Hormonal Treatment for Stage IV
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I have been too tired and too sick to post very much this week, but there is a new hormonal possibility I wanted to discuss, and that is estrogen itself. DES was actually used in the 40s and 50s to treat breast cancer. According to research news on this website (last year I think), there were some reports of women responsing to estrogen treatment after they stopped responding to AIs. And there is at least one thread on this forum of a woman reporting a positive result. What happens is that the estrogen seeks out and kills cancer cells that do not respond to AIs, in the same ways that AIs did. After a period of time, all the non-responsive cancer cells are killed, leaving only cells that do respond to AIs, then the treatment is changed back to AIs.This would seem to make a lot of sense. Estrogen is a strong hormone that seems to protect women's bodies in a variety ways. When it was misused and women were over-exposed to estrogen they got cancer, but when estrogen is taught to come back into balance, it behaves as it should. We've barely scratched the surface here in what the research possibilities are.This reminds me again that modern medicine is not a true science, it is an "art." I learned this when I studied human biology.Bo0
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Hi Bo,
Somewhere here I mentioned that my onc said he'd probably take me off Femara for a while when it quits working, then back on an AI after a few weeks (or months) when I start producing estrogen again. Sounds like the same theory you mentioned. This makes more sense to me than trying another AI which works the same way as the first one. I don't know how often this is used, but sounds like my onc might try it with me, when the time comes.
Have you read the book Bathsheba's Breast? A history of breast cancer. It was quite interesting; nevertheless, it left me thinking we are still a long way from a cure. DES was mentioned in the book.
Sorry you haven't felt well the past week. Hope things start looking up.
Lane
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Lane,
No I haven't read Bathsheba's Breast. It sounds interesting. Femara worked for me for a good long time and I have wondered if part of the reason it did was that fact that I was getting small doses of estrogen (via Estrace cream) every few weeks that kept those receptors primed.
I think one very good reason that medicine has advanced so slowly is that there is not a real science of how the human body works. I studied anthropology in graduate school, and the approach to human biology was much different, studying the body as a system, a large system made up of interdependent systems that have evolved over time in response to various stressors. The medical industry seems to be entirely drug-focused. Try this, try that, and if you can't make money on it with a patent don't bother. We are so focused on manipulating our bodies with drugs, and not on understanding all the intricacies of its biology and using natural processes as a means to healing.
Bo
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I have a question that I didn't get a chance to ask my doctor last week. I was on Tamoxifen for over a year before my METS showed up. She thinks I am stable now and wants to start me on Famara, I'm thinking its just like Tamoxifen which didn't work because I got mets while on it. I guess my question is are they the same or is there a difference that I may not know about. I am going to call her this week and ask her but I thought I would run it by you ladies too. My mets are bone, lung, liver, bone marrow & some lymph nodes.
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Tamoxifen and the AI's are not the same. Tamoxifen is supposed to stop the reception of estrogen, while the AI's are working to stop the expression of estrogen. Many women have done switching. Let's hope you are one of them!
*susan*
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Thank you Susan, its funny that I always think of things while driving back home from the treatment center. I will call her too and ask why she thinks it will work when Tamoxifen didn't work the first time.
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Diane,
I have often thought that we need to have our appointments, go sit somewhere else for half an hour, and then get 5 more minutes of the doctor's time. I have been known to run down the hallway after treatment hoping to ask that one forgotten question. They do get used to it!
*susan*
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I have a binder now - I sit in the appointment with it in my lap and make notes...when I leave, I sit and re-read it and jot down anything I want further explanation about and I keep on my counter at home and drag it to work with me and anytime I think of anything, I usually grab a sticky off my desk and stick it in the bag. The evening before the next appointment, I gather all the sticky notes and put them in the binder (or write them in) so when I go for the next visit, I have everything written down from the last visit to ask about and for the new visit questions right in my lap. They laugh at me but admit it is a pretty good system... Even with that, I still forget things! AHHHHH
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Hello everyone,
I am new to this thread and have been reading a lot of the past posts and think maybe this is where I belong. I was given my dx on August 4, and started Femara that same day. Mets are in bones, liver, and lungs. I also have had asthma since I was a child. Had BMX on Sept 2 with TEs inserted at that time. I had my power port put in on Sept 17 and first Aredia IV on Sept 22. Second Aredia was on Oct 19. As of the 19th my tumor marker count went from 150.4 to 115.4. In between all of this I have every test in the book run, Cscan, PETscan, BoneScan, Liver biopsy, heart function tests, lung function tests, mammograms, sonograms, MRIs, EEGs, EKGs, given at least a gallon of blood for all the blood tests, and I may have missed 1 or 2 in this listing.
