19 months after reaching NED with Ibrance and Letrozole + Xgeva injections , the regime failed ! New mets to bones found in the last Pet Ct .
I am a Novo mbc to bones from Feb. 2017 , HR + , HER2 - neg .
I am 43 old and I have 2 kids 9 and 12 old .
My oncologist suggests me a new option of treatment : Afinitor + Faslodex .
Anyone that can share their experience with me ? Side effects caused by these drugs ?
Thank you my sister
Same for me. I just found out yesterday I will be starting the same meds. Let me know how it goes with you. I was on the Ibrance and letrozole for almost 2 years. Mets to my bones and stomach. It came back pretty good to my stomach.
I am on letrozole and Ibrance and I have Mets to my bones and stomach. Told that it is very rare to have breast cancer in the stomach, but I had lobular cancer 14 years ago. How has the Ibrance worked on your stomach, has it shrunk them. I have not found anyone else with Mets to the stomach so am very interested. Best wishes for the new medication.
Mine is also lobular and that’s where it goes stomach and bones. After a couple months on letrozole and Ibrance I could tell it was working because I could eat again. After almost 2 years on the Medication I started getting a funny feeling in my stomach if you start getting a funny feeling in your stomach make sure they do a CAT scan because it maybe back.
I have only been on this medication since April and at the moment nothing has happened. Due a CT scan in two weeks time. They have dropped me from 125mg to 100mg as my blood count was .6, so I keep having two weeks off in between. Also I have had diarrhea and sickness, but that was after my bone injection. Did not give me that this time and I have been fine. Have started to eat small amounts more often, but get a lot of wind in my stomach. I have two groths which are opposite one another, it has been very difficult eating wise. By the way I live in England, but we seem to get the same medication as over there. Sorry you have this as well but it is nice to be able to communicate with someone who has the same thing. I have been on several sites but have not found anyone else. Let us know how your next lot goes.
So sorry to hear this. Also sorry not to be able to answer your questions. When I asked my onc. what happens when the Ibrance stops working, she showed me a list of six or seven meds to fill the void. And more supposedly in the pipe line. Keeping my fingers crossed for you.
Never give up hope. I don't know anything a bout that because my comb is like yours and still working. When my comb stops working I will for sure try anything else, there's a lot of different combs out there. Only thing that I will leave to the very last will be chemotherapy ou radio therapy. Anyway, there's plenty of combs., to try before that. Keep fighting the monster
Best of luck
Hi Gal1975, I am also taking Ibrance and Letrozole for mbc to bones and I am 44 with a 6 and a 9 year old, so similar ages to you. I started the same combo in June 18 so I hope it works for a while. There will be other combinations to try before AND if we need chemo. It seems that these targeted therapies end up failing because they only attack the dividing cells and not the stem cells! If we looked at cancer as a metabolic and not a genetic disease we could potentially have better treatments. I have just finished reading Jane McLelland's book How to starve cancer and it is amazing! It's a completely different approach to this awful disease and I think she offers real answers. A good friend of mine with mbc in bones had run out of all the hormonal treatments and was only offered palliative chemo. In July this year she decided to try the Chemothermia clinic in Istambul, where they approach the disease in a metabolic and integrative way, and she came back last week in complete remission! She is visiting me on Sunday so I will ask her everything! She will try to stay in remission with the Care Oncology Clinic protocol. There is still hope as there are other options out there! We just need to be informed. All the best to everyone Xx
Very interested to hear about your friend. I too am close to your age. I just turned 46. I have a 10 and 14 year old,. I was just put on Ibrance and Letrozole in March. I first had breast cancer 6 1/2 years ago. I have done well on this combo. I too want to stay on the medicine as long as possible. It makes me so sad to hear of woman that are once again facing this. I try so hard to understand but know that it is not my place, but Gods.
How long has your friend been dealing with MBC?
Hi, I was mbc from the start. I had my first CT scan results yesterday and they were great. It is all gone from my bones and lymph node. They did not mention how much it shrunk from breast and now I am waiting from radiologist to confirm measurements! I am hoping to get NED at next scan. It seems that Ibrance and Letrozole are working very well. However, my onc reminded me yesterday that treatment is likely to stop in the future (even though there will be other lines of treatment). That is why I am looking for other solutions and I have hope in the metabolic approach. My friend had 3 years out of hormonal treatment and when they offered her standard chemo she decided to go to Istambul as they get good results with only 40% chemo. She was over the moon to get NED after only 4 treatments but it is expensive. She is currently taking Metformin as they think it could help. She has asked the clinic what would be the best strategy to stay in remission. She will let me know once she hears anything.
I am so glad to hear your news . That is amazing. I also have been told that the combo will only last for a time, then on to another. That is why I pray everyday that I can stay on it as long as possible., but taking a drug for the rest of our lives is something I dont want to be doing. I would like to hear what she finds out if possible. This website has been amazing with so many positive encouraging women that help with so many different situations. I have gained a lot from everyone. Thanks again for the information.
what is the name of the clinic in Istanbul?
