Has anyone with estrogen posative cancer mutate to triple negative .been treated for bone mets since dec 2017 sailed along on ibrance combo till feb 2020 markers have always been low started at 32 but I have small in crease last few months upto 67 scan showed progression to liver . Had biopsy 2 weeks ago and the cancer has now mutated to triple negative so have to start iv chemo next week. Always felt safe with low markers how wrong was I. So let a new battle commence on this rollercoaster that is now my new normal . I wish you all the best with your treatments take care
Mandy xx
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Nannymop
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Don't know if this will help as my case is slightly different. I had that diagnosis also and my oncologist was thrown for a loop. Didn't know what to do. She was going to consult with the other oncologists. Got two different answers on how to proceed with treatment. I decided to get a second opinion from an oncologist I had seen before and that I respected. She said did not believe my cancer had changed at all. It was reading differently because the meds where doing there job and hence the different reading. She was right.
I would get a second opinion to be sure. Let us know if you do.
June - That is such incredibly valuable information! Thank you so much for sharing! Do you have any addition details you can share...Is there maybe a name for this phenomenon? I'm looking for something to google so that I have it ready if I am in the same situation...thank you!!!
Well there is no name. It is simply that the meds were creating the different reading. The meds were doing there job in suppressing the cancer. At least that is the report from the second opinion. She is a well respected and well seasoned Oncologist.
I did ask my regular oncologist to have another sample tested at a different lab but I don't think she has done that. I might ask her again.
I did report this experience on this forum earlier, (probably February) and Sandra responded with some thoughts.
I will have a look at the report from the second oncologist and post it here if I can without names. I have the records.
Hi Mandy: Well, I had to have my left breast removed because of an open sore caused by a tumour. That tissue was sent away and the result came back. The only other site of my cancer is in the left hip, which they can't biopsy and some nodules.
I had one month before, just switched from Tamoxifen to Ibrance/Faslodex for one month when the Ibrance was dropped (because of immune system and impending surgery.) Although I remained on the Faslodex injections until the surgery. (one month). Injections double in the first month as usual.
So you see my case was not straight forward. There were variables. Never the less the second opinion was sure the Cancer type had not changed at all only responded to the meds.
My new inexperienced oncologist wanted to biopsy one of the nodules but the group vetoed that as not necessary and I have remained on my current meds which is the Tamoxifen. I had decided the cost of the Ibrance/Faslodex was to costly.
Now! hopefully I will be able to get the cost of Ibrance/Faslodex covered.
I do hope this isn't to confusing. Best explanation I can give.
As I understand there are other examples of the tests coming back reversed.
June - Thanks so much for the great information/insight! I need to find a way to save posts/replies like this, some sort of "library", because it might be useful in the future but I'll have no recollection!! Maybe I'll copy-paste to a word doc or similar...
Glad if it might help. Yes, I am trying to figure that out also. Right now I just save the post to my archive mail box but really need to find another way. I am not good at copy/paste. I know it is supposed to be easy but I haven't taken the time to figure it out.
The other thought I had was to print the items I want to keep and file. Not to practical in this day and age however, I still like a hard copy.
As I said here is the part of the report from the oncologist, I consulted for a second opinion.
I hope this helps you understand how she reached her conclusion. This is her report verbatim.
June had a few concerns. She was concerned about the switch to chemotherapy now that she was told that her ER is negative and PR positive. I have indicated to June, unfortunately because she has been on Faslodex, which is a serum estrogen receptor degrader, there is an excellent possibility that the receptor status being not seen on the breast tissue is related to the Faslodex treatment. and truly she likely, is still highly hormone receptor positive with ER positive and PR positive, as it was in the original pathology.
Given the above, as such I do not think there is any change in treatment needed. I think it would be an excellent idea for her to continue with Faslodex and titrate the palbociclib dose in order to decrease any risk of febrile neutropenia. With regard to a small nodular area behind the liver, (liver is clear) I have suggested to clarify further maybe she should have an MRI done, just to make sure it is not a hemangloma.
At this point in time, I therefore do not think any change in therapy is needed. Certainly, if she does have progression on current hormonal treatment, the option may be exemestane or oral chemotherapy like Xeloda.
My current oncologist, knows the Dr. giving the second opinion and said she couldn't disagree with this report. Of course this possibility had not occurred to her.
Hope this information is helpful to anyone experiencing changes in Cancer.
Cheers, June S.
Hi Nannymop!
My gosh, I'm so sorry about this news...what an unwelcome surprise!
I think June's info is very valuable...I'm sure there are many instances in which the cancer really does turn TN but it certainly seems worthwhile to double check!
