Hormonal Treatment for Stage IV
Comments
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Once two AI's have failed to halt progression, is it any use trying the third? Anastrozole and exemestane did not work for me at all. My oncologist suggests chemo next, but says it may be possible to return to a less toxic treatment if chemo works well. I assume "less toxic" means some form of hormone tx, and wonder what my remaining options are. I haven't tried fulvestrant yet and was never treated with tamoxifen because I was post menopausal at original dx. Also I have seen some mention of treatment with an AI plus another med and wonder if this can succeed even if the AI failed by itself.0 -
Curveball, I am on letrozole (an AI) and Afinitor (a targeted therapy). There is a thread for this type of combination - most of the women are not on letrozole but rather Aromisin I think. In theory, the Afinitor inhibits one of the cancer cells' metabolic pathways, and the AI depletes the estrogen that feeds them, so they get hit by 2 mechanisms at once. I am doing well on this combo for the moment, have been on it for 6 months with mild SEs (if you consider debilitating fatigue mild...., but that was present even before I started these drugs, so I don't think I can blame them totally for THAT!), have scans at the end of the month so will see how well they are working.0 -
Getting a good run so far on Arimidex (generic version). Started June 28th this year. Already less lesions on scans, lymph nodes didn't light up. Tumor markers continuing to plummet. Hopefully can keep this going for years. Started Xgeva yesterday for the bones.0 -
Wandering, keep up the good work.0 -
Wanderingspirit that is wonderful news! Here's hoping it continues to work well for you for a long, long time.
Love n hugs. Chrissy0 -
curveball, seems like trying another AI wouldn't hurt. You just had chemo last year. Why does your MO think more chemo will produce better results than an anti-hormonal? My MO has told me chemo doesn't work as well on hormone positive cancers, particularity in bones. I started Tamox in July. I had never taken it. I will be adding Afinitor to it. The usual combo as Linda said is with Aromasin but my MO said there are patients doing a Tamox or even Faslodex combo with Afinitor. Good luck.
Wandering Spirit, so happy to hear Arimidex is working. It's nice to hear from women who are having good results and who took the time to share on the boards. Hope the success continues for a LONG time.0 -
@TarheelMichelle, I think my MO suggested that I try chemo because I have already progressed on both of the AI's I've tried. On the second one, the mets also moved into my bones--my skeleton was clear before that. It's true I had chemo last year, but unfortunately none of the scans that were taken before my surgery include the area where the mets were later found, so there is no way to know what effect, if any, the CMF had on my mets. At my last appointment my MO also gave me the option of trying fulvestrant before going to chemo, but said fulvestrant was less likely to work than chemo, and also said if the chemo works I can possibly go onto a less toxic treatment after several months. I am dreading the chemo, but I felt like if I tried fulvestrant and it didn't work either, I would have no options left but continuous chemo for the rest of my life, with the meds always getting harsher and the SE more debilitating. (Dr F didn't say that, it's just the impression I have about stage IV, eventually you end up doing chemo after chemo because all the other treatments had either not worked at all or stopped working.) The thought of being on chemo forever made me feel so hopeless and depressed that I decided to try one chemo now, so I would have some relief to look forward to, treatment wise. I also thought, if I am going to do chemo and feel lousy, better to do it in the winter when I would mostly be holed up in my house anyway. So, I will be starting weekly taxol next Wednesday. I haven't had any of the taxanes before, so maybe the cancer will be really vulnerable to it and get clobbered. I hope so.
It still isn't clear to me whether letrozole (with or without the targeted treatment added) can work, even if anastrozole and exemestane didn't.0 -
curveball, there are some drugs in the clinical trial phase for hormone positive cancers, one is related to androgen. I don't know all the details. Has your doctor mentioned Xeloda? I hate to see anyone fail on AIs, but I hate to see someone fail on chemo. If you did chemo last year, and then this year, at some point you are going to run out of chemos, just like you would run out of hormonal treatment. Chemo is so hard on the entire body. As you can tell from my POV, I am not a big fan of chemo! Although my prescription for Afinitor refers to it as chemo. Taxol is the chemo one of my oncologists recommended to me, but my primary oncologist said I don't need chemo. Do you have huge tumors interfering with your life? My doctor said even though my cancer is widespread, it's not so big that it is interfering with my quality of life, and that's why we can take our time with all the anti-hormonal treatments. When I first got diagnosed with Stage IV and it was in my bones, it was scary, but to me, it's the cancer in my organs that I fear the most, not what is in my bones. I hope the chemo is easy for you and knocks the cancer way back!0 -
@TarheelMichelle, I had mets in my liver and lungs before I had any in my bones. So far they aren't causing any symptoms that I notice--the problem is, they keep getting bigger. I remember hearing or reading about that androgen receptor drug, but I just looked up the trial on clincaltrials.gov and if it's the one I think it is, there isn't a site near where I live. I am also subscribed on breastcancertrials.org, but most of the trials I qualify for are also too far away. I think I will also be disqualified for a bunch of the ones that are left, by doing the taxol now. I guess I need to update my profile and see what's left on my list after that.
