I’m popping on here, again, for your honest opinion and advice.
I have been OFF all forms of treatment since the beginning of January (when I was told there was evidence that Ibrance and Anastrazole were failing). A brief stint with Xeloda (for 6 days...6 days of pure torture)…and to tell you the truth, I FEEL FANTASTIC!!
I am still on long acting oxycodone for pain, but that’s it. It seems my team is grasping at straws as to what to do with me. They are kind and compassionate, but I get the feeling that they don’t know what to do with me. I am HR+\HER2- with no mutations. Just basic and I can’t figure out what is so difficult to treat. I also feel like I need to do my own research and am not given all the information I need when going on a treatment.
Has anyone here taken a break from Ibrance and put back on it with a SERD in place of an AI? I am going to suggest this next week. I hope my doctor doesn’t poo poo this. I did so well on Ibrance and I’m thinking it was more the AI that failed. I had already been on an AI FOR 8 years previously.
I’ve been considering a second opinion with the local hospital here which is associated with Mayo Clinic.
Has anyone had any experience with them? I don’t know how to go about asking for a second opinion. Has anyone here done it? What is my first step? I’m so stuck in this crazy ride with my cancer. It’s making me silly!!
Thank you to all of my MBC Sisters for putting up with me these last few weeks. I know I’ve been a lot!!
Just know, I appreciate ALL of your advice and I’m praying for you all. 🙏🏻🙏🏻🙏🏻🩷
Jody
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CTGirl1962
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I got a second opinion and actually ended up moving to that hospital that’s related to Northwestern Delnor in Geneva, Illinois. All you have to do is call that doctors office and tell them you want to make an appointment for a second opinion then you have to transfer your CT scans over to them so they can see them before the appointment. I’ve been told you can not go back on Ibrance once off of it does not work. I was told that by two doctors but who knows? The second opinion doctor did put me on Verzenio which is kind of the same as the Ibrance, but a different class, I was told and it did work for about 10 months. As you know I am now on the Xeloda, on my week off with lots of side effects now….. lol…. Of course! I would definitely get that second opinion to be off of everything for two months now doesn’t seem like a good idea.???
I’m on the fence about the little vacation. I was told that it doesn’t make a huge difference in the scene of things. At my age, the cancer doesn’t grow as fast. I imagine I have had it for much longer than when I was diagnosed. Who knows. All I know is I feel NORMAL!! And I’ll take it!! Who would have thought feeling normal was something we should NEVER take for granted. ♥️
Thanks, again, my friend!! I sure hope those side effects go away for you. I, myself, could not handle them. I felt like I was dying. I never got the HFS during those 6 days, but I sure wanted to die inside. I’m so glad they are tolerable for you.
CT girl, a 2cd opinion is the right thing to do as soon as possible. It can be hard to do emotionally but it is actually easy. Call and make an appointment and get all your medical reports/info to the doctor before you see him or her.Where was your progression? It doesn't make sense that your doctor jumped to chemo (xeloda) from Ibrance. The usual thing would have been to put you on Casodex.
Get your 2cd opinion and at the end of that meeting if you feel good about the session you just say that you want that doctor to take over your care.
It is great that you are feeling well - but I urge you to get your 2cd opinion soon - you don't know what those little cells are up to or where they are traveling!
Thank you so much!!! I’m on it MONDAY!! For sure. I’m emotional about it because my current doctor was with me 14 years ago when I was first diagnosed. Then, now, after 10 years cancer free. She is a breast cancer ONLY doctor but I’m not sure she is well versed in MBC. I do feel bad because she is a compassionate woman, but I’m just not sure she is assertive enough with my cancer.
Good for you. I know how hard it is l have had to do it more than once and my only wish was that l had done it sooner.Wishing and praying the best of plans and outcome for you. 🩵
Hi Elle, I just changed doctor's and got a second option too. I was tested for the p1k3 mut nad it was neg. I had been asking for more thorough testing to see if my original dx had changed. Finally, I had a bone biopsy and I am still waiting for the esr1 and some other testing to be done. However, and this is very interesting, my new dr. took me off iv chemo, last dr wanted to try another iv chemo, and I have been on everolimus and exemestane since the 14 of Feb. I have to say that although I had some bone pain in the beginning, I am feeling ok. Hopefully, by next visit the tests should be completed. I am still her2neg (low) but no amplificaton and estrogen 90-100%, progest50-60. Was higher in progest in 2016. Former dr said he did not want to "pair" drugs and told me I was hormone resistant, without doing testing and I have gone through 4 drugs in the last 2 years with tm's rising to nearly 5k. Second opinions are key to being proactive and not having to taking drugs that are so hard on out body and lesson our quality of life.
