Triple Negative Stage IV
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kaayborg I know that we are both on the gemzar and carbo. When did you start taking it? You said it is good to you and bad to your liver mets. What kind of test did you have to take to see if it was working and how soon after you started it did you have to take the test to check it. How have your liver mets improved? Do you have pain? If so what do you take for it?
I am concerned because the pain in my upper left back and sort of around under my left arm is getting worse. The dr gave me tramadol, but it does not do anything. I went for a Pet Scan on Thursday (7th) so I am waiting to hear about the results.
Lauralind I too am taking carbo since October. What do you mean by bbb?
Thanks Ladies for any info.
Rosieo
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Rosieo, I began gem/carbo the end of Aug. as quickly after my stage IV dx as possible. More than half of my liver was filled with tumors, smaller ones being too many to count and at least two larger (10 x 6 and 10 x 7 cm, think medium potatoes). Before chemo took away my pain due to liver discomfort, I found 5 mg of oxycodone helpful (10 made me dizzy and nauseous). I had a CT of chest, pelvis, and abdomen 9 weeks after starting treatment and it showed that gem/carbo had cut the mets down to less than half the liver (this is an estimate the amount of the liver compromised...it is not actually contained to just one lobe or half of the liver but widespread). The two larger tumors are measured each scan to check treatment effectiveness. At 9 weeks they measured roughly 2 x 4 and 4 x 6 cm. My 18 week scan showed no reduction in size. I'm due for my next scan in 3 weeks. Still feel great so hoping this is indication of more stable scans. Praying for great results for you, too!
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Kaayborg
Thanks for your response. I had my Pet Scan on Thurs the 7th. Will not see the Dr until when I am supposed to get my Gemz and Carbo treatment.on the 19
Too anxious to call to ask about the results. :=(
Rosieo
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Rosieo, my next gem/carbo is the the 19th too, though I doubt I'll receive it b/c my platelets are so low. I'll be thinking of you.
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kaayborg and Rosieo....hang in there!! You are both in my thoughts and prayers
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Hello again Ladies (and homehelp too if you are following still)
Unfortunately I'm here for good. The good news is that my lungs are clear. The bad news is that I have possible bone mets and that while I was taking Xeloda my remaining breast underwent obvious changes. That was after only a few weeks. So it's on to Plan B for me but unclear what it will be.
My MO mentioned two standard treatments gemzar + carbo (which it seems some of you are on) or Eribulin. I asked her if there was anything in a database which might indicate which way to go depending on my tumor's characteristics, but apparently there isn't.
Were any of you offered Eribulin? I saw an article which indicated that Eribulin didn't have any better results than Xeloda.
I'm hoping to get on a clinical trial for PD-L1 but don't know if I will qualify because I might not have 'measurable disease'. My MO thinks it might be my best chance since I'm still 'healthy' except for the cancer.
Thinking of all of you!
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I start carbo tomorrow. Well later today actually. Rosieo I have brain mets so we are trying what she thinks may have a slightly better chance in reaching my brain. The brain has a protective mechanism called the blood brain barrier where only small molecules can pass through.
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Rossileo, my onc has mentioned all of the treatments you mention to me. I am doing gem/carbo for its frequent success with liver mets, then the plan was xeloda. However, she's switched that now in light of new data and wants me to get into a pd1 trial after gem/carbo instead. Eribulin came up as a potential treatment on my geonomic testing report. She said this was only standard care for hormone receptive cancers but they we could petition ins. company based on age (38) and the foundation medicine report and perhaps they would cover it as standard care. Could also try to do as a trial but eribulin was down the list for me as far as order of attack.
Thanks, Texasrose. Been thinking of you too. Hope all is well.
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Kaayborg,
Thanks for info. It's so hard to deal with this hit and miss approach, but it seems that's the 'state of the art' right now. Hope you can get into the trial too.
Rossileo
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Kaayborg my onc switched to carbo in light of new data as well. It was going to be xeloda next but she mentioned the pd1 trial too. Right now we have started the carbo and see how this does.
