Hi everyone. Just got back from my results appointment with my oncologist. Turns out the ibrance and letrozole have stopped working. I only used them for about 4/5 months. I'm now on exemestane for one month with scans scheduled after that. My mets are to my liver and peritoneal lining. The ibrance and letrozole significantly shrunk my breast tumor but the liver lesions grew from 2-7 and two were lager than before. Has anyone tried only exemestane alone? I live in Canada and the Affinitir my doctor would like me on with the exemestane is not covered here yet. Otherwise it's about $5000 for 30 days. He said chemotherapy is next which scares me. I was only diagnosed in February of this year and my whole life has been up and down since then. I just turned 49 two weeks ago. Any advice is so appreciated. So glad to have a group who gets the daily struggle. Thank you all. I will keep praying for all of us ❤️🙏🏻❤️🙏🏻
Not sure of anything: Hi everyone. Just... - SHARE Metastatic ...
Not sure of anything
Hi Staceyness
I have lung Mets and so far Ibrance working so I can’t help you from a clinical perspective. I feel your stress and anxiety and want you to know that I am praying for good results with the new drugs you will be trying. It’s at peak stressful times like this we really need a higher power and focus to get us through. Sending you love and healing thoughts please let us know how it goes. And about chemo...I had 12 rounds of IV chemo when first diagnosed. It didn’t cure me of course but the results were great. If you go for the chemo discuss the possible side effects so you can prepare for them. 💕
Thank you so much. Your replies are always so encouraging and never make me feel like I'm dealing with this without some very smart women alongside me. God bless you❤️👆🏻⚓️🌊❌⭕️
Stacy, so sorry that you are suffering this progression! Praying for you and sending you virtual hugs.
I am in a similar boat. I was on Ibrance 4 months and it didn’t work. I am now on afinitor and exemestane. My oncologist and the second opinion doc agreed with this approach. Although I am prepared that afinitor will fail too. Googling I see if it works, it’s average is 11 months. My oncologist mentioned one other medication before chemo. I don’t know what that medication would be. However, the second opinion doc mentioned xeloda before chemotherapy.
I’ve never had chemotherapy even when I was stage 2. At that time, my tests came back with a 15% chance of recurrence. The chemo only reduced my chances 1-2%
❤️
Thank you so much. We're going to talk to my onc tomorrow and see what we can do. Your s cone opinion really helps me too. God bless you👆🏻⚓️🌊❌⭕️🙏🏻🙏🏻🙏🏻
Ugh. Your second opinion
I was Stage 4 at diagnosis. I’d do th chemo again.
Dear Stacey,
So sorry to read your post. Afinitor is manufactured by Novartis. I looked up some information, and they do have a universal co-pay program that helps with expenses. Patients are asked to visit copay.novartisoncology.com or call: 877-577-7756. You are in my prayers, Stacey. Every change is scary, but there are so many success stories here from women who have had many treatment changes. Please continue to let us know of your progress, as we are all fellow "metavivors" who have you in our hearts and prayers!! XXOO Linda
Thank you so much Linda. I love hearing about success of any kind. Such a blessing to me. Sadly the above information is for US residents only but we won't give up. God bless you my friend👆🏻⚓️🌊❌⭕️🙏🏻
God bless you, too, Stacey. I missed that you weren't a U.S. resident. These financial assistance programs should be offered globally, especially if they manufacturers are able to offer them and able to sell them outside this country. That seems very unfair. I hope you find other options available, as I know these meds are terribly expensive. You are in my prayers, Stacey! XXOO Linda
My heart goes out to you, the thought of traditional chemo would not appeal to me either. I wish I could offer clinical advise but I can't. While the thought of chemo may not seem appealing, it may also help a lot. Please let us know how things go. Sending a hug and a prayer to you.
Thanks Susie! I treasure all hugs and prayers. God bless you beautiful one.
ahhha your sweet. God bless you too. May we all have a good week. Continued prayers sending your way.
I was diagnosed with Mets May 4, 2018 to the bone and a small nodule on my right lung with a small amount of fluid in right lung. Started Faslodex shots followed with 125 mg Ibrance did first round plus one week of Ibrance. Stopped working first month. Started halaven chemo on August 15th feel a lot better. I’ve just done 2 rounds start 3rd round Oct. 3rd. So far doing very good on chemo. Sending prayers your way.
So glad to hear Audrey! So very reassuring to me and I thank you for taking the time to reply. God bless you special lady.
