Mom going from arimidex to tamoxifen-running out of options

[maybebaby29]

Hi,

My mom was diagnosed with stage IV breast cancer about 3 years ago. She has metastatic with bone issues (sorry I don't know if it's cancer), spinal tumors (4 of them), spleen and liver tumors and something of a spot near the lung but they're not 'concerned'. She has been on arimidex and zometa for a year and they've been great. She has had ZERO side effects and is so happy with her treatment.

However, current scans have showed that the existing liver tumors are now bigger so the doctor feels that the arimidex (and that class of drugs) don't work and want to put her on tamoxifen. My mom is exteremly concerned about the side effects and effectiveness.

Part of the problem too is that she doesn't understand anything the doc tells her. I give her information from the internet about these drugs but it's like she has tunnel vision and focuses on "arimidex has better outcomes than tamoxifen" and she focuses on tamoxifen's side effects. She also hears on the news the latest drugs that 'cure' cancer and doesn't realize that it's in clinical trials and not approved. It's a constant battle.

My question is going from arimidex to tamoxifen--is it a good protocol? She wanted to go on femara or aromasin but the doc said that they're just like arimidex so there is no point. Is this true? She's scared about tamoxifen causing gynecological cancers or stroke.

[lhughes]

Can't much comment on tamoxifen vs arimidex...but I can comment on Tamoxifen.

Yes, it *could* cause gyn cancers.  She needs to be seen by her OB regularly and he should be informed of this change in her medication.  Her OB, if he's worth his salt, will keep an eye on this possibility.  I'm scheduled for an ultrasound and biopsy in July which will be the 2 year mark of my tamoxifen journey.  According to my OB, this is to check the lining and make sure nothing funny is going on.  It should be routine, but necessary.

It *could* cause a lot of things.  However, if the doc thinks this is a good avenue, then the risks are probably worth the end result.  Monitoring her for the *could*s is what her docs are supposed to do.  And she is supposed to be upfront with things that have changed within her own body to her docs.

I've seen threads from other women that tamoxifen aggravates joint and arthritis issues.  I had hot flashes and mood swings, but none of the other.  It does have a host of side-effects and potential issues.  It's still an effective drug for some people.

Now, having said all that...does your mom want to get a second opinion?  That is a viable option...have someone else look at her situation and give their opinion.  I had a friend that didn't like the opinion of her doc for stage IV, so she went to another hospital who is doing more.  Not all situations are the same, though.

Good luck to your mom and to you.  I know this is very hard.  My dad was stage IV with prostate cancer and it was a tough time.

[maybebaby29]

There is one major (ok 2) problem,

She is in an abusive household. My dad isn't the 'greatest' person and controls her every move and makes the decisions. She isn't allowed to get a 2nd opinion because it's inconvenient (I wanted to take her to one of the 3 best hospitals downtown). He is complaining about the Tamoxifen because she's in a tizzy about the side effects. He was literally screaming in the background on the phone about her "complaining". I think her doctor--which is NOT an oncologist but a surgeon--is full of it and she can't switch. I think because my mom can be very difficult to deal with at times the doc just rushes her out the door. When I talked with the doc I found her cold and rushing.

As for the OB, she doens't have one and refuses to go. While she's concerned, she hasn't had a pap smear in I think 5 years, if that. Prior to that it was 20 years. She has questionable symptoms for a while now but as soon as they mentioned biopsy/D&C or whatever, she freaked and refused to ever go back.

I am her only resource and safety net for everything. Always have been. Being a former pharmaceutical copywriter who focused on oncology, she looks at me like an expert and I'm just not. My last account I had was 6 years ago or so when Herception was brand new. I am the one who looked up Zometa because the doc never offered it to her. She only pushes chemo, which she and I agree at this point, it isn't a good idea. I mean, come on, why am I making these decisons, choices, research for her? But I'm also stuck doing it because she has no other options.

I'm extremely worried about eventual hospice care. I know my dad will throw them out. I refuse to put her in a hospital because everyone has a right to die in their home and be at peace. It makes me so mad that he can't give her a break during these times. The day she came home from her mastectomy? He expected her to cook!

And you know me with my own issues so right now,  there's just emense stress going on in my life and it's getting a little much.

And I know most would say "call the police or take her out". She's 75 years old and relies on my dad for everything. I can't disrup the household because it's true with domestic violence, it makes things 10 times worse (and this has been going on for 36 years!).

I'm stuck and lost on what to do for her. While we always had our issues and we don't get along, I stand strong on saying EVERYONE deserves some peace and quality treatment during these times--mentally and physically.

[lhughes]

My word, girl, you are stuck between the perverbial rock and a hard place, although I think the rock and the hard place might actually have one up on this situation.  I'm SO SORRY.  This just sounds horrible for you, not to mention your mom whose very life depends on getting good treatment and advice.

Private message coming.
Lisa

[emack321]

Your grandmother is not running out of options.  There's a whole family of chemotherapy for Stage IV metastatic cancer.  I've had liver mets for 3 years and am doing great on chemo.

[Sammie4258]

Hi, I have been on Arimidex and am now on Tamoxifen.  I loved Arimidex but had to switch over to tamoxifen because of vaginal atrophy that comes with menopause.  I had early menopause because I had to have a hysterectomy.  They put me on Premarin Creme.  In order for me to take Premarin cream, I had to switch to tamoxifen so that it would block the estrogen my body was producing and already in the blood stream.  Arimidex stops the production of estrogen.  It is true that Arimidex is a little more effective but only by a couple percentages. The only side effects I have on tamoxifen are hot flashes. I was really scared to go on Tamoxifen but found it not so bad after all.  Arimidex can actually cause achey  bones and muscles after it builds up in the system. So, it is six of one and a half a dozen of the other.