Triple Negative Stage IV
Comments
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Sherbab, I just got refused for one trial, PD-L1, because I wasn't a match. My MO has 2 more trials she thinks I would match for, one is taxol and a trial drug combo - I wonder if it is the same as yours. Because we had to wait to see if I was a match, and I have a high grade cancer, she started me on Halaven. (she didn't want to wait and have me on nothing). After being on Carbo/Gemzar and noticing no shrinkage, I see shrinkage after just 2-3 tx with the Halaven. My ANC levels have dropped though, so I am alternating between nuepogen and nuelasta. If and when Halaven stops working, we will revisit the trials again, but for now, we're not going to stop if this is working.
Other than fatigue, I too have not had bad se's. I have noticed handfulls of hair coming out when I shampoo, so I guess I'm on my way to losing it again. Maybe that's how I know it's working.... The drugs that did nothing to my hair also did nothing for the tumors.
I hope the Dr.s can determine if yours is working in a short period of time. Keep us posted on your progress. (((hugs)))
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Wow, it has gotten busy here.
Allison - there are LOTS of drugs/combos to try yet, and definitely check out clinical trials for new drugs coming up for TN's. Some new research is showing promising for testing/treating Androgen positive BC, even in TN's. I have a list of clinical trials I want to try if I can. I haven't waited to see if I qualify because it seems to take a long time to get tested. Usually, you can get tested for a trial while still receiving tx. I am on my 3rd try at a trial. I am looking within a 200 mile radius of me but might even consider flying somewhere if there is a good trial to try. I also can feel lumps in my neck. I am going to get taxol #6 this week, then get a scan. I don't think it is shrinking much. I will probably go onto Gem/Carbo if it isn't and continue to check out trials. Glad you are getting checked out before your next treatment.
Welcome Keldel - your mets is very similar to mine.
Welcome Springwatch - keeping my fingers crossed with you.
Slow - I haven't been on Halalven so can't really tell ya. I love your outlook. I, too, try to live in the moment and enjoy life. That is what we all should do, cancer or not!
Sherbab - since you can jump out of the trial if you want, you have many options. You can try for another trial while continuing or doing a different drug. Hope you get a plan in place as that always makes it more tolerable and less anxiety!
Carpe - Welcome and praying for continued NED!
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Slow - sorry you didn't get into the trial. I know how disappointing it is. You know that a lot of times you can test for a trial even while you are on tx. I agree, that I wouldn't want to be on nothing. But, I continue to try for trials so that IF/WHEN the current regimen isn't working, I might have something ready in the wings. I am finding that it takes so darn long to get into a trial, I am going to continue looking/testing. Maybe you could ask your MO if you could go ahead and at least see/test if you would qualify for the other two trials she is interested in?
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Just a note to those who have mentioned money being tight. Did you know that you can apply for Social Security Disability when stage IV? I didn't know until I saw someone mention it on a thread some time back and remembered it after I got the mets dx. It is almost a given that you will be approved and they put it on a fast-track. It is called compassion allowance (CAL). Someone in the office helped me apply which only took about an hour. 3 weeks later, I got a letter of approval and a few days after, a big check for the past year. They back-dated mine back to 3/1/13 about when I lost my last job, but you have to be out of work for 5 months, so my allowance started as of 8/1/13. I start getting a regular monthly check in a few weeks. Just thought I would mention it in case it would help someone here, now or in the future.
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Hello ladies I am new on this thread but not to BC.org...
I survived Spring Break 2014! Lol...
For staying in town, I was a very busy momma shuttling children from one place to another. We all had a very nice week off but I feel like I need a vacation from the kids vacation from school!
Speaking of vacations, our family has been nominated for one of the Karen Wellington Foundation (for women living with breast cancer to have a vacation with their families) vacations and are trying to schedule a week. The best week in June would mean a delay for my chemo. The oncologist has approved a delay but my husband thinks it will just mess things up and is very against it. I am feeling stubborn and am bound and determined that this stupid cancer will not rule my life anymore than it already consumes it. My big question is... How do you manage life? Schedules? Vacations? Events? Am I being unreasonable? Is changing chemo for one week stupid? Is this my one golden ticket to change the schedule forever? I'm not planning on changing my chemo schedule on a regular basis and I really can't think of anything else in the near future I would do it for... But...
