17 years since diagnosed at stage IV with bone mets, E + P+ her2neu - mbc. Almost five years on Femara (Letrozole) plus Zometa, then over 9 years on Faslodex plus Zometa, then Xgeva, now over 3 years on Exemestane plus Xgeva. Alot of lymph nodes showing up on scans , had cancer cells found in blockage of ureter. Lobular bc. I've had second opinions from bc specialist oncs at a major Comprehensive Cancer Center twice, most recent about 3 years ago. Had recommendation then for Tamoxifen when Exemestane fails. Since then had Foundation One testing and recommendation for Picray as targeted therapy. Now my onc is giving me a choice. Whichever I don't pick now will be next after the one I do select. My first thought, while meeting with onc was to go with Faslodex and PIcray. I am now almost 75 years old, have heart and lung issues, arthritis, and am really really fatigued. Skin itches like all get out--two dermatologists and an allergist didn't help with that.
Any experience with either of these options? Tamoxifen especially as not first line treatment.
I will be traveling today to the CCC I go to for an echo cardiogram. My local health care system seems to have a very hard time sending records to the CCC (ticks me off big time!)
I know I have been very fortunate to do so well for so long and during this time I have learned alot about self care, not worrying about what I have no control over, and appreciate being able to hear from others with MBC!
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PJBinMI
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You indeed are very blessed to have lived with this disease for so long. I've been at it for 5 years in my body is just exhausted from treatment. I'm 61 and I know many ladies who have MBC have had it way worse than I have in terms of treatment and problems. So I can't even imagine what some ladies go through. I'm on i-brance and letrozole and zomita and have been for the last four and a half years. My first incologist gave me the wrong first line treatment. Faslodex has always scared me because of the shots. Piqray is new and good for your particular mutation though I have heard some ladies do not take it well because of the side effects. I'm sorry I'm not much help. I know what you mean about certain health institutions not wanting to share information well. I had a primary care doctor who apparently didn't like that I left his hospital to seek treatment at another hospital and would never communicate with my new oncologist. I ended up getting a new primary care as well. Anyway my dear I am wishing you all the best in your choice. Your friend from Michigan.
Your getting so long from the meds you are on is very hopeful! I've known several women who have gotten longer from Faslodex than from initial Letrozole. About Faslodex being injected---one of the things I realized very soon after being diagnosed was that I was going to be having alot of shot and that I better get over my fear of needles! I'd had a horrible experience with an IV after my daughter was born and had a kinda PTSD reaction. So I worked hard (in my mind) to become "friends" with needles. That has really helped alot! And I have to tell you that the Faslodex injections were really not so bad. As long as a nerve wasn't hit, there was only mild discomfort and not pain, and I liked not having a daily pill to remind me of cancer, LOL. I hope you continue doing well--you are off to a great start, except of course the issues with doctors! You were wise to change your primary care doc!
I was first diagnosed with stage 2b back in 1994. After chemo and radiation, I was on tamoxifen for 5 years. Had a recurrence about 5 years later.... now I’m 5 years out from the MBC diagnosis at 66. I’ve been on Piqray and Faslodex and Xgeva since Late October. I’m tolerating it reasonably well. I haven’t had much of an issue with skin problems. (They recommend taking an antihistamine). I have some intermittent diarrhea, but control it fairly well with Imodium. I’m fatigued, but not more than on Ibrance (3.5 yrs) with zometa and Letrozole, or Afinitor (6 mo) with everolimus and Xgeva. I haven’t heard of tamoxifen being used w MBC. What CCC are you using?
Thank you so much for responding! I'm glad to know that you have been able to handle being on Faslodex and Piqray. I'll have to remember about Imodium! Do you have to use a specialty pharmacy for the Piqray?
My impression is that Tamoxifen is used for post menopausal women who have had other anti-estrogen meds that have worked and then stopped working, usually last after all the others. When I was first diagnosed, in 2004, some long timers that I met had gone thru all the anti-estrogens, with each working, would go on low dose estrogen to kinda reset the cancer cells and then use the already used meds again. I haven't heard of anybody doing that recently and my bc specialist onc told me that estrogen, even low dose estrogen, has too many side effects...... I go to U of Michigan CCC. I have started seeing a cardiologist there who specializes in treating people with cancer. We drove there yesterday for an echo cardiogram and on the way home, I kept thinking it's too far to go and too exhausting! Sigh! I slept nearly 10 hours last night.
Wow that’s actually very good. I basically have the same diagnosis but only been 5 years. Sounds as if you are doing the right thing. I had a problem with the Xgeva but I also had dental work. I pray you continue to be blessed and all your other issues done become too much for you.
