Hormonal Treatment for Stage IV
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Sunshine, Don't give up. There are many other treatments besides xeloda. If your onco can't offer you any options, go get another opinion. You need to be there to see your daughter graduate. I am sending you a PM.
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I've been meaning to post in this thread for a long time, but never seem "up enough" to go into it all in detail..most of the time -- unless I'm pissed off enough -- I still have the attention span and ability for mental focus of a gnat. BUT I saw a post today in the general Hormonal Therapy thread and it pissed me off enough to write about my experiences with hormonal therapy. Here's the link:
http://community.breastcancer.org/forum/78/topic/757705?page=1#post_1982314
To which I'll add here that the supplement SAMe, which helps the body make dopamine, seemed to help some of my AI complaints (stiff joints mostly, but mood a little, too) -- which validates my "estrogen deprivation/dopamine deficiency" theory, to a point anyway: IMO it really needs scientific study... I'd still take the SAMe, but it's expensive for people with fixed incomes/limited budgets. Since it's a supplement, not an FDA-approved drug, it's not covered by Medicaid so I couldn't afford to stay on it and keep buying it out of pocket. I took it for almost a month, though...if any of you AI girls having side effects can afford it, I suggest you give it a try.
~Lena.
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Humm...Thanks Lena...I was looking at the SAMe with interest. It is a bit pricey and I was able to get relief on the traditional (and insurance covered) meds. As with many of the 'newer' supplements (or should I say, 'popular'), the price usually drops once it is out there for awhile (or interest starts to wane). I agree, studies should be done and it is possible to have supplements approved as a part of treatment - traditional insurance, yes - don't know about Medicaid.
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...just want to mention, with regards to Sam-e, absolutely do not take it if you are already on anti depressants OR have been recently ie. Dont switch from say and anti depressant to Sam-e or from Sam-e to an anti depressent.
It can be dangerous because of the mixture of drugs...actually you should usually wait two weeks to allow your system to clear before you change anti depressants because they can cause seritonin sickness. just got to be careful with Sam-e too.
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Thanks Joannan...what I am doing is working so I will just leave the Sam-e alone...of course, as with everything, I always discuss adding any medication - over-the-counter, supplements and/or a new precription - with my onc and all the rest to ensure it does not interfere or have any contraindication with my present regime. Thanks for the headsup! LowRider
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Hi
Hope my post didnt come across badly
I love these smileys....
anyhoo....I just wrote the above because some people dont consider natural therapies in the same light as prescribed....I was using Sam-e myself for depression and when I started on actual anti depressents my doctor got me to stop the Sam-e for a couple of weeks first.
The SSRI combined with MAOI (?) can have devasting outcomes....things like St Johns Wart or Sam-E too... and yes, Same is very expensive.
I guess I just want to say to you that I didnt mean to come across patronisingly or anything, sorry if it did
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awww my smileys didnt work...
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You are so right on...and it didn't come across in any way but helpful. Lots of folks thing the 'natural' supplements are ok...Fitz was taking something and had to stop because it severely reduced the effectiveness of one of her treatments - even foods can interfere. Myself, I let everyone in the treatment team, including the pharmacist, know everything I am taking - and I always check before I add so much as an cold pill! It is a good practice and yes, some combo's can have devastating outcomes! Truly, knowledge is power and any power we can get over this beastly thing can only aid in our survival and quality of life! Thanks again!
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hi has anyone out there taken gemzar? how did u feel? any hair loss?
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I do not take gemzar, but I know several people who do....one I know from these message boards and the other one I see on Wed. when I get my treatment at the oncologist's office....both are doing well on it. I am sure there is a thread on here dedicated to gemzar.....go to search and type it in. Glad to see you are exploring options, rSunshine.
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I am wondering how many women on hormone therapy have had a mastectomy?
i found out i had stage IV the night before my bi mastectomy, so all the drs said go ahead with it ...i lost my breasts but i felt better then i had felt for yrs.. once the honkin big tumor and the little one they found in my other breast were removed . Drs at the U of MN are doing more stageIV mastectomy
i am on Aromasin, Zometa and a stage II clinical study 21/2 hr injection every 21 days ....i am stable and my spine met has cleared up.. and my breast don't look so bad
MaryBe are you a Mary Beth ..i am and Mary B was one of my nicknames
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Hi MB...good for you! Really happy that you are feeling better - I ended up off the Arimidex and onto Faslodex - onc wasn't happy with only some resolution, lots of shrinkage but one tiny area of progression...I thought it was a pretty good scan...what do I know??? Onc says 0% progression is what we are going for - still on the Aredia but still don't have (thank goodness) enough 'measurable lesions' to qualify for any studies. Just a bunch of sprinkles all over the place - sometimes I feel like cupcake...Hugs all....LowRider
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MBK, I had a mastectomy, but it was way before I did any hormonal treatments.....this was back in 90 and although there was some discussion about tamoxifen, my drs decided I really did not need it (all 19 nodes they removed tested negative) and if I ever had recurrent cancer, they would then use it for treatment.....which is exactly what they did. Hmmmm, I wonder what the injection is that you are getting....I would be willing to participate in a study one day, but am afraid I have probably been on too many treaments to qualify by now. Re aromasis....I did very well on it and Lowrider, I liked the faslodex because all I did was get a shot once a month and didn't have to remember to take a pill. I was extremely fortunate in that all the hormonal treatments worked for me and I had very few SEs with them.
