Hormonal Treatment for Stage IV

moderators

This thread will be for the discussion of hormonal treatments as they relate to Stage IV members.

pattih

Thanks Mods, I'll go first. So I will be starting Tamoxifin in a month. I took it pre meno 7 years ago with very little SE's. Now I am older and surgically post meno. Anyone do this and notice different SE's between pre and post meno?

raro

I did tamoxifen for 4 years. Then I was diagnosed with mets and went on chemo. Chemo has so far failed, so he decided to put me on one month of tamoxifen, followed by Femara. I just started tamox a week ago, but so far no side effects at all. Probably because like you, I'm surgically post meno. I have a similar history as you: ER+, IDC, mets. I'm a bit confused as to why I'm only on tamox for a month.

joaniji

I took Tamoxifen after my initial diagnosis of stage 2 when I was 40 (nearly 6 years ago).  I was premenopausal and absolutely hated the way I felt on Tamox.  I ended this med. with doc. approval after 3 years and was diagnosed with mets the following year.  I am now surgically post-menopausal and take Aromasin for ER+ cancer that spread to a number of bones.  This drug has worked well and I have very few, if any side effects!

ead

pattih, I took Tamoxifin 11 yrs ago cancer came back 7 years later. I too was premenopausal I am surprised that your oncol. would put you back on it. I find it interesting, but any way It was horrible for me. I was 39 at the time. I did't realize you could take it again, I am on aromasin now, but if this fails I do not know if my doc would put me back on it. Sure hope you do well on it!

Liz

bygracealone

Age 65 at dx 1/24/09 stage IV from the start ER95%  PR90%  HER2 neg

Mets at dx were spine top to bottom, hip, pelvis, femur which required IM rodding surgery
nodes, lung and liver

no mastectomy

First treatment was a Dana Farber clinical trial with Arimidex and Faslodex.
Experimental arm received Arimidex and Faslodex together
Control arm got Arimidex first until failure, then Faslodex
I was in control group. Arimidex failed at 2.5 mos, Faslodex failed at three mos.

Arimidex shrunk everything but liver mets
Faslodex got rid of lung mets (which have not returned) but everything else grew.
No side effects.

Chemo for seven mos., more liver progression, then began Aromasin a month and two weeks ago. So far no side effects.

Sandra

luannh

I've been on tamoxifen for about 6 or 7 months now and I hate it!  I have had alot of issues with depression and controlling my emotions.  I cry at the drop of a dime and can't control it.   I have also started to have alot of weight gains since being on this.  My eating habits haven't changed yet I am continuing to pick up inches and pounds!  Then the weight gain depress me more!  What a vicious cycle.  I was put into menopause in 2003 when I had a hysterectomy and ovary removal in 2003 so it isn't from the rapid onset of menopause.  I have been on hormonals since 2006 and haven't felt near as bad mentally as I do now.  The other drugs caused some aches and pains, I think I would prefer those over this!

33skidoo

I started off on tamoxifen.  I was stage IV from the get go and pre-menopausal.  I didn't have chemo.  I never had another period after starting the Tamoxifen.  I had the usual hot-flash achy joints side effects, plus it caused a humongous ovarian cyst.

The only reason I changed to Aromasin is that I got neutered when having the cyst removed.

nancyh

Thanks to Pattih for the idea to start this thread and for BCO mods to make it happen. 

I took tamox back in 2003 when I finished up chemo/rads for my first go-around with breast cancer.  It was fine and I honestly didn't feel any SEs.  Hot flahes were BAD from chemo, but actually got a little better as time wore on and eventually I got my period back (I was 33 years old back then, so my ovaries recovered after chemo).  As time went along, I got very lazy and a cavalier about taking my tamox, so for example if my Rx would run out I'd be slow about getting it refilled.  I stupidly viewed tamox as "icing on the cake" compared to chemo, but now I realize I was SO very wrong.  I have regrets for sure now that I'm stage 4 and it makes me want to preach to all the stage 0 - 2 gals to be religious about taking their tamox.  

Anyway, I just started Femara a couple weeks ago and so far, so good.  It is too soon to attribute SEs to hormone tx versus transitioning from 6 months of weekly Abraxane/Avastin. Intheory, Famara will be a cake walk.  At least I don't have to go in every week for infusions and won't have to deal with the SEs from the anti-nausea meds.  I feel like a free woman again not being tied to the chemo chair for hours on end.

bygracealone

I believe it was Lowrider54 who worked so hard to get these new permanent threads posted.

