Hormonal Treatment for Stage IV
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Not sure if this is the right place to ask but I have been diagnosed with IV stage after doing everything possible to keep this disease away. For now I do not have all the results of my scans but basically tumor is in my scar line and wrapped around my muscles and it is very large. I have started tamoxifen for now and just wondered how soon anyone could tell if their tumor was shrinking? It might be a silly question but when I was doing chemo it shrank very rapidly I just wondered how quickly this would or would not work. I do not see my oncologist until the 1st of April and will get more information then. Thanks for listening
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I was told that there was a three-month window to see if an AI is working. I wouldn't be surprised if Tamoxifen had the same time frame. Perhaps someone will chime in. I have never taken Tamoxifen so my knowledge isn't tremendous. Just didn't want you think no one was listening.
A scar tumor would be considered a recurrence, which is statistically better than remote mets. But of course, none of this is good.
All the best, *susan*
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joey50210 - I have no word of wisdom or experience to tell you what to do but you are alway welcome to bring anything up here. Someone will come along that will have some good advice for you. Until then know that you are in my thoughts and prayers. Amy Jo
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Hi joey50210 -
I am on Al's for bone mets and get scanned every 6 months. 3 - 4 months seems the norm for seeing results but some happen faster, some happen slower - it took a change at the 8 month mark and then an additional 7+ months on the new Al for me to be declared stable. We talked about switching to Tamoxifin if the Falsodex does not work (I started on Arimidex).
Hang in there! A local recurrence is better than a distant recurrence and around scar tissue from the initial tumor location is better yet - none of which is good but your prognosis could be much better than most at stage iv...I wish you the best and do keep us posted!
Hugs...LowRider
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Thanks for responding, I feel like I am loosing my grip here somedays. I do not see my oncologist until the 1st of April because he was on vacation so his associate saw me and started me on tamoxifen but no results of any of the tests. Seriously I am not good at waiting, my mind wanders all over the place, especially at night when I would like to be sleeping.
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Oh boy...we 'wait' a whole bunch here - we call it 'scanxiety'. Myself, I try to float down D'Nile for awhile when I know scans are coming and I won't hear about all the results for a week. It can be nerve racking - everyone has a different was to deal with the waiting...I am sure more will come on board to let you know what their 'trick' is to get through that uncertain and very fear-filled time.
I hope all is good! You could ask for a sleeping aide or an anti-anxiety medication - I have the anti-anxiety meds and a mild anti-depressant that does help keep my 'never shuts off' mind somewhat dialed down at night.
Hugs to you....LowRider
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I'm in prescription shock. Last year my copay on my arimidex was $45. I switched to the generic when it came out but broke out in awful HUGE red pimples (boils). Went back to non-generic and it went away. This year the Arimidex has been move to another category with my insurance and I now have to pay $185 a month instead of the $45. So I'm not stuck with the decision of take a second job (if I can find one) to pay for medication or switch to generic that causes me to break out in the HUGE pimples. Does anyone know if there is a difference between generic makers? Maybe if I try a different maker of the generic it might make a difference????
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The thing with generics is, you get what your pharmacy gets, which is generally the cheapest provider available. I am required to use an online RX in order to get my 50% prescription price. Aromasin is costing me about $250/month.
This is the time of year that we get new policies, and the sticker shock can be earth shattering. Wish I had a suggestion.
*susan*
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Frapp - susan is right that the pharmacies are limited in the generics they get. It never hurts to ask if they have a generic from a differenc company as there is a difference in the formulations of the generics and there may be one that will not cause you to break out in pimples. Another option would be to contact the drug manufactor to see if they have any kind of program to help patients pay for the particular durg you need. Most of them do, especially for the cancer drugs. It is worth a shot as I only pay $10 for my Femara instead of the $82 that is the portion that my insurance does not cover.
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I was diagnosed in december 2002 with stage III. After undergoing chemo, radiation and cobalt therapies, I took tamoxifen from 2003 to august 2010 when I discovered bone mets and contained, minimal pleural effusion. My onco switched to Bondronat IV and Xeloda. In February I started Bondronat oral tablets every other day. I ebdured the fasting and the need to stand for 30 mins after taking it without anything to drink...developed shortness of breath upon my home coming to my province where I live with my husband and our youngest son who is a teacher. When I cam back to Manila, they discovered massive pleural effusion and low platelet counts. I was subjected to a CTT in my thorax to remove water...I still have the tube with me here. Just today my onc gave me new hope: FEMARA. still hoping for the best. May God's blessing be with us always...Im now on my 8th year0
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teachersally - Glad you found us, hope we can offer you some encouragement and support.
