Bottle o Tamoxifen
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Girlfriends, you are all doing so well.
Saw my regular MD to day just to bring her up to speed on everything. She wants me to see my endocrinologist and get my thyroid levels checked. Had thyroid cancer 4 years ago. More appointments. Sigh
Have dentist tomorrow morning. P/T afternoon. Talk about high maintenance. LOL
4th day of walking 4 miles. I HATE EXERCISE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I was naive to think finishing my treatment I would feel 100% but I don't. I feel old, moody, crampy, grumpy, over weight. Oh, that was a pity party for myself.
Just trying to get rid of this black cloud over my head.
Is it cocktail hour somewhere?
Jules
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I was post menopausal when I started Tamoxifen in October and the only se's I've had are some 'warm flashes'...not hot flashes like I got during my menopause. Also some weight gain but not sure if that is from Tamoxifen or from quitting smoking.
Otherwise I actually do feel quite good on it. I take my med after lunch.
I hope y'all find a good time to take the meds and have minimum se's.
I also heard the se's on Tamox come and go, so you may have a se's this month and it may be gone next month...go figure!
Jan
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swanseagirl - I am still trying to figure out what 100% is. If you figure it out, please let me know. Nervously waiting to see my MO on Wed to start Tammy. Have lots of questions for him.
It is cocktail hour - care to join me?
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Beanius - I think the anxiety and sleeplessness go hand in hand, they feed each other. I too started the Tamoxifen gradually, with my oncologist's blessing and I was also very apprehensive about it. I have a friend who got the uterine cancer, we all dread, while on it. I figured I'd try it and see how it went and it's been OK so far. I'm thankful that the office my surgeon and rad oncologist work out of offered a consultation with a naturopathic oncologist as a compliment to the care they gave me. My Naturopath has, in 2 months, got me to feeling better than I did before I got the diagnosis in May. I'm also taking 20mg of Melatonin a day, but it did not affect my sleep one way or the other, but the Glycine has been miraculous. I buy Thorne Laboratories brand, you can get it on the internet. I went from 4 or 5 very interrupted hours a night to a solid 7 and sometimes 8 now that it stays dark longer. A good night's sleep makes me feel like my old self and chases the anxiety away. I don't want this cancer stealing any more of my precious life. I read they give Glycine to mental patients too, well hell, I was about ready to qualify for one at times. Keeping you and all the precious women on this site in my prayers daily.0
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Wow so much to comment about.
I know some women are very anti-soy after bc. I did ask my onco about it and he said that people who are in Asian countries who have a diet filled with soy have actually a LOWER bc rate than we do so I didn't need to worry about it. So I'm not.
Blood clots can definitely be a SE though so if you are concerned at all, get it checked out sooner than later! You don't want to risk the clot moving.
Emotions can be affected by Tamox but we are all in PTSD if you ask me. We have been through so much. At least we are willing to open up and express our concerns and feelings.
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bcincolorado,
I'd like to know more about the soy issue. It is bizarre how the BC medical community is somewhat split on this issue. My surgeon told me to avoid it at all costs. Dr. Susan Love, who wrote the breast "bible" pretty much advocates urging our young teenage girls to ingest a lot of soy, and others are noncommittal. I gave up my favorite protein shake because of soy but then found out that it is not a soy protein shake per se, but rather has soy lecithin as an ingredient, which purportedly is less concerning.
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phxsunshine -I usually get 4 -5 hours of interrupted sleep due to the hot flashes and will be starting tammy this week. The melatonin has not worked a bit for me. Can you tell me more about this Glycine? I would love 7 straight hours of sleep. I can google it too but would like to hear from you
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Surfette: It is funny how so many surgeons have different opinions on showering after surgery, types of surgery they do, to wear a bra or bind up or not...etc...... I was sent to a nutritionist when I was first dx and she said nothing about avoiding soy. Neither did my BS or primary doc or PS. I had to ask my onco about it. I say if you like that shake, have it! life is too short!!!
