Bottle 'o Tamoxifen

MomOfTwins98

Thank you - yup, my plan starting tomorrow is to try and slowly get back into my exercise routine. I have always gotten up at 4am, worked out for one hour, then showered and started the day to have my children up by 5:40, lunches made, breakfast on table and off we go at 7am. My husband works out of state so has to leave really early too. As my radiation just ended and there is NO WAY this body can put on a bra, I am going to have to go slow, no bouncing...even if just marching in place. I do mostly Leslie Sansone walk at home so I'll do what I can. Let's hope it goes well!! When my breast and skin heal, and I can put a bra back on, then we'll see what comes next.

Thanks for all your support - I agree with Suzanne50..exercise just makes me feel better and I'm tired of not feeling better. Good night all

superius

I'm glad I am NOT the only one with the chills. seriously, what's with that. By the time I drink something hot? Hot Flashes!

& all the talks about different diets! I mainly just eating more green & whole grains, brown rice instead of white (that's big change for parents), sweet potato, berries... & it seems we've been eating lots of mushrooms - shitaki, porchini, all different kinds my mom finds at the Asian market. Less meat, & we started going to the middle-eastern market, where the meat are certified kosher & Halal, no hormone/ GMO (they sell lots of EU import).

Trvler

Mom: I am so sorry you are having a hard time. It sounds like you are a supermom and it must be so hard coping with not being able to do as much. I am not a supermom (although I try) but I know working out has become so much more important to me. I wear two bras to work out now, one regular and one sports bra over it. The bouncing is very uncomfortable for me even though my breasts are only a B.

I am wondering if the hot flashes from Tamoxifen last the entire time you are on it or just in the beginning? Anyone have any thoughts? I am guessing most on this thread are in the early stages. I would love to hear from anyone who has been on hormone blockers for a long time.

MomOfTwins98

Good Morning Superius

My mom bought me a heated throw for Chanukah. I have not used it and thought to return it but, last night, plugged it in under my covers in bed - it worked GREAT! of course, I woke up about an hour later to use the bathroom but was warm and able to turn it off (was worried about having it on all night) - Can you try that? I did get up at 4am and did a very modified workout but it is a start. Put my pedometer back on and trying so hard to get back on track. I am also trying acupuncture for the first time through our cancer center - it is 10 sessions (every Thursday) at no charge. I am a bit skeptical and nervous but, figure it is worth a shot - I do not eat meat..not a vegetarian but dont really care for it so thats not a problem. I have always been a healthy eater but slip every now and then. Plus, my husband is a true carnivore so can be tough. I tend to make one meal for my family and another for me but, thats okay. I grew up keeping strictly kosher (not now) so have always only had kosher meat so hear you. Happy new Year

MomOfTwins98

Hi

Thanks! You made me smile - not a supermom but I try:-) haha

I have read and heard that the side effects do get better with time - hope so for you. The two bras sounds like a great idea but I am so raw and have open sores so no bra is touching this body at all - it will heal. As my grandma always told me, this too shall pass.

ClaireFraser

Trvler,

My doctor wants me to increase my water intake, plus up my Vitamin D regime, because I am deficient. I am going to try and start exercising, but my upcoming shoulder surgery will impede that (I have a nice partial rotator cuff tear, and bursitis/arthritis in my right shoulder). When I turned 40 and they asked me if I wanted the "extended warranty" on my body, I should have taken it, lol.

God bless you all,
Claire (happily married to Jamie Fraser)

lala1

I'm one of the ones who found a great deal of benefit from yoga. Before BC I had never exercised at all much less something as "stupid" as yoga. I wasn't overweight per se but felt I could stand to lose 10 pounds. So in the year before BC I did Weight Watchers and lost 20 pounds then voila! BC! Once I got through surgeries, I found a cancer program at the gym. They helped me with learning to exercise properly and taught me how to do yoga. Now I go to the gym every day and do yoga as often as I can which is usually 2-3 times a week. Some days I just go to the pool and float around using my arms so I keep my ROM good. This same program showed me how much myofascial release therapy can help with pain and ROM and even the benefits of acupuncture. I went to visit my family for Christmas for a week and didn't exercise or go to yoga and could really tell a difference by the time I got back. I wish doctors prescribed yoga/exercise for BC patients. I'm also one of those slightly anxious sorts and can really go to dark places when I have pains and yoga has helped tremendously with that as well.