It is called Chemothermia xx
What does a metabolic approach include?
They believe that cancer is a metabolic and not a genetic disease and that it therefore needs to be treated accordingly. The Metabolic Approach by Nasha Winters, How to Starve Cancer by Jane McLelland and Tripping over the Truth are great books which explain clearly this new approach. Basically you need to 'block all the pathways" so that cancer cannot thrive via a low glycemic diet, exercise, supplements and in some cases repurposed drugs.
Eva xx
Thank you. Do you think that is why some doctors approve of metformin?
Metformin is one of the main repurposed drugs that they prescribe at Care Oncology Clinic (COC). These clinics started by doctors who believed in the metabolic approach . There are other doctors like Dr Rosenberg in the USA and Dr Calleabout in London that are also able to prescribe them.
All the best,
Eva
Hi Eva,
That's well explained! How are you getting on?
Like you, I am continuing with my conventional treatment, supplements, diet, exercise and off-label drugs. I think my integrative approach has contributed to how well I am doing. I feel in better health than before my diagnosis, which seems strange really. I have plenty of energy (unless I overdo things), I am still working and getting on with life. I trust conventional treatment to a degree, but not completely as it won't cure me. I also know that much more is needed to help beat back this disease.
My primary tumour cannot be measured now, as it has shrunk so much. I can feel that there is something still there, but my hope is that it will continue to shrink until it disappears. I believe that blocking all pathways will eventually kill the cancer, as it won't have a fuel source. I am much more in tune with my body and am able to listen to it more than before. I think I became adept at ignoring my body's signals before when my body was in need of some help, but I don't do that now. If I am tired, I rest. If I crave cauliflower, I will eat cauliflower. Our bodies deserve to be taken care of. We need to put our health first. I think that as women we tend to put other people's needs first, but we also need to care for ourselves.
Sophie x
Hi Sophie,
How are you? Are you still seeing Dr Calleabout?
I am very grateful I am still doing well on Letrozole and Ibrance. (So far I have not added any repurpossed drugs). Tumor markers keep being within normal levels and the best thing is that the pain I had from my back fracture is finally going. It has taken almost two years to heal! but it is almost there. I think the infrared sauna is really helping with that.
I feel there is no c in my body and would like some kind of proof but nobody cares to check! If I am not wrong the only way to find out for sure is via a PET scan but they only offer me a CT scan with ultrasound, which is not completely accurate.
I am a bit worried about Covid-19 but don't want to get too paranoid. I keep thinking that my immune system must be strong with all the juices, mushrooms, Vitamin D supplements etc.
Take care,
Eva
Hi Eva,
I'm doing really well, thanks!
That's such good need that your back fracture has healed. It's taken a long time, but I've noticed we don't heal as quickly as before our diagnosis.
I hope you are right and that the cancer is gone. Wouldn't that be amazing? That's what I want too, to get my life back to what it was pre-diagnosis. I can't even remember what life was really like before. Maybe you should push for a PET CT scan. Or perhaps consider going private. I never thought I would seen out private healthcare, but now I'm glad I have that alongside NHS treatment.
I'm answer to your question, I am still seeing Dr Callebout. I haven't had a consultation with him in a while, but I am still following his protocol and he answers any questions I have when I email him. He's always on the ball with my prescriptions too, so I never have to worry about running out of my off-label drugs.
I still need to buy an infrared sauna. I love the way it feels and if it can zap those cancer cells that's even better!
Take care,
Sophie
Hi Sophie,
It would be amazing if it is all gone or if it is dormant for a long time!
When you mention you have gone private is that Dr Callebout or have you done other treatments, etc privately?
Eva
Hi Eva,
I really hope so for you. That would be a wonderful outcome for you and your family. I know that with metastatic breast cancer we are considered to be incurable, but there is a possibility of complete remission or even a long period of stability with no progression. So we should hold out hope that we continue to do well for a very long time.
Yes, I mean that I have gone private by seeing Dr Callebout. I met him in person down in London for my first consultation and was very impressed with his clinical expertise, but subsequent consultations have been over the phone. Since I have figured out how to use Skype and Zoom I might opt for those in future!
There are lots of other alternative and complementary treatments that I am interested in too, such as hyperthermia, acupuncture, cryoablation (I need the primary tumour to shrink some more for that), mistletoe sounds interesting, I want to buy an infrared sauna, but I am not sure about hyperbaric oxygen therapy, and I won't be trying enemas anytime soon. So as you can see, I have lots of ideas I am interested in. I just have to keep researching.
Sophie
Hi!please let as know what clinique in Instanbul ?my palbociclib and letrozol stop working after one year ,doctor from Turkey recomand me now chimio docetaxel ,one from Austria said try faslodex ,i did start on faslodex but markers grow a lot .please i need to know what treatment she had there and whats the clinique name
I have never been on that combo but I was on Faslodex for 11 years the first time the cancer metastasized and I had absolutely no side effects. I was on affinitor with a combination of two other drugs and that combo kicked my butt however I think the only side effect related to the affinitor was headaches. I wish you the best and just know that everyone is different. Hugs & prayers for you.