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Swanseagirl, I understand the funk. I've been there for a few days, I think "Tammy" is bringing me down. I decided today that I was going to go into work and be around people for the day, and that helped. I am just pushing myself to get out, take walks, take care, eat well, etc. I am going to up my fish oil supplement, too. I'm on 1,000, you can go up to 3000 safely. In any case, it's supposed to help with the blues, and a host of other issues, too. I feel better on it. The vitamin D has been a total health revolution for me.
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Thx Chevyboy for the laugh - sure don't want my leg to drop off - but I don't think I have the same puppy as you do. No itching! However, I do have the Fluc... stuff. And I'm keeping it close by just in case.
I'm seeing my endocrinologist tomorrow, will ask him if its anything to worry about. I think if it were a blood clot it would be more painful rather than sore. So, I was wondering if anyone had any experience with them. Anyway,my husband said I probably ran into something and just can't remember. That could very well be as I think I still have some Chemo fog going on.
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Cheers Jo!
This is what I was told......
My surgeon told me to go have a soy latte and enjoy it.
My OBGYN said to avoid soy at all cost.
My rads onc and onc said as my diet is not totally soy (like in Asia) not to worry about eating soy. As my onc said, go have a tofu pad thai dinner.
My nutritionist said I should only consume fresh fruit with a high soy base diet.
All of the above left me very confused. Damned if I do, damned if I do not.
Night sisters zzzzzzzzzzzzzzzzzzzzzzzz
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OK I've had 3 nights of Tam and I've noticed a new side effect: I am peeing throughout the night. Anyone else have this?
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The jury is out on soy, it's like lymphedema and a million other BC issues. The studies show two exactly opposing views. In the next few years, they will probably all agree that phytoestrogens are weak estrogens, and may actually be helpful, not harmful in hormone balancing. Until then, I'm steering pretty clear. Also, there's debate about fermented vs. plain soy, as well as GMO issues.
For another "darned if you do or don't moment"--lymphedema sleeves in those at risk when flying. Literally 1/2 of the articles said DON'T do it, it will precipitate LE. The other said ABSOLUTELY do it to avoid it.
Swanseagirl, my dear, I didn't know you'd had thyroid cancer a bit ago. I'm dreadfully sorry.
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surfette - That is interesting. I pee throughout the night as it is. If that happens to me, I won't notice the difference but will keep that in mind.
Swanseagirl - Sorry to hear about the thyroid cancer - and now having to deal with BC - life is not fair. (((HUGS)))
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ok...heres 1 am i suddently bitchy cus everybody else is a egotistic turd, or am i just a bitch? hopin its a T thing and it will go away soo. it doesnt even pay rent in my heae and yet i keep inviting it in, take off your shoues and here a pillow and blanket P YOUCK P YUCK P YUCK anyone else playing the misery card today i know it is a day-day proposition, BUT! T O D A Y is pink bunnt pajama suit that itches on the inside!0
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Rachel - Thanks for the info on getting tammy even with ooph, I have wondered about that...my fam hx makes me nervous of uterine and ovarian cancers. I'm seeing a specialist in Feb for consultation. Sure hope those hot flashes get better for you.
Jo - I got a total of 10 mg down yesterday and today. I was hot and cold all night (I think due to our thermostat) so not the best sleep, but not the worst. Can't say the pill has been too much trouble so far. So don't worry - I know you're starting Wed or Thurs and it will be okay. I really liked dipping my toe in with 5 mg to see what would happen. Others say just to take the whole pill right away because we need the protection as soon as possible after tx. I will be wishing you the best! I think tomorrow I will take 10 mg first thing and 10 mg at noon, but I'm wishy washy on it all...we'll see what I can handle tomorrow!
Tinkertude - PTSD for sure! What a ride!
Immarybell - So sorry to hear of uncomfortable SEs. What scans are you having done and please keep us posted on your results. Best wishes to you!!!
ECT - I just started (sort of) so I haven't had clots or redness...I second Chevyboy, better get it checked out.
Chabba - thanks for your experience! Sounds like Tammy is sitting okay with you.
