My last PET scan showed progression in my T1, manumbrium (top part of the sternum) and in my pelvis. My oncologist ordered a blood biopsy and the results show that there is no treatment for my mutations. So I had 5 sessions of radiation, each time treating all 3 of my lesions. She is keeping me on Ibrance and letrozole and plans to treat further progressions with radiation . If that fails, she said I would need Chemo treatment. My question is has anyone been kept on the same treatment with progression? I will have a PET scan in 3 months to see if the radiation worked.
I had a second option at MD Anderson when I was first put on the Ibrance and letrozole due to progression. I was wondering if I should go back and see what they say.
Thanks Gloria
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I had progression to my uterus, ovary and fibroid which I was told is very rare. The OB/oncologist who performed the hysterectomy didn't recommend switching treatments. Neither did my oncologist. They were not sure if it was progression or if the previous scans hadn't picked up the cancer. Unfortunately, I have lobular and neither a bone scan nor a PET scan picked up the bone metastasis. I had one done before my mastectomy and one after because the cancer was more advanced than they thought (3C). My oncologist said there was some evidence of necrosis in the fibroid which would indicate the treatment was working? Prior to the hysterectomy, my tumor markers had been consistently dropping from 680 to 264 (10 months on Ibrance/Letrozole/Lupron). After the surgery, my markers dropped to 66 and nine months after the surgery they remain in the 20's range. My onc said she would like to keep me on this treatment for as long as possible, even if there was minor progression. I have some new "symptoms" which if can't be explained by the next 3 month scan or the MRI of the spine might mean I have to go off of Ibrance as it would be a rare side effect. Leave it to me to have all the rare "situations". I will keep you in prayer.
my oncologist has me on monthly Faslodex injections for the MBC in my bones. The I ital PET scan showed it from femora to humerus and all bones in between except scapula and sternum. I’ll soon be starting Verzenio. On Faslodex (fulvestrant) alone my cancer markers have dropped from380 to 78. My last pPET scan showed significant improvement, especially decrease of cancer in my ribs and did not even mention ribs.
You might ask your oncologist about Faslodex instead of the oral AI.
last June I had three new mets on spine but some of the old ones were slightly improved, so I had cyberknife radiation to zap the new ones and we stayed with Piqray. The radiation worked. Since then I’ve had no new mets and the old ones are more or less stable. So I guess it was a good thing to stay the course although I sure wish there was more reduction. My onco wants to prolong Piqray as long as possible. (I also had a DNA test and one mutation was found along with suggestion that Enhertu might be a possible next drug. I’m actually going to UCSF (Univ of Calif San Francisco) for a second opinion because they have breast oncologists who also do clinical studies, etc . My onco doesn’t specialize on breast cancer. This is my first time to get a second opinion, I’m sort of excited to see what they say. )
Sounds like your next PET will give you good information on next steps. Maybe that’s a good time to get second opinion?
I have requested a second opinion and they will give me an appointment when they get my latest medical records. The radiation worked well the last time I had it, but the radiologist said too much radiation can affect my bone marrow , so I am hoping that is not going to be my "treatment" of choice.
Yes me. Last March I had progression in my abdominal nodes so the radiologist told the oncologist to order a new scan within 12 weeks. She did and when the results came back, without any treatment change, the new mets were half the size. I stayed on Exemestane and the last scan showed the new mets were continuing to shrink.
I’ve been stable since 2016 on Exemestane but I have mets from head to toe. Many are healed and even active mets aren’t active all the time.
I have had radiation twice and IV chemotherapy before the current line. I’m keen to stay on Exemestane because my next line is oral chemotherapy. At least Exemestane is pretty easy to live with.
One of my mets on my spine stayed stable, this last pet scan, but another grew and I developed 2 new ones. So I am not sure how well the letrozole and Ibrance are working. My Onc said if the radiation does not work she is going to put me on oral chemo.
My next treatment will be oral chemotherapy too. I’m hoping it’s in the distant future but whenever it happens I’ll do it.
According to a post here which had a link, progression is thirty percent growth of mets between scans or movement into a new place like soft tissue. I had no skull mets but within weeks of starting treatment with Letrazole I did. That’s why I had radiation and Abraxane. I’ve had progression into bones such as my toes but that’s not considered enough reason to stop Exemestane. I haven’t seen my bone scans over the years but I know I have mets everywhere. And I know some have healed but I truly doubt that would have been the case without the two interventions when the skull mets were discovered.
I hope the radiation is enough to slow the mets down for you but the degree of progression has to be considered too. The good thing about IV chemotherapy for me was that it was time limited and I went back to an AI afterwards. I’m contemplating asking to go back to Abraxane when I get progression into soft tissue because it did work rather than moving to an oral tablet that’s taken until it stops working. I’m not sure how that will pan out but it’s only a thought at the moment.
Radiation has the dual effect of stopping bone mets in the location targeted but more importantly it removes dead bone and allows for regeneration of bone. So it’s worth having for that reason alone.