I'm sorry to hear about you having a problem with Xgeva. What I have always heard is that if we need to have "invasive" dental work done, we should be off our bone meds, like Xgeva or Zometa, for 3 months before and 3 months after. But of course that isn't always possible, especially the 3 months before. A friend who had osteonecrosis of the jaw, ONJ, kept getting infections and her dental school dental specialist recommended that she use Arm and Hammer Peroxicare toothpaste and original flavor Listerine. She started doing that and the infections stopped ! So I have superstitiously used those products, too! Don't know if they would be any help for you, but thought I would mention it.
Thank you I will try the toothpaste and they have given me medicated mouthwash.
You just be our longest-timer here!! Well done you.I was on Tamoxifen for 5 years on my original breast cancer journey. I was pre-menopausal then. I had headaches initially but they stopped after a few weeks. I was diagnosed mbc 12 years later.
When asking about meds when progression occurs my nurse told me that returning to Tamoxifen was an option so it must be something in the pipeline.
I'm sorry about your needing to make a choice. I don't know about either, so am of no help there. However, in the crazy itching department, I have experienced that. In my case, part of it was crazy dry skin. (Who knew?) My dermatologist told me to use CeraVe for rough and bumpy skin and it has worked like a charm. Also, thank you so much for all the sage advice you've given us over the years!
You are welome, and thanks for mentioning CereVe. I will give it a try. I take short showers with the water as cool as I can tolerate, lol! I know that I could be alot worse off, but itching is so hard to ignore!
I'm a newbie (diagnosed de novo in July 2020), so I have no insight/information to share. But I am paying attention to what everyone has to say as I found out about two weeks ago that Picray will, in fact, be an option for me later.
My first oncologist started me on chemo, when it never should have been my first line. Have been on Ibrance, Letrozole, and (continued) Zometa since late Sept (after moving on to oncologist #2). Hoping to get some mileage off of these meds, and ...so far, so good!
This site has been so helpful to me. ESPECIALLY when I see a post from someone who has been responsive to treatment for so long!
Yes. My first oncologist had me lined up for chemo even before I finished staging. I found out on 7/7 that my PET came back with suspected bone mets. (I wasn't expecting this, and I am de novo MBC.) She went ahead with chemo on 7/10 anyway and had every intention of me doing Taxol after 2 months of AC. When she asked me, after I started chemo, when my surgery was scheduled for... I was alarmed. At that point, I didn't yet know that mastectomies are not standard of care once we are stage IV... but my treatment "plan" seemed to shift on a dime. Suddenly, no radiation. And I about had it when this first oncologist told me that she wasn't God and that I should stop worrying about the future.
I got a second opinion, and second oncologist... who had me finish a final AC treatment (total of 4) and then we moved to Ibrance/Letrozole at the end of September. Zometa continues, and I had infusions from the start... with chemo.
Point is, I never should have started with chemo. I did get some good shrinkage, though.
Interestingly, I may have been de novo back in 2015, so two oncologists say. The liver lesion was there back then but was not growing. Who knows how long it had been there. A scan in December 2019, showed it doubled in size from May 2019. That's when they mentioned "de novo". I am coming to the point. I had bilateral breast cancer, left = hormone positive, right plus twelve affected lymph nodes = HER2. I had a combination of thirty-one chemotherapies and targeted therapies over fourteen months. The targeted therapies killed all the dreaded HER2 from breast and from lymph nodes. The chemo reduced but did not remove the lesion in the left breast. Now, I am at the point. All those infusions were important in my treatment. It is possible/probable that in your treatment as well, the chemo helped the lesions to be reduced and isn't that a good thing?
The point is that... there is no evidence anywhere that chemo is a universally accepted first line for MBC. While I did get good shrinkage (even noted as "significant" shrinkage in my follow up scans), my understanding is that we should avoid the most toxic treatments until they become necessary. So, no. I never should have been on chemo at this stage of my diagnosis and treatment. I think I just had an incompetent oncologist that maybe was still stuck in old school thinking.
I left her because of how dismissive and defensive she was with any questions I posed. That is what told me something was off, in addition to it feeling like she was "winging" our calls and my treatment plan. Didn't seem like a plan at all, frankly.
Love my new oncologist, but I plan on moving my care to Hopkins in November, when my insurance renewal date makes the change possible. New oncologist is a generalist, and I asked Kaiser for a consultation with a Hopkins specialist. They denied my request. So, naturally, they will lose my business over that... and the fact that so many things have been missed by them. I shouldn't have to work this hard to get my basic health needs met.
PS: I have started to wonder if many women are not de novo from the start, given how many later develop metastasis. Did it develop or was it just undetected before?
I get it! We are forced to be in charge of our treatment because no one else takes it to be their job. I assume many of us (including me and I am assuming, you) spend some time most days on the subject of our treatment. The doctors may spend an hour each month or so on our treatment. They really don't care about us nearly as much as we do. You are obviously taking charge of your own health and its' treatment. Good on you!That is what we all all need to do if we are able.