Bone pain in spine was so bad on the 19th that the onco is sending me to the RO on the 28th. I am so confused on taking Femara and Aredia with what I have been reading about radiation I have no idea what to expect or think. I did not think they would do any radiation for a long time. I also thought they would have started some other chemo by now. Any clarification or advice would be greatly appreciated. By the way I am 60, at least for a couple of months.
Some times I wonder if because of my age and the dx they are not treating me as aggressively as they would if I was under 40. This may be my imagination since I can find no exact protocol for Stage IV Grade 2 ER+/PR- HER2-. Any suggestion on where to find different protocols or if there is even such a thing.
By the way I do have wonderful dr and their staff has for the most part been helpful and kind so I consider myself very luck in that regard.
Amy Jo
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hi AmyJo, I just pop in here every so often to see how everyone is doing since I was on hormonal treatments for a long time and did very well with them....anyway, re your question, you can do radiation while on hormonal treatment, it's chemo they don't do rads with. your faslodex is hormonal and the aredia is something else altogether , a biophosphonate.....I am curious why do you get aredia and not zometa?....ins maybe. I was on aredia for a long time and it is just as effective as zometa I am sure, but the zometa takes a lot less time to admisister. I was having really bad pain and an MRI showed new mets in my left sacrum and they sent me for rads and it got rid of the pain and the radiation treatments themselves I did not find to be bad, just a bit of a PIA since they were daily and I was working around my schedule at work. What is your age, just out of curiosity. I am pushing 61 and do not think my age has had any impact on what treatments they choose for me....although as you probably know tamoxifen is for premenopausal women. I think as long as you can do hormonal, AIs, and stay away from chemo it is good.....but that is just my opinion.
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Hi Amy Jo:
This is my very first post, so hope I get it right.
I have a very similar diagnosis and it has taken me 4 months to finally settle down and come to terms with it. We are the same age - I will be 61 in a few weeks. The age thing really messed with my mind at first, you know. Just the week before my mets were found, I was prepped mentally and physically for a mast./chem/rads - you know, fight the beast with everything I had available! Then mets were found and it was "take Femara once a day, have bloodwork and your Pamidronate infusion once a month, and see you in four weeks". What?? Would that be the case if I were 40?
The more research I do, the more questions I ask my ONC and PCP, the better I feel about this course of treatment. Does my age determine my treatment plan? Not for me. I know my ER+ status was the deciding factor.
PS: Hello to all you wonderful ladies. I have been reading this section for 3 months now. You have made me laugh and made me cry. But always, you have given me hope and a connection to a community I have come to depend on.
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Thank you Marybe and hihopes, you have helped me feel better about all of this. Maybe by the time I reach 61 in Dec. I will have my head wrapped around all of this. One of the reasons they chose Aredia instead of Zometa because I am allergic to so many different things and drugs that they wanted the slower administration time so that there would be more time to react and fix any reaction I might have to the drug. So far so good, I have not had and reaction to it except for being a little lightheaded right after and really tired by the time I get home and very mild flu like symptoms for about 2 days afterwards then bone pain sets in for a few days then I am fine for a couple of weeks before my next treatment. They said we could move to Zometa later if needed. Right now I am happy with the mild SE and see no reason to change unless the Aredia is not working like it should. The longer time is not a problem for me as I usually watch a movie via Netflix on my iPad while I am sitting there. I use earphones so I do not disturb other patients that are there. I also keep all my questions and notes about different dr visits on my iPad. Easier to carry than a binder as my questions alone would already fill a 5" binder.
My DH made me go to breakfast with him as at Mimi's and after I got there I was glad he made me get out of the house. We saw some friends and ran a couple of quick errands then back home. I feel better although I still have considerable bone pain particularly in my spine that makes it hard for me to get comfortable either sitting, lying down or standing for very long. Hopefully that will be helped later this next week. I have a nerve blocker that seems to help more than anything else.