I saw a second MO last week to review treatment options, and I also looked around for studies for each of the different chemo drugs that were suggested to me. The second onc did mention Xeloda, but in the main study I found about use of taxol, the fewer other drugs are used before taxol, the better the results (i.e. time to progression and overall survival are longer when taxol is used early in treatment than when it is used after several other drugs). The other suggested options either had no data to say what order they are best used in, or the data showed they worked as well when used 2nd or 3rd-line as they did as the first treatment. Also, Xeloda is a drug that converts to 5-FU in the body. I've already been treated with 5-FU in my original adjuvant chemo, and the mets in my liver were discovered during the 6 months of CMF (although not biopsied and identified as mets until a few months later). I don't have any scan from before I started CMF, so I don't know whether the mets progressed or shrank or were unaffected. The only thing it's possible to be certain of is that 6 months of a regimen that included 5-FU didn't get rid of them completely. I am not a big fan of chemo either, but right now it sounds to me like my best bet to put the brakes on progression. I'm puzzled too by your onc saying chemo doesn't work as well (as well as what?) on hormone-positive cancers. You don't have an oncotype score in your signature. If yours was quite low, that might explain the difference between our oncs' recommendations. What I've heard and read is that hormone treatments can be as effective as chemo on hormone-positive cancers, so they are generally tried first because they usually have milder side effects than chemo. Unfortuately, they didn't work for me. Believe me, if anastrozole or exemestane had kept my mets from growing, I wouldn't be starting taxol next week. But even though they weren't enough to knock the cancer down, maybe they will be able to keep it down if the taxol shrinks those darn mets.0 -
curveball, I didn't do oncotype because I was definitely not going to do chemo. My MO says anti-hormonal treatment is better for hormone positive cancer for the reason you guessed, it's gentler. And because my typing (ki-67, nottingham, whatever) shows my tumors are slow growing and chemo by its nature kills the fastest growing cells. Taxol seems to be right for you, but I'm curious about the study results that show Taxol does better when used as a first-line treatment. It seems only logical that any treatment would produce better results in a cancer patient when it's one of the first ones used. If a person's cancer has not responded to five other treatment, the success rate of subsequent treatment would not be expected to be good, right? My thinking is less than clear of course with all my pain meds. At any rate, wishing you the best with Taxol.
You don't have any symptoms from your mets? Are you tumors large? That is another thing that puzzles me. If you aren't in any pain or discomfort, why is more chemo recommended? I'm guessing that your tumors are large? My lung tumors are less than 2 cm, and the SUVs for my bones and other spots aren't off the charts. But I am in lots of pain which I manage, but only by staying on pain meds 24/7.
Maybe soon there will be a clinical trial closer to you. Don't discount traveling a few states away for a study if you feel like it could help you. I travel to NYC every 3 months from NC because I want to be treated at a cancer hospital with the top research center in the country. I could not afford it without Corporate Angels Network flying me there, or getting reduced rates on accommodations. If you feel up to travel, you could get some help getting to a place outside of Washington State.0 -
@TarheelMichelle, the studies I'm referring to are this one about taxol (see the section on Response) and this about Doxil (see Results). It seems reasonable to me also that any given drug would work better used early in treatment than used after several other tx have failed, but unless I'm reading the studies wrong, this wasn't the case with Doxil. That's why I decided to leave Doxil for later. My onc gave me four tx options to choose from: taxol, Doxil, Navelbine and fulvestrant. The second onc I saw added Xeloda to the possible treatments. Fulvestrant was only on the list at all as a concession because of my travel plans, but that's no longer a factor--since I saw Dr F I've been on the trip and come back home. Another reason I decided to bite the bullet and do the taxol now is that from my reading here I have learned that fulvestrant can take a while to kick in. I've been getting scanned every other month since my stage IV dx, and I suspect I'll be on that schedule until a couple in a row are stable. I don't want to start fulvestrant and then only wait two months before checking for progression. It seems to me like that is a recipe to lose it as an option. I'm hoping if I have a good response to the taxol, I can try fulvestrant all next summer and maybe give it three or four months or even longer before deciding if it's working or not. The only studies I've seen on Navelbine or Xeloda are as 2nd or later chemos, so I'll leave them until later too. The second onc is also suggesting I take a bisphosphonate since I now have bone mets, but I haven't made up my mind about that yet, and if I do it, I'll wait until after the first few taxol tx to start, so it will be easier to track down the culprit for any side effects.