I was on Ibrance and Letrozole for about the same timeframe you were and found it wasn't working. I went on a trial and the 3 drug combination, exemestane, affinitor and another drug similar to Ibrance, kicked my butt and had to stop the trial. My doctor left me on the exemestane but it didn't work and i had to start on chemo. I take Xeloda orally twice a day for two weeks and then off for one. I really haven't had any horrible side effects, a rash on my arms but have some topical creme to help with that. I am starting my third cycle and will have scans in November. Praying that the tumors (liver) are at least stable if not smaller. It is scary and we are all here for each other.
Yes we are. We will also be asking about Xeloda tomorrow. Never give up hope! God bless you for blessing me.
Will be praying for you. Keep us posted.
Hi Stacey,
Sending you much love and healing thoughts to get you through this change in your status. Don't give up hope. Seeing as the drugs aren't all covered, have you asked your doc about possible trials you could join ? This would cover your costs at least.
Also ask your doc/google about Foundation One. I had a sample sent ( doc already had it) and they sent back an amazing report highlighting the genetic mutation that my cancer had done, suggested the best drug to be on for my mutation with possible alternatives, next step drugs to try after failure, and all the current relevant trials specific to my cancer sub-type. It was thorough and I am very impressed. You can even apply for financial assistance to pay for the analysis.
Thank you. God bless you! This learning to live with it is not easy but we'll get there👆🏻⚓️🌊❌⭕️🙏🏻
Greetings: Sister/Warrior, and yesssssss Over-comer I/we pray that Jehovah Jirah the awe-mazing GOD we serve will restore your health. This same sovereign GOD , restored the health of those who suffered from a variety of illness,' moved mountains, and parted the red sea to get his people to safety.This is the same God who is in charge of delivering you from this disease, and any other challenges you/we may encounter. I remember years ago saying if I had a recurrence, I would not go through aggressive I.V. chemo therapy ever again. It's been a little over 10 years since my last chemotherapy. Now in 2018 there are so many more options available to destroy cancer. We have oral cancer drugs with less side effects, immunotherapy, hormone therapy, stem cell treatment, CBD oil for pain management/comfort, and other pain medications to help us through. At this very moment as I am praying, and typing this post there are newer/better drugs being developed, and we are praying for a cure. Keeeeeep the f-a-i-t-h sister. Do your part, and GOD will do the rest. XoXoXoXoXoXo
Amen. He's got this🙏🏻👆🏻⚓️🌊
Staceyness you will be fine. You have a lot to do here still. We are praying for you that there will be a treatment that will work for a long time. I understand how life has turned upside down, believe me. I was diagnosed same time as you and had a 53 rd bday two weeks ago also. I have been a little down this weekend , thinking all negative thoughts. The watching of everything is so draining. Staying positive sometimes is draining, and not having any control of the results or outcome of this dreadful disease is draining. I will be taking my own advice and praying that we will find a drug that works for each and every one of us. RLN-Overcomer said it perfectly . Give to god what we have no control over and he will come through. Where in Canada do you live?
Thank you so much Overcomer and Juliandrea. I so appreciate your encouragement and hope, and especially reminding me that these are from the Lord. It was a really tough Friday, Saturday was ok and today seems like I'm ready to get back at it. My oncologist told me I need some "fire in my belly" so I'm really trying! That and the fact that I've felt Jesus beside me all day has been such an incredible blessing. I too will hold up all of is dealing with this disease and when we're all in Heaven (in many, many years), let's sit down and play 'Remember when we were so scared" and then laugh and laugh! Love you my sisters👆🏻⚓️🌊❤️🙏🏻🙏🏻🙏🏻
Ps. I live in Sherwood Park, Alberta. Really close to Edmonton😁
Big hug to you!!!
Had the same problems eventually, Staceyness. We don't get Ibrance in South Africa and various other drugs are not allowed (expense reasons) by my medical scheme but Letrozole worked for some 3 years then went on Xeloda for a year then Navelbine for a few months then off oral chemo onto Faslodex (suddenly allowed by medical scheme??) but the liver met grew over time from half a cm to over 7 - next step should be chemo which scares me to death. Meantime my oncologist decided that, as I seem to be asymptomatic other than increasing blood counts and the positive CT, I should maybe continue with no meds at all so have had some 6 months or more feeling fine. See her middle of October and already have the usual nerves but I could not see any benefit to my quality of life by using heavy chemo while I am still well enough to continue my daily way of life, go camping etc. At 74 I already treasure what time I can take!
Hope that Canada start covering the drug you need. I believe our medical schemes became "schemes" rather than "aids" for a reason - the less they can subsidise the better they like it while charging plenty for the pleasure of their "service". It is a poor reflection on the health sector.