Have any of you read or been told about ibuprofen or NSAIDs making Aridia less effective? I was reading in some of my research that this was the case, but now I cannot find where I read it again. I really need to keep better notes on my research.;-) I would like to take my pain meds but they all have ibuprofen in them with the codine or darvon. And the other things I have are NSAIDs.
Has anyone else experienced thinning hair on Femara? It is not falling out in clumps, but it is thinning.
Sorry this seems disjointed and confused, but that seems to be how my mind is working today.
Amy Jo
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AMYJO, I will be 61 in Dec also.....Dec. 23. What is yours? Sorry, I know nothing about femara. HiHopes....re age....as I told Amy I think the only hormonal that is age related is the tamox which they use for pre menopausal women....if you have any heart or other issues that will enter in with what chemo they use.
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Marybe - I will be 61 on Dec 10. I have been told that when and if I go on Chemo it will most likely be Tamoxifen or Tamoxifere (sp.) Not sure what the difference is, but hopefully it will be a while before we need to add that.
Amy Jo
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No,tamoxifen is not a chemo. Taxol and taxotere are. lots of Ts and they can be confusing. I have a friend who just completed the taxol and it was not the most fun thing in the world, but she did very well on it. No sign of any cancer activity for her now. They are both in the same family and abraxane is also a member of that family. Being ER + will give you a lot of options to try before moving on to chemo.
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Hi Amyjo and Marybe, I'm still a youngster at turning 59 December 5th but I'm on Arimidex which at the moment is keeping me NED. Amyjo, your question on hair thinning........Femara and Arimadex are both Aromatase Inhibitors so do have some of the same kinds of SE's and yes, my hair has thinned by half which is a real pain as my hair is very fine and I depended on the volume to give me a good head of hair but alas alak, now I look like my mother as the hair is now short and thin .....GRRRR. It's not neccessarily the AI that is causing the hair loss but the lack of estrogen which is how the AI works. All the drugs used to keep us alive are not nice and do have some nasty SE's but while they work and give us a reasonable QOL we keep taking them as the alternative is a bit too scary.
Peace, strength, love n hugs to you. chrissyb
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Thank you Hihopes, Marybe, and chrissyb, You all have helped me feel better about my treatment. I am so glad I found this thread. One maybe dumb question.. What is NED? I am assuming this is a good thing, but have no idea what it means.
On a lighter note about all of the SE that all of these drugs cause I have a very, very good one. All my life I have been allergic to chocolate. It always gave me severe migraine headaches and a rash all over my body, anyway I mistakenly ate something that had chocolate in it. (At a party and it did not look or smell like it had chocolate in it.) Anyway there was not headache or rash, so I tried eating a bit of chocolate on purpose and surprise no headache or rash. I have gone on to sugar free hot chocolate and sugar free brownies and still no headache or rash. YEAH!!! I can eat chocolate! Now I know what everyone has been raving about all these years.
I still have considerable pain in my ribs and spine so the onco has made me an appointment with the RO on the 28th to see if he can radiate the spine to help relieve some of the pain. The theory seems to be that if they kill some of the cancer cell in the spine then the Aredia will have a better chance to help the bones there heal and the pain will ease. We will see if the theory matches reality. I am a little nervous about the radiation, but everyone says it will be fine and I will not come out looking like a red polka dotted ghost. ;-) (I am very fair skinned and have always tried to avoid the sun as I burn easily.)
Hope everyone has a restful evening.
Amy Jo
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Amy Jo, NED means No Evidence of Disease or Remission and yes, it's a very good thing...lol. Don't fear the radiation as you feel nothing while its being done and it takes just a minute to do and it does relieve the pain from the bone mets. Oh by the way, there is no such thing as a silly question on these boards so feel free to ask anything that you are not sure of.
Peace, strength, love n hugs. chrissyb
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Chrissyb - thanks for the explanation and the encouragement about the radiation. What great news to get. Hope you stay NED for a very long time. Maybe I will get there someday.
I am off to the physical therapist then lunch with my DH then for the final post-op visit to the doctor that put in my power port. After that if I am still functioning I will do some shopping and go by the train shop to get my mini train (Z scale) fixed before Christmas gets here.