Swanseagirl - Good for you to get the exercise in, sorry you hate it! Sounds like you are taking good care of yourself and sure hope you get out from under that black cloud. It was sunny here, but now back to gray...that makes everything seem worse. I hate it when everyone tells you a different thing. That's where I just go with instinct. It's always cocktail hour somewhere! Cheers!!
Jan - I've been trying to figure a good time to take this med. Seems like lunch time would be good. I think it would keep me up at night if I tood it at bedtime, I've noticed a bit of a buzz - energy boost from it, but not much else. Thanks so much for sharing your experience with it.
Phxsunshine - My fam hx includes bc, uterine and ovarian...so Tammy makes me nervous. That's what I've decided to, I bought 30 days worth so try it out and maybe it will be okay. That is such good news about your naturopath. There aren't any naturopaths where I live so I would have to travel. Maybe a good idea. Thanks again for the glycine info. LOL at the mental patient comment - here here!!
Bcincolorado - PTSD here for sure! I'm avoiding soy, but I never ate much before. I do drink a little red wine which is also controversial - I enjoy it.
MHP - I think exercise is such a good way to handle funk. Hope you will feel better soon, yesterday I was bad in a funk, but today is better.
Surfette - I'm like Jo, pee through the night anyway...
Phew - My SIL gave me a post-it note pad that reads, "I meditate. I burn candles. I drink green tea. And still I want to smack someone." It could be mood swings from Tammy...or maybe you have run into a lot of egotistic turds...Wishing you all the best!!!
So I got 10 mg down yesterday and 10 today. Will try to do more tomorrow...I just think it's strange that everyone gets 20 mg no matter your weight. My thoughts and prayers are with all of you and hoping you have good sleep and no SE's!!! ~Beans
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MHP70 & Jo, thanks, no need to be sorry. I will take the hugs:)
I selfishly thought I was done with cancer. Ha, little did I know. When I was dx with bc I did think "give me a break, I've gone through this before" As an old friend told me. I've been dealt these cards because I am strong. Well, I won't share what was said next.
As for the Lymphedema sleeve, I'm actually getting mine fitted this afternoon. I do not have Lymphedema, however, my P/T thought it would be a good idea as I am flying to Vegas next week and then in Feb., flying back to the UK. That's a good 10 hours. She advised I try it out on the short flight and see if it helps or prevents Lymphedema. Something else to worry about. GREAT!
Phew, I've been very emotional since starting the Tamox. And yes, I've been a little bitchy. I can't say whether it's the Tamox or the fact since finishing treatment it's been it bit anti-climatic. All the attention you get whilst being treated and then, nothing. See ya in 3 months. Hang in there.
On a side note, I can see a few eyebrows struggling to break through. Halejula!!!!! (sp)
Later,
Jules
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Well, I bit the bullet, er pill, today and took 1/4 to start. I don't think I'll win any bravery medals at this rate, but feel better about easing onto the train.
Beans - what kind of specialist are you seeing in Feb about uterine cancer side effects? I'm seeing my gyn this week about either a pelvic US or transvaginal US as a baseline (I don't even know if those are the same). I've read a lot of women have ultrasounds done periodically while they are on tamox (and my dentist said she did) to detect any changes.
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Beans - Go to see me MO at 10:15 in the morning. Will let you know what he says.0
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4 days at the 20mg dose and nothing....should I be having side effects yet?
Lori
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I've been on it 2 months and just now starting to get mild se's. Each one of us is diffrent.
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jo1955 ~ I take 3- 500 mg capsules of Glycine, right before I go to bed, by Thorne Research Inc. I purchased the initial bottle from my Naturopath's pharmacy but have purchased a replacement on Amazon and had it here in a few days. The price was the same either place but my Doc is clear across town from me. I'd been taking 20 mg of melatonin for about 6 weeks before the glycine was added and so that's why I credit the glycine with my ability to sleep again. It worked from day 1. There are a bunch of articles about it, but this one is good: http://hubpages.com/hub/L-Glycine-Powder-and-Your-Health
I usually get at least one hot flash during the night, but with the glycine I'm able to nod right off after I cool down instead of staying up for hours "thinking" like before. I also like that I wake clear headed, not fuzzed up and dopey, there are no bad side effects. Good luck to you, I hope this helps you like it has me.
