Triple Negative Stage IV
Comments
-
FYI- BlaineJenner pointed out a promising new clinical trial using immunotherapy that requires NY-ESO-1 expression, which occurs in 25% of TNBC cancers, and is available at multiple places, here is the UCLA version
https://www.eurekalert.org/pub_releases/2017-09/uo...
0 -
thanks cure-ious. I only have liver mets and that is a disqualifier from what I read (last point on the excluded criteria). Sounds like a great study. Not sure if I have the NY-ESO-1 expression. Plan to get biopsy and genomic testing if carbo/gem stops working..
0 -
New here to this site and this thread.
Dx 1998 ILC left, HR+ HER2- Chemotherapy 4 rounds neoadj FAC & 4 rounds FAC after surgery; Surgery lumpectomy with sentinel node mapping removed 30+ nodes, 3 positive; Radiation for 5 weeks; all treatments done at MD Anderson. Tamoxifen for 5 years; Arimidex for 14+ years
Dx 5/30/18 stage 4 ILC with mets to bones; began Taxol (taking weekly infusions at local cancer center)..... return to MD Anderson later this month for scans to see if it is helping
Live on gulf coast of Mississippi.
0 -
I'm so sorry - 20 years! That sucks so hard. You almost wonder if you're safe, but nope, we never are.
0 -
my mom has developed cardio toxicity from all the chemos. She was on carboplatin Gemzer. Since last 8 or 9days, she has been hospitalized 4times, her LVEF went down to 20% gradually, came up with severe breathing problem, palpitations, left hand pain and restlessness. They started medication but cardiomyopathy is getting worse. There is mild pericardial effusion but not that much to remove water. Her chemo is stopped and She is in CCU. We are lost, don’t know what’s going on.
0 -
So sorry, Sharjin. I can't offer advice, but I can offer my heart, prayers and support.
0 -
Hugs, Sharjin.
0 -
sharjin
Sorry about your mom. I hope the tx for her cardiomyopathy is successful. Payers and hugs to your mom, you and your family
0 -
southmsfrog: are your tumors triple negative now? I saw where your initial tumor was ER+ and HERS -
0 -
just checking on everyone. How are you doing?
I just returned from a 5 day trip to Glacier National Park. What a beautiful place. The weather was perfect, Sunny’s d low 80s, no humidity like here in Georgia. Had a great time. Nice to get away and not think about cancer awhile.
Praying for everyone. Take care.
0 -
Hello Hartrish. This thread has been quite for sometime. So good to know that you went on a vacation and enjoying life. Hope Gem Carbo works for you long long time. My mother has been on a roller coaster since last 2months. Her heart function deteriorated so much that was working only 20%. She has been hospitalized so many times, probably 7 to 8 times. One night we thought there won’t be any morning. By the grace of Almighty, she is still here. Struggling everyday. Apparently After 5cycles, doctors are saying Gem Carbo probably stopped working for her. At first, her metastasis was at pleural space Andrea had pleural effusion that was being controlled with Gem Carbo. Now doctors found pericardial effusion, water around her heart. They have removed it, she will have her next scan on next Monday. Don’t know what’s waiting for us.
I cry everyday seeing my mom going through this. I just want to be with her but I can't as I am in Canada, waiting for my first baby, she is in Singapore for her treatment. Every night how I wish to hug her, how I wish to feel my mom is with me.
Best wishes for everyone and your families. Know that everyone needs you and loves you.
0 -
Sharjin: So sorry about the course of your mom's treatment. I hope they are able to find a treatment that works effectively for her. Let us know what her next scan shows. I am sure it is difficult to be that far away from your mom.
I pray every night for the women on breast cancer org site for complete healing.
I wish a cure was around the corner.
Tricia
0 -
So... good news, bad news, good news? The brain mets are smaller, but I have new mets in my liver and enlarged lymph nodes in my chest that lit up on the PET scan, BUT the liver biopsy shows that the cancer has mutated to 36% estrogen-receptor positive, which gives me more treatment options. Yay? So the plan is to start weekly chemo to shrink them, and then try hormone therapy. We shall see.
0 -
riley702: I am so glad you have more options for treatment for your positive hormone liver mets. That is great news. Stay in touch and let us know how the new treatment is working.