Hope everyone has a good day today. Amy Jo
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Hi Amy and Hihopes....welcome to the SS Mets Cruise Line - all you are feeling is totally normal - you might want to look up 'Money and Newbies' in a search and you will find links to abbreviations used on here and tons of stuff on financial issues that you may not have even started to think about.
It took about 4 months for me to stop crying all the time and come to terms with this dx - I was treated with Arimidex and Aredia and the se's are, well, fun (NOT). There is a thread specifically on Arimidex and solutions to its se's. You are both on the standard of treatment - it was rather shocking to me too that the big guns didn't come out right away but with such good results on kinder treatments, it sure makes a difference in the quality of life and many live with stage iv for years without having chemo. Oh, and don't be fearful of asking for something for the mental health - even for your loved ones. If stress levels are too high, you won't be sleeping and not sleeping is not healthy for anyone.
It seems if you are having a real serious amount of pain in one area, they will shoot that one area with a bit of rads in hopes of reducing the pain. From those that have posted, it does and makes a huge difference. I have pain but manage with percocets. We are talking of hitting this one stubborn lesion with some rads if it hasn't stopped it crap - I have resolution and stability everywhere but this one spot so we shall see.
Amy, check out the rads thread - some have a cream they use before to minimize burn, if any.
There is tons of good info and support on here...no dumb questions and sometimes some silliness - all in an effort to get us all through this crap!
Hugs and best to you both...LowRider
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Lowrider - Thanks for the welcome and all the information. I will be checking it all out.
As if BC was not enough, I found out this morning that my step-mom passed away this morning. I have spent most of the afternoon rescheduling appointments and making reservations to go home to TX on Wed. The funeral will be Fri. and we will head home on Sat. My DH is going with me as this will be challenging since my sister and brother know nothing about my cancer. And I don't want them to know just yet. I plan to tell them after we get the estate settled. The reason is a long story and a ton of dysfunctional family history. I may not post for a few days because being around my family has always been exhausting mentally, emotionally and physically.
Tomorrow will be busy getting all the last minute detail done to that we can be gone. DH has to get payroll done at his job and I have a lot of errands to run.
Hope everyone has a restful evening.
Amy Jo
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At my last treatment I ask about the double dose. The nurse told me I have been on it for several months. Perhaps that is why my tumors were kicked in 7 treatments. Praise God!!!!!! I am still on the same treatments for maintenance.
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Woo Hoo donsuzbee! Great news!
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I finally got some news that doesn't suck!! My scans from a couple of weeks ago were 'stable', so no chemo for me, at least for the short term. I'm prepared to keep my new best friends arimidex and zometa around for a long time. LE therapy going well too. Insert happy dance here!
Steady as she goes......
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Alex,
That's terrific news! Hope the AI meds work for you for a long, long time!
Lane
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WOO HOO Alex! I hope you continue on this positive path!!
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Excellent Alex...hoping this is a long, long run on the AL meds!
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Just got this month's blood markers. To refresh, I have now had 6 months of Faslodex injections, along with daily aromasin. My CEA number is down to 4. I have never seen a 4 before, even when I was cancer-free. My previous low was a 5.1. But the big news is the CA27.29 which is now down 31% from my high, and 20% from last month. I think this is good news!
I am going to ask for a repeat PET scan to determine if the numbers are accurately reflecting what is happening inside my body. Cautiously optimistic that this protocol is doing its job!
*susan*
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Susan,
That is TERRIFIC news. Hope the PET scan coincides with the markers.
Lane
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I went to my ONC today and had more blood drawn to see how my tumor markers are looking. I noticed my cancer is changing on my affected breast and decided to show my onc. He has me scheduled for Doxil IV's November 4th. Stopping Tomaxifen and Zoladex because they don't appear to be suppressing my cancer after 6 months. My onc said sometimes the hormonals only suppress cancer growth for a short time. I have IBC, stage 4 with bone mets. October 23, 2010 was my one year anniversary of my cancer dx.... and here we go again...
Have any others just taken Doxil stand alone IV's with the premeds for their Stage 4. Have you lost your hair? I have about 6 months of hair growth from my Taxol treatments back and I really hope I won't lose it with the Doxil.
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