"Topic: Recommendation for Stage IV Specific Treatment Thread

Hello Moderators...I think after posting the above - perhaps the best solution would be to pin a thread at the top of the stage iv forum where hormonal, chemo and rads treatments could be discussed specifically as they relate to stage iv.  The other forums are great but so many on the hormonal forum are early stagers who have an option to take the stuff or not - if we don't take it - we die. 

Collectively, it seems most like all the stage iv stuff in one place so a new forum would not be desirable - I don't know if you can make sub forums under a main forum but the stage iv treatments, although the same drug, are given for very different reasons.  It would be very nice to have one place for all the info. 

Thanks for listening.

Low Rider "

Hope no offence is taken for this reminder but she worked for weeks to accomplish this task.
The discussion is supposed to relate to stage IV treatment

pattih

My post was in regards to Tamoxifin and Stage IV treatment appropriately posted under the Hormonal Treatment for Stage IV thread. My post just happened to be the first one. I applaud Lowrider in initiating this effort and did so under her original thread. No one is looking to steal anyones thunder here.

nancy h and others thanks for your input. Sometimes I think the hormonals run together. I'll just wait and see what it brings me this time. No need for me to post for awhile. I'll be in touch.

nancyh

Oh yes, I'm so sorry...thanks to Lowrider for getting the idea going (my bad....when I saw Patti's name up there first I was just remembering incorrectly...I have such a terrible memory!).  Anyway, I think these sticky posts in our stage 4 forum is such a great idea.  THANKS Lowrider! 

heatherpalmerton

NancyH I did the same as you. I wonder if the same thing. Keep up the preach and let them  be reminded of what could happen. It just really makes you wonder how many women that are stage 4 did the same thing. or just the  oppositeb took it like they should and are still stage 4.  Would be a very interesting study. Heather

ibcmets

I didn't have any SE's with Femara the first 3 weeks.  I've been on it 3 months now.  I've had a couple nights with severe bone pain.  I've also noticed a slight  consistant pain in my left upper arm.  Last night it all of a sudden became very severe.  Even vicodan did not relieve the pain.  I called my onc and he will do another bone scan just to make sure where I'm getting this from.  My scans last week came out very well except for a small increase in inflammation.  I told my onc that during my Pet scans, my arms are always above my head.  Maybe they don't check my arms.  I'm waiting for the bone scan and will know more later.

Terri

donsuzbee

After 7 years on aromatese inhibitor, 2 years off, I have developed mets to spine. Now on Faslodex injections every 28 days. Also 2 hours infusion of Aredia. Have had 3 treatments of Aredia and 4 of Faslodex. Was pleased minimal side affects. Until this last treatment. Severe joint aches for about 5 days. Anyone on Faslodex? any side affects?

Fidelia

I am another one of those tamoxifen relapsers. I was dx 14 years ago - premenopausal. Had mx then 9 months later had the other off - no cancer in that breast. I started on tamox but really suffered - weight gain, depression, weird stroke-like 'turns' and a big psychological problem with taking anything after all I had had a lot of surgery - who needed drugs? right? WRONG!!! 4 years and 9 months later - widespread mets to lung skull and hip. This time on tamox, zoladex and bonefos for bones. Told I needed palliative care and given about 3 weeks - due to lung mets. This time I took tamox religiously. I had a big 'flare' the first week of taking it - lung mets gone within a month. No symptoms of cancer - but weight gain fluid retention and the weird little 'turns' but this time I didn't complain - and just bought bigger clothes - though hating it! lasted 6 years and 3 months - then bad recurrence to bones - now on Femara, Zoladex and Zometa - though recently went back to bonefos to have a rest from the Zometa infusion. HAve all the usual aches and pains on Femara - and never lost the weight or fluid - but still grateful still here almost 9 years after my '3 weeks' just goes to show! The hardest thing now is waiting for the inevitable failure of this tx and wondering whether I will respond a 3rd time....but just have to struggle with that and try not to dwell. LuannH - the weight and the tears - its tamox for sure - but as long as it works!!! and it does seem one can go back on earlier tx - all depends on how long it was since it was last used and on how your body reacts ...again - it's all a bit of a lottery:(

Thanks to Lowrider54 and the moderators for 'sorting' us into useful categories to aid in decision-making.

fidelia

Padiddle

I started FEMARA in February right after having my ovaries removed.  I try to minimize the hot flashes and avoid triggers if I can.  I take the pill at 7:00 p.m. because an hour or so after taking it, hot flashing usually occurs.  I like to get that out of the way before bedtime instead of at bedtime.  I keep a small fan near my head in bed which helps a lot too.  I've noticed some joint pain that is mostly after sitting for awhile, so I try to walk about so I don't get too stiff.  So far, weight gain has been minimal and I hope I can keep it that way.  

