Bottle 'o Tamoxifen

tlfrank

It's interesting that you're so recently diagnosed and have still been told five years, not ten.

My sister had 3cm of DCIS grade two, they asked her to go on a trial to be allocated either to lumpectomy or to a watch and wait program, to monitor and only operate if something changed. She wasn't happy to leave it to be monitored, she wanted surgery. But she didn't have rads or any hormone treatment, just a lumpectomy. So it seems that they're looking at whether to treat lower grade DCIS less aggressively than now.

I am using medical marijuana (Indica edibles, 5-10 mg before bed) for help with sleep and it's working really well..

I have yet to consult with an herbalist for an opinion on THC and Estrogen+BC. There is a highly trained and trusted practitioner nearby and I need to make an appointment.

I am still looking for a strain that helps with the neuropathy and joint pain, and the herbalist at the local dispensary states that she has clients who have had good luck with 1:1 THC/CBD.

Wishing you all more good days.

-gardengypsy

Karen- I’m surprised she put you back on tamoxifen with the blood clots. I also developed blood clots (DVT & bilateral PEs) on tamoxifen. MO and IM docs all agreed discontinue tamoxifen, start lovenox acutely, switch lovenox out for Xarelto for 6 months, then start Femara once ovaries removed. They said due to the clots I absolutely cannot take tamoxifen again. Now what I can tell you tamoxifen vs femara side effect wise (at least for me) is that Femara has far fewer SEs and the ones I have are mild in comparison. On tamoxifen I had memory issues (even just remembering the next word in a sentence), terrible joint pain in feet/ankles/hips/arms/hands/fingers, hot flashes, restless sleep, and severe itching on my upper body that I had to take an anti-histamine for. Oh yeah, and the clots. On Femara, I still have hot flashes, I tend to wake up a couple times a night but the sleep in between is restful, and from the tip of my left pointer finger extending down into that part of my hand where it joins together with my lower thumb joint aches horribly when I try to move it after a period of non-use (ie when i wake up in the morning, after sitting still watching a movie or reading a book, etc). I still sometimes have memory issues or will use the wrong word on occasion (ie I was trying to talk about zofran for nausea but it came out as ‘Zoloft’ instead) but the brain fog is nearly non-existent now. Thank god for that fog lifting as my job requires a lot of memorization, recitation and thinking on my feet. I hope this is help

tlfrank

I think in the UK they always want you to do radiation and tamoxifen if you have grade 3 DCIS but not for lower grades. It seems the research is that a lot of DCIS will never become invasive, and in the days before mammograms it would never have been detected because there is no lump. But I'm glad to have thrown the kitchen sink at mine, at 5cm it was certainly on the move even if it hadn't broken through yet.

runor

I hadn't thought of the risk/benefit in those terms. When I started taking tamoxifen (day 3, so not caused by the tamoxifen) I had a bleed and was sent for an urgent hysteroscopy and biopsies, I had a uterine polyp and abnormal uterine thickness, but thankfully not cancer. The gyne consultant said that tamoxifen was a higher risk for me because I was already starting out with endometrial issues caused by too much oestrogen and the tamoxifen would make it worse.

So there was a lot of discussion about the risk/ benefit, there were two oncologists on the team and they disagreed over whether I should take it. In the end I decided to take it until anything happened, I have an annual endometrial scan to check on any developments., so far so good. My own oncologist wanted me to take it, but the board disagreed.

It was a bit of a confusing time, glad that's in the past!

runor

These things aren't straightforward are they? I had to choose whether to follow the board and my gyne consultant, or my oncologist. In the end I came to the compromise that I can live with.

So I can completely understand your compromise. Like you, I read the studies, and they contradict each other all the time. But I have come across the woman who has cancer caused by her radiotherapy for her breast cancer, and also a woman with endometrial cancer caused by tamoxifen. They both post on my UK forum. It brings it home to you that they may be statistical anomalies, but they're real women with lives and families, and they could be any one of us.

Finding that the two oncologists on my team completely disagreed with each other just brought it home that in the end we're the ones who have to live with the outcome, so we have to make our own decisions. Mine is that I take it as it comes, and if things change, so will my decision.

