Failed Tamoxifen/Arimidex. What next?

LauraZim

Hi all,

I've been a lurker since I was diagnosed in December, but my situation has grown a bit more complex so I am reaching out to the community for your own personal insights that might help me make a decision.

My long story, short, is that I was diagnosed with two small tumors (both Stage 1) in December 2014. Surgeon was convinced that a lumpectomy was a good option because of the size and location of the tumors, so I had a lumpectomy Dec. 30. Clean margins and both were slow-growing, low-grade cancers. I did radiation in February.

I am 55 but still no sign of menopause so the med onc said the gold standard was the Tamoxifen. I have a history of blood clots, so was concerned with the Tamoxifen but the med onc said he'd test me for the Factor V Leiden mutation (which increases your chance of clotting). If I was positive, he'd try something other than the Tamoxifen. A couple of consults later, he took my blood and said he'd call if I shouldn't go on the Tamoxifen. Apparently he just did a standard blood panel and he forgot to do the clotting test. I clotted and had a pulmonary embolism on April 21. Subsequent testing by my new med onc shows that I have the gene mutation for clotting.

Since Tamoxifen is out, my new med onc put me on Lupron, which induces menopause, so I could then go on the AIs. Once I'm done with the blood thinners, the plan is to get a hysterectomy (or ooectomy) in November. I started on Arimidex but within three weeks, I started to get headaches and my vision started to be effected. First, there was a bit of distortion upon rising, and then the headaches got worse and there was a pink tint to everything I saw out of my right eye.

So she took me off the Arimidex and wants me to start on the Exemestane.

I haven't met with her yet to discuss this, but at this point, I have had such bad luck with the rare, dangerous side effects that I am ready to call it good with just inducing menopause. From my reading, it seems that induced menopause should decrease the chance of recurrence - perhaps not as much as with an AI, but still more than doing just the surgery/radiation.

Since I'm 55, I have no more use of my female equipment, so I would probably look at a full hysterectomy, which will also eliminate any concerns for uterine or ovarian cancer.

I'm wondering if there is anyone who has done surgery and radiation and then only the induced menopause for treatment. I really appreciate you reading my story and sharing your insights.

Laura

Moderators

Hi Laura, welcome to our community. We're sorry for what brings you here, but really glad that you finally decided to reach out!

We're sure other members will come along to post and help you make a decision along with your medical team. Until then, you may want to read this article from our Research News section, in the Breastcancer.org main site:

Aromasin Plus Ovarian Suppression Reduces Recurrence Risk Better Than Tamoxifen Plus Ovarian Suppression in Premenopausal Women

Hope this helps! Let us know how you're doing.

The Mods

vlnrph

That is quite a story and points out the value of what I tell people: get copies of your lab, imaging and pathology reports! Even if you didn't understand everything included on them, seeing that important information was missing could prompt a phone call or two. Having a PE must have been a very scary experience.

I have not been in your situation exactly since I was able to take tamoxifen then switch to aromatase inhibition once menopause was confirmed. However, I know women who have had various "female" operations and would mention that salpingo-oopherectomy is usually a simple procedure while complete hysterectomy is somewhat more involved and can result in problems with the pelvic floor, leading to incontinence, etc.

Endometrial/uterine malignancies are less ominous than ovarian and can be diagnosed & treated more easily due to the fact that they often present with fairly obvious symptoms like abnormal bleeding. When you consult with a gynecological surgeon, remember their job is to remove (or possibly repair) things. Where I used to work, we would laugh about what they must have been taught in medical school 'when in doubt, cut it out'...

You are wise to be seeking out other perspectives. There are calculators you can find on line such as CancerMath which will give survival statistics taking into account various factors including hormonal therapy.

The boards here tend to be slower on weekends especially in summer but hopefully another few will come along and provide their opinions. Trust yourself in making these decisions because you are the best judge of what is right for you. We can be thankful there are so many options available although choosing can be difficult.