Oh and MaryBeth, regarding my name. My real name, the name on my birth certificat is Marybe. It was the name of both my maternal great and great great grandmothers. Sometimes when I am getting tests done at the hospital I will be asked is your full-name Marybeth....they think the th got cut off, but I say no, it's Marybe.....you say it mare uh be.
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this is off the topic but oh well
Marybe that's a cute name my big sister called me marybe ....my family calls me Mary Beth (everyone who loves me) and everyone else calls me Mary which i like, but when i started all this BC stuff all the nurses, drs etc callled me Mary Beth and i found it so comforting
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MaryBeth, It is ok to get off the topic every once in awhile. There is more to life than breast cancer hopefully. Have a good day.
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Hi all, thought I would be on the chemo site right now after failing horribly on Aromasin and Faslodex. I had had good luck on Femera for first year, but slight progression led to switching to Aromasin, rising TMs and onto Faslodex...TMs jumped to 750 (from 25 on Femera) and scans showed huge increases in bone and now liver lesion. Back on Femera which lowered TMs by 150 pts in a month. So let's hear it for Femera. I hope it is knocking back that liver tumor. Scans in Dec.
Jackie
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I am fairly new to stage IV so I am not sure where to ask this question. I was dx with mets to the liver, lung, bone and a few lymph nodes in April, I have been on Navelbine for about 5 months. My last tumor markers show that I am almost normal now. My oncol. wants to start me on hormonal treatments after 5 more infusions. My question is has anyone had mets to these areas and had good results on hormonal treatments? I am afraid it will come back full force and I will be in pain again, I don't know if I can stand the pain again.
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Hi Diane and welcome to the club no one wants to join. I can only answer to the bone mets and nodes. I went right into hormonal treatment and it was successful in resolving the nodes completely and shrinking and healing all but one pesky lesion on L3 which grew to be 'measurable'. I am now on Faslodex, another anti-hormonal but works a little differently. I have remained on the Aredia - a biphosphonate bone strengthener infusion. I will have scans in 2 months to check my progress (or lack of progression...fingers crossed). The hormonals can be very effective. Coping with the side effects is sometimes a bit annoying but there are so many things to be done to counter them and it way better than having the beast come back. I wish you the very best and do keep us posted! Hugs...LowRider
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Diana,
I've been stable on Femara since my last chemo 2/10. I have spinal bone mets. I just had my scans Monday and I'm showing stable on the Femara so far. For now it's working. I also take Zometa monthly for the bones.
Terri
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Thank you Lowrider & ibcmets, I guess I will have to jump in and see what happens, my doc. assured me that if my tm go up she will put me right back on chemo.
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Thank you all for posting about Hormonal Treatments. I was dx Jan 2010 mets to spine. Have had monthly Faslodex injections and Aredia infusion (only 1/2 dose as I only have 1 kidney.) I had a lot of bone pain at the beginning of my treatments, but now it is backing off some. I am 70 and of course have some arthritis. It seemed that wherever I already had a problem that is where I would have an increase in bone pain - my knees for example.
Please tell me what your side affects of Faslodex and/or Aredia are/were and what treatment you had for the side affects. I am on a 25mcg Fentanyl patch, changing every 72 hours. Plus am on hydrocodone. I am concerned that I may be on too much pain meds. But my doctor has assured me that I am not on too much for my health.0 -
donsuzbee...I was dx'd in Sept 09 with bone mets and now on Faslodex and Aredia infusion monthly. I think you pain meds are fine...I am still managing with the percocets so far.
The joint pain seems a common se - and it was my knees. I started to eliminate gluten from my diet and the knees improved greatly. I did get mild hot flashes and countered them with effexsor which also helped with the bit of depression I was having with the stage iv dx and since I worry all the time, xanax was added for my anxiety. I take a vit D supplement, calcium supplement, and cranberry capsules to aid in kidney and bladder function and drink more water than I ever did. Of course, I was not a water drinker so any amount is an improvement for me. I do, however, drink lots of water on the day of the infusion and shot - it helps.
