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Thank you for letting me know how you dealt with Tamoxifin. I am going back for my 6 month check up in about a month from now. He may end up switching my meds to the one that you mentioned. Chemo has put me through a "temp" menopause, so my body is confused which is why I think I am gaining weight easy (well, that and besides all the junk I had been eating). I have already been diagnosed pre-osteo, so my bone density is starting to go in the wrong direction, but that was from all of the chemo. I am hoping that it will improve. I do make sure I have enough calcium some days I probably have too much, but I guess too much is not going to be an issue. This is wonderful to have a group where people can relate and discuss what their experiences have been.0
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Tamoxifen seems to have the tendency to slow your metabolism down and make you gain weight. When I asked my oncologist about that he said "Tamoxifen has no calories...But it certainly makes you feel more tired and does slow you down. "
It also made my face round. I look at before and after pictures of myself on Taxomifen and it is very noticeable in my face. ...You can still lose weight on the drug and also the drug will help build up your bone. Weight bearing exercise also helps reverse Osteopenia. (the beginning of Osteoporosis.)
Do whatever you can to control your weight, exercise, and eat as many vegetables as you can (10 of 1/2 cups a day). It is important to do this. I really believe that you can stop or slow down the cancer by taking care of yourself especially through diet. It got me 11 years past my first diagnosis of breast cancer. I didn't do the chemo. I turned it down. Instead, I did the holistic diet and now I'm starting to waver.
I have flashing lights in my right eye and am booked for a brain MRI on Tuesday. It's so freaky. ....Do what you can girls. ...Lose that weight. Estrogen is stored in our fat. Get rid of the fat in your body!0 -
Also, there are blood tests that you can get to determine whether or not you are in full menopause. If you are, then you can go on Letrozole, however you might need to take a pill to strengthen your bones as well. Those pills also have side effects.
In BC, where I live, they seem to be doing a couple of years of Tamoxifen and then a couple of years of Letrozole.0 -
http://www.bclymph.org/Resources/Documents/LAD 2012 Poster and Agenda-1.pdf
There is a Lymphedema Association and they are having a BCLA Lymphedema Awareness day on April 21st 2012 in Vancouver.
I think the link above should connect you with that information.0 -
Thank you for posting that link0
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You are so welcome! I have Lymphadema and I get my sleeves on- line at this store. (see link below). It's called Lymphadivas.
http://store.lymphedivas.com/store/pc/home.asp
They sell sleeves that are pretty and gauntlets (gloves) - if your fingers swell.
I phone them and ask them for the most inexpensive, "2nd"s ---which are flawed, but are cheaper. They work just as well.
I get the sleeves that have the least compression. I find them very adequate and comfortable. I like the ones without the arm bands the best, they seem to last longer.0 -
Just wondering if anyone here had Docetaxol plus Herceptin as part of their chemo regime. I'm about to have my first treatment with this combo tomorrow and my doctor said "brace yourself". Side effects, anyone? Tips for coping with the pain?
Kathy0 -
Kathy,
I have not had the chemo protocol you mentioned, but I do hope it went well on 2/28 and that you and your doctor find ways to minimizing side effects. The only things besides medication I can remember (my chemo was back in 2007-08) doing to minimize the pain was to allow myself a full blown pity party once a day for 20 minutes where I could let the misery wash in waves emotionally and then I declared it done and the other thing Idid was using a very neutral lotion and have someone gently rub it on my skin to divert me. I have heard people recommend acupuncture.0 -
The only things besides medication I can remember (my chemo was back in 2007-08) doing to minimize the pain was to allow myself a full blown pity party once a day for 20 minutes where I could let the misery wash in waves emotionally and then I declared it done
This is an excellent idea. We all spend so much of our time making sure we don't worry our kids or spouses or friends or parents that we forget we need a pressure relief valve. Thanks!0 -
I took a LOT of warm baths to help with aches and pains. It was the one place where I could cry openly and for as long as I needed to without having to deal with everyone else's reactions to my emotions. LOL I had a couple of days following a chemo treatment where I just stayed in my pjs and bathrobe and took pain meds and dozed in the recliner while watching old movies or "The Waltons." Sometimes after my husband got home, I would go into my room for the quiet space that I needed while they all watched tv. Thank goodness it doesn't last forever, there is a beginning and an end. Just like when you are in labor! You can do this, and we are all here for you!