Nancy:  I was placed on tamoxifen 9 years ago at stage IIB, but only tolerated it for 14 months.  I was miserable on it.  Gained so much weight I couldn't bend over to work in my garden anymore.  It felt like my life was ruined.  Here I am 9 years later with recurrence with mets to bone.  Who can say that I wouldn't be stage IV had I kept taking it?  Now that I am stage IV, I'm very serious about taking the FEMARA at exactly the same time every day. 

I'm not sure when I will have follow-up scans. I've never asked my onc about that.  How often do stage IV people get scans?  Jean

luannh

All oncs are different when it comes to scans.  every 3 to 6 months is the norm.  The first year after my dx I was wanting those scans as soon as that 3rd month was rolling around.  Lately I have become complacent about it.  The longest I have gone without a scan was a little over a year.  As you go on, you and your onc shoulld figure out what is best for you.

Anne45

Thank you so much lowrider for your hard work.  I stared femara in February and just had an mri which noted worsening of right sacral metastatic disease.  Superior endplate compression deformity of L2 has increased but this could
     be due to benign Schmorl's node versus pathological change. There
     appears to be a small lesion in the anterior/inferior aspect of
     L4 that is slightly more prominent on the current exam.   Dr. is leaving me on femara.  Has anyone experience this and had a turn around and done better on femara?
    

LivingIt

yeah go Lowrider for getting this up for us. Im using a Faslodex with RAD001 in a trial at the local hospital. I have hopes for some regression time, but its just 4 months now.  Be well. Zoh

nancyh

So, I wanted to add a little anecdote to this thread about Femara.  My mom, who is 74, is also stage 4 and has been on Femara for almost a year.  She has had zero SEs, she's dancing with NED, and feels better than she has felt in years.  I feel fortunate to be following in her footsteps...I really, really, really want Femara to work for me too.

Anyway, I just wanted to put in a plug for the fact that SEs on these hormonals can be really minor. 

Reneepals

Well I start my Clinical Trial tomorrow. I am very excited. Labs in the morning. Then I get my loading dose of Faslodex. They will give me the Placebo or the Tykerb and let me know how to take it. Either way its a win win situation, like someone on the boards stated. I have been in some excruciating pain for the last 12 hours. We are supposed to be getting a lot and I mean alot of rain. So maybe that is the reason. I am not a huge pill taker, but I just popped some Vicoden. Pain sucks! OWWWWWWWWWWWWWWWWWW. We are going to figure out pain meds tomorrow too. Because the vicoden isn't doing any good regardless of what is causing the pain.

CathleenP

Hi Everyone,

When I first entered the BC world I was dxd as a Stage II, ILC, ER+, PR+, HER2+. I had the Works = Mast, Chemo Clin Trial, Radiation. Pretreatment I was not menopausal; postchemo, I was menopausal. After my body recovered a bit and I was treated for clinical depression (Effexor 150 mg), my onc put me on Tamox. No SE except for the 20 lbs weight gain and 2 in bra size increase. I was cancer-free for 4 years. Then, the onc cycled me through the aromatase inhib (all 3) which I could not tolerate b/c of the bone/joint pain. Back to tamox for 6 mos, then new scan showed metastasis to the ovaries, renal area, spine and pelvis. Stage IV and ovaries removed. Thinking I was still hormonally sensitive, we switched from tamox to femara to faslodex, both with zometa. Another scan showed growth of the lesions. Upon MY suggestion we did a biopsy of the renal tumor. Surprise! Surprise! I am now a Triple Negative. I am now back to chemo (taxol) plus zometa. The cancer is outwitting the hormonally sensitive treatments. The lesson for me and for my onc is that you can't take anything for granted--keep check on the sensitivity of the cancer.

getwell

I ahve been on all of the hormonals with the exception of Arimidex. None of them worked even though I am ER 95% pos.! I asked my onc what the heck is going on and why aren't thse hormonals working. He says he has  no idea why and neither does anyone else!!!!! Now I am on Xeloda and due to the onset of new bone pain I don't think that is working either.WTF is going on here?????