Remain assertive as there are new things everyday. I had just been through a separate primary lung cancer diagnosis and a right lobe lobectomy in October, prior I had one bone met in pelvic bone that had targeted radiation a year ago and was stable on Ibrance and Faslodex until recently when another two Mets were found in the spine.
Oncologist sent me for the special FES PT scan which only shows hormone/estrogen receptive reactions to confirm it was breast not lung cancer. She did this to avoid a biopsy feeling I had been through too much recently.
Then she ordered a liquid biopsy to see if I developed any new mutations and found ESR1. Simultaneously I consulted with another oncologist at MSK to see what her choices and train of thought would be in terms of treatments.
It’s is a full time job managing care. Especially if you intend to be proactive.
My advice is to get a second opinion and to take the info to your compassionate doctor to have an informed discussion. Then decide which doctor you connect with best. Please remember that your are the captain of this ship. It is your life and so at tmes, you must be assertive to save it. Good luck with you decision.
Hi NPMary, Just curious about Casodex. I had Anastrozole, then Ibrance and fasoldex, I was put on xeloda after. I never heard of Casodex and haven't read about it BC/MBC treatment and had to actually look it up. It states it is used for prostate/MPC and states this medication should not be used in women and children. As we all look for options, I am wondering why you say the usual thing would have been to use Casodex. Maybe I am missing something here.
Don't you just hate that!!! They really should have spell-check for us. I post and then read later and cringe if I see I have made an error. Yikes! Hugs Mary.
CTgirl, I agree that you need a second opinion. When you say you don't have any mutations have you had a recent biopsy to check for mutations ? When I had my recurrence (2019) my tumor biopsy was tested for mutations (specifically the pik3ca) which was negative but I've been told when/ if I have progression they need to redo the testing on any new cancer sites.
I also am surprised you weren't moved to Fulvestrant if you are er positive and had progression on an aromatase inhibitor . I have read of a lot of people moving from the cdk/ hormone therapy to Xeloda and I'm sorry Xeloda was so hard to tolerate . MBC is confusing and scary.
I haven't had to seek a second opinion yet . I would look up whatever large cancer ctr you are interested in talking to - it seems like with telegealth/video calls it could be easier ? Electronic transfer scans to second opinion oncologist - maybe you wouldn't need to travel ?
I was just tested for mutations in January and nothing. I do have a few, but none that have been studied (supposedly). I’m definitely seeking a second opinion so we shall see. 🙏🏻🙏🏻🙏🏻
Thank you for your response. Praying always for all of us. 🙏🏻🙏🏻🙏🏻🙏🏻
I just got a 2nd opinion from Dana-Farber in Boston. They want to get me in a trial of CDK 4 even though I was in it for 4 years before it stopped working. That was 4 years ago. I have no mutations and have blown through a lot of drugs since then. Have Mets in bone liver and lung. Mayo is #3 in the country for cancer.
I’m getting a second opinion from our local cancer center here and they are affiliated with Mayo. I live in CT. This is really awesome news for you!!! I’m sending prayers!! What is the name of the study if you don’t mind me asking? I have mets to bone and there is a “glassy” appearance of my lungs, but they never definitively said it was mets.
You know me, l o n g timer with MBC, 20 years with bone mets until about 4 or 5 years ago. Get that second opinion...your onc's people can make the referral and get you fixed up with a specialist. Mayo affiliated sounds great to me! Have you been on Fulvestrant (aka Faslodex)? I got over 9 years from it. If your blood work and scans show stability, this break could last awhile.... good luck and keep us posted both about your 2nd opinion appt and how you are doing.......... sending love and good wishes.
That’s my question!! Why not Fulvestrant!? I just don’t get it!! I’ve only been on Ibrance and Anastrozole! That’s it. 2 years. Why can’t my doctor figure out something? Only mets to bones with a glassy appearance to one of my lungs but they NEVER said it was cancer or mets. This can’t be that difficult!! This is what frustrated me when she decided to put me on Xeloda!! Way too soon, in my opinion. I’m calling the new cancer center to see what they need from me.
20 years with bone Mets? What has your treatment (s) been? Did you have progression throughout the 20 hrs….and where do things stand now? I only got 18 mos out of Ibrance/Faslodex. And now starting Orderdu.