Good luck and keep in touch with the site - it is a great support
Thanks Izzy. We're all in this together and only God numbers our days, not man. Not even the drug industry nor our oncologist. Keep your eyes on Him👆🏻⚓️🌊❌⭕️🙏🏻
I am sorry that the Ibrance is not working for you. I was on Exemestane (Aromosin) for about 2 years and showed no progression for 23 months so was switched to Ibrance last November. Please check the Aromosin website (aromasin.com/) as they offer patient assistance card where you can pay as little as $4 per month.
I was diagnosed at Stave IV 6 years ago and am trying to enjoy life to the fullest as I fight this terrible disease. Prayers to all who are fighting with me.
I'm a long timer with mbc and am surprised by some of the comments here! I was told very early on that it can take awhile for hormonal treatment to show signs of working and my onc did not repeat scans until I had been on Letrozole for three months and even then said it might be too early to see positive results. So I am wondering if the thinking about that has changed or if some oncs jump to conclusions too soon about a hormonal treatment not working. I strongly recommend that those with mbc see a bc specialist onc at least for a second opinion. In the US, the top tier of cancer centers are those called "Comprehensive Cancer Centers" which is a designation awarded by the National Cancer Institute and listed on their website. (Sometimes it can take some searching to find that list and I have found that it has gotten harder recently) I don't know about cancer centers in Canada though each Province seems to have its own protocols. Each of us has a unique set of cancer cells and it is impossible to totally predict the most effective treatment but generalizations can be made based on things like hormone receptors and her2neu receptors and the apparent aggressiveness of the cancer cells.
I was also surprised that a couple of people wrote things here that suggest that they don't realize that Xeloda is chemotherapy. Again, when I was first diagnosed, in 2004, often the first chemo that was used for mbc was either Xeloda or one of the Taxanes (Taxol, Taxotere or Abraxane). I'm not sure whether that is still true.
My own experience has been with fairly non aggressive cancer cells. I have never had symptoms from cancer, except before diagnosis I did have a vague itchiness across my chest and breasts though cancer was only in my right breast. I have "extensive" bone mets but have ever had pain from them and my movement has not been restricted by them, though I have had a couple of other bone issues not related to cancer.
The first months with mbc tends to be really stressful! Just hearing the words "you have cancer" is devastating!
You asked about exemestane--I have been on it since about January of this year. I've been in treatment for a long time and my onc and I have learned that we can be patient with TMs rising. I am going to have a CT in January and we'll go from there. I have some hot flashes and am super duper fatigued, but I have been pretty tired for the last couple of years. I still shower and dress every day, do our laundry and grocery shopping and walk the dogs a couple of times a day. But this is the first year I've not done any gardening and travel seems like too much (much weeping and gnashing of teeth over that!). I think the tiredness isn't from any particular med but rather from being 72 and having been in treatment for over 14 1/2 years plus having some other health issues. But I have lost 17 pounds this year, which is a plus, and felt very buoyed up at my appt with my new onc yesterday (old onc retired).
Stacey, how old are you and has your onc tested your estrogen levels? If you are premenopausal, estrogen could be hindering treatment.
There is much to be hopeful about. Alot of us with E + mbc do well for growing lengths of time.
Hi PJBinMI!
Thanks for sharing your long term experience with metastatic breast cancer. I was diagnosed with oestrogen receptor-positive breast cancer in March and started treatment in May. I was given the option of chemotherapy or hormone therapy. I chose hormone therapy, and I am also taking bisphosphonates (Zometa infusions) to help strengthen my bones.
My oncologist did mention that it would take time for the tumour in my breast to shrink, so you are right that it won't happen overnight. When I had my last CT scan in August, it was still the same size as it was from the PET CT scan I had in May, but it was changing shape, and she said it looked more like healthy breast tissue. So I have tried to be patient and I am pretty sure it is shrinking.
I hope that I can also live many more years with this disease. I am 39, so the biggest issue for me was suppressing the function of my ovaries, and keeping the oestrogen at bay. Your example is encouraging!