Rhonda0 -
Wow! Hey girls, listen to this... I was getting symptoms that made me think I had brain metastases. (Breast cancer, when it spreads- most often goes to the bone, liver, lungs or brain.) So-long story made short... I had a brain scan because I was getting flashing lights in my right eye, a bit of double vision, blurred vision and was dropping things, stumbling, my words were ocassionally slurring, and I felt that my math skills (cognitive) were off etc. ) As it turns out I don't have brain cancer but I found out from my brain scan- that not only did I have a stroke (from Tamoxifen or Letrozole????) but apparently I probably have MS too! Now I get to go to a neurologist to confirm the diagnosis. So after having breast cancer twice, I have no metastases,... only to get something else. Who'da thought?
Moral of story is this: if you eat junk food and high salt- fatty foods you are asking for trouble. So... when you go to console yourself with a bag of goodies, think of me and grab an apple and a banana instead. I want to shout it out to you guys..."EAT PROPERLY". ...And eating properly means cutting out the salt, fat, trans fats and anything else that can cause a stroke. You guys take that junk food straight to the garbage can right now!, or food bank,... drop it off and then go for a walk. Eat the apple on your walk. You will feel better when you do that. I walk an hour everyday and I still had a stroke. I'm 55 years old! (As I type this, I have difficulty seeing the words.) If that isn't diet incentive for all of you, I don't know what else would be!0 -
Im sorry to hear this Gorger. Good to hear its not brain mets though! Those scares are not fun.
I hope that it turns out you dont have MS (or anything else)0 -
I am so sorry you are having to deal with more health issues. But Thank goodness it wasn;t in your brain. I hope that things turn in a better direction. Thank you for sharing your experience. God bless0
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So... when you go to console yourself with a bag of goodies, think of me and grab an apple and a banana instead.
Indeed!!!! Gorger, I'm so so sorry that you have new and very serious conditions to deal with. Good for you for being so in tune with your own body and for following through with a checkup!! The buck stops with us, and you're the living proof. Please keep us posted on your conditions. If they are Tamoxifen related, it could affect a few of us in this group. Hug.0 -
Hey everybody, I'm a newbie looking for a comfortable place to land and relax a while. My history is that I had endometrial cancer, diagnosed in Dec. 2008, and had a laparoscopically assisted vaginal hysterectomy plus a bilateral salpingo-oophorectomy (in everyday language, they removed ALL my plumbing!) plus 13 lymph nodes. I had been almost three years clean and healthy when in November of 2011 they saw a shadow on my mammogram. A follow up image confirmed that there was a 7 mm something there, but it didn't show on ultrasound. They did a stereotactic core biopsy the day after Thanksgiving, and on Dec. 1st I got the diagnosis of Invasive Ductal Carcinoma. I had an MRI to make sure there was no second gunman on the grassy knoll, and on Dec. 21st I underwent a lumpectomy and lymph node biopsy. The nodes were clear and the tumor was removed with clear margins. I am currently undergoing radiation therapy to catch any stragglers. My prognosis is excellent, but I will be having genetic counselling in June, as I have had two estrogen dependent cancers and there is a greater possibility that I have BRCA1 or BRCA 2 gene mutation (cousins had multiple BC lesions in their 40s as well, not a good outlook). I will be starting aromatase inhibitors in another two weeks (I am, naturally, post menopausal). I currently weigh about 214 lbs., down about 10 from three months ago. I know that obesity can add to the threat of cancer, not to mention heart disease and diabetes, so it is really my wish to take off this extra weight before it kills me. I want to be here for my kids and my grandson (plus any future grandkids!), and the only way to do that is to take care of myself. I am hoping this will be a place where I can find some support and perhaps also lend an ear or an arm, or maybe a tissue to others who need it as well.
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The nodes were clear and the tumor was removed with clear margins. I am currently undergoing radiation therapy to catch any stragglers. My prognosis is excellent, but I will be having genetic counselling in June,
What a journey! So happy for you that your nodes were clear. I have genetic testing coming up also, and I know if I carry any of the genes my sister and nieces and kazillion cousins will all be affected in some way by the news. Best of luck to you.
Kathy0 -
First let me say - HOLY CRAP!!! - I am amazed by each and every one of your stories - I'm almost embarrased to join this group but I have a lot of questions.