Hi Jody! From what you describe about your situation I’d be in favor of a second opinion. I had to do this when I realized my first treatment team was not a good fit for me. I called the appt line for Duke Cancer Center and explained my situation and got an appt right away. Had a heart to heart with the head of the team and have never looked back…going on 4 years now. It is a 6 hr drive round trip each month due to having to get Fulvestrant shots which no one will do where I live but has been worth every minute. It certainly can’t hurt to talk to another team with a fresh set of eyes. Also teaching hospitals with cutting edge technology would be something to look for if you have one near you. Best to you…. Lin
I currently go to Yale Smilow. A huge teaching hospital with cutting edge technology, but I feel like a number sometimes!!! I called the local Cancer Center in my hometown (they are affiliated with Mayo) and they said they don’t do second opinions!! 😞😩😫
I’m wondering if my current oncologist has to refer me?
That is too bad. Some do second opinions, some don't. You have alternatives, though. My plan is to go to Dana Farber for second opinion when my treatments need to change again. Hoping to do virtual, but will go to Boston if I have to. You are 3 hours from Boston?
You can try MSK (Sloan Kettering) in NYC. One of the best in the country. I know they do second opinions because I had one there. There is a process that takes some doing, but once you sign up, they take it from there. You are only an hour and a bit from MSK. You can take the train from New Haven.
Also, MSK has a branch in Westchester.
No, you don't need a referral. My oncologist encouraged me to go to MSK for a 2nd opinion but she didn't have to do anything.
Strange that Smilow is not doing better by you, since they are supposed to be excellent. Someone who was on the board had a sister or something who is a nurse there and encouraged me to go to Smilow.
Dana Farber says that after a vacation from Ibrance, one can go back on it and it can work again, although not for as long as the first time. My onc. doesn't believe that and won't try it.
My oncologist won’t try that either (ibrance after a vacation but with Fulvestrant instead of the AI) or she makes a face when I suggest it. 🤷🏻♀️
I love my team at Smilow, but why not keep an open mind!!!? Boston may be a possibility, but I was looking for a place closer to home. Thank you for your suggestions!!
Google Ivermectin and HER2 negative. This can be added to most chemo/immunotherapy regimes. It has more generic targets and seems to work on many tumor types. I take 0.4mg/kg on 3 consecutive days each week. Zero side effects for me and overall good results. Your physician is unlikely to prescribe this but you can source good quality Ivermectin for humans online. I also take 40mg Lycopene and 400mg quercetin with bromalin daily.
I cannot believe that your doctors have left you without any treatment.
I also can’t believe that in America, there is not some other way that they would find another treatment for you. I think that you really do need a second opinion and I think you really do need to get away from the doctor you’re with that they would leave you without anything for that long. I was told by my doctors ….Three highly accredited top researchers, that if I was left without any medication at all to treat my Cancer, which is HER2 positive with a pic3 gene mutation, (different to you, I know,) but they said that I would not last for long.
I was also on Ibrance and Anastrozole for 5 1/2, nearly 6 years. When I came off it for 5 weeks just before Christmas, I thought I was going to die I was so sick. I’m so glad that you’re finding yourself okay not being on any treatment CTGirlie!!!! That is fantastic for you? But I worry that without treatment, your cancer may get the better of you.
I am now on a trial and they pulled Alpelesib/ Piqray out of the hat for me. From what you say I’m so glad that I didn’t get Capecitabine. Although I know it has been proven to do very well for some people.
Thank you for this!! I know. I’m feeling a bit of new pain that wasn’t there before so I’m anxious to get SOMETHING going. I’m praying that what ever it is, they will go easy on me. I appreciate your response and I’ll keep in touch. 🙏🏻🙏🏻🙏🏻
Coming back here again to say that I had about 5 weeks off all meds between treatments, mostly because there was a mess going on at my treatment center, when my usual doc mysteriously did not return from her regular annual time off, and good communications just completely fell apart with the new oncologist I was given to replace her. I was fatigues but otherwose felt good. When I finally got my bloodwork redone (a 6 week break between tests!) my TM had skyrocketed. So I felt ok but really the cancer was getting the better of me. So enjoy the time off but don't waste too much time before getting onto something else. Keep up with the bloodwork so you have a better idea of how you're really doing. Good luck with it all and getting a second opinion! I don't know what you had before ibrance and anastrozole but there are so many options out there. I'm also surprised they only offered you xeloda
I was only on Ibrance with Anastrozole before the Xeloda. 18 months. I was diagnosed April 2022. This is why I’m so upset. I am seeing her on Thursday and I’m going to drill baby drill!! LOL
Yes, fire away with your questions! There's a great video someone in this group shared. I think it's put out by Dana Farber, from Dec2023. The onc explains the standard way and order the docs work through to choose your treatment. Very informative! I have to run now but willl share if I can relocate it
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