So sorry you have had such a rough time with everything you have been through. I am on Femara and it is working fantastic for me. You did not indicate so, but I am assuming you are ER+/HER2+ hince the tamoxifen and Femara. I also take Femara and I take Aredia IV every month due to the bone mets. It supposedly is to help strengthen the bones. Hope you have excellent results with the Femara. There is another lady on here that is in her 13th year now and going strong. Her name is Marybe and she is Stage IV. Sending {{{{{{HUGS}}}}}} and prayers your way. Amy Jo
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Amyjo I was just diagnosed Stage IV on 3/24 and started on Femara and Zometa on 3/29. They will keep me on these and scan in two months to see if it's working. I hope and pray I have great results too!
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Cathy2 - I hope you have good success too! I have been on Femara since 8/23/2010 and my numbers for the CTMC (Circulating Tumor Marker Count) and the CA27/29 have continued to drop every month. {{{{{(HUGS)))))) to and prayers your way too.
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Faslodex No 11 is behind me [yes, that is a pun. please at least smile.] Numbers went down again. Just a few points, but down is down.
Not having any fever this month. no sign of a rash and no fatigue. Who knows why this changes from month to month, but I am enjoying the absence of feeling suckiness.
*susan*
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Susan, that took me a looooong time to figure out. Lol! My Femara brain is not so funny though. You can put the winter suckiness behind you, too. ;-) Great to hear about lower numbers!
Teachersally and cathy2, good luck on starting Femara. Have been on it more than three years now.0 -
Great news Susan on numbers going down and feeling better! Thank you amyjo and heidihill for your support. Sending everyone ((((hugs)))) and prayers!
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Susan - great new on the dropping numbers. Prayers that they keep coming down for you and that you do not have anymore SEs from the Faslodex as you get more behind you.
Cathy2 - we are all here to encourage and support each other. Keep us updated on how you are doing.
Teachersally - How are you? Missing you here. Hope all is going well for you. ((((((((((HUGS)))))))))) Amy Jo
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I'm a newbee to this site and really appreciate all the information everyone is providing. I have mets to the liver (July 2009) 8 years after mast. I've done 9 months of chemo this time around, then femera and it stopped working in December 2010 much to my surprise when I awoke to a period after not having one for 4 years! I was given a Lupron shot and then they added faslodex shots. Even with a lot of junk in my trunk - faslodex still sucks! I had the rash, sore rump and plain pain after my 2nd injection. It woke me from a deep sleep at least once a night for a week. I also just found out my marker has gone "up" even though I've had 3 faslodex injections. It was up in Dec,higher in Jan, higher in Feb and now its still rising. I was told it sometimes can take awhile to come down, but I was surprised to find out it had still gone up. Has anyone else had this type of experience? After my chemo and femera, my number went from 900's to ZERO - now its on the rise! My last scan showed a very small new tumor in my liver - all the others (5) were stable.
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Concon13 - Sorry you have to be here, but glad you found us. I have not had faslodex, so I'm not help there, but someone be along shortly that will help. I am taking Femara and my numbers are really dropping drastically since August 2010. Marybe may have some answers and encouragement for you as she has been dealing with BC and all the mets for almost 13 years.
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I am going through my third round of chemo. I was originally diagn. in 6/2003, mas,chemo,rad. I was ER/PR+. I was then put on tax in 2004 then switched to arimidex two years later. I found out in 2007, I have the brac2 gene. I had reoccurence in 9/2009 mets to bones and liver stable , chemo for 5 months, then faslodex. It stopped working, and diagnoised again in 3/2011. So now in same chemo since it was effective in stablizing mets last time. I am wondering what hormonal treatment I will have now. Reading through the whole thread, I guess I am hoping to go back on tax or try aromasin since those have worked for many people. I guess the funny thing is that new liver mets, a few, instead of the over 30 from the 2nd time, were found on a CT scan. My Ca15-3 was normal but was double since the lowest it was when I stopped the 2nd treatment, 11 to 22. It is now 29. but the funny part is that it is still normal because above normal is 31. Anyone else have this problem with their blood work? I have been on Zometa since Oct 2009. Do not have any problem with it.
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poohfan - so sorry, it sound like you have been through a lot already. I am currently taking Femara daily and Aredia IV monthly. So I have no idea about all the other chemo treatments excpet what I have read here. Hopefully there will be someone along soon that has some good information for you.
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concon13 - I was on Faslodex for a year and hated it as well. Mine obviously stopped working at around the 9th or 10th month. My ct scan is what show that there was new cancer cells. The old ones were still stable. I will not go back on it. I heard that some people of gone to double the dose. The cancer marker they measure for me is the CA 15-3. Mine did not go up. so can't answer the question about going up for three or four months before your levels going down. Hopefully someone will read the thread and answer your questions.
