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Hormonal Treatment for Stage IV

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Comments

  • Elisimo
    Elisimo Member Posts: 1,262
    edited October 2010

    Alex - great news. Hope the AI meds work for a very long time.

    Susan - what wonderful news, here is hoping the PET scan shows the same and the markers.

    I had to postpone my rad appointment for my spine until Monday to fly to TX for my mom's funeral. The worst part of this whole thing is having to deal with my family.  I am glad my DH is with me to sort of run interference.

    Hope everyone has a restful evening. Joy and blessings, Amy Jo 

  • joaniji
    joaniji Member Posts: 12
    edited October 2010

    Hi all,

    I have a question for Susan -- I have never heard of taking Aromasin and Faslodex together.  It was my understanding that one hormonal is used at a time.  You seem to be having wonderful results from using both.  Would you mind saying a bit more about your treatment plan? I just switched from Aromasin to Faslodex due to some progression in my bones and a node; if I would increase the chance of stability by taking both at one time - that would be great.  Thanks for your input.  

    Thanks, Joani 

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited August 2013

    Joan,

    I have posted about this before, but heck if I could find that post now! So yes. I started taking aromasin on Dec 15, 2005 after my initial treatments were finished. Since I was part of a Phase 3 study, I was followed very closely, plus my oncologist had a "hunch." About 16 months ago, my blood markers started to rise, and we did CT and bone scans but nothing was found. 6 months later, the markers were now up a drastic amount more. More scans, but this time they did a PET. Bingo!

    So, the way Dr. Roger explains this, there are two estrogen expressions: A and B. Aromasin, Armidex and Femera shuts down the A expression. The Faslodex shuts down the B expression. He believes that shutting down both, in my case, will retard the progression and give me more time before chemos are required.

    I can't find a study that indicates this is a known protocol, but this guy is one of the tops in the country. I know that he is intimately involved with research protocols happening all over the world, and keeps up on all the latest news. I trust his "hunches" and am going along for the ride.

    So, though I progressed on aromasin, he believes that it was the B expression that caused this, and felt it was important to shut down both expressions.

    I hope I explained this well enough.

    *susan* 

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited October 2010

    Another oncology appointment, more information. I asked Dr. Roger about the double dose Faslodex after having confirmed that I have been getting 250mg. His response was "you are in best position. slow, lazy cancer that responds slowly to treatment, but you are responding. the numbers look great. since you are responding with the 250mg, we will keep you there. when we start to see your numbers drifting up again, then we will go to double dose." He further stated that by holding back now, he hopes to additional time on the drug when I really need it.

    I also asked about a PET scan, and once again, he didn't think it was necessary. "We will miss that BEST scan but there is no reason to subject your body to that now. If the numbers start going up, we will scan again."

    So there you have it. A very happy oncologist indeed!

    *susan* 

  • joaniji
    joaniji Member Posts: 12
    edited October 2010

    Hi Susan,

    Thank you so much for posting the information on your treatment.  I will definitely bring your plan up to my oncologist!  I am so glad to see that your oncologist is happy with how you are doing but most importantly, that you are satisfied!  Best wishes, Joani 

  • Elisimo
    Elisimo Member Posts: 1,262
    edited October 2010

    We will be headed home tomorrow from TX,  I will have to call the RO first thing Monday morning to reschedule the appointment I had to cancel last week.  After that I need to call the PS and the dentist to reschedule those appointments.  I have to also go see the onco about my RBC which was low enough that he wanted me to have a transfusion or a shot of something that I do not remember the name of.  Any way I refused to do either at that time and told him I would take iron pills for a few weeks and then if my count was still low I would go get the transfusion.

    They keep telling me to keep my life as close to normal as possible, but I no longer remember what normal was like.  If I ever get into a normal like I think I will write a book and title it, "So You Call This Normal!"

    Hope everyone has a restful evening.

    Amy Jo 

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited November 2010

    Amy Jo...I call it my 'new normal'.

  • hihopes
    hihopes Member Posts: 10
    edited November 2010

    Amy Jo:

    My family and I also call it the "new normal"!  There are things that are more of a challenge to do now, but many more that I can do as I normally would.   It is a process and you have to give yourself time to make that adjustment.  Hang in there, it is amazing when you do get that feeling of "hey, I can do that again"!  Even if it is just bending over to empty the dishwasher!!.