I don't know what's considered a large met. My biggest one is about 4 cm x 2 cm, in the liver. There are one or two more 2.5 cm, a few smaller but measurable mets, plus what I call speckles and the radiologist calls "too small to measure, too numerous to count" in my liver. I have speckles in lungs too--they haven't been biopsied but are suspected mets. I forget how big the bone met is, and there is a suspicious spot on another bone as well. I also had a lymph node that got bigger from the previous scan to the most recent one. I don't know how to say this any more clearly...Dr F recommended chemo because hormone tx hasn't kept the mets from getting bigger. I assume if they continue to grow they can't help but start to cause problems at some point. Dr W (the second onc) said either taxol or fulvestrant would be reasonable. I would love to be able to stay on hormone tx but so far it isn't getting the job done.
There is a top research center--Seattle Cancer Care Alliance--about an hour's drive from here. I've seen them for a second opinion earlier in my treatment and they agreed with Dr F's recommendations. I may be able to consult with them again later in treatment. I would consider traveling a few times to be in a trial, but the ones I've ruled out require several visits per month and I'm not willing to be away from home that much. I'm pretty much a stick-in-the-mud, and travelling that much would just be too stressful.0 -
curveball- So sorry that you are faced w/these decisions as many of us are. I am in somewhat of a similar predicament and could not complete the 5 years of Aromasin. I did about 18 months of three of these type drugs which left me in crippling joint pains. I did not get RADS untiI recently so I think it all depends on your quality of life,age and support somewhat. As a retired RN I feel that hopefully I will know when enough is enough. I am also in west WA area for the last year after moving to be closer to grandkids. I am supposed to start the Faslodex shots soon and not looking forward to SE.
Hugs - I will be saying a prayer for you too.0 -
Thanks for the info curveball, I have a better picture. MOs seem to be most concerned when it's in the liver and that's where yours seems to be centered. Thanks for the links. One day I may have to do chemo and I want to be as well-read as I can.
I am on Xgeva for bone strengthening, but I honestly can't say that I know if it's helping. It's not stopping progression. And I don't really know the statistics of how many bc patients it's helping. It just seems like they are throwing it at us because it seems like a good idea.
Wishing you great results with Taxol.
I wanted to share this info on Faslodex from another post, by wardells, a researcher.
http://community.breastcancer.org/forum/8/topic/806200?page=5#post_3691859
Fasolodex is an interesting drug. It was really designed to be a research tool, and it has horrible bioavailability. that means that it is not well taken up by the body. despite the fact that we administer huge injections, we can really only reach about 30nM in the plasma, and when you consider that we use 10-100 nm in the dish in tissue culture, that tells you that it is barely making it (in some patients) to the point that it would be effective. that means that i am not convinced that patients that do not respond to faslodex are really resistant - their tumors may have just never received enough drug to feel it.0 -
hi all,
A word about bisphosphonates, such as Zometa and Aredia. They are indeed bone strengtheners and there was some evidence to suggest that they also had some properties that inhibited bone mets but it turns out that there is little to support this. In addition, the risks of ONJ and femur fractures increase the longer you are on it. Women with bc mets were often on these drugs for years. Oncs are now re-thinking this and giving shorter courses mainly for bone strengthening not as a drug to stop/slow mets. I had Aredia infusions monthly for a year and then every 3 months for the second year. As a matter of fact, had the last infusion this past Thursday. My onc was quite adamant about this so it's just Arimidex for me now. Here's hoping...
