Tamoxifen for gals who have not had chemo
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2tiger...
no..it has not arrived yet..i ordered it thru the mail...
what am i too expect? will i want to continue taking tamox after this?
hugs..kosh
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Hi folks. My med onc is supportive of the test to see my metabolic rate for Tamox. It is not standard of care and he doubts insurance will cover it, but he will give me reputable labs to use. Cost is only about $300 or so out of pocket.
He did mention that one of the SE's is blood clotting in the legs, which is a maternal trait for me. So there is what he calls, a FACTOR 5 blood test to see if I have the genetic makeup for blood clotting - again not STandard of Care. But this one clearly seems more significant than the other. Not sure on cost. He thinks that the worst case scenario would be I would need to take a baby aspirin EVERY day too.
I have anxiety about the SE's, yes for certain. I finish rads the day after T-giving, go on vacation and plan to start when I return around the 20th - I think it best I give everyone one last Christmas present and start on the 26th - hehe.
What has others experience been with weight gain? PS wanted me to be aware of it so I wasn't shocked.
Thanks all!!! Oh - I am 38, pre-meopausal, so Tamox is pretty much my only option.
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Kosh
An ER MD friend of mine suggested the book with emphasis on the Tamox. chapter because I was trying to make a take it/don't take it decision. The chapter contains concise, verified studies with regard to adverse reactions as well as side effects. However, as stated over and over in these discussion boards, the Tamox. decision has be individualized.
hugs to you too
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2Tiger...
Ru taking the tamox?
As for me....my rads onc told me it would be of little benefit to me cause my tumor was sooo small..but my med onc suggested that i take it...
i dunno...
I felt like I had to take something...maybe control some of this situation....it is such a tough decision....I hate taking it...really I do.
Kosh
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Wndalina- I am 32 and I started taking Tamox almost a month ago. I have not had any SE's really . I take mine before bed and I think this approach really helps. I have heard that blood clots and Tamox can be an issue for some people, so it is good your onc is checking into that for you. My onc had also mentioned baby aspirin. He did tell me that the blood clot risk is about equal to that of a person taking birth control pills and I took those for 10 years and never had issue in that area.
Koshka1- My tumor was also very small and my medical onc. suggested Tamox. The medical onc is really the one with the expertise in that area, not the rad onc. I started radiation last Thursday.
Christina
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Kosh
I had a 6 week reprieve to decide on Tamox. after a HORRENDOUS adverse reaction to Arimidex. I researched and soul searched during that regrouping period and informed my med. onc. last week that I am not going to take Tamox. For me, the risks outweigh the benefits. I am 60 yrs old. My tumor was 3mm in size!
2008, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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My surgery was on 23 June and I finished rads on 23 September (come to think of it I was diagnosed on 23 May?!?). I live in the UK and we have National Health which is free but is somewhat basic. I was thinking of having an MRI done privately as it would not be on offer here, just mammogram on 13 January 2009. Does anyone know what is optimum time for a first check up (if money was no object).
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I've been on Tamox since Sept. 10 and had hot flashes for about a month. Now I'm fine, no more se's----thank goodness! Lets hope it continues! Also, I decided to continue on 10mg in morning and 10mg at night instead of 20mg at once.
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Just an observation............Has anyone noticed how few HER2 positive tumors there are on these discussion boards?
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2tiger4, I haven't noticed that but have noticed that there is a HER+ forum on this site.
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2NewBoobs, that's what my med onc is having me do with the tamoxifen. Been on it two weeks & am doing fine. I already had hot flashes, so haven't really noticed any difference! LOL
NenaH, how are you?
I haven't posted here in a bit. I am osteopenic so I really didn't want to do the AI's & my med onc wouldn't let me. But I can stop my fosamax while on the tamoxifen & maybe my cholesterol med, too, because tamoxifen lowers cholesterol. So, all that is good.
Wndalina, I am going to ask about the metabolism test, too. I don't know what I'd do if I found out I was a lousy metabolizer, but I'd rather know than not, I think.
Kathi
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Wndalina,
I'm 39, Dx at 38, am on lupron injections(to shut down ovaries), and Femara. So there are other options than Tamoxifen...my onc. chose this option as i've had superficial blood clots before. although now my new onc may be switching me to tamoxifen.....we'll see.
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Kathi, I am well thank you. Until about couple of days ago I was so well I kept forgetting I was ill. For the last two days and for no apparent reason (as far as I can tell) I have strongish aches and pains in the general treatment area (right breast, ribs and under arm). I was thinking perhaps it is to do with the weather change. Anyone else had something like that after feeling well for a while.