Take care
Tricia
0 -
Artemis is a newsletter that is published by John Hopkins Breast center each month. It summarizes results from breast cancer research studies. You can enroll to receive the newsletter each month. It has findings for triple negative breast cancer studies. I am always looking for results of studies and this seems like a good site. You can also go back to archived monthly newsletter.
Here is the link: http://www.hopkinsbreastcenter.org/artemis/
Hope it is helpful to others. If you have other resources for finding research results, please share.
Tricia
0 -
Thanks, Tricia. I subscribed and also read an article in this month's newsletter called "Putting The Brakes on Metastasis" or something close to that title. Good stuff and hopefully going to human trials in the next few years. I want them to be pushing at this from every possible angle : -)
0 -
Hello ladies!!
Just returned from my mom's MO appointment. 3.5 cm lesion on the right adrenal, 1cm in lung and possibly something on the liver. Not sure, still too small.
Our MO is giving us a referral to princess margaret hospital in toronto ON canada where there are clinical trials for immunotherapy and more specialized treatment. This however could take a couple of weeks. Currently my mom is symptom free. My question is do we wait for the trial? Or should we begin weekly taxol *sp* treatment at our local hospital. Obviously I fear significant irreversible advancement. Our MO said she thought it seemed safe to wait but who knows. Anyways, any insight or info would be greatly appreciated. This sight and the wonderful and powerful women here has been our source of strength. Thank you all and God Bless.
Katherine
0 -
Kcan: if she starts the taxol tx and then is eligible for a trail she probably will have to wait a few weeks to get taxol out of her system before starting the trial. Just depends on the trials.
Can you contact the trial place and push them to get her in soon? Don’t wait for your doc office to follow through. Follow through with your own calls to push through as fast as you can.
It is hard to know what the right thing is to do. I would call the trial place and get that balling rolling as fast as possible. If you are uncomfortable with the length of time then maybe start the taxol.
Prayers for your mom and you
0 -
Hartrish, Thank you so much for your response!!
We received our results last Thursday and Friday morning when I called to see if we could speed up the referral process the original hospital said they already sent the paper work. I will call the trial hospital Monday morning. In the meantime I have signed up on trial finder recommended by a woman on this site and hopefully will get in touch with them asap. Our MO said if she starts taxol she can't do the trial. However I already fear it's too late and she should start chemo this week...I don't know what to think...regardless I'm pushing for the trial.
Mom says she feels something in her chest, the same location she had cancer and where the lumpectomy was preformed, this has been on and off for months but is worse now. She had a mammo there recently, MRI and her MO/ surgeon/ myself check and nothing has been seen. At this point she really doesn't want to do chemo. I'm trying to be as positive and forward thinking as possible. We go to a naturopath ONC as well, take rick simpson oil (which is very helpful for sleep if anyone is interested) and I just don't know what else to do. I am at a loss.
This thread has been very quiet, how is everyone doing? I want you all to know you are heros. Through this wretched, unending battle your generosity in sharing personal experiences, advice and prayers has been the most powerful medicine.
Sending lots of love and light,
Katherine
0 -
I agree with Hartrish to call the trial people and push-push-push. I'm a type A person so I almost can't stop myself from pushing. I was on a first name basis with the trial people by the time I got in. Don't know if it really made a difference, but you know you did your best to make it happen. Besides, it gives you something to do which shouldn't be sneezed at.
0 -
had my MRI (abdomen and pelvis) and CT scan chest yesterday. Tumors in liver are still shrinking. Yea!! Staying on carbo/gemzar for now. No new spots of cancer anywhere. Sept 8th will mark my one year on chemo (carbo/gemzar). So thankful I am still on the same drugs and they are still working.
Leaving for Florida tomorrow for about 5 days before my next treatment.
Kcan: what drugs are in the clinical trial you are looking at? Some of the trials mix immunotherapy and chemo drugs while others only do chemo or immunotherapy drugs. Just curious. I try and stay on top on any new CLINICAL TRIAL results for TNBC. Always searching for next possible steps. Hope you guys can make decisions soon about which treatment options you are going with
Praying for everyone. Hugs.
Tricia
0 -
It looks like my liver mets are responding to the Halaven and Keytruda, I just got a call from the nurses with a preliminary report. I'm very relieved to receive the news.
I've cross posted in a few places.