Caryn0 -
I'm sure the answer is buried within 42 pages but I've gone through a lot of them and haven't been able to find it. Can some of you tell me how long you were on hormonal therapy before you noticed starting to get pain relief from bone mets?0 -
not sure who you're addressing this question to. I had no pain with my bone met but did rads x15 and have been on Arimidex for 2 years.0 -
exbrnxgrl, I guess those who have had pain from bone mets and started on hormonal therapy. I'm wondering how long it takes to start getting some pain relief0 -
In February I will be 3 years on anastrozole. I have remained stable so far. Just had my first injection of Prolia for strengthening my bones which are at high risk for fractures. I still have SEs especially in knees, and am also anemic. I assume the AL is causing the drop in blood numbers. Does anyone have the same problem? I really hate this daily fatigue.0 -
I have been on Arimidex for 2 years. I haven't had problems with anemia, but am more fatigued in general. I also teach first grade, so that may be why I'm fatigued:)
I just had my last Aredia infusion, 16 altogether over 2 years. I don't think that contributed to fatigue. Hope you find the source of your anemia soon.0 -
Hi Ninalee I did Arimidex for only fifteen months as the SE's were so bad that my onc changed me to Femara. I didn't and don't have low blood count but with these drugs it wouldn't surprise me if they were the cause. I'd speak to my doc about it if I were you and see if he/she can't give you a reason for the low count.
Glad to hear that it's keeping you stable and I hope it does for a long time.
Love n hugs. Chrissy0 -
My MD and MO both have seen the numbers going down a little at a time, but no comment except to say 'now you are anemic.' I will ask questions when I see my onc in January. They don't seem particularly concerned. Arimidex isn't exactly chemo, but still a powerful drug. I did find an article that said blood is affected in about 4% of the patients. Thank you for reply Chrissy and exbrn. Hugs to all.0 -
Has anyone changed from Femara to another AI and felt better? I have been on Femara since January, and felt fine for the first several months, but the last 2 months have been increasingly hellish with pain. I know that exercise would help, but I just can't seem to get myself out the door every day to walk, and wondered if any of the others are less disabling. Thanks.0 -
Ninalee, sometimes the docs don't acknowledge a lot of the SE's that these meds have preferring to blame something else. Has your anemia been causing you more fatigue? You need to make sure that even your GP is aware of any and all symptoms that are not your norm.
Love n hugs. Chrissy0 -
Chrissy, I believe you are right. Sometimes I get the feeling that they are just as confused about what is causing what. The fatigue is new and I'm not used to having to rest so much. I see my GP on Friday, and I will definitely bring it up. The last time we talked about it I thought he might recommend something or at least give his opinion, but he just made note of it and moved on. I'll let you know.0 -
Linda-n-3 ..I had to stop all of three HB pills after 18 months of non ending joint pains and stiffness. Aromasin-Arimedex and Femara. As soon as I would be off for two weeks my pain and stiffness would ease up. I was trying to work full time too. I am back on Tamoxifen now after my BC returned to lymph node this summer. I hate it but trying to stick w/it.
Ninalee- as Crissy mentioned the anemia can for sure cause fatigue. I was not anemic on any of the HB but was during chemo and got the Epogen shots. If yours was to get below a certain level I think your MO may suggest these shots.0 -
Epogen has some potential for serious adverse effects, so if you talk with your doc about it, be sure you really understand the risks involved!
Grammy, I was on tamoxifen to start with, could not tolerate it at all - hot flashes that made me nearly faint, more pain than current meds, more emotional issues - stopped taking it after 2 months. MO was very passive about it, so I was "unprotected" until recurrence a few months later. My new MO is more honest with me, and I will talk to her next month - I got a 6-week reprieve at my last visit, and I sure as anything am NOT going to go in to see her sooner than that!!!
So will deal with issues for a few more weeks.0 -
That has been my experience too chrissyb0 -
Linda, I switched once from Femara to Arimidex for a month. I felt a lot better but decided to continue with Femara. I am now on Tamoxifen and did have worse hot flashes, rashes and mood swings as well as vaginal discharge. Otherwise I feel great. Now the side effects are tapering off.
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Chrissy, I did talk to my GP concerning my anemia, and he believes it is from the arimidex. The numbers aren't low enough for it to be too concerning. I will see my onc in January to see if she agrees that it is from the AL. I wouldn't have complained if it hadn't been for the fatigue. I don't know why that bothers me so much. I have always been energetic and this sleepy feeling just keeps reminding me of the C.0 -
Ninalee did he suggest taking an iron supplement? I know when there have been times throughout my life when my iron was low and I was anemic that was always the first thing suggested. It can cause some constipation but if you make sure you up your dietry fibre a bit you should have no problems...........and the best part is it does boost the energy level a bit.
I hear you on the 'once were very energetic and now are not'........lol.......it's hard to get used to but adjusting to new things seems to be how we must live with stage IV. I have bursts of energy and then pay for it for days after so try to keep things on a pretty even keel and just accept that I can no longer do what I used to. Good luck with your Onc visit.
Love n hugs. Chrissy0