It is so good that Tamoxifen is going to help with your osteopenia and cholesterol. Unfortunatelly it is not good for bones if you are pre-menopausal so I am worried. I am still on a quarter dose and nothing has changes since I last posted about that.
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NenaH
Than you for starting this thread. It helps to be able to narrow down the scope of things.
I'll check out the HER2+ forum.
I have periodic aches and pains in the areas that you mentioned. Are you familiar with "seromas"?
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Hey Sheltering/Christina,
Thanks for the boost! It is nice to know that I am not the only one out there.... My onc when I asked him "would you tell your sister to take it"...told me yes..and that it would help proctect my other breast too,..sooo here I am.
How large was your tumor... I had 2 tiny buggers..4mm and 1mm beside it called a satellite tumor..
Hugs and be strong!
Kosh
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Koshka1- My tumor after biopsy was .8mm per surgery path report. I was scared about taking the tamox after hearing about all the SE's, but so far so good. Once the radiation is over (7 down as of today) taking it will continue to make me feel like I'm doing something. Best of luck to you! May we all never have to travel this path again!!
Christina
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Shelteringtree,
Hugs..and hang in there with the radiation treatment...Mine was not sooo bad.. I did a short treatment...16 rads and 4 boosts... In Canada they do a stronger dose/shorter treatment type of protocol. I managed to only get a square tan on my chest and some tiredness.
And, I hear you with regards to feeling like you are doing something... I was so darn scared when I took the tamoxifin pills that I nearly made myself sick. But not doing something is almost a scarrier feeling. If you have a good doc/gyno/onc they will check you regularly to make sure that nothing funny is going on..so I am taking some faith in that....
Also, the side effects are not soo bad.. I had hot flashes at first but they seemed to have leveled off. I sleep with a fan in my bedroom even though we are heading into winter here.....what can I say - I don't want anything to interefere with my sleep. I am also having irregular periods, and that just started 2 months ago..and I have been on Tamoxifin since May. We shall see what happens in the next couple of months....
How did you find your tumor? I notice that you are only 32 and probably did not start regular mammogram screening....As for me...well...I am 39,,diagnosed at 38..and I asked for a mammo cause a couple of my clients were diagnosed....they said no..said no symptoms, too young...after I asked about 4x they finally sent me...lo and behold..they found calcifications, some dcis and 4mm and 1mm idc...they told me..."you would not have felt that for a couple of years"...... well,,, I am glad it was caught early but it still sucks to have found anything....
HUGS and be strong....
Kosh
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Wow, Kosh how clever of you to insist on screening. My tumour, although much bigger than yours, was also not palpable and I had to convince doctors to take me seriously. Luckily they did. In the UK they do not start screening until 50 (although I have heard that is about to change). Having found it so early you can sleep easier (figuratively speaking) as there is a smaller chance it has spread.
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Koshka1- Thanks for the encouragement with the rads. I will have 34 total. I hope I do well. I'm very olive skinned and hope that will keep me from burning.
I found my tumor by accident. I had on a camisole top that twisted; when I went to adjust it I felt a little pea sized lump. It was right in the area where the underwire of my bra was, so not deep in the breast tissue at all. My regular doctor examined it three times in a 3 month period and did nothing. I went to get a second opinion and was sent for a mammo. The mammo showed nothing, but ultrasound did. A core needle biopsy confirmed cancer. I was actually told by my med. onc that I have wimpy old lady cancer. The pathology was reviewed by 3 different hospitals because it was so well differentiated and low grade they wanted to make sure. All three agreed...invasive tubular carcinoma. I feel lucky in that respect. I just hope and pray and hope and pray that this is my last round with cancer. It sucks big time!
I hope you continue to do well!!!
Christina
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Hi 3Boys! I will bring your situation up as well. I meet with the med onc soon, supposed to call him to touch base this week. He is a gem! Did you go for regular mammograms or because you found something? I have been going since I turned 30 since my mom had BC. Found it just before I turned 38.
I am really pushing for early detection - its good to hear women's pro-active natures in pushing for at least a base line. All of my friends did base lines when I went for my first - it was an event! At least they have something for comparison down the road - no fam history for them.
Still anxious bout Tamox. Guess I can always start it and back down if SE's are too traumatic for me or others! :-)
I am 20 rads down - 14 to go - I celebrated half way this week with a cocktail after treatment on the way home!
Hugs!
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Anyone knows anything about food and Tamoxifen. For example I read somewhere that grapefruit is interfering with what Tamoxifene is meant to do. I also heard that pomegranate may be similar (I saw this on the internet while eating pomegranate).