I would think possibly Faslodex injections and stay on the Ibrance. That’s what I did initially. When I had progression the aromatase inhibitor was stopped and Faslodex added. My liquid biopsy showed a mutation so I then went on a new med Orserdu.
I was on Ibrance for about 15 months and a PET showed progression so they switched to Kisqali and Faslodex and primary tumor is undetected…other lesions healing.
My main Oncologist is from MD Anderson Houston. I would have done whatever my team felt was the best for me…trust your doctors but by all means get a second opinion if it will give you peace of mind.
I see a therapist once a month and she has been a little miracle for my anxiety. I am getting through this journey because of her!
I agree with above. Try fulvestrant instead of AI and get second opinion. I also have a mutation for which there is no treatment. When I have progression, I go on another AI or SERD and CDK4/6 inhibitor, and they mostly work for a while. I will get oral chemo when this finally fails, the last pair of AI and CDK4/6.
Sorry, you said you had been on fulvestrant for a couple of years, but then you had progression to bones. You also now say you will get a second opinion, and that is good.
What is your mutation for which there is no treatment?
Mine is DNMT3A, which, I learned on reading research, is associated with poorer prognosis. There seem to be possible avenues of research on treatment, but, as far as I can tell, no one is pursuing these avenues. Even if they were, it would be really early in the exploration.
Hi there. I have been on ibrance 125mg and fulvestrant injections since my breast cancer metasized to the t2 area and auxiliary node. I have some gastric side effects but so far had no further progression yet. It is worth a try. Gd bless and good luck in your treatment.
Actually I am not sure. The onc pointed 2 out on the report, but I don't remember which ones and the report is very complicated to read. It also said I had 5 mutations not 2, so I am confused.
I asked the same question, before I scrolled down and saw that it had been asked and answered. I ignored it for years then finally settled into it and decided to figure it out. I think I also have more than the one I focused on. That seems to be the main one that makes a difference. That is what I gleaned from the report when I studied it.
I saw my oncologist Jan 2 and I have progression on my T9 and L 4. She is keeping me on ibrance and letrozole. I just finished 5 rounds of radiation and have scans in March to see if it worked. If it did I stay on the same meds and if it didn’t I will have to change meds. Theresa
i was on letrazole aline for 4 years from 2016 to2020 than i stopped because my insurance issue and my original oncologist he left the breast cancer since initial my breast cancer just stage 3 i didnt follow up for a year, around 2022 feb mbc to sacrum the i found new oncoligist put me on fluvastrant he told me when letrazole not working fluvastrant will work because both are antiestrogen but drug work diffrently
I really only knew about radiation being used to treat bones in danger of breaking or pain,. I haven’t heard about it being used as a way of staying on a drug. I guess that’s a possibility but I would expect them to at least change you to something like Faslodex instead of the same AI. Also you can’t have endless amounts of radiation treatment.
I would definitely seek a second opinion at this point. MD Anderson is a great hospital so why not? Also, my experience is that it has been very reassuring to have occasional visits to my second opinion doctor to develop a second doctor relationship, as a fallback.
Case in point: I have just had the experience of my usual doctor mysteriously not returning from her holiday at a time when I really needed her. I wasn’t satisfied with the followup I was getting with the fill-in doctor so I was able to go to my second opinion doctor to get all my questions properly answered and it took away all the stress I’d been building up the previous few weeks, and bee able to trust I was making the right decisions about my treatments going forward
I’m in the same boat! I’ve had 2 recurrences because I had too many breaks that were longer than the usual one week off from Ibrance and anastrozole (blood count issues). The first recurrence (treated with radiation) and lung node biopsy were not solid, so it didn’t show any new targets. 3 months later, the lung nodule metasticized, but again no mutational changes. So, I’m on a lower dose (75 mg) of Ibrance so I can maintain the regular schedule. The lung nodule will be treated with radiation.
I’ve been on Ibrance for 6 years. So happy you brought this up!
That makes sense. I want to stay on it as long as I can. Unfortunately, I think my blood counts may not hold up. 6 years is a long time to be on Ibrance, so I shouldn’t complain.
Just a suggestion it would be helpful to know what type your MBC is, ie ER+ HER2- etc as at least 4 types, triple negative being the most difficult although recent new treatments. It’s not helpful to say no treatments for your mutations as literally hundreds of trials. How does he/she know? What might be true is there is not a script today for your variations. Consider a second opinion with a more proactive oncologist ie clinical trials, off label TAPUR study in the states, Linda was very helpful and referred me to the MoST program in Australia . It’s not over till it’s over. 🍻
I also just had a reoccurance (in my sacrum) , was stable on Ibrance Letrozole. I am not sure what my doctor will do. I am getting a second scan tomorrow and I guess they are going to decide if its real or not. ( I had just moved to a different state) I am not even getting radiation, and I am having some pain.
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MRI and Bone Scan update (Stage IV BC)
Progression on Ibrance
COVID
Bone Mets
Pet scan now 🙏❤️