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Hi everyone,
I will have my 6-month PET on Mon., but so far I've been on Femara over 2 years now and am enjoying NED for almost 2 years. I've been very fortunate, but realize things can change in a heartbeat. My TMs began dropping after 3 months on Femara, and have lingered in the teens for almost 2 years now. I recently switched from Zometa to Xgeva due to a little kidney impairment after 2 years on Zometa. Hope the Femara works for you, TeacherSally and Cathy2. Heidihill and AmyJo, so glad to hear it is still working for you! It gives us all hope.
Susan, glad your TMs are down again, and hope SEs dwindle away to nothing. Faslodex is on the list when Femara stops working for me.
Happy Easter to all!
Lane
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Poohfan, You may not have any hormonal treatments, it just depends on if they still work for you or not. I do know there is a progression in the usage of them...tamox for pre-menopausal then on to arimidex, aromasin, faslodex.....my onco I think told me aromasin is the same as femara. Anyway, they stopped working for me and that was when I moved on to chemo, but when I went to MDA he wanted me to try the hormonal again because there is a theory that if you have been off of them long enough, sometimes they will once again work....but alas they did not for me. Unlike a lot of women, I really did not have bad SEs with them at all. Sure, I had the hot flashes and the night sweats and bone aches and pains, but compared to chemo SE's I would gladly take any of those I mentioned. This will be something you onco should decide, but I am never afraid to ask What's next? I am starting a new chemo in May and will still be getting Xgeva for my bones.
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Marybe, I will be alternating between chemo and then hormone theraphy. When as you said the progression stops working, I will go on chemo again to shrink or hopefully kill the new cancer cells. I am curious what is next after faslodex. I will ask about femera or aromasin. I don't have any side effects either so far with the hormone therapy. Thanks.
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To confuse you even more, I am on a new protocol which includes both an AI' [aromasin in my case] and faslodex at the same time. It has been doing me well.
*susan*
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I was on femara for a year during which my numbers went down to zero and my scans showed the cancer was in remission. Last June the tumor in my breast started to grow again even though my numbers were staying stable so we (the doctors and myself) decided it was time for the masectomy. After the masectomy in September I switched to falsodex since the tumor started growing back on the femara. Every month for four months my tumor markers and circulating cancer cells kept rising and the doctors told me I had to keep the faith because falsodex can take 4 to 6 months to kick in. After the 5th month of rising numbers I had another set of scans done and found that I now have multiple bone mets and liver mets (first time for these). Needless to say I have stopped the falsodex injections and began taking xeloda a month ago. I have a lot of faith in my oncologists and I know that they trully believed that the falsodex was going to kick in but looking back I wish we had the scans earlier to see that it wasn't instead of dealing with the pain in the butt shots for 5 months when they weren't doing a bit of good. I know that many people on this website have had great success with falsodex, it just wasn't the drug for me.
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That's the way this whole deal is....what works for one, doesn't always work for someone else. It's a terrible way to think, but we are sort of in a crap shoot and just have to pray that the treatment they choose for us works. I know I was very fortunate in that hormonal route worked for me for many years. I will say I do get upset with my onco when I have been on something that gives me bad SEs and then after scans,we discover things are progressing, but it's not really his fault because even though he keeps up with the latest treatments and is a well respected onco, he doesn't know if it's going to work for me until I try it....as I said a crap shoot. But I am hangin in and have been for a long time. If they were to develope a new AI, I would be lst in line to try it because of the huge success I had with them in the past and not bad SEs at all. Saying my prayers for all of us and wishing you good days ahead.
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Geez...what a dummy I am...I totally forgot this thread!
Mainly, I wanted to let susan know that with the double shots of Faslodex, the April 15th reveal showed more reduction in the size and number of lesions in the spine so I didn't have to ask to get the Arimidex back as well. Still stable.
I did ask for the new Xgeva - the bone strengthener in shot form rather than infusion that is supposed to work a little better than the Zometa and Aredia and be a bit kinder to the kidneys. Insurance approved it so treatment is a three shot adventure every 4 weeks and labs every other visit.
Marbe you are so right, it is such a crap shoot - I was honestly beginning to feel like I was getting left behind when many of the folks I started with were stable and I wasn't but after 16 months and 6 days and two different anti-hormonals, it wasn't until the double shots of Faslodex started in October 2010 that tumor markers started to drop and finally in January, even markers and scans showed no progression. Its frickin scarey!
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Sharon,
You rock! This is truly terrific. And you are on the retirement-from-work-not-life path. Nothing is going to stop you. So glad that the pieces are falling into place for you.
*susan*
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