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Beanius ~ My Naturopathic Oncologist will do consults via phone or internet - I asked her for a referral for another of my BCO Buddies and found, unfortunately, there are not very many in the entire USA. Dr Heather Paulson is my Doc and the website for her clinic is: http://www.naturopathicspecialists.com/
My insurance doesn't cover this but I believe her charges are reasonable and like I said, I feel better now than I did before I got my diagnosis ~ and I always considered myself to be in pretty good health. I have got my life back again, each day I spend more time being normal and productive and less time being a recovering cancer patient.
BTW, I am totally with you on the one size fits all with the tmox. Doesn't make any sense to me but I am doing OK on it and for now, that's good enough for me. God bless you real good.
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East Coast Girl - You have a very similar diagnosis to mine. Because of my age (54) they want me on AI instead of Tamox. I too question the 50% jump -an ONCO score of 6 puts me at 5% with an AI and 10% without...hmmm. I am still backpedaling and want to try natural first. I just can't my mind around having to take 50 meds to survive the one they want me on for five years. I am told if the arimidex doesn't work we will work through all of them including tamox if need be....If I can find something to supress the etrogen that I can live with forever that just makes more sense. For all of our rates spike after five years when the treatment stops. I made an appt with a new Onc to run this by next week. I have to do something soon....it all makes my head hurt. I have a feeling if I do this right I can emerge healthier than I was. I can't stand most drugs as I am very sensitive as well.
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phxsunshine - Thanks for the info and the link. At this point, I will do most anything to get a good night's sleep.0
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Ok as far as soy and CYPD26 testing goes this was covered very well in the recent conference. I signed up for e-mail alerts and got the link in an e-mail today:
http://www.breastcancer.org/news_research/ask_expert/12_2010/
Soy is fine and testing is inconclusive and Tamox is best right now with less side effects is what I got out of it.
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But according to that link Dr. Weiss warns against "pharmaceutically concentrated soy products." I don't know if that would include soy in a protein powder.
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Lori - I didn't notice anything after 4 days either. After about 2 or 3 weeks, I noticed my legs felt weird and I would feel sick to my stomach every now and then. My forearms and upper body in general would feel warm and flushed but it was no big deal and no one could tell. Hang in there. A lot of women end up tolerating this drug with no real problems.
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Thank you BC in Colorado! I just signed up on BC.ORG for updates also! That article really answered a lot of questions for me....That's good, because you can google something, & read so many different opinions on the same subject...but that article is a good one.
Annette, my Oncologist wanted me on Femara also...because of my age...but I told her I had read about the SE's, mostly on this forum, and talked to several women, and their SE's were really a problem with them.
Since I had been on Tamoxifen for 2 months, with very minimal SE's, I sort of broke down in tears, & asked if I could just PLEASE stay on Tamoxifen. That's when she gave me the cyp2d6 test...and I WAS a good metabolizer, so it's been 1 year tomorrow!
The advantage of Tamoxifen is that it IS good for your bones, un-like the Al's. A little estrogen is good for you, as long as it is blocked from cancer cells....
You know, you could try anything, for awhile, & leave your options open, to go back to something else.
ECT, how is your leg? I for sure just WISHED my leg would have just dropped off sometimes, when that rash was driving me crazy...I even used to wrap saran wrap around it on top of Bag Balm! And then I cut the toes out of a long sock to put over that....Oh, wait, that was for the rashes I used to get on my arms! I must have resembled a mummy.
Most of MY skin problems were caused by a hormone imbalance, (they said after 5 years of trying zillions of remedies) I guess I could say, going through breast cancer and now the Tamoxifen was easier on me than all those years of wondering what my skin was going to do next.
I found out, the cures they tried, were worse than the actual condition.So good luck to you all....After about 4 months or so, you should see your SE's leveling off....
"you all!" Ha! ( "Y'all"...My dear Mom always used to say that.)
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