LauraZim

Thanks so much for your input, especially about the oopherectomy v. full hysterectomy. Good to know!

ABeautifulSunset

hi Laura,

I was dx'd when I was 47. menopause nowhere in sight. Still, my MO liked the idea of the AI better and induced menopause. I had Lupron injections for about Six months, but when my estrogen levels came back too high I went in for the ooph.

It was fine. I didn't have to get the injections anymore, so that made things easy.

I won't lie, menopause is not great... Especially when it comes on so quickly. It's a little different than being on the lupron. I really miss my moisture...like A LOT.

But im alive and doing what I have to do to stay that way.

I also agree that a full hysterectomy is probably overkill and unnecessary. It's all about the ovaries

Stefanie

LauraZim

Thanks Stefanie. Did you do an AI after your ooph? If so, which one and did you have any side effects with it? Thanks for sharing your story!

Laura

maxdog

Hi ladies,

I am 39, so quite premenopausal. I had a DVT postop, so Tamoxifen was not an option for me. I had my first Lupron injection 7/30. I started with heavy bleeding, cramping and feel like total crap since yesterday. I go 8/27 for my second shot and start Arimidex. I would rather just have my ovaries out, but my gyn said that I'm pretty young to lose them. I don't want to complain as I know I am very.lucky to avoid radiation and chemo, but this is no fun!

LauraZim

Hi Maxdog - With the DVT, were you tested for the Factor V Leiden mutation? Are you on blood thinners after the DVT? My pulmonologist said that the AIs also have the side effect of clotting and if I continue with AIs (since I am positive for the Factor V mutation), he would want me on blood thinners during the course of the treatment. Although you might hear that Arimidex doesn't have the same percentages of clotting as Tamoxifen, my pharmacist said that with Tamoxifen, you have a 2-6% chance and with Arimidex, you have a 2-4% chance. My doc said that for those with the clotting mutation, those percentages increase dramatically.

After my first shot of Lupron, I, too, had heavy bleeding, but after the 2nd one - no more! My med onc said that your body has to clean out what is in there before it starts to shut down.

ABeautifulSunset

Laura, I started on Letrazole (femara) but it made my bones ache. Everybody's SEs are different, so don't go by that. After a few months my MO switched me to Exemestane, which I stayed on for years with zero side effects.

I think i started the AI even before the ooph, when I was getting lupron, but I'm not positive. It was four years ago and my brain wash mush from chemo.

Max dog, if it were me, knowing what I know now and being your age with you dx, I would not have my ovaries removed. Whatever SEs you are getting from your lupron will not be as bad as the SEs of menopause. My kingdom for a menstrual cycle!

But Iam surprised you bled on Lupron since it's suppose to suppress your ovaries...maybe it hasn't really kicked in yet since you only had the one shot.

Stefanie

maxdog

Thanks for the info Laura. I am on Xarelto. MO is also a hematologist and said he wants to treat me for 3 months, then would test me for clotting mutations. I'm glad to hear the bleeding should end, and that explanation certainly makes sense. Stef-thank you for the input on ovaries...time will tell. I am a Respiratory Therapist, so am well versed in PE's and clots and really don't want either!! The only thing that I hate about being on blood thinners is that I can't take Ibuprofen, which was my personal wonder drug!!

tgtg

LauraZim--I was already well into menopause at 71, but decided to decline both anti-hormonals after the lx and rads for a small, sluggish IDC with clean margins and no nodal involvement. Since our bodies manufacture estrogen out of the sugars and fats that we ingest-- whether we have functional ovaries or not--my treatment plan of choice (with my doctors' blessings) is to (1) cut down on sugar consumption (including alcohol, a huge supplier of sugar, as well as desserts and processed foods), and on fats, (2 lose weight and body fat steadily to deprive my body of a warehouse of supplies for making estrogen, and (3) keep exercising regularly and often. Two and a half years later, I am fine and have no regrets about deciining the antihormonals with all their side effects, some of which, as you found out, can be even more life-threatening than the sluggish, excised early-stage tumor! . .