So I understand your approach to this, to find a way forward that works for you. There is no magic bullet that means this can't come back, whether it's eating kale, taking the tablets or anything else.

runor

At first I found it very confusing that the two oncologists disagreed. But they both said the risk benefit was finely balanced. And in the end, we all talk blithely about getting a second opinion, there would be no point if the experts always agree with each other.

Waiting for another mammogram must be really tough, I'm surprised they didn't do more biopsies if there's a doubt about an area. You could have had your mind put at rest a long time ago if it is all okay. But I didn't realise that it looks different after surgery, I guess it makes sense that there is scar tissue and maybe a cavity. I had a lot of tissue removed and the rest moved around so nothing is where it started, I wonder how that looks on a mammogram?

In the end, I guess we're all having to learn to live with uncertainty. On my good days that seems fine, on a wobbly day, not so much. But I really feel for you, that is a whole load of worry to deal with. Sending you a hug!

Houmom- oh no! I had an itchy burny rash on my back, shoulders and upper chest around collarbones from tamoxifen. 2 things that really helped were 24hr antihistamine (Claritin, Zyrtec, Allegra, xyxal - take your pick. Just don’t use Benadryl) and vagifem cream (store brand works too. Vagifem has 20% benzocaine in it that basically numbs the itch. I kept tubes of it in the bathroom, the kitchen, the bedroom, the car, etc. for me the itch would come on very fast all at once and it was intense. Vagifem would take it away in seconds.

I've been hesitant to post because I didn't want to jinks anything. I've just started my 4th month of Tamoxifen so it's still early. My side effects which started a few weeks after starting were mild hot flashes, maybe 5 a day. Mostly in the evening and night. No sweating but clammy sometimes. Mild joint pain when I would first get up from sitting, that would go away by the time I made it to wherever was going in my house. Interrupted sleep, dry skin, and the hair around my face has thinned a tiny bit. Might not would have even noticed but It’s growing back in from chemo loss so I’m really paying attention to it.That's really about it, all annoying but nothing I can't handle.

I started Magnesium about 7 weeks ago or so and joint pain is totally gone an hot flashes are mostly gone, I'll have a very mild one maybe very other day or so. For sleep I'm taking Melatonin and its helping a little so far. I started with 1mg and worked my way up to 5mg extended release. As far as the dry skin I've just had to make myself have a better skin routine. I've never had to moisturize before so this is weird, my skin was always very very oily. Anyway, I'm pleasantly surprised so far and hopefully all SE's will just stay in the annoying range. Lol

To funny Legomaster225, I think that’s a fantastic idea! Funny you should say that too because I just threw away my empty bottles earlier this week. Only because I’m perging the house and nesting before my next surgery or they’d still be sitting there. Are you doing well with the Tamoxifen? Sorry if you’ve posted about it, it’s hard to keep up. Although I could go back and look.

I've been saving my empty bottles too...and I don't know why! I didn't even think about until I read your posts!

I'm glad I'm not alone. 😉 Houmom, that must be quite a collection! One that is hard earned too!

Scrafgal - we might have to exchange pictures here 10 years from now with our collections!!

TWills, I have not had any real side effects that bother me. I had a baseline trans vag ultrasound that showed minor thickening but it was only a few weeks into starting tamoxifen so I can't really blame it. I am having follow up procedures to make sure it doesn't change. If it dos I'll just switch to an AI a bit earlier than planned

TWills- my SEs are almost exactly the same. Drier skin, more easily interrupted sleep, but nothing significant. The drier skin I find very interesting, since I've always been frustrated by my skins oily tendencies. Its actually a good SE (well, I may not say that in winter...it's a very warm, humid summer where I live). I wonder if it's because our ovaries start pumping out more estrogen (if premenopausal) or if its because the action of estrogen on the skin is being blocked or if estrogen is more active in the skin with T, like the effect on bone?

Almost 2 months on the big T. 118 months to go. Lego, love the idea of the pyramid of bottles.

My tamoxifen comes in blister packs, pop the tablet out the back. No bottles. I'm bummed.

Rhyfelwr:

I have also had increased neuropathy on Tamoxifen, I find it to be even more annoying if I am overly tired. It is just annoying and frustrating. I am on week 8 of Tamoxifen treatment and find that the increase comes and goes. Glad to know I am not loosing my mind thinking it was only my mind playing tricks on me about the increase of my leg neuropathy from past Luekemia chemo.

Bahaha, Legomaster, perfect!