    Regards!

  • lwd
    lwd Member Posts: 234
    edited November 2010

    Hello Hihopes,

    Sounds like we're in a similar situation.  I'll turn 61 in Feb. and am on Femara and Zometa (once/month infusion).  Minimal SE's.  Sometimes I don't feel great, but this is doable for me.  I'm grateful to have this combo work for me for 21 months.  I, too, did lots of research on my treatment and have come to the conclusion that with my hormonal status, this is right for me.  Let's hope the AI's work for us for a long time!

    Best wishes,

    Lane

  • hihopes
    hihopes Member Posts: 10
    edited November 2010

    Hi LWD:

    I will be turning 61 in 2 weeks - My goal is to get to at least 65 so that I can collect Social Security benefits!!  LOL!  I have few/minimal SEs from Femara and monthly Aredia infusion.  I feel so lucky that these two treatments are working for me and fingers crossed they will keep us both going for a long time.  I have always been a 'positive attitude' person - I know it didn't stop the cancer from invading my body; but I will not let it invade my spirits!!  A while back I read a thread called "Unfortunately.....but Fortunately" I loved that  and I keep it in mind whenever I go for dr. appts or tests. 

    Regards. 

  • lwd
    lwd Member Posts: 234
    edited November 2010

    Hihopes,

    I think we'll both make it to 65!  That's my goal for now, then, it'll be 70!  I went on SSDI a year ago.  I retired 3 years ago, then applied for SSDI a year after I was diagnosed.  Decided to start collecting early, "just in case."  I might still work part time, when the opportunity arises.  For now, trying to do as many of my favorite things as possible.  Doing well after 2 years of this. 

    Hope you have a wonderful BD, and many, many more!

    Lane

  • Elisimo
    Elisimo Member Posts: 1,262
    edited November 2010

    LWD ad hihopes - I will be 61 in 5 weeks and I too am on Femera and monthly Aredia infusions.  I hope this works for us for a very ling time. My red blood cell count was really low at my last check and the onco wanted me to either get a transfusion or shot of another drug that i don't remember the name of.  Anyway I refused both and opted to take iron pills for a while and see what my count was later and agreed that if it was still down then I would get the transfusion.  Have either of you had a problem with your rbc count?

    I am scheduled to go to the RO tomorrow for the pain in my back from the bone mets there.  This will be my first radiation appointment and I am not sure what to expect. Everyone has told me it is not big deal and that everything will be fine and it will help the pain. So I am not sure if I am glad about this or not.  Tomorrow will tell.

    I am glad I have met some others who are on the same track as me.  There is comfort in finding others in the same boat you are in.  Just wish we did not have to meet in this boat.

    Hope everyone has a wonderful day.  Amy Jo 

  • lwd
    lwd Member Posts: 234
    edited November 2010

    Hi Amy Jo,

    I haven't had problems with red blood cells so far.  I had radiation after my lumpectomy 13 years ago with no SE's whatsoever, except for a little breast tenderness.  haven't had it for my sternum, which is where mine metastasized.  From what I've read, though, it really helps the pain.  The worst part of my previous radiation was looking for a parking place every day!  I didn't find out until later that they had valet parking!  Jeez!!  Didn't even feel sick enough to ask about it.

    Happy birthday in 5 weeks.  Ha, ha - You and Hi hopes are older than I am!!  My husband is 5 days younger than I am and always gives me a hard time for those 5 days.  Here's my excuse to pass it on to someone else!  Nice to meet you both.  Let's hope for a long, long friendship.

    Lane

  • Elisimo
    Elisimo Member Posts: 1,262
    edited November 2010

    Well the RO appointment resulted in a new pain med and another complete bone scan on the 9th and then radiation will start on the 11th.  There will be 10 treatments to the places on my spine that are causing the most pain. 

    LWD - I don't mind being older ;-)  My DH is 5 years older than me. (He will be 66 on the 18th so I tease him about being an old man.)  I hope we can have a very long lasting friendship.  

    Hope everyone has a restful night.

