though.
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LovelyFace,
Feeling very much like you are at the moment. I am in my seventh month of treatment and it is really getting to me. I have 5 more weekly Abraxane to do and am also doing radiation at the same time...so my counts are wiped out. I had a fever last week with low counts and had to go to ER for antibiotics. I just had my third neulasta shot today and hurt, hurt, hurt. I've gained 10 pounds since diagnosis and was already overweight at diagnosis. Keep beating myelf up and know I need to lose weight and get active but have no motivation while doing treatments. I really just was this to all be over and get my life back. This is not living!
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Re: cold caps..considered that too..but what the heck..it's not like my hair was that great b-4..in fact it was crappy, frizzy, dry..pretty ugly..so anyway I lost it and now I can say my hair is much, much better, it came in curly and thick..but where as b-4 it was frizzy and fine...now I use gel and and flat iron to even it out about and I love it! I'm lucky to have in our small town and salon that could be in NYC...they are just awesome..in fact..my daughter's bridal party will be going there to have their hair, nails and make up done the day of her wedding..we are going to take food...and have a regular party...I think a couple of samoas will also be in order for the day...I can hardly wait.
Lovely face..please don't beat up on yourself..You are eating some broccoli..that is the first step...depression is very very normal for we BC people (not going to call us patients)... The emotions with BC are so very high...and so very low. You WILL be fine! Take this one day at a time...I've learned to be somewhat comfortable with my new weight...I'm going to lose it..but I'm not in that big a rush to do it...I enjoy food...why not? I'm going to try to eat what I want..but in smaller portions..plus exercise...We love you..no matter what..OK???
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moe...are you back from ER? Are you OK???
Suze..yay on that stupid tumor disintegrating..wonderful news! So..your onc. was dancing? I think I like her!
Oh..and Monika...your husband is very very good looking! He is lucky to have YOU!
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DDG..hang in there..you are almost done...7 plus months of treatment...that is a long time...but you are on the downside now...you can do it...!
Ya know..after all we have been through..when I hear someone complaining about what I consider stupid..I have a hard time not looking and them and saying'..are you kidding me? But..I have to realize that to these people this is normal...I have a hard time getting their concern...
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Diagnosed 12/02/2010 with stage 3, grade 3, IDC, 6cm, triple negative at the age of 45. Having a right mastectomy January 5th and then chemo and radiation. Right now, I'm not too happy with the lack of communication that I seem to get from the staff of my surgeons office. Seems like there should be a better way to get information.
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Wow, sorry you have to be here with us. How incredibly frustrating. I'd make an absolute pest of myself and force them to talk to me. Is there another place nearby you could be treated? Although with the holidays, you probably couldn't get surgery sooner than you're already planned.
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tnbcRuth - I am wondering when you finished treatment? You at least have 1/2 inch hair, I am completely bald right now and it is the worst thing ever, I hate it, I can't wait for my hair to return. How long did it take for your hair to grow half an inch?
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alamik: So sorry you have to be here but you will find much needed support here. Most dr's are not very forthcoming so be a pest, as lots of questions, start reading on here, it's a huge learning curve and you will have a long journey and we will be here to help you through. Hugs.
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Mommafluff,
We have very similar diagnoses. And apparently the same treatment - 4 x Taxotere and Cytoxin. Just today (23Dec) I had my second infusion. Yes .. 'everyone is different', but I'm finding less so than expected. My onc also said to continue with the multivitamin. I was also extremely vitamin D deficient at the start of treatment (1st infusion Dec. 3rd) and she prescribed 50,000 IU of vitamin D weekly for 8 weeks. I hope that does something. Two recommendations that I should have heeded prior to the 1st infusion were: rinse mouth 4 times per day with 1 tsp baking soda and 1/4 tsp salt in 8 oz. water for about 30 seconds, and drink tons of water for the 48 hours following infusion. The rinse could save you from severe, sleep-interrupting oral ulcers. For bone pain followed by soft tissue pain they had to prescribe oxycodone, and Ativan to sleep. What a difference those made! Then, after 2 weeks, ALL PAIN VANISHED! Unfortunately my WBC didnt rise as it should have, and today (24Dec) I have to go back in for a shot of Neulasta. Hope it's not as painful as I've read on this site.