Your point is so well taken. I resisted the idea of de novo but that does not remove the truth. It most likely was but how is it that it lay dormant for all those years? That is my question. It may be that all those scans with radiation unleashed the monster.. Until I was diagnosed with bilateral breast cancer in June 2015, I had never had any full body scan or any other complete physical. I considered myself to be the healthiest person I knew. This included my children! Yes, you are probably right in suggesting that many of patients diagnosed with early stage cancer are, in fact, de novo.
Like you, I do spend at least some time every day thinking/learning about MBC and what it means for me. If I didn't feel that my care is being ignored (case in point, I had my last scans on 1/8 but didn't speak with my oncologist until two weeks ago today... at my insistence), I wouldn't have to devote so much time to all this. And, that pisses me off. Will it be the same once I move my treatment to Hopkins? Who knows. All I know right now is... I don't currently have much of a healthcare "team" and what was once highly coordinated care has now turned into a lot of stuff being missed. Meanwhile, I don't blame my oncologist directly. In fact, I can see how much more work this makes for her since I keep emailing her about things. I think she is probably tired of apologizing for breakdowns in the system.
Took 7 months for them to even check things like B12 deficiency, my thyroid... etc. And I have not taken Vitamin D for several months now, when my last prescription was discontinued. I shouldn't have to push so hard on the basics. (Now on prescription Vitamin D and calcium, which should have been the case all along.)
It's the same for me. There is no coordination whatsoever. I am the only coordinator and don't really know how to do the job. A lot goes missing. I must say, though, that the oncologist who I really had issues with because of a huge miss on her part, has gone the extra mile, recently. She actually looked at the blood work and diagnosed me with the auto-immune disease, pernicious anemia. I am on a once a week injection of B12 and will be until I feel human, again. Then, the dosage will be less often but will continue "for the duration". Forty-five yeas ago, I was diagnosed with Hashimoto's disease, an autoimmune disease. Now, I have been diagnosed with yet another autoimmune disease for the internal trembling I have been experiencing from last April. You mention issues with both thyroid and with B12. Do you, by any chance, also have an autoimmune disease?
In my last video call with my oncologist, I had 5, typed pages of questions for her. I brought up my labs, which, among other things suggested to me that I am anemic. I asked about supplements, getting on Vitamin D and calcium (that I should have been on all along), and being tested for B12. Well, I had my B12 and thyroid tested a little over a week ago. Thyroid is fine. As is my iron level, although my ferratin level (first I ever heard of ferratin) is elevated. B12 is low, but I just got another test back today from an additional blood test on Monday that was supposed to tell us if this is a "true" B12 deficiency. Seems it is not. So, the thought that we may be looking at B12 replacement therapy, I am guessing I don't need it. I have been taking over-the-counter B12 for about a week now.
I mean, the good news is... I am REALLY healthy outside of the cancer. I think we have tested for everything that could complicate my health or cause my blood counts to be where they are (low). What I needed to find out, which I think we now might know, is that my blood counts are being affected by the cancer and cancer treatment alone and there might not be anything else I can do. And, if this is the case, I can live with that. Ignoring things that can be addressed was my real issue here. I am just glad we can rule out other problems.
Cos
PS: Just got a note from my oncologist confirming what I thought was the case. No need for B12 treatment.
That's really good and good for you to be so complete in addressing all possible issues. Now the future is looking up. Our President who is a lousy speaker, is a wonderful doer and we are going to a better society, one that Bernie approves of. I heard him on the radio this morning. He was so robust in his affirming comments.Actually, I did watch the President speak his speech and he did pretty well. He stumbled over some words but God Bless Him for his huge heart and his competency. He is getting it so right!
He has a stutter. Look past that, or understanding it for what it is... and he is a great speaker. Anyway, I know Biden has long been interested in finding a cure for cancer. I have great hope that the time is now. Oh, and the guy who invented the first COVID vaccine? Well, I read an article yesterday that he is moving on to a cancer cure as his next focus.
Yes I read an article in the NYTimes about the scientist who is now focused on a cancer cure which is great news and, yes, I know that our President had a stutter. I was being coy about his speech troubles to get on to the all out adoration I have for him. I am completely overawed by his brilliance in beginning to guide our country towards equality and even, perhaps, towards justice. I believe that the bill that President Biden has just signed into law will change our country dramatically.
OH... I missed you being coy, as we don't always get tonality so easy in writing! Yup, Joe is the right guy at the right time. He wasn't my preferred candidate, but I am thankful he is on the job... and surrounding himself with people who know their stuff. Thank God. COVID and beyond.