LauraZim

I was really glad to hear your story, tgtg. Our paths sound very similar. I bought the book Anti-Cancer, and took everything it said to heart, including sugar/fat reduction and bumping up my leafy greens and green tea. Unfortunately, the best foods for cancer are high in Vitamin K, which works against the Warfarin, but fortunately I have a knowledgeable blood clinician who is helping me balance all that.

And exercise! I went to an oncology naturepath who said that if you can do nothing else, exercise. So I'm diligent about getting in exercise. In addition to the recorded benefits, it also makes me feel like I'm being proactive. When I'm sweating on the machines, I say "I'm killing cancer cells, I'm killing cancer cells!"

Moderators

Exercise is super important, LauraZim! For some more info, including why exercise is beneficial after a breast cancer diagnosis, some tips to keep you motivated, and how to exercise safely, check out the main Breastcancer.org site's section on Exercise.

--The Mods

anya1122

In 2010 I was diagnosed with BC. I had both removed and all went well. I had a cat scan and all was clear plus my ph level was back to normal. I chose not to have radiation or chemo. I have Factor V Leiden, Factor II, and Heterozygous mutated genes. Because of this and the fact that my scan was good I did not take Tamoxifin as suggested. The past five years I did regular CA 27-29 blood work and it always came back in the 30's. Last December 2015, it jumped to 81 and I had a scan done and it shows BC has gone to my spine in two places and one breast lymph. My Oc suggested Latrozole to reduce my estrogen, which it did to 61. I had aches, pains, and a case of shingles. After four weeks I quit taking it. Now Tamoxifen is next in line if I decide to do so. I detoxed with activated charcoal. Now my GP is researching the chance of blood clots and taking a blood thinner for 1-3 months. I am considered stable at this point. Anyone else have Factor V and use Tamoxifin with blood thinner?

Moderators

Dear anya1122, Welcome to the community and thanks for reaching out here. We are sorry to hear about your cancer. With respect to your questions about tamoxifen, this particular topic has not seen recent activity. Might we suggest that you pose your question in the thread titled A bottle of tamoxifen which seems to be fairly active. Please keep us posted and let us know if you have any questions. The Mods

funthing42

Hi

Quick question. Has anyone heard of not being able to metabolize. Tamoxifen.

I keep having recurrences.

2009. Dx stage 1 no nodes

2013-2014. B/l mx TCH stage 1 no nodes

2014- back 2mos after chemo skin mets locally.

2015 Apr . Rads again to the same area. Skin mets gone

TM up 30s Oct.

2016 Feb TM up 60 pet showed, for the very first time lymph node involvement. On the left I never had Cancer there.

Mri showed tiny skin nodule mid chest. Also the ant . Chest wall a tiny cyst too small to know what it is on the right. (Had this before rads also)

All skin mets gone on the right.

Tamoxifen,Arimidex,Aromasin

Now Faslodex and Ibrance. Scared that they are not liooking at something the correct way. Just throwing standardize care at me .

Im really upset. And trying not to discredit my care.

dtad

funthing42....So sorry. This is a subject I feel very passionate about. Why are these MOs prescribing anti hormone treatments and not checking our levels to see if its working? The standard answer is they know if its working if there is no recurrence. That really doesn't make sense to me. Ive said it before and Ill say it again, MOs know very little about female hormones. There should be a endocrinologist and/or gynecologist also on the team. We should be having our hormone levels checked before during and after to get a better picture of what is going on.....

Goodie16

dtad, how are your levels being monitored? Who's all on your team and what bloodwork are the drawing? How often?

dtad

Goodie16....no mine are not being monitored which is one of the many reasons I refused anti hormone treatment. However thats a very personal decision. Please feel free to private message me if you want to talk more details. I just don't agree with playing around with female hormones when you don't have the whole picture. However some women are fine with it. We have to make our own personal decisions and repect them.....

Goodie16

dtad, I agree whole heartedly in respecting each other's personal treatment decisions.