If it is, in fact TN, let me mention that my sister has had metastatic TNBC for 5 years...did chemo when first dx, then two surgeries along the way to remove lung tumors (these surgeries were not nearly as bad as they might sound...she still runs about 10 hours a week, no noticeable change in lung function) and is currently NED. And I've read about some new treatments, e.g. immunotherapy, that sound very promising....
Please do let us know how you make out...I'll be thinking of you!!
Thank you Lynn for your support and thanks for sharing your sisters journey ned right now hope it continues for many years .it gives me so much hope which I so need right now have cried for days thinking I was a lost cause . I do trust my oncologist and he promised me he will leave no stone unturned to help me .
I have had the same thing happen and don’t believe it’s that uncommon. Like others said, there are a lot of new treatments available for TNBC like immunotherapy and chemo works better on TNBC cancers. Your cancer can also morph the other way, too. I would look at it like you have more and better info and more possibilities for treatment.
My first recurrence was in a lymph node by my clavicle and was the same estrogen positive that I had in my breast when first diagnosed. A couple months ago I noticed a new lump above my clavicle on the other side. I had a scheduled PET scan which showed that new lump was cancerous. My oncologist sent me for a biopsy. He was very surprised when it came back as TNBC. I had responded well to the Ibrance Faslodex combo because the first lymph node had been shrinking. I am now going to start on a new treatment with Abraxane chemo and Tecentriq immune therapy. I don’t know what to expect. It is daunting to have to go through chemo again with the hair loss and other side effects. I have no idea what side effects the immune drug will give me. I just keep praying.
I am praying for you also. I think that if you believe in positive thinking you might try to imagine yourself healthy again. I try to stay positive using positive healing words. I tell my brain that all the things I am doing is healing me. I have read material that says the brain and body work together and the brain can help the body to heal. You will heal - just believe that and it can happen. You might think I am a bit of dreamer but there is quite a bit of scientific evidence that positive thinking has an impact on health. All the best. Marlene
Wishing you love and prayers on this new path, Mandy! Hope you get lots of rest throughout your chemo and gain back your strength quickly! God bless you!
I don't have any knowledge in the areas you are asking about. I did find some of the answers interesting and hope they may be of help to you. New options seem to be regularly available. My prayer is for you to find the one that is right for you. Hugs and blessings, Hannah
My sister had estrogen positive change to triple negative and have mets to her bones and liver, depending on which oncologist she wants to believe. Her markers were low also but now up to 55. Her original oncologist was treating her with Ibrance which MD Anderson said does not work on Triple Negative. So an entire year on the wrong treatment, therefore going to her bones. Now she has several blood clots and can not longer walk. Oncologist is working on a different treatment but she will be on chemo the rest of her life. This all began in 2011. One of the worst things that happened was when the chemo caused her jaw bone to deteriorate, so if you have any dental work that needs to be done get it done immediately. Prayers for you.....
My sister's started with shortness of breath, she kept telling her drs but they ignored it as a side effect from her chemo. Then her right leg swelled up like 3x the normal size. Watch your ankles as you can tell there first for swelling. Good luck...
Wow mutate to triple negative This is a shocker Sorry to hear this. I also have low markers rising and Ibrance stopped working. I wish you the best and glad to see that there is treatment for this too.
It seems to be caught early this could be helpful. Stay strong and positive
Thank you for your reply I think it's about 20 percent that do mutate to different strain after a progression was shocked because markers low the chemo is carboplatin.i wish you all the best with your treatment xx
So sorry the Ibrance stopped working. How long have you been taking it? What treatment will you be changed to?
God bless,
Carolyn
I didn’t know it could change but maybe this is normal. Somebody here may be able to help you. I just started Chemo yesterday due to progression in my bones. Do you know which med you will be getting ?
I hope chemo kicks your cancers butt and you can feel well. Please keep us in the loop.
Exactly same thing happened to me. I was 100% er/pr positive then mutated to TN and liver. Been on iv chemotherapy and immunotherapy since oct. 2018. Yes, 19 months. It’s working though! Mets have decreased and are stable. I hope all goes smoothly for you.
I was also on ibrance and faslodex for A few months.
Sorry to hear that you are having a difficult diagnosis. I hope the IV chemo works for you. I am going to be thinking about you and hoping you get back to a good level again. I think you should get a second opinion before you have your chemotherapy though. Chemo is so harsh. I just wish you the best outcome. Hugs Marlene
I just was diagnosed triple negative too! Have had 3 surgeries, rads and in between on Ibrance, Letrozole, then Xeloda. At first was mildly Er+! Nothing stopped the progression in my multiple bone mets! So as triple negative, now will try Abraxane and hope it works after 9 months of nothing slowing the cancer progression! What chemo will you get?
Hope you find a good treatment! I guess that’s always the goal.
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