It was extremely high ferritin levels that found my mbc...they can be very high with haemachromatosis as well as breast cancer...fortunately I have a brilliant GP who investigated further...that and a fractured vertebra confirmed the dire diagnosis...ferritin isn’t routinely ordered in blood tests and I don’t understand why Barb xx
I had no idea about the connection between MBC and high ferritin levels. As I mentioned in my post from a few years ago... I had to ASK to be tested for anything that could be affecting my blood counts and causing anemia. Until you said this today, I still wondered what I could do to bring down the ferratin. Oh.... don't have MBC? Got it.
For me it was very high ferritin and crazy high alkaline phosphatase that were the red flags. The alk phos had been elevated for ages—over a year, but several doctors ignored it. Even though it is a red flag for bone issues such as metastasis and they knew I was a stage one survivor
wow, 17 years! hope. this body is approaching 6 years, on first line of treatment, with 5 years of NEAD and stable PET/CT scans. quality of life, that is acceptable to me, is important; concerned about the bones and heart on treatment.
(i've been told it's 'my') attitude. i believe that to be true, along with a myriad of other factors. in Aug 2015, the body was introduced to Ibrance, Letrozole , and Lupron. while the mind-body was not thrilled about the treatment, it was accepted as life saving, and there was intent for Progression Free Survival (PFS). this body is sensitive to medication, thus by the end of 2015, adjustments were made. Ibrance was dropped to the lowest dose and Letrozole was switched to Anastrozole; in Oct 2020, Zoladex replaced Lupron. the body has not been off treatment, it has had scheduling changes, as well as Ibrance vacations. ie, Ibrance is on 14 days and off 14 days. Anastrozole is every other day while on Ibrance and every day while off Ibrance. i am revisiting the treatment schedule with the onc in a week, with intent to lessen the AI and include more Ibrance vacation.
You ask a great question! Normally I'd suggest obtaining a second professional medical opinion, which still stands. That said, I've read about considerable side effects from Piqray (high glucose levels).
Of course, no medication is free of side effects, although generally Tamoxifen is fairly easy to tolerate (concern for premenopausal patients is uterine polyps or even uterine cancer and for all patients the risk of blood clots). Tamoxifen is, to my mind, a workhorse med that has a longer history than Piqray, and is likely much, much cheaper. Many people tolerate it well. Frankly, there's no glamor attached to it, as it's not a modern "targeted drug." It also has a sister drug called Fareston which is FDA-approved and I believe is as effective as Tamoxifen.
Thank you for your reply! Tomorrow I am going to have a Zoom meeting with the bc specialist onc that I have seen for second opinions. My onc did the paperwork for Faslodex plus picray and I got a call from the specialty pharmacist and was very favorably impressed by the info she passed on to me and the questions she asked. With Medicare and my supplemental insurance the cost for Picray will be $25 every four weeks, very doable for me. Mostly I am at peace with this, but I've had a couple of short tearful spells when the reality of having fewer treatment options left really hit me hard! I am pretty much at peace with the idea of dying and what I know about the process of dying, but I hate the thought of leaving my husband and our grown daughters. He's a man who needs a wife! lol And I have loved being his wife! I know that he has good friends who will be there for him, but it won't be the same for him.
My only caveat with Tamoxifen--which is not a 'don't do it' just a 'keep in mind just in case' is it can cause clinical depression in around 10% of women. One of these was me after my stage one diagnosis..
I had never been depressed before or since--at least not like that. Neither my Onc or psychiatrist would believe it was the Tamoxifen, but I knew it was. It took my current Onc, ten years later, to tell me these statistics. After the fact, as I stopped taking Tamoxifen after 3 years and my depression subsided soon after, but at least I felt validated.
I am not saying don't take it--90% of women DON'T have depression as a side effect. What I am saying is if you do start it, and have serious depression out of the ordinary for you, know it could be the drug. If someone had acknowledged that, I might have been able to stick with it for the full ten years, knowing what I was feeling was the medication not me.
I always mention my story here because I don't want anyone else go through what I did--not just the depression , but the fact I had an inkling it was the Tamoxifen and no one believed me.
Thank you, and for the caveat about depression. It's good to know that. I was a therapist for 20 years, licensed clinical social worker, and have alot of knowledge of depression, but don't have personal experience with depression my self. I think I would recognize it in myself but I'll mention this to my husband so he can help moneter me for symptoms. One of our daughters is a LCSW and can recommend a good psychiatrist if I need one. I'm on Effexor for the hot flashes from anti-estrogen meds, and it is an anti-depressant. I had a weird reaction to a med once and started seeing large teddy bees flying around the room and I immediately recognized it as a reaction to the new med and stopped it, called the doc, and then just sat back and enjoyed the show, lol! I have a very vivid memory of that! lol
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Ibrance and Faslodex stopped working; oral faslodex?
Tamoxifen 
Knee, foot and joint pain on Ibrance, Faslodex and Xgeva