Hugz,

Pat

dreamwriter

Oh getwell I hope that you are wrong about the bone pain being new mets.  I do believe Xeloda can cause bone/joint pain... ?  Can someone on Xeloda respond?

donsuzbee

I started on Faslodex injections and Aredia infusion on 2/5/2010. 1st 2 treatments - not too much side affect. But 2 days after my treatment of 4/2 I thought I had been run over by a Mac truck. So much bone pain. Oncologist ordered an MRI in the one area that is the worse. No further mets. The chemo simply caused the bone pain. After about 5 days I was better. Oncologist had also ordered pain med for me and that helped a lot.



Getwell: will your onc order pain meds for you? Hang in these are these meds cause more problems than I think the pharmaceuticals want to admit. I know they did lots of clinical trials. But I don't think they did one on a 70 year old woman with arthritis - ME!

Info I have read does say the 2 I am on prolongs life by at least 2 years. So I'll buy 2 years with the bone pain and that's ok.



Thinking of you!!!!

Susan

raro

I was on Xeloda 3 months and it caused a bit of bone pain, but the worst for me is the monthly Zometa infusions. Those wipe me out for 4 or 5 days.



Here's an issue (I haven't seen it mentioned much, so if I missed something let me know)...antidepressants. I heard that tamoxifen or other hormonals can be not as effective if you take antidepressants. I've been on Wellbutrin and am wondering if it could make the tamoxifen less effective? Anyone know?!

33skidoo

The antidepressants that interfere with Tamoxifen are SSRIs (selective serotonin reuptake inhibitors).  That class of drugs includes paxil and zoloft.  Wellbutrin is not an SSRI and is not known to interfere with Tamoxifen.

[Deleted User]

I was initially dxd in 12/04.  Did all the treatments.......neo-adjuvant chemo, mast, rads, more chemo (Xeloda for 6 months) and then Arimidex.  Went to my 6 month checkup in Sept., complained about the LE arm and the fullness under my numb armpit, onc decided to do a CT scan then through in a bone scan.  Both scans showed suspicion and concern to vertebra.  She was surprised...was looking for something else related to armpit.  Onc said we could wait 3 months and repeat CT scan.  After re-reading the reports I decided on a biopsy...they biopsied L1.  Surprise!  It was positive.  My onc was surprised, I wasn't...LOL  Anyway, off the Armidex and on to Aromasin.  She said she'll never give me Femara because it works too much like Arimidex.  I have had two more CT scans and one more bone scan after dx.  So far, so good.  Just hope the Aromasin keeps working.  We're also talking about doing Zometa only every six months.

Someone had asked how often do we get scanned after this dx.  At first it was three months after dx and then 2 months.  Now I see her in four months and have CT scan two months after which will be 6 months after last scan.  Confused?  I'm kind of scared to wait that long, but all the radiation scares me too. 

Fidelia, I would like to know more about the bonefos.  I am really afraid of Zometa because of ONJ.  I have dental issues..........................very dry mouth. 

Hoping and praying that those of you who are experiencing pain will get it under control. 

Shirley

Reneepals

Shirley.. It surprises me that you are only going to get the Zometa every six months. I get it once a month. The ONJ is very rare. We just have to be very proactive with our dental appointments. My dentists just does this extra exam with this blue light, excuse me for being naive as to what it is.

Anne45 the A.I.'s do take a while to get results. It took me about 4 to 5 months to go NED. But now I am on Faslodex. (1st does this past Friday) I got 15 months from Femara.

Fidelia

Hi Shirley,

apparently Bonefos is not used in the US - it had been linked early on to leukaemia - but still freely available in Australia!!! I googled to see if there has been any recent press about negative aspects of bonefos - but couldn't find anything. My onc recently prescribed another oral bisphos - Bondronate ? which I haven't started yet as I still have the rest of current prescription for Bonefos to finish. 

Unfortunately, both oral as well as infusables are linked to ONJ but I really think the benefits outweigh the risks - I have been on either oral or IV bisphosphonates for over 8 years and I do think they have a lot to do wth my durable response and the oral form is easier at least for me - I HATE injections and really suffer with the infusion.

I would certainly ask your onc about getting an oral bisphos to help with your tx and congrats on being so vigilant and brave and getting on with the scans. I have been too scared to find out too much and just rely on how I feel - which is not that reliable really...