Let's start a group!
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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 -
Oh, I hear what you are saying. In Victoria, Canada, they are on the cutting edge of cancer treatment. They have an "Inspire the World" Cancer Clinic there. That's likely what they are likely copying. If that's the case, you are fine. I did hear something about them doing that. They are actually on the leading edge. That's where I went for my treatments.
The cat scan that they do before you start the radiation maps out where your heart is so they miss it when they do the radiation.
The radiation only hit 5% of my heart, apparently. They are better at it now then when I had it done.
I got very weak and tired from the radiation. It was helped by eating protein. Afterwards I took a lot of vitamin C. (They say not to take Vitamin C during the treatments as it stops the effect of the radiation!) That's what they told me 10 years ago, anyway. Things could have changed.
The fairer your skin, the more upset your skin will be from the treatment. Find a bra that is simply cotton, I used Elita underwear with no seams etc. It has to be cotton or rayon otherwise your skin will stick to the bra.
So, if you can get throughout the treatments faster, go for it!
If you think about the long term...that the radiation will help you extend your life, and not the short term scary aspect of it, you will get through it fine.
I am 12 years post radiation and I still have no metastases even though my cancer came back again in the same breast. The reason it came back is that the surgeon didn't give me clear margins during the surgery. The radiation stopped the cancer for 10 years before it came back.
I started this blog so that others wouldn't be so frightened. When I was first diagnosed I thought I was going to die right away. and....Here I am 12 years later!
Losing weight and exercising is something that we do have control over. I have 10 pounds to go and I decided this morning that I am going to reach my goal. The less fat we have, the less estrogen can be stored in that fat. During treatments we often feel powerless. Taking control of your eating is powerful. Eating 3 heaping platefuls of leafy greens and vegetables a day and an apple leaves no room for anything else. My trick is to eat 10 (1/2cup) servings of fruits and veggies aday. Then I can have my treat. I never want a treat because I am too full. So I never eat anything bad for me. I am still 10 pounds overweight, though. I think I will add more protein for awhile.
Did you know that moving your bowels a couple times of day reduces the estrogen in your system? It is actually eliminated in your bowels so says my cancer dietitian.0 -
Hey everyone!'
Just wanted to chime in on the radiation and tamoxifen thread. I had my radiation 5 days a week for 7 weeks and I had to drive 50 minutes to the cancer clinic. I was so afraid that I'd be too tired to handle the daily drive with my two kids in tow. But for me, I didn't get tired and it all went remarkably smoothly. I am a fair skinned, blue eyed Norwegian girl, but my skin barely changed color throughout the entire radiation process. I had heard horror stories about the radiation, and I remember thinking, "can it really be worse than the chemo?" It wasn't. For me it was no big deal, so you just never know...
I am currently taking tamoxifen, and have no problems with as yet. I get the occasional hot flash, but not much else. I did gain weight during the whole process, but I can't pin it on tamoxifen entirely. I've lost ten pounds so far and I'm working out much harder than I did pre cancer. I want to get my body fat percentage down...that is my main goal.
Good luck to all of you still in treatment, there is a light at the end of the tunnel.
Hugs to all,
Rhonda0 -
I am also very curious of the connection of your eyes and tamoxifen. My eyes flooded with water and stayed flooded the first four days I took the tamoxifen 20 mg. Then they stopped it for a month and restarted it at 10mg for the last month. My eyes are extremely dry when I am on it. (I am off it for the next month because I am having another major surgery).
Tap0 -
Hi Tap
To answer your question...If you read the side effects of Tamoxifen you can see that it can cause cataracts. I developed cataracts, likely from the Tamoxifen, and that in turn caused Angle Closure Glaucoma. This caused me to nearly go blind. The trick is to get your eyes checked by an ophthalmologist frequently when you are on that drug. Now because of that - I had to have( laser) bilateral iridotomies so that I would not go blind. My vision has diminished and I am not a happy. I have to use eye drops about 10 times a day because of the dryness. I also have lots of 'floaters'.
Moral of the story is that I am alive and I am not blind. I think it's good to take the drugs but really do keep watch on your eyes.