Now as to dieting (which I am not good at at all!) I'm reading all this info on Wheat Belly diet and such. What can a person do who hates (really hates) to cook? I don't eat alot but I also don't eat the best stuff. I travel alot and find that I'm usually somewhere in my car when it's time to eat. What are your suggestions if a restaurant (or fast food place) is your only choice for a meal? I usually like a bowl of oatmeal or an egg for breakfast and a cup of yogurt with some fruit or nuts for dinner. Lunch is my issue.

Trvler

Lala: I am interested in hearing more about your yoga. I have been doing jazzercise for 3 years now and I stepped up my workouts a lot when I was diagnosed. Working out got me through treatment but because I have scoliosis, my shoulder is very tight. Adding on surgery and radiation, I think I need a lot more stretching than Jazzercise is giving me. I am doing physical therapy now.

Claire: My jazzercise instructor just had that same surgery two weeks ago. I understand the recovery can take a while.

When I first had my port installed, I got a blood clot in my heart. I was injecting blood thinners but I asked the heart doctor if I was ok to work out. He said yes. But my MO told me to walk. Number one. I hate walking. And why would you tell someone to lower their workouts? It really made me mad. If the heart doctor said it was ok, why on earth would she advise me not to? I just got the feeling that was her canned speech to everyone, to walk, because let's face it. Most people don't exercise. So telling someone who already does to ease off it for no good reason just made no sense to me.

lala1

Trvler--I do Hatha yoga for the most part but now I'm at a gym that is very limited in the classes offered. They call it yoga stretch and that's pretty much what it is. I'm 52 and one of the youngest in my class but for me it's exactly what I need. I get on the treadmill for cardio and also lift weights but this stretch class really helps with my shoulder and rib pain that I got after mx. One of the things that a lot of us develop is scar tissue where our drains were. This builds up along the rib cage. I found a girl who does myofascial release therapy which, combined with yoga, gave me a great deal of relief. She's become so interested in my case that she's learned to do cupping which she does for a few minutes each visit. I have a lumpy area right where my underwire would rest. All my docs just shrug and say it's part of the recon and I'll always have it. My girl's cupping has actually flattened it a bit. It gets a little painful when wearing an underwire (which I can't since mx) but since she has improved it, I can wear an underwire for a few hours at a time. I live in a small town now so my resources are somewhat limited but in the summer I go to a larger city for 3 months and that's where I've found most of my help like massage and good yoga classes. If you can find these resources, they will help alot with recovery. And physical therapy was the biggest help in the beginning. I just think it has to be someone who knows how to work with BC patients.

Trvler

That myofascial release therapy sounds interesting. I have firmness at the bottom of my breasts. Maybe I should look into that, too?

ORgal

lala1, I'm finding restaurants are starting to offer foods that are low carb. For instance, my favorite sandwich shop is Jimmy John's, and you can order an unwich instead of a sandwich. That just means it is wrapped in lettuce instead of put onto bread. I'm told some other places do this too, I think it was Red Robin. I have a coworker who just orders a hamburger and gets a plastic fork, he removes the bread and eats it with a fork. Another option is a salad with chicken on it.

lala1

Trvler---I went in today to get my monthly waxing done (armpits are difficult to shave with node removal so I just wax every once in a while) and while there started talking with the girl about how her child was doing who contracted an infection in the hospital and had to have drains put into his legs. He's mostly recovered now but this got us talking about drains. I mentioned how much I loved the myofascial release massage for the scar tissue from the drains and that her child might like it. Turns out she's trained in it! I had no idea. I'm in a small town and just figured no one knew how to do it. So I'm going to give her a try. She said it would really help with my lumpy scars so might help with your firmness.

ORgal--thanks for the suggestions. I'm a huge bread fan so this will be difficult for me! And I figured salads wouldn't be good cause of the fattening dressing but I guess that's still better than bread.

superius

I also have that firmness... & noticed depend on what undergarment I wear & for how long, my skin got tingles. my Surgeon said it's the scar tissue breaking up.