I wish you the best!
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Lowrider,
Thank you for sharing your info. Knowing someone else is on the same treatment helps my mental state. My knees are caused by patella femoral syndrome in that my knee caps lay to the sides of my knees. It is a genetic condition that I didn't know the cause of until just a few years ago. Knee replacement is not an option and over the years arthritis has agravated the pain. Drinking a lot of water is a good idea. And cranberry juice would help me also.
You went for 10 years without a recur. That is great!!!!! Now you can go at least 10 more!!!!!
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Good morning Ladies,
I am currently on Tamoxafin, Zoladex and month infusions on Zometa. I have been on treatment for 6 months. I am having very good response to treatment with almost 50 % reduction in size and tumor markers are in the normal range. Nevertheless, I cannot help but worry, yep everyday. I would like to know how long you have been on hormone treatment. How long is all of our question!
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Hi Suebus, I am on Arimidex and am also stageIV. My understanding of time is, until they no longer work for me i.e. I have a progression. I have been on Arimidex for about 17months now and am at present NED. When they no longer work, I will be offered some other medication or chemo until I decide that I am done with treatment and choose palliative care.
Peace, stremgth, love n hugs. chrissyb
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I was diagnosed with Stage 4 breast cancer in March. It was a shock since I had a right breast mastectomy in 2007 and the OncotypeDX test indicated a low probability of recurrence. There was no cancer in the lymph nodes then. The cancer is now in the lymph nodes, several vertebrae and the liver. I was on tamoxifen until March and am now on arimidex. So far the arimidex seems to be working as some of the lymph nodes have gotten smaller and there is no change in the bones and liver. I had one infusion of Zometa in April however I had a bad reaction. Within 24 hours I had fever and chills. After 48 hours my left eye (the side of the infusion) hurt like hell and after visits to emergency, my opthalmologist, and two specialists I was diagnosed with uveitis. I am loath to get another infusion although my oncologists (Johns Hopkins) want me to. Has anyone had this experience?
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I was dx in 1993 then local recur in 2001 - Femara prescribed. Stayed on it for 7 years. Then mets in 2010. Faslodex and Aredia monthly. 8 treatments so far. Tumor markers back to normal and tumors do not light up in PET scan. Dr says I will be on the Faslodex/Aredia treatments for life or until they stop working.
First few months' treatments were pretty rough for the following days with flu-like symptoms. A little better now. But I have a lot of bone pain from the treatments. I have arthritis so I think the treatments just aggravate the arthritis. I am on pain meds that help a lot. So overall, I am doing good.
I mentally feel better about it all since posting to this site and getting response of all of you on the meds.
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Dar Ines,
My first Zometa I had fevers, couldn't breathe - terrible neuralgia pain all down both sides of my body and in my eyes - couldn't focus - so much pain in feet couldn't walk, the next time My Onc gave me steroids IV and benadryl IV before the Zometta and gave the Zometta in loads of saline over 5 hours - it was much less - I still have pain but generally it is confined to one or two areas - no more fever, shortnesss of breathe or eye pain. I still have the extra meds and a long infusion - oh and tylenol by mouth the day before each six hours - the day of four hourly and the day after six hourly - and I drink gallons of water befroe during and after. My bladder hates me but it is now bearable
Linda
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News, news, news...the FDA has approved a double dose of Faslodex - based on results from a new study...doubling the dose increases its effectiveness - by more than double. I don't know the exact percentages but my onc's office called me last evening to let me know that I will now be recieving the new approved double dose! Of course, I had to ask if this meant that I would not have my scans next month but wait until 6 months out from the new double dose...sadly, no, November will still be 'scanxiety' month - can't blame a girl for asking...LOL Oh, and no more alternating cheeks - it will be a shot in each cheek every 4 weeks - apparently it is not recommended to load the entire double dose in the same area - oh well - I can deal with that if it kicks the crap to the curb for me! Yippee!
Edited to add:
A reminder if your nurses aren't already doing so - have them warm it up first, it will go in easier and you will have less injection site reaction. Secondly, absolutely do the 'stance' for both cheeks - stand slightly bent forward and lift the foot on the injection site cheek side up to the ball of your foot to take as much weight off as possible, breath and relax - the more relaxed the butt cheek, the less likely you are to have injection site issues. And since it will be given in each cheek, be sure to repeat the stance for the other side.
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That's great news for you Low, I hope it does the job for you with minimal se's.
Peace, strength, love n hugs. chrissyb
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