Taxmoxifen can also cause blood clots so don't sit with your legs crossed while you are on the drug.
Aspirin helps prevent blood clots. I take a baby aspirin a day but even aspirin has drug side effects. Always read the package.
There are side effects to all of these drugs but what's the alternative?0 -
Hi! I am new to the group and to MFP, Thank you for adding me! I had a lumpectomy 7-5 2009. I had just finished up 8 surgeries on my arm and wrist for kienbocks disease when they found the lump. I couldn't do any treatments because of all the surgeries on my arm. They said radiation would blow up my arm. I had been doing ok until my last test in august, they said they would wait until 6 months and maybe to a biopsy then. Same breast. I go back for my recheck Feb26, My mom also went through it, so far shes been cancer free for 10 years. I couldnt take any of the cancer meds because of side effects and just this past fathers day i had a heart attack, all the time i was worried about strokes, the stupid heart got me. Anyway I am glad I can come here an read ppl posts and ask questions. Thanks again for adding me 0
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Is anyone in contact with Weemuse (Kathy) she deactivated her account. I hope she is ok0
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Hi everyone,
first time on mfp and I have just recently been diagnosed with breast cancer (IDC). I am awaiting partial mastectomy and sentinel node diagosis in late March. Have not told my family outside of my husband yet until I can get the final diagnosis and treatment plan . I work full time and have 4 older children in their 20's.
I am 55 years old, 5ft 7" and weigh 194lbs
I excercise regularly 5-6 times a week in fitness classes such as body pump and body combat.
I would like to lose 25lbs by mid april as my husband and I are going away for two weeks before I start some kind of treatment.0 -
Welcome to our group!
You are very brave indeed to keep things hush-hush. When I look back I wish I hadn't told anyone either - as the phone calls didn't end; a parade of well wishers unknowingly added additional strain with their repeated requests to make me tell the same old story, over and over again until I had no energy to speak about it anymore; and the minute I stopped thinking about it, another call would come in, asking me to repeat over, that which I just forgot, for a moment. And with every loaded questions, an urge came to almost argue my points. "No, I don't walk crooked with one breast removed." Or, "What do I feel about going bald?... is that what you just asked me?" The calls kept coming, one after another, mainly asking, "are you having a mastectomy?" as if that really mattered to them. For me it seemed that there was never was a genuine caring, "Can I help you", or "Would you like me to come and walk your dog?" And, as the well wishers kept calling, I found no time to make the crucial and critical decisions that arrived with so very little time to process.
Good luck with your imminent surgery. You will survive and thrive. Everyone has a difference experience. Bravo to you for knowing the best thing to do for yourself and for you this happens to be - keeping things private. Some people get tons of energy and help from sharing with others, my personal story is - I did not. Always go with your gut feeling. It's always seems to be right. You can always tell them later but you can never take your words back...0 -
Greetings!!
I was diagnosed with two types of cancer in my breast in 2011, one a traditional ILBC and the other a very rare one. I also tested positive for the BRCA2 gene so I am genetically predisposed to BC and the second type has a 50% re-occurrence rate. I had chemo and bilateral mastectomies with lymph dissection on one side.I choose not to have reconstruction given the uncertainty of the safety of implants and my predisposition to cancer. I never want to put myself or my family through that ordeal again. I need to get healthy and stay healthy. I need to lose 84 pounds.
I am thrilled to find others on the same journey to share struggles with.
Bright Blessings.
Susan0 -
Hello Rabbit,
I finished treatment with surgery (bilateral mast w/lymph on one side) in August of 2011 and I am just starting to feel "normal" again. It does get better, slowly but surely. Even now I have bad days, mostly the grey rainy/snowy ones when everything aches and I feel sorry for myself, but then I remember the April I was diagnosed. I had two cancers in my breast. One was a rare one with a less then 40% cure rate. I could be dead in 6 months they told me. I remembered seeing a crocus and bursting out crying in my car thinking I would never see spring flowers ever again. Today I am thankful for every minute, every day with my family, every rainbow, all of it, the good and the bad.
I am sending you a big hug and lots of well wishes.
Susan0