Suzanne50

I say that often..."this too shall pass". It has helped me get through some tough times knowing that there are better days ahead. I have been getting night sweats for quite awhile (before BC) but they got intense during chemo. I would wake up 4x a night drenched. Very uncomfortable. They have backed off since chemo but now comes tamoxifen. I think that perhaps they are slightly worse again but nothing like chemo. So hard to say if it is the tamoxifen or just my body. It's only been a week.Otherwise all seems quite normal.

I loved Jazzercise at one point in my life. I went several times/week and then it moved to another location which was too far for me to travel to comfortably. Now I am a runner (ran NYC marathon in November for first time) and lately been doing some Beachbody dvds in the morning before work that are quite effective. I am addicted to exercise at some level but not a crazy person that is constantly in motion. I can be quite lazy in the evening - without any guilt.

I can't wait for the day when most of this is behind me. Hopefully soon! I have to get my tissue expander swapped out. That should be in a few months. I just want to be healthy, well, energetic and alive! 2015 really kicked my arse.

DeeRatz

I have started wearing a sweat wicking shirt from Lululemon at night. Any sort of cool max material would work. I find that I am not near as cold at night as the fabric never feels wet. I don't get the chills from being in a soaking wet tank top. It has helped.

Accupunture has definitely made a difference for me as well. I have had 6 treatments and have noticed a big improvement. I almost don't notice my hot flashes during the day. I do have them but they are not nearly as intense as they were.

solfeo

lala1 - ORgal's suggestions are great. Generally, the less complicated the food the healthier it's going to be. Lean protein and non-starchy vegetables, without sauces, are usually your best bet. You might get trace amounts of offending substances but unless you are very sensitive, one meal here and there isn't going to hurt you. Most restaurants will substitute steamed vegetables or salad for potatoes. If you have to splurge, do it on something that won't affect your blood sugar. A little ranch dressing won't kill you because it's low carb, but that's not something you want to eat at home because of the additives (you could make it yourself if you eat dairy). Do not, under any circumstances, splurge on cake! LOL

For a quick grab and go when I don't feel like cooking or I'm in a hurry: almond butter, a hard boiled egg, with raw broccoli and other vegetables to dip in the almond butter. I always include broccoli because it's good for BC and it might enhance the effectiveness of tamoxifen. This also doesn't require refrigeration as long as you don't leave it in the blazing sun and you eat the egg the same day. Nuts and seeds at any time are good and easy, preferably raw.

I just happen to have a picture that I took for my mom to show her I was eating healthy, and it looks pretty tasty to me. There are a lot of nutrients on that plate and it only took a minute to throw together. There is enough fat in the egg and the almond butter to make it satisfying to the appetite.

solfeo

I have another tip for anyone trying to eat more organics but not loving the cost of it. We live in a very high cost food area to begin with (over $9 for a non-organic cauliflower anyone?) and with the amount of extra vegetables we have been buying since we have been eating clean, it would break us if we had to pay grocery store prices. So we joined an organic CSA, which stands for Community Supported Agriculture. Basically you purchase a share of the crops from a local organic farm and you get a big box of organic vegetables every week. We pay $32/week for more vegetables than we can eat sometimes as a family of 3. We often have to share with the neighbors. If you are a single person or couple you can split a membership with a friend or two.

We get a lot of kale and other greens, a blend of baby salad greens, beets and carrots, herbs like cilantro, basil and parsley, radishes, organic citrus fruit. It would probably cost at least $60/week for a comparable amount of of organic produce from the grocery store. You get whatever the farm is growing at the time, which means you never know exactly what to expect, but we see that as a plus. Broadens your nutritional horizons and inspires more creativity in cooking. You're also supporting local agriculture and conserving resources.

rleepac

I've been on Tamoxifen for 7 weeks and just in the past week my hot flashes are getting worse. Well, not worse...just more frequent. I now get flashes every hour or so where before I was only getting them two or three times a day. It's getting really annoying. Please tell me this gets better?!