    Amy Jo 

  • hihopes
    hihopes Member Posts: 10
    edited November 2010

    Amyjo49 and LWD

    I also have had no problems with my blood counts.  I hold my breath each month when they take the sample and feel so lucky when it read 'all within normal limits'.  I hope the iron pills work for you.  It scares me each time drs want to add a new drug when I have a drawer full of their little bottles already.   I have not had radiation treatments yet (even after my lumpectomy) my pain is manageable. 

    I am looking forward to my birthday, and hope you both enjoy yours' -  the more the better! 

    Regards

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited November 2010

    I am a bit younger at 56 but we do seem to be on the same track - if my next scans come back with the one lesion in my spine not responding, we are going to talk about rads to knock it back a bit.  I manage the pain with meds and a pretty low dose so it isn't the pain but the fact that with all else responding to the Faslodex and Aredia - this one pesky L3 spot is being stubborn.

    Hope ya'll have a decent weekend...I think it will be the final semi warm one for us here in the soon to be frozen northern MidWest...Hugs   LowRider

  • lwd
    lwd Member Posts: 234
    edited November 2010

    Hi, Low and the 60-somethings!

    My DH just left for a 5-day hunting trip down in southern CO.  So, my Golden and I will be enjoying the next few days at home taking it easy.  Walks, reading, cuddling.  We've had a lovely long fall here.  My favorite time of year.  LOVE IT!  Trying to lose a couple of pounds.  I've gained 5 on Femara.  Have been lucky in that respect.  Think mostly I just got lazy and depressed.  Plus, the post-menopause thing, I'm sure (10 years later!)   Drives me nuts that I have a lump high on each hip and a couple good lumps in the middle.  I refuse to accept it without a full-out effort.  Will let you know how it goes, but I'm one determined girl!  It's always easier with DH gone - don't have to cook for someone who needs to GAIN!   

    Low, have been thinking of you and your upcoming scans.  That's just TOO LONG to have to wait.  And, with the holidays coming up.  Hope you're able to remain in D'Nile at least a good part of the time until it's over.  Crap that we have to live from month to month.  I'm having a hard time even remembering what it was like thinking we still had probably 15-20 years ahead of us.  All of the problems we had back then pale in comparison to this.  But, we must trudge forward.

    Hope you all have a good weekend!  I'll be eating my tuna/bean salad.  Have my monthly onc meeting on Wed.  I'd better have lost at least 3 pounds by then!

    Lane 

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited November 2010

    Lane...it isn't that bad...I get them every 6 months and this upcoming one is 6 months on the Faslodex.  The scan is on the 22nd and I see the onc on the 24th so I will have results quick.  I don't think it would be so much on my mind but since Arimidex failed, I am fearful that the Faslodex may as well - but - if it is still only that one pesky spot - we could keep going on the same treatment and add a few shots of rads to target Mr. L3 and put him in his place! 

    Or, since I don't feel any worse - this double shot could be kicking butt and woo-hoo, I can get a snuggle with the stable boy...that would be sweet!

    Thanks for thinking of me...it is a very nice warm feeling!  Hugs....LowRider

  • lwd
    lwd Member Posts: 234
    edited November 2010

    Lo,

    Hope that double shot is kicking butt right now and will continue to for a long time.  I imagine I'll be on it sooner or later, too.

    Lane

  • khartoregon
    khartoregon Member Posts: 12
    edited November 2010

    Hey there amyjo, I just read your post from the 3rd and I'm also having issues with the red blood count.  I've always had platelet problems, but now my red count is dipping as well.  I've only had 2 doses of faslodex, but I hope it's not that.  Faslodex was my last hope before chemo.  I know lots of ladies have had on chemo, but my feeling is that while it may kick around the cancer it's probably going to hurt me in other places.  Ayyyyy cancer, what a jerk.

    Tell me if the iron works.  I'm on a wait and see process with the onc now, but if iron does some good I'll ask him about taking a supplement.

  • Elisimo
    Elisimo Member Posts: 1,262
    edited November 2010

    Well the Fentanyl is working really well and I have not had any allergic reaction to it so I guess we have found a winner.  It is so good not to hurt all over my body.

    I have not gained any weight on Femara, but I have stopped losing it so fast.  But then I have only been on it for 4 months.  

    Hope everyone has a good weekend.