Hi what were the two medications you took with Afinitor was that a trial or not thank you
Hi, yes it was a trial and the other two drugs were exemestsne (aromosin) and Kisqali which is similar to Ibrance. They worked and my CT scan after being on them for a few months showed NED but I couldn’t stay on them and then the tumors came back. Weird I think but who knows.
That was too bad that you could not stay, yes it sound too much Afinitor and Kisqali so what medications are you taking now and I hope is working for you God bless you
Hi. I have the same diagnosis as you. My first treatment was Letrozole (Ibrance was not available when I started). When Letrozole stopped working, my oncologist put me on Afinitor and Exemestane (an aromatase inhibitor like letrozole). I am now on Faslodex and Ibrance.
Afinitor worked well for me. I was on this drug regimen for almost two years. I know everyone reacts differently, but I just wanted to let you know about some of the side effects I experienced. I experienced mouth sores, but I soon learned that if I stayed away from acidic foods, things were much better. Also, I'm sure if you experience mouth sores, your oncologist will be able to prescribe something.
I also had a problem when my oncologist tried to increase my dose from 5mg daily to 7.5mg daily. My liver enzymes (ALT, AST, and ALP) rose dramatically. I had to stop Afinitor completely for about three weeks until things got back to normal. Then, I went back on 5mg daily. After a few months, my oncologist increased the dose gradually...5mg for 2 days, then 7.5mg the third day for a few months, then 5mg every other day and 7.5mg every other, which worked for several more months.
Wishing you well with your new drugs. It's always an anxious time when you switch drugs. I hope you have good results.
Thanks I will have a biopsy next Wednesday to see the biology of my cancer
I started on Faslodex in late 2008 and got over 9 years on it. Had been on Letroole for nearly five years before that. I found Faslodex pretty easy to be on. Afinitor and Ibrance were not yet options when I was diagnosed but what some women, and their oncs, did at that time was to use a hormonal drug until it stopped working, then switch to another hormonal and then when 3 or 4 of them had worked and then stopped working, a low dose of estrogen would be used and frequently would "reset" the cancer cells to respond again to the meds already used. That has been my plan. I have lobular bc and only bone mets. Lobular often does respond quite well to hormonal treatment and that has sure been true for me. I've only been NED for a few months but bone mets have been mostly stable and when I have had progression, it has been very slow and not very much and I've never had symptoms from the bone mets.
Afinitor can cause really serious breathing problems. If you develope those, call your onc ASAP, like at home on the weekend ASAP. A good friend of mine died, not long after Afinitor was approved by the FDA, and neither her onc nor the pulmonolgist who started treating her realized that Afinitor was causing her problems, left her on it, and after about 3 weeks in the hospital she died. Ibrance has left me with permanent damage to my lungs, a condition called Interstitial lung disease that the pulmonologist described as like gunk between the air sacs. There are times I get out of breath super easily, like just from leaning over to tie my shoes, and the humid weather this summer made it really uncomfortable for me to be outside and kept me from gardening, one of my favorite around the house activities. (I'd much rather weed than vacuum! lol) I was only on Ibrance for a few cycles......
Thanks sometimes I want to switch to Afinitor and Aromasin but I am afraid I have lung fibrosis due to radiation I will see
I also have lobular metastatic to my bones - I am on vibrance and faslodex but having scans tomorrow because not sure I am responding to them. What are you taking ?
I started with ibrance and letrozole in September 2018. After 8 months the cancer had spread. So I'm taking another dose of chemo drugs now. PALBOCICLIB did not work for me at all. It did more harm than good.
Did the damage to your lungs begin with a raspy cough?
Hi there, I'm sorry to hear the ibrance has stopped working for you. For those of you in the USA I really suggest this group. (Reposting what I wrote on another thread.)
Look into getting some of your current biopsy sent to Foundation One in Boston. Consider only the financial aspect(check out options on their website, they sometimes help with the cost) but the rest is super easy as your doc would handle it.
You get back an amazing report of what are the appropriate meds for your specific mutations ( they tell you the mutations you have beyond the standard ones of BRCA ).
Everyone should be using this! They say which meds most likely to work, what current trials could be helpful too.
Wishing you well in your journey.
Hi, the report you mention sounds very interesting. Do you know if they do something similar in the UK? Is it the Greek test? Many thanks xx
Gal, how are you doing on your new combo?
It didn't work for even 8 months for me.
Hi, I have just found out that ibrance, letrozole have stopped working for me after 33 cycles.I hope you are ok on your new treatment.
I will find out on Wednesday what my next plan will be.
Love and good vibes,
Mary
Ibrance/Arimidex stopped working 😥
Ibrance and Letrozole 
ibrance not working 
Letrozole and Ibrance is it working? 