0 -
hello All,
Hartrish that is great news!! I'm glad your chemo is working!! I hope it continues to work for a very long time! As far as trials I was really interested in a combo of immunotherapy and chemo and was hoping for an immunotherapy called Maraba. It is still relatively new so something like keytruda and halaven may be a better option or atezolizumab and nab-paclitaxel. Apparently Mets to the adrenal gland is relatively rare and it's more difficult to find info. Have a wonderful and relaxing time in Florida!
Winning, i just got word that the hospital we were trying to get into does not have any trials for her and reccomended a different hospital. Now we are faxing her info over again. I just think we should start chemo. I feel like it's already been too long and I have no idea how long everything will take. My mom is pretty down right now. I think she feels betrayed by her body and really does not want to do any chemotherapy. I think she needs time to just digest and yet we don't have time. We are meeting with the radiologist on Monday to see if there's anything in the bones and weigh in on his opinion. I wish I could take this whole thing from her.
KPW3, that is excellent news!! I am so glad for you! I hope the keytruda and halaven work wonders and get you to NED!!
Has anyone had genomic profiling done with a liquid biopsy? Just curious how it works and if it was helpdul/ user friendly, easy to do/ affordable.
Praying for you all and wishing you much health and peace,
Katherine
0 -
Kcan, I had a liquid biopsy at one place (MGH), followed by 2 genomic studies with my liver biopsy at two separate places (MGH-did give me the report and Dana Farber-who have their own study and don't share the results with their patients). The liquid biopsy showed Tp53, which showed up on one of the biopsy studies from the liver-but they consider this a non-actionable mutation since there isn't a potential drug or didn't at the time(or the mutation wasn't showing up in enough tissue?). There was an additional mutation in a small amount on the liquid biopsy that didn't show on the liver biopsy studies. I think my insurance went back and forth with MGH....
Also, there is a woman with a blog-Barbara Bigelow that had a mets on her adrenal gland and bones and she was one of the first patients on the Keytruda & Eribulin trial. It almost killed her with her immune reaction (she was in a coma for several weeks) and her adrenal glands no longer are active-ie life long medication dependent, but she has been cancer free for several years. This is my recollection of what I have read from her blog....
0 -
hi All!
KPW3, I think it's great that you had access to Genomic testing and a liquid biopsy. I know for sure our primary care hospital does not perform such procedures. We did have genetic testing done for brca 1/2 but both were negative.
Thank you for the info on Barbara Bigelow, a little scary but very inspiring. Especially since I don't see much out there in regard to adrenal activity and tnbc.
The hardest part is trying to get the referrals through! I am on the phone multiple times throughout the day to try to get her into a different hospital. The first, princess margaret said they had no trials at the time and now we are waiting on Sunnybrook (more clinical trial options there, wish I had known that before I requested princess margaret). I feel like this is waaay too long to be without chemo (diagnosed July 30th with 1.5cm lung met and Aug 9th with 3.5cm adrenal met and possibly liver activity still early to tell). However our primary MO said that chemo wasn't urgent (taxol to begin with) and that she had this cancer in her lung and adrenal for (quite possibly) a long time. Her lung and adrenal were suspicious prior to her lumpectomy 2 yrs ago. None the less I've asked our naturopath oncologist to further review her case to see what he thinks about beginning taxol asap or wait for that trial or both. We also have an appointment with her radiologist this Monday to get results for a bone scan. He's good and has some pull.
This whole process has been pretty painful. Has anyone seen terms of endearment? When the mother is pushing for the pain meds for her daughter? I feel like the mother.
I pray for all of you strong, amazing women every day/ night. Take care. Sending you positive and healthy vibes.
Katherine
0 -
kpw3: wonderful news! So glad for you,
Kcan: I have not had liquid biopsy or genomic testing on tumor. That is my next step once carbo/gem stops working.
Hoping everyone has a good weeken
0 -
Also posted in liver mets thread.
So my tumor marker (CA 27.29) this week is down to 52.7. Lowest it has been since July 2017 when it was 3585 when my liver mets were first dx. Praising the Lord this morning for the results. It is our 32nd wedding anniversary today so was a great gift today. Praying the carbo/gemzar continues to work for a long period of time. I know 11 months on this same drug regimen has been a miracle in it self.
How is everyone doing?
Prayers and Hugs to all.
Tricia
0 -
Tricia, Wow! Great news! The carbo/gemzar is great for you....I hope I find something that works for me for a significant time.
Happy Anniversary!
0 -
That's excellent news hartrish and Happy Anniversary
0 -
That's excellent news hartrish and Happy Anniversary
0