    Amy Jo 

  • Elisimo
    Elisimo Member Posts: 1,262
    edited November 2010

    khartoregon - I did not ask for the supplement I told my onco that I would try it before getting another drug or a transfusion.  He did not argue as he knows with me that is pointless.  I tend to do what I want.  I will let you know if the iron works.  Here's hoping it works. 

    Amy Jo 

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited November 2010

    Amy Jo....yipeee...I am so glad that you are getting the pain relief you needed!  Hope the iron works out as well!

    Hugs...Low

  • Elisimo
    Elisimo Member Posts: 1,262
    edited November 2010

    Monday I went to get the 2nd fill on in my TEs and then my DH had to take me back to the PS office to have 1/2 of it removed due to the severe pain. Today is much better and the pain and no I have to decide what I am going to do about the breast reconstruction and the radiation. I will find out it the AIs are still working and if I need to gat a transfusion on the 16th.  Hoping food news for everyone.

    Hope everyone has a restful evening. 

    Amy Jo 

  • lwd
    lwd Member Posts: 234
    edited November 2010

    Amy Jo,

    Hope you are able to get things back on track and that next week you find out that the ALs are still working for you!  I had some good news today at my monthly appointment.  My TM's have dropped further - down to 18 on the CA27/29.  My tailbone has been bothering me, but he thinks it is probably arthritis, since it isn't persistent pain and I've had aches and pains in different areas since starting treatment with Femara.  So now I've a pain in the ass to add to my ailments.  Oh, well.  As long as it works!

    My onc told me about one of his patients who is now 88 and has been on ALs with mets for 18 years!  They finally stopped working just recently and she's now on a mild chemo pill.  She didn't want chemo, but finally was persuaded by her husband.  18 years!   Not to sound negative, but, damn, 18 years of these SE's??  But, maybe after 10 years or so you feel REALLY GOOD! 

    Let us know how your next appointment goes.  Very well, I hope. 

    Lane    

  • Chelee
    Chelee Member Posts: 36
    edited November 2010

    Amy Jo,

    I had to laugh at your post.  I have been concerned about my tailbone too...it's really been bothering me alot. Since I do have a few bone mets I figured it spread to my tailbone.  Onc ordered bone scan and they see nothing. So like you...I can now add a pain in the ass to my long list of other aches and pains!  I wonder if Femara can cause tailbone pain?  (I think I'll go check out the Femara website and look thru the SE for a ass pain.  lol  If I don't see it I will call the makers of Femara and ask them to add it. lol

    Love hearing about the 88 yr old...that's the type of thing that makes me smile.  :)

    Chelee

  • jamnstv
    jamnstv Member Posts: 3
    edited November 2010

    Hey all!  Newbie making my first post - There is so much info here that I had to read all before I posted. 1st BC in 1993 w/ mod. masc.,chemo (CMF), 18 mos. of Tamoxofen (long story Cry). Now DX w/ mets to lymph system and ovaries. I have been on Femera only 1 1/2 mos., and so far no SEs to speak of.  you all give me so much strength and hope with your experience!  Thanks for being here and that I was able to find you!

      "Do not wait; the time will never be "just right."  Start where you stand, and work with whatever tools you may have at your command,and better tools will be found as you go along."--George Herbert,English author,1593-1633

  • chrissyb
    chrissyb Member Posts: 11,438
    edited November 2010

    Hi Jill and welcome to the boards.  We're not a bad bunch here so feel free to have your say.

    Peace, strength, loe n hugs.   chrissyb

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited November 2010

    Hi Jill...welcome to the club nobody wants to join.  Glad you found us!  So sorry about your recurrence but wow...I thought I did good being initally dx'd in 1999 - you got 6 more years without the beast - still, it is rotten its back. 

    We are here...I am a bone metster only so far and on Faslodex and Aredia - 10 days to 6 month scans to see if its working.  There is life with this dx and it is great that you are not having se's - hope that continues for you but there are solutions to them too!

    Again, welcome!

    Hugs....LowRider

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2010

    Hi Jill

    Welcome!  You wont find a better group to help you along the way.  So sorry that it came back....I know the feeling... I was almost 11 years out.   I joined the group in April....currently on Famara also.  Hope to see you again

    Hugs!

    Robin

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