canderson333

Hello -

I've been on Tamoxifen for about 7 weeks as well and am finding the hot flashes increasing too. This past week was so bad sleeping I'm drenched in sweat in the night. So I'm making drastic changes in my bed. Here's what I'm trying: bamboo sheets or silk sheets (are cooling), cooling mattress pad (tempurpedic beds I read keep you hot), cooling pillow with gel in it that keeps your head cool, cooling cap on my head or neck that is actually wet, window wide open, minimal covers, silk pj bottoms to absorb leg sweat. The thought of wearing PJ's sounded ridiculous because I thought it would make me too hot. But I find when I'm naked the sweat gets everywhere on the sheets and my legs stick together...it's a terrible feeling. So the silk PJ's are actually cooling and do absorb the sweat. The heat from my husband in the bed isn't so great either but I can't kick him out of the bed. I sent my Oncologist an email and want to ask him about Black Cohosh I hear is good for hot flashes but I'm not sure if it's ok to take with Tamoxifen. This is just my nighttime routine. During the day hot flashes do come on every hour or so it seems like if not more. It is easier to deal with them during the day with a fan at my desk or air conditioning in the car.

DeeRatz

I am wondering if any of you have used essential oils to help with hot flashes? I am so scared about anything that may mimic estrogen or progesterone.

lala1

My MO said no black cohosh or anything like it. The only thing he approved was iCool which fortunately worked for me.

DeeRatz

When you read the iCool info it says you should not take it if you have had breast cancer

solfeo

I also started taking it mid-November, and my hot flashes are ramping up as well. Not so much in intensity, but in frequency. I think we are right on schedule. I have read it takes a couple of months to build up in your system.

I'm 51 and I was on the brink of menopause anyway so I had already gone through most of the process in a gradual way. My last period was two months before I started the tam, and it hasn't come back. I wonder if that is why my hot flashes haven't been too severe. I don't get night sweats.

I am curious about your ages and how close you think you are to natural menopause? I will only be taking tam for 2 years and then I'll be switched to an AI.

Suzanne50

I am 50. I got my last period in July the day after my 50th bday and two weeks before my first chemo. Haven't had a period since. My MO says I probably will not. I was already perimenopausal before BC but I think chemo really put me over the edge. I haven't had hot flashes but have had night sweats.

I have also been told 2 years Tam and then switch to Al.

jbokland

Hello Tamoxifen Sisters!

I have been on my 'Cancer-away' for about 16 months. I still hobble when I stand after sitting for a while. I have found the nightly muscle aches in my thighs are better if I take the pill in the morning ( instead of bedtime).

Claire ( I am a huge Outlander fan, btw!). I too just had some freaking miserable shoulder surgery. A rotator cuff tear and torn ligament as a result of my recon. Surgery. Buggers!

rleepac

I am 43 and I was perimenopausal prior to chemo. My last period was one week before my first chemo (so, a year ago last Feb). My MO predicts that I won't get my periods back. I don't know how or why he thinks that but I've been done with chemo almost 6 months and still no period so maybe he's right? We are going to check my hormone levels at the end of Feb to see if I'm truly menopausal or not.

superius

I will turn 43 end of March, my last period was 2.5 weeks after first Chemo, mid Aug. It was shorter/ lighter than usual, before it was very regular. Last Chemo was end of Sept. My MO thinks it would come back "couple months after chemo", but another mo said it probably won't come back. Started Tamoxifen Nov 1. So far, it's not back. but I noticed some days I have that pressure/ fullness in my tummy, like you would a week before period. I guess it's trying to come back. Guess I still have to wait & see... I don't have night sweat but do have hot flashes.

molliefish

I really, for no good reason at all, can not seem to bring myself to open my mouth and take this little white pill. I'm already into menopause, last period was in July 2013, blood tests confirm the FSH levels are consistent with full blown meno, I have had hot flashes for years so I know what it's all about. My feet hurt in the morning, have for years... the pharmacist told me to take the tablets with food as they can cause nausea. Maybe that is what the issue is. Ooy.

rleepac

I hesitate with it every morning. I've got It in my hand and I pause...but then I take it. I really don't want to. It's a daily struggle!

jbokland

No one WANTS to take Tamoxifen.

But, ( in the words of my MO it may save your life.

I am actually grateful that after that hellish chemo, surgeries and radiation; I only now need to take a small white pill everyday.

I have the SE's, the aches and stiffness, the hot flashes...( but hell, hot flashes were probably on my horizon with or without bc).

BUT... I am alive to bitch about the SEs.

So, I am grateful for the little white pill.