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Stefie & CodyLynn,
I too had severe mood & cognitive side-effects from Tamoxifen. Apparently it's not the most common side effect, but for me, it was very debilitating. I was very depressed (and antidepressants didn't seem to help), and couldn't think/focus or come up with the words I needed. Had to take a medical leave of absence from my work until we figured out what was going on.
In retrospect, I also had some knee pain...but if that was all, I would have been happy to continue on the Tamoxifen.
Eight months after starting, I stopped taking Tamoxifen, and two or three weeks later I was feeling better. I'm on Evista now (even though I still qualify as pre-menopausal) and have returned to work...
Even though the cognitive/mood side-effects are believed to be less common, be aware that they are possible.
LisaAlissa
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Has anyone had problems with vaginal discharge??? I never had a problem with it before...it started about a month after taking Tamoxifen. Wonder if there's any connection?
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NenaH- Grapefruit and grapefruit juice is known to interfere with many medications. I'm not positive about Tamox though and I am not sure about pomegranate either. It's a good question to ask your onc though.
2NewBoobs- Yes, Tamox can cause an increase or change in vaginal discharge.
Christina
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Christina,
Thanks!! Guess I need to find what's best for it!
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Christina, maybe doctors in the USA are responsive to those kind of questions but my doctor in the UK didn't even know T. interferes with endometrium let alone whether eating pomegranate is OK. I could ask this on the food or alternative forums but find that there is not as much activity on them so fewer people share their knowledge. 2NebBoobs lack of estrogen affects lining of uterus and vagina and uretra so apart from disharge we can expect vaginal atrophy and UTIs. Nice. Earlier in the thread there was discussion on Ovestin cream which can help with this. Jury is out though whether it is a good idea because it is estrogen based (albeit estriol which is meant to be the 'good estrogen'). Who knows.
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2NewBoobs- I just finished reading an article on this site about Tamox and vaginal discharge. The experts say that a watery discharge is normal and if bothersome to wear a pantiliner. They did however say that a bloody discharge is not normal. HTH
Christina
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NenaH- I'm very sorry that your doctors are not helpful with information. That must be very frustrating. I did some checking for you about the two juices. From what I could find the issue with Tamox and grapefruit juice is that it can magnify menopause side effects such as hot flashes. As far as pomegranate juice goes from what I could find it seems that drinking it while taking certain meds is unclear as to whether it causes a problem. I could not find any articles that specifically said not to drink it while taking Tamox. I see my onc next week. If I think of it I will ask him. HTH
Christina
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Thank you Christina, looking for information on pomegranates (sorry to go on but I do love them and they are in season but didn't want to jeopardise effectiveness of Tamoxifen) I came across the following abstact which may be of interest
. Selenium May Prevent Breast Cancer Cells from Developing Resistance to Tamoxifen
ABSTRACT: Tamoxifen has efficacy as a breast cancer therapy and chemoprevention agent. However, toxicity and resistance to tamoxifen limit its clinical application. There is an urgent need to develop compounds that may be combined with tamoxifen to improve efficacy and overcome toxicity and resistance. We showed previously that the organoselenium compound methylseleninic acid (MSA) increased the growth-inhibitory effect of tamoxifen and reversed tamoxifen resistance in breast cancer cells. In this study, we examined the mechanism for induction of apoptosis by MSA combined with tamoxifen in tamoxifen-sensitive and tamoxifen-resistant breast cancer cells.
4-hydroxytamoxifen (TAM; 10(-7) mol/L) alone resulted in cell cycle arrest but no apoptosis, whereas MSA alone (10 mumol/L) induced apoptosis in tamoxifen-sensitive cells. Combination of MSA with TAM resulted in a synergistic apoptosis in both tamoxifen-sensitive and tamoxifen-resistant breast cancer cells compared with either agent alone.
MSA and MSA combined with TAM induced apoptosis through the intrinsic, mitochondrial apoptotic pathway. MSA induced a sequential activation of caspase-9 and then caspase-8. These results indicate that the growth inhibition synergy and reversal of tamoxifen resistance by combination of selenium with tamoxifen occurs via a tamoxifen-induced cell cycle arrest, allowing more cells to enter the intrinsic apoptotic pathway elicited by selenium.
Li Z, et al. Methylseleninic acid synergizes with tamoxifen to induce caspase-mediated apoptosis in breast cancer cells. Mol Cancer Ther. 2008;7(9):3056-63.
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OMG I have come across studies which indicate that there is some evidence that pomegranate, far from being detrimental can be used as alternative treatment for cancer (prostate primarily but since that cancer is also hormonally linked to breast cancer as well). This is the link http://www.supportiveoncology.net/journal/articles/0303238.pdf. Still don't know whether it interferes with Tamoxifen but at least it is not helping the cancer.0