My name is Danette and I am 45 years old - Was just diagnosed with stage 1 breast cancer, hormone positive in my left breast February 2012. I had my mastectomy March 14th and am starting my radiation in about 1 week. - Due to family history - mother at age 49 and paternal grandmother in 30's had breast and uterine cancer - I did the genetic blood test - which I praise God that it came back negative because otherwise my treatment would have been bilateral mastectomies with bilateral oophorectomies.
I started Tamoxifen this tuesday and I feel like half of my brain cells have leaked out of my head - has anyone else had a lightheaded - can't remember crap feeling?! Also every time I step on a doctor's scale which seems to be every 2 days lately the weight is up by 2 pounds....not the same, not less, but up, up, up!!!! - I'm trying to stay hydrated and not eat anything I want to like I did as comfort when I was diagnosed, but, I just don't like the trend I am seeing!!
I saw my radiation oncologist for the first time yesterday and he is recommending 6-1/2 weeks of radiation therapy. BUT - they just started a clinical study this week (My doctor is the lead, but it will be country wide) - where if you had a lumpectomy to treat with either 3 or 4-1/2 weeks of increased radiation - the purpose of the study is, I believe, to save patients time and money...I'm all for clinical studies as I work in the medical field as a medical transcriptionist and I know that is how medicine/treatments get improved, but....on the personal side, are my side effects going to increase due to double radiation at one time? - I have to make up my mind by next wednesday when I have my CT for planning my treatment....
Any thoughts on radiation, Tamoxifen and just any general thoughts would be greatly appreciated....
My mother is a 16 year cancer survivor and to this day wishes she would have had a reconstruction (diagnosed at 49 and now 66) - she said dad was always fine with it, but she is the one that has to look in the mirror and she is the one that has to wash her body and she said it is not always pretty so for those of you ladies who have had to have mastectomies and/or decided on reconstruction and to all cancer survivors/current patients - God's blessings and BE GOOD TO YOU!!! - I'm in awe by all of your strength and power!!0 -
Any thoughts on radiation, Tamoxifen and just any general thoughts would be greatly appreciated....
Radiation and Tamoxifen are in my future, so I'm afraid I'm not much help yet. But I send positive energy and healing thoughts your way, and can sense that you are surrounded by a network of people who love you and who've been through this with other women in your family before. Draw on them as much as you can. Kathy0 -
Hi Netter 43.
I'm with you about that Tamoxifen. I didn't like it either. Tamoxifen also slows down your metabolism. So it does tend to make it harder to lose weight. Instead of eating comfort foods I boil up a whole bunch of vegetables and eat them with different things to make the taste less boring. (For supper tonight I boiled cauliflower and sprinkled with a bit of goats cheese and sun dried tomatoes. And that's all I ate. For lunch I got a bag of frozen raspberries and baked them in a very thin one layer pie shell and put a dollop of zero fat vanilla yogurt on top. It tasted sinful but was very low calorie. I eat vegetables constantly and try to make them not boring. They are good for us breast cancer patients and it helps you lose weight. Letrozole tends to make some people lose weight and it is supposedly a more effective drug than Tamoxifen. However you have to be post menopause to take it.
About the double radiation...that's interesting. I did get some double doses at the end of my 30 days and they gave them to me about 8 hours apart. I know that my father ended up getting a sarcoma from radiation so, personally, I don't think I'd want to be a guinea pig on that trial. The prostate cancer he had didn't kill him but the sarcoma from the radiation did. Go with your gut feeling. Always! The radiation treatments as they are now have been proven to be as successful as having a mastectomy.
I ended up having radiation and then having a mastectomy 10 years later when the cancer came back. What they forgot to tell me is that if you have had previous radiation you cannot get an implant. The implant will ride up under the scar and make the boob way higher than your other, sometimes. You can only do a trans flap reconstruction if you have had radiation on that side. Had I known that, I would have chosen the mastectomy and the implant at the same time rather than the radiation and then now being stuck that I cannot have an implant. I watched the Trans Flap Surgery on tube and I just about threw up so that answered my question about getting a TransFlap. I have one boob gone and it does not affect my popularity.0 -
Thanks Gorger for the info - I still have not made up my mind and really hope to get ahold of one of the nurses today - being the study is so new, I don't know if they have even started treating anyone with the extra strong doses of radiation - I do know that they said that is the way Canada supposedly does their radiation. I don't think I would be as worried if it were on the right side, but the fact that it is over my heart concerns me a little bit as well.
All my best to you and to all of the ladies out there fighting the fight!!! - 0