I hope everyone is doing well and thanks!
Kate
wwww.katebeatingcancer.blogspot.com
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Hi Kate,
I'll have to miss chemo on the 9th of May because my son is graduating from law school and we need to fly to Indiana on the 8th, attend graduation ceremonies on the 10th and come back on the 12th. My oncologist does not have a problem with it, so neither do I. I usually do not plan more than 3 months in advance because of the stage 4 diagnosis but I had planned to go to Alaska before my stage 4 diagnosis. So I'm going to Alaska in July! I think it is more important now more than ever to get to do the things that we have always wanted to do. Changing chemo for one week is not stupid. Have a great vacation with your family!
Hugs,
Brenda
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Hello to all,
I have made no firm plans for a chemo break. I am doing weekly taxol at the moment but if it is working I am going to ask for a break after 18 rounds so I can have a week away. Quality of life is about being able to do the things you want to do sometimes, rather than being always tied down by hospital appointments. If your onc approves it, enjoy!
Another forum member, English Major, posted a link to the LBBC conference that took place a few days ago.
How Far We've Come: Advances in Management of Metastatic Breast Cancer
It is a bit "technical" but very interesting and informative. The segment on TN starts about 45 mins into the talk. Lots of interesting work going on and mention of trials.
The Q & A, which follows, is well worth a listen, too. I was interested in her response to the question on the changes in receptor status & bone biopsies which require decalcifiction giving false negative receptor status. Also, the use of tumor marks in monitoring Stage IV disease. It has made me relax a bit more about mine.
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I just got a message from Mary's daughter Rachel - I'm going down her topics and posting this for her. She said, ".... It breaks my heart to tell you but mom has gone down hill. Weve had to call hospice in today. I let her know I've gotten in touch with yall. If you can pass the message to her friends or people yall talk. Thank you."
Edit: She also wanted to let us know how much she loved you all. She looked so forward to getting on here and tellin yall stories and hearing about your lives.
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Gma, please thank Rachel for the update. So sorry to hear. I wish her comfort and strength.
Brenda
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Hi Kate,
If you oncologist is ok with then I would have no problem. I have delayed chemo a few times due to vacations. I still need to live my life. I look at it that it is no different in getting a delay due to low counts.
I say go for the vacation. Sounds wonderful
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Gma, sorry to hear this, while I did not know her I but definitely pray for her and her family during this time.
Slow, thank you for your update on the Halaven, I am going to push through until the 28th of May when I get restaged but they said if there is any sign of progression I will be removed from this trial in particular so I have a feeling they will pull me out because I have found the new lymph node or tumor, not sure which but I will see it through to the testing and then determine if there has been any success since I just started my 2nd round. My trial is Taxol and Bay (trial drug is called Bay and it is by Bayer). If you do go into that one I will PM you some of the details they forgot to tell me about for the first three weeks....they were some VERY long days.
Brenda, so excited for you to be going to Alaska. We were supposed to be leaving on May 16th for Alaska but the clinical trials is not as forgiving on the schedule as my regular MO so we had to cancel and if I get any break where we can manage a quick last minute trip we are going. I do not have a bucket list but this is #1 on my to do list!
Quality of life is definitely important to me during this time - getting this somewhat stable has to be a little more of a priority so I deal with the rigid schedule for now but if I find that things just aren't working like they should I may jump out of the trials and stay local and try the Havalen. Picking up and relocating 3 - 4 days a week to Houston is taking its toll and we are only in cycle 2. Thankfully it is only a 4 1/2 hour drive and it is drivable but being home has its merits!
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My heart goes out to anyone who works full time and must endure debilitating side effects from chemo. Unless of course it is your choice, it's your way of coping, and the s/e's aren't that bad.
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Gma thank you for letting us know, it breaks my heart to hear.
Sorry I have been absent I have been reading just not typing.
Kate hope you go on the vacation and have a great time.
Brenda enjoy Alaska!!! My husband would love to go there. I just think 'burr".
