Bottle 'o Tamoxifen

mira845

welp, here I am. Going to pick up my bottle after work today. This certainly came as a surprise!

I'm just finishing up rads next week. I called my MO for an appointment telling her nurse that I will be taking a trip to France for two weeks on Nov 8th, (a present from my wonderfully supportive boyfriend!). I didn't know what the MO would say to that. The original plan was to start ovarian suppression and an AI after radiation. So the nurse said the MO wants to start me on tamoxifin right now and I should see her as soon as possible when I get back.

I'm a little bit concerned about starting a new drug and being in Europe. I'm also kind of surprised she wants to have me take tamoxifin since she pointed out studies back when I saw her before surgery that AI's are preferred over tamoxifin for lobular cancer.

IDK, maybe she just wants to see me on something? It's been 7-8 months since I found the stupid lump. Is that a long time? IDK.

I'm just crossing my fingers that I'll be OK on this trip. Any advice on what else to bring in my "cancer pac" to Europe besides a bottle'o tamoxifin and my newly purchased compression sleeve?

Free123

Lovely222, I have taken both Watson and Teva and saw absolutely no difference. Now my pharmacist says she can't get Teva bc they've been bought out or something. But I told her it didn't matter bc I couldn't tell the difference anyway . I know a lot of ladies disagree and can tell a difference in SE's and I was all prepared to have to go into my pharmacist and demand a certain brand, but no… I can't see any difference. The only SE I've had is aching in my hips/butt but I can live with it. Magnesium citrate seems to help. It's worse if I have to sit in a car for a long time. Overall, I've been surprisingly fine!

Mira845, I can't speak to which is better for your particular condition, but I would see about taking baby aspirin or something for the plane flight due to the slight potential for blood clots with Tamoxifen. Have a delightful trip! How wonderful!

Lovey222

Free123, thanks for the advice. Its comforting to know that you are doing well.

Jumpship

Mira I would bring lots of drugs! We went on a vacation 3 months post-chemo to a more humid environment. I had shooting pain that I didn't have before so I was glad I packed my muscle relaxers. But then again in France you don't need scripts like here I think.

Have a blast!

GirlPowerDebbie

Free - I quit taking my Tamoxifen in April, but I only tolerated the Teva.  Any time the drug store gave me a different generic I would end up with a yeast infection.  Yuck.

MarieBernice6234

Hi All -

I am not responding to any of the above posts, rather I just want to ask a question of my own. I have been on Tamoxifen for just 9 months. There were some side effects in the beginning - some constipation, excessive cold after taking the pill. Also, I had very minimal warm flashes. Now nine months later, I am having more warm/hot flashes that come more regularly. Is this normal? I know sometimes side effects can change over time. Any thoughts?

MarieBernice6234

fizzdon52

Yes MarieBernice my hot flushes have increased. I have been on the drug for just a little bit longer than you and have noticed my hot flushes have increased. They seem to be worse in the warmer weather. I live in New Zealand and we are just coming in to our summer. In the winter the hot flushes don't seem to be so bad but I am really feeling them at the moment.

gemini4

MarieBernice, that definitely sounds possible. The increase in hot flashes may be connected more to where you are in peri/menopause versus the tamoxifen.

SummerAngel

Just an update on me: I stopped Tamoxifen again on Tuesday. I thought originally that I could make it until my next MO appointment on the 28th, but I just couldn't do it. I had seen my ophthalmologist again and he said my eyes were ok, and that I should use artificial tears 4 times a day and hot compresses at night to help with the pain and blurriness. I then saw my gyno and she said the intense pain I had felt was the ovarian cysts on the left side rupturing, and that now I have developed a new cyst on the right which is causing my pain there. She told me that I will most likely keep getting cysts while taking Tamoxifen and to take 800mg of ibuprofen for the pain.

I finally decided to stop because I couldn't take the pelvic and joint pain and constant headache, plus the eye pain and blurry vision, plus feeling like I was losing my mind and becoming a complete nut with no control over my emotions. I thought to myself that I could either:

1. Quit Tamoxifen, which will double my risk of distant recurrence to 12%.

Or

2. Keep taking Tamoxifen, which will reduce my risk of distant recurrence to 6%.

3. Take ibuprofen daily, multiple times per day for the joint, eye, and pelvic pain plus nonstop headaches.

4. Apply artificial tears 4x per day for the blurry vision.

5. Get myself some antidepressants and/or antianxiety meds to counteract the ridiculous emotional issues.

For me, the choice was clear. As of this morning my headache is finally a bit better, for the first time in weeks.

I debated with myself about posting this, as I don't want to scare anyone. However, I wanted to post an update in case anyone was wondering, and also to let people know that even with more severe SEs, it's not the end of the world because they will go away if you quit. It's always worth a try because the benefits of Tamoxifen are clear.

Blownaway

Thanks for posting Summer Angel - it helps to know that others are having joint pain, headaches, vision problems (in spite of getting new glasses)...... I am going to keep taking the Tamoxifen simply because I did not get to finish any of my cancer treatments. Chemo was stopped early due to my body cratering and Herceptin was stopped after 7 infusions due to heart failure. By the way, I also have short term memory problems, nerve pain, burning feet, numb hands, aching muscles, shortness of breath.....the list is a long one but suffice it to say most of my problems stem from chemo/Herceptin rather than the Tamoxifen. Good Luck to you!

MarieBernice6234

Hi, Fizzdon 52 -

Up here in New England, it is our Fall and then of course. the winter will be coming along. These started to be more noticeable to me for a short while and then of course it continued while I was away in Florida for a brief holiday. I hope they don't become even more of a problem. It is so much more difficult for me to cope with these things (body changes) because I never really experienced the other type of changes that girls/women experience. I have never had a period before and couldn't have children. (Sorry if too much information.) So for me - this is a source of frustration as I feel out of touch with my own body.