Sophie x
PjBinMI , thank you for your words. I was feeling a little down today as it’s raining here today and is very dark and all I keep thinking about is my appt on Tuesday with my oncologist to discuss results of scans I had last week. I will keep all that you said in mind while I am there . I feel better already just because of you. You and All the ladies here who have been in treatment for a while keep us new ones positive. Now it seems they put everyone on ibrance, which is what I am on . With letrozole and Zometa. Thanks for being you
Thanks for your words of wisdom, and it’s great to hear you are still doing well after all these years. I too have been living with lobular, Mets to bone, diagnosed stage IV de novo in 2010. I have had great runs with hormonals too, tamoxifen and arimidex along with zometa. This year we changed to faslodex and Ibrance, and my markers, always a good predictor, went haywire and my onc is thinking I should consider Xeloda. I am uncomfortable going to chemo, and would love to hear how your run with faslodex went, did your markers go crazy, did they even matter? My onc believes I may be getting resistant to the hormonals and targeted, and I’m not sure. Your experience would really help, thanks
Have you seen a bc specialist onc, at least for a second opinion? That can be really helpful as they are generally very up to date on the newest treatment options and best tests to run. TMs are not accurate for everybody and with hormonal treatment it is not unusual for them to rise when a new (to us) drug is working as dying cancer cells can confuse the test! Back when I was first diagnosed, in early 2004, the thinking was that hormonal treatment was much for effective for E + bc and that when a few (3 or more) hormonals had worked for at least a few months before no longer being effective, that is was possible to use a low dose of Estrogen for awhile and that then those same hormonals would often work again for us as the cancer cells mutate. My onc told me that she had patients with E+ mbc who would never likely be on chemo at all. That has been my plan--who knows if we will ultimately stick to that plan, but it's our original thinking. I can also tell you that when I have had progression, we have seen the CA 27-28 gradually climb over a number of months before changing treatment when scans have also shown the progression. It's been my impression that treatment is usually not changed based only on TMs. My onc always says she pays most attention to how i am feeling, with scans second and TMs a very very distant third. But I have been fortunate to have a lazy slow bunch of cancer cells that have been pretty easily controlled so far. I got nearly five years from Femara and over 9 years from Faslodex and now have been on Aromasin since early this year. I was on Ibrance for almost 10 cycles in 2016 and it left me with damaged lungs (Interstitial Lung Disease, like gunk between the air sacs) that has not improved during the two years I've been off Ibrance. I am not a medically trained person tho I have been trained as a bc patient advocate, and took some science classes in college. I have a suspicion that some of the newer drugs that are popular now, like Ibrance and Afinitor, are going to be found to have pretty serious side effects in enough patients that the few month advantage they seem to give may not be worth it for alot of us. A good friend died from lung problems from Afinitor shortly after it was FDA approved, so I do have a bias! I've wished that we could get info from the FDA and drug companies about all the side effects that have been reported and the number of each of them. Not all oncs and patients report side effects and that is too bad, too.
The bisphosphonates were real game changers for those of us with bone mets! Before the bone meds, bone mets would lead to multiple fractures and becoming bedridden and we'd die from pneumonia. But meds like Zometa have moved us into a situation where bone mets are usually not lethal! I hope you will do well for a long long long time! Sounds like you have a wise onc!
I agree with you and thank you so much for the well wishes! I can't imagine how horrible it must have been for women prior to us who did not have bisphosphonates at their disposal to help strengthen their bones. I do not want to be bedridden, unable to do the things I normally do.
After my second infusion in August I felt much stronger and that feeling has continued. It was hard explaining to older people that I "got" how they felt whenever they would talk about feeling frail and weak. I really did! Now I feel a lot like my old self again, a young woman, and that means a lot to me. When I saw my GP today for my monthly hormone injection she even commented that I seemed a lot better than I did the last time I saw her with more energy, and that it was good to see me taking control of certain aspects of my life. I see this disease as a challenge, but not one that is insurmountable. There are many ways in which we can help ourselves and improve the quality of our lives.
My oncologist is wise. I trust her and have done my best to follow her advice.
Take care,
Sophie x
How are you doing staceyness?
A Thanks for asking Juliandrea. Surprisingly on Saturday I was able to get the afinitor. Long story and 6 weeks later than prescribed but I got it through a compassionate drug company here in Canada. I was feeling pretty good before then, on only the exemestane. Since then though I've felt achy and my stomach/liver area has been hurting when I move. Not downright sick, but not great either. I have my scan next Wednesday and results on Friday so I'm really nervous about what they will tell me. My daughter is getting married in July and my son graduates high school in June so I need to be here for these special times. I just keep praying and reminding myself that cancer/doctors are not in control. He is🙏🏻 Thanks for checking in. Such an encouraging and hopeful group here gets me through many days❣️🌈❤️🙏🏻❤️🙏🏻❤️🙏🏻 Hope you are well😘
I may be going to IV chemo and I'm scared. Will it make me feel better or worse? So hard.
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