Slow sorry about not getting into the trial, hope havalin works for you.
So on April 1st I had my first round of carboplatin, by the 5th I could feel a difference in the tumor on my back. I also did 2 weeks of xeloda. When I went back for carbo # 2 on the 22nd my platelets were too low to get it. But when they examined me the 2 x 3 cm on my back had to be felt around for, my liver functions were back in the normal range and the liver had shrunk back to almost normal size! Went this week to get the carbo and platelets still to low (they had given me a super mega dose) so I am going to start the xeloda back up and we will try again next week for the carbo. All in all I feel better than I have in MONTHS. Carbo is my new best friend at the moment.
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Way to go, lostinmo! I am only getting carboplatin once a month. I don't have the strength to do weekly!
Hugs,
Brenda
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Brenda I'm suppose to be every 3 weeks but it looks like it will be at least 5 before I get the next one.
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Hi Lost - great news. So glad you shared. Maybe they can just lower the dose a little so you can get on the 3 week schedule. Hope it all works out.
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Today my wbc, rbc and hgb were low. They gave me gemzar anyway, at a lowered dose.
Hugs to all!
Brenda
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I just heard from MaryWH's beautiful daughter Rachel. She said, " My mom went to be with Jesus". She passed about 2 hours ago.
She always loved my turkey pictures and encouraged me when I was down. I will miss you Mary, rest in peace and have a party with Jesus for us.
I started an angel page: https://community.breastcancer.org/forum/56/topic/820797?page=1#idx_2
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Thank you for letting us know Gma. Prayers for her family.
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Rest in peace, Mary.
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Fyi. News about a leukemia drug that could be a used as a targetted therapy for tnbc ... http://www.medicalnewstoday.com/releases/276246.php?tw
Just came across on one of my facebook feeds but looks like it was announced on May 2.
-k
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It does look like more time is being devoted by researchers to tnbc! Thanks for sharing, k.
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Was able to get the carbo on Tues, and they did lower the dose.
So far so good with the side effects. 0 -
My MO sent tissue for Foundation One gene testing. It will change my treatments down the road. The most profound
change is that it said I am BRACA2 positive! My original tumor was
sent off to Clarion in CA and the results said BRACA1/2 negative. They
do it with a blood test, but the Foundation One tests tumor tissue so
maybe it is more accurate? Or maybe the tumor mutated? I don't know but
it is important information. I will probably now have to have a hysterectomy down the road.The test also found amplification in
EGFR which there are FDA approved drugs that I could try. The third
mutation was in TP53 gene and there are some trials that are testing
drugs for it, so it has really increased my options. I would say it was
well worth it in my case.My CT Scan showed I was "stable." It showed some regression in most of my nodes. I'll take that! My MO was pleased.
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Cat - how long did it take your MO to get the results back on that test? I signed the release on sending my off for Foundation One testing when I had my very first to the clinical trials side of MD Anderson and that was at least 7 weeks ago and was just wondering about it this week. I actually don't see my doctor again until the 28th of May so I was hoping they might have something by then.
It sounds like these results along with your CT scan made for a interesting appointment! I can't wait to see mine now. I had no idea what sort of things it would report out.
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Sherbab - My MO said usually 2-3 weeks, but when they first sent tissue, they didn't have enough tissue. So, I underwent another biopsy, this time on my neck nodes, then they sent more tissue and then it only took 2.5 weeks (it said tissue received 4/22 and report date was 5/4/14). Your results certainly should be back, I would think. Wishing you the best results!
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I guess I am wrong on Clarion doing the BRCA1/2 test. I looked back at
the reports. It was done by Myriad and was done by a buccal wash (dna
from inside the mouth). I also had the King Laboratory do the BROCA
test that also tested BRCA1/2 by blood and was found negative also. So,
this is very interesting.0 -
I wonder how this genetic testing works in Canada. I have an appointment with my MO this week so I'll ask him. Any other Canadians on this thread had genetic testing done?
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The website for Foundation One is foundationone.com where your physician can get more information and an account to login.
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Thanks CatWhispurrer. I will tell him about this.
~Kelly
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