I just looked at the bio under your name and I wasn't that there were so many types of Tamoxifen drugs available. Is that the difference in the Australian versus our medical market or what? I hope that you are doing relatively well now after your experience.

MarieBernice6234

MarieBernice6234

Hi, Gemini4 -

Hi, to a fellow Massachusetts Survivor -

Oh great (groan) does that mean that the further and further I get into menopause it could keep getting worse? Yippee! what fun }} Where did you have your cancer treatment done? I had mine done at Lahey Clinic. They do have some great doctors there. I also didn't need any chemotherapy (in the arm type - tamoxifen is oral chemotherapy) Are you still taking the Tamoxifen?

I have no patience for this menopause stuff - can't relate to it. Never could have a period or children for that matter. Just to proof that Mother Nature has a sense of humor, though, I can experience menopause. Oh werniceell I guess it could be worse. Where in Mass do you live? I live in Burlington.

MarieBernice6234

gemini4

hi MarieBernice6234 -- I had all my treatment at Mt Auburn Hospital in Cambridge. It was very convenient, as I live about ten minutes away, and I like all the doctors. Their breast center and treatment teams are highly regarded, so I was happy not to have to go into downtown Boston for treatment (especially when I was going five days a week for six weeks of rads).

Yeah, my MO tells me that all the side effects I'm feeling are closely related to menopause, and that the tamoxifen is simply amplifying them -- that I'd be experiencing them just being in menopause, but perhaps not as severely. Fortunately they're all manageable for me, and I'm glad to take something every day that can prevent a recurrence.

GirlPowerDebbie

Blownaway - check out the thread on Venting about Permanent Neuropathy.  That is a good strand for the hand/feet issues you are having.

GPDeBBIE

Sjacobs146

Gemini4, I was treated at Mt. Auburn as well: Drs. Pories, Weissman, and Lamb. Beth Roy, the Social Worker is wonderful too. I was diagnosed shortly after my 48th birthday, so we have a lot in common. I am having no trouble with the Tamoxifen, the chemo put me into chemopause, so I think that makes it easier to adjust to Tamox

Blownaway

Girlpower - I've been on that board for some time. I also have no sense of smell and very little taste and wonder if that is also considered neuropathy.

gemini4

SJacobs, I have the exact same team of doctors! Beth Roy was such a help -- so comforting and reassuring -- when I was first dx'd.

GirlPowerDebbie

Blownaway - good question!  That would suck.  Smell affects the taste of everything. 

 

queenmomcat

Staring at the prescription bottle on my kitchen counter. Debating whether to take in morning or evening--my instinct is evening?

BBwithBC45

Queenmomcat, I take mine in the evening, with dinner.

6doggies

queenmomcat, I take mine in the morning right after I eat breakfast, you should do what you feel is right for you. I have been taking it since September 18 and so far, so good, I don't have any side effects, maybe a warm flash here and there but that is it. I was never afraid to take it though, I see it as my little ninja, ready to kick some estrogen booty!!!

queenmomcat

Thank you both--I'm not particularly afraid to take it, as I've had decent luck with meds generally. Just wondering how much it matters when (I don't think it does).

lala1

I don't think the time you take it matters all that much. I take in the morning because if it's going to give me a hot flash, I'd rather have it during the day over them keeping me awake at night. Almost 3 years now and that has worked pretty well for me.

Blownaway

queenmom - I have fewer s/e's if I take 10mg in the morning and 10 mg in the evening.

queenmomcat

That's definitely a thought--no SEs yet. I guess that's good, but we're only five days in.

olgah34

Can anybody explain me, what color is normal discharge? A year ago I had some bleeding spots, it was polyp, removed.Now I have some concerns, but not sure. tiny yellowish light brownish , not like last year is OK? I so dont want to go through it again...

Tresjoli2

I m being treated at Beth Israel. Love it there. I've been on tamox about a month. My feet are killing me. Hurts to walk. Is that a normal side effect? I'm so achy at the end of the day

ladyb1234

Tresjoli, I had that SE early on when I started Tamoxifen. It was one of my SEs that came and went after the first month or so. The MO thought it might be a hang over from the taxol chemo which gave me a bad case of neurothophy (sp?) since it was in both my hands and feet. Hope it dissappears quickly for you too. There are still times I came in from work exhausted and with aches and pains.

Wendy3

Morning ladies wow busy thread. I have been on tamoxifen for six months now. Joint pain was terrible knees hips until I found Cucumin now that's taken care of. The mood swings are horrible it's like PMS times twenty I found cannabis to help with that sorry if I offend with this statement but it's helped immensely. Exercise everyday has helped as well. Night sweats are awful hot flashes I haven't experienced yet I'm sure it's coming though down the pike. I wish you all wellness and a great weekend. 

Wendy

ladyb1234

I have been on Tamoxifen for a little over six months and have had what I and my MO consider a lot of SEs. One leaves a new one pops up. However I am glad to report only cramps, muscle aches, night sweats, hot flashes, and insomnia seem to be hanging in there but they are not as severe now. Even the horrid brain fog and memory lapses are much improved. I am glad I hung in there and continued Tamixifen. My MO also had me take a two week break to kick start my system which helped a lot. I also see a neuropathic oncologist that works with my traditional MO and she has helped tackle the SEs.

I know we all are different but for those who are experiencing a lot of SEs and severe ones I hope in time they go away or improve.