Best of everything with every aspect of your treatment. I'll give you any info you care to have since I'm 2 weeks ahead of you and we seem to be have such parallels. I'm following the diet recommended by Dr. Keith Block from LA. And my onc has already alluded to aspirin following all treatment. It reassures me that she is up-to-the-second on new research.
PS
Don't know how to get my diagnosis at the bottom of my post - although I check the box1
(IDC, 1.3cm, Stage 1, Grade 3, 0/7nodes, triple-negative)
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Thanks Riley 702 and MBJ!! I think one of the things that is really irking me right now is that because I have been a nurse for so long, I can spot the whole "dog and pony show" when I hear it. I have no problem with pestering them at all!! Unfortunately, I am still the one who ends up frustrated! I didn't find out the Triple Neg diagnosis until today and then when asking if getting chemo first before surgery might be a better option, I got absolutely nada zilch from the surgeons head nurse! I plan on calling my cancer support specialist on Monday and looking into other opinions. I have been reading some of the other boards on here for the past 2 weeks and I must say, I have found loads of useful information. You all ROCK!!
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after a few hours of sitting in the ER they sent me home saying it was just an reaction to the Taxol...i ran a fever and my face and chest turned red...they took blood and they said my white blood count was a little high, (whatever that means) but over all i was fine...to take my steroids and normal meds. so far i haven't had many SE's tired of course and only a little nausea this am...my head itches..lol..wonder if that means its already coming out..
i hope everyone has a beautiful blessed Christmas...
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alamik : I hear your frustration and the waiting is horrible, no one will disagree with that. It is soooooooo frustrating when they won't tell you stuff. I get days when I am so mad at the world and I'm not civil with anyone. You must know though that you will get your answers, and your treatment will get started. Try to get involved in the Christmas celebration a bit, that may help some.
Know that we all are right beside you... we've all been were you are.
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alamik: I posted on another thread you posted on, but I strongly urge you to get a second opinion and ask about neoadjuvant chemo. Your tumor has doubled in such a short amount of time, I would have hoped they would have suggested starting you on chemo prior to surgery to shrink it, find out if you had a complete pathologic response, or at the very least try to curb the growth rate. The waiting before mx is the worst. So sorry you have to go through this at this time of year! But you will find the support here is awesome, and so are the ladies who make up this board. They'll try to help you along the way and you'll find someone who has been through similar dx as you. Just keep in mind you are NOT a statistic. Each person is individual and our cancer responds differently from anyone elses. No doctor knows exactly how you will respond, so if anyone makes negative comments about your prognosis, just keep that in mind. I'm curious what exactly they're telling you as far as treatment, or what they've said so far. Have you had an MRI or US? Have they done any genetic testing or suggested it? Are you having unilateral or bi?0
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ChrissyMH- Another good thing to try is Biotene toothpaste and mouth rinse. I have used it twice a day everyday since tx1 and am now 7 days away from tx 4 (my last) and have not had any mouth issues. The Neulasta shot burns going in, but the needle is very fine so the stick isn't bad. I take a Claritin everyday-helps with the Neulasta pain and the cough and drippy nose I've had since tx 1. Aleve helps too!0
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Alamik:
welcome here. I hope you will be able to find some answers. THese boards have helped me a great deal.All:
I am still recovering from surgery (lumpectomy and SNB)--still a good bit sore, surprisingly, since the surgery was Monday. Was hoping to be more mobile now. I think having 3.5 and 19 mo old boys has been slowing down my recovery! DH has been fantastic of course.Oh--and I agree with Heidi--*so* not giving up my chocolate.
Hugs and Happy Christmas Eve's to everyone!
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