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Hi Ladies it's been a while. DH and I have been busy moving to a 55+ older community and so we have been busy. Also his medical renewal hit in January and boy what a nightmare that has been. Hope all of you are well. I'll try and check in more.
I had a scan this morning so we will see what the latest treatment will be doing for me. I am taking Doxil once a month. I tried eribulin and xeloda and unfortunately they didn't work for me. If this scan shows progression then we will be trying another study trial. Not sure about those feel like a test animal sometimes. Well more later. Luc
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Rossi, I am still following from a distance
My wife as I mentioned is on the PDL1 trial
She is tolerating the abraxane well and gets the pdl1 drug or placebo twice a month
Thus far the major side affect is fatigue as you all know
She has had 4 cycles with great improvement for her liver lesion
I truly believe that immunotherapy is here to stay and if these drugs can unmask the tumor cells so the individuals T cells can destroy the cancer as in melanoma that's great
I suspect from the research that some of these triple negative tumors will test postitive for high concentration of pal receptors so hopefully it won't be calledtriple negative anymore but there will be specific targets , not necessarily hormones .I continue to wish all of you speedy recovery and a happy new year .
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homehelp and kaayborg
How can I find out about this PDL 1 trial. Also any one here on pain meds. If so what are you taking?
Thanks
Rosieo
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Rose
The trial started for patients with TN and who had measurable disease
They initially wanted 350 patients and now extended to 750
As with any study there are certain requirements but I think even some of those are being changed and perhaps your MO can get you in
For example , initially they were limiting the number of patients with liver metastasis and I think that has changed
Check out some of the videos on onclive
Lots of new treatments coming out and I hope if the studies show positive results the FDA will fast track these drugs soon
Hope this helps
http://www.antipdl1clinicaltrials.com/breast-cance...
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Thank you Homehelp. Wouldn't it be a glorious and happy day if they can find the cure
Rosieo
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Kaayborg and Rosieo,
You are both on Gemzar, carboplatin. I don't know if I'll qualify for any trials (waiting for pet scan on Wednesday). Just wondering how will you are tolerating side effects and whether you are working, since gem/carb is my backup plan. I am trying to transition my duties, but there is do much to do. I worked through AC + taxol but that was just 7 months.
Rossileo0 -
Rossileo, I have worked through 6 months of gem/carbo. I'm a bit fatigued on days 3 and 4 and have some muscle aches but nothing so bad. My counts are now borderline and I expect I will not receive treatment today due to low platelets. A few days ago I noticed bruising where my port catheter protrudes a bit, also near a pimple I had (gently) squeezed. Then upon searching a few more on my legs where I must have bumped into a few things. Hoping to still get many more months of gem/carbo even if I have delays.
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Hi ladies
Well i had my pet scan last week. I didn't even call to ask about it because I was afraid to hear any bad news. My appt with my MO was today to get my Gexmar and Carbo but when I spoke with the Dr he said according to the Pet scan it is not working and has progressed. Sorry about this bad news for you kay as I know you are on it but as they said what works for one and not the other. so with all hope and prayers your treatment willwork fine for you. So then he does the same thing to me as he did before. He asked me which of three chemos do I want to take?? Duh! Again, who is the Dr here. He offered me Abraxane, Taxol, or Xeloda. But it seemed he leaned toward Abraxane. I did not get chemo today. Will go back on Thursday fo the Abraxane. I then mentioned the pain. Told him I was taking 2 Tylenol and 2 Ibuprofan, which I read on the computer :-) worked for many. His response was NO NO NO. He suggested the Tramadol 3 times a day. I thought now that I had a CT scan and a Pet scan he could more or less tell me more closely where the pain is coming from but he said he cannot tell. He wants me to get another bone scan and an MRI...so I quess I have to go with his requests. After all , he is the doctor. I really do need a for sure on the pain as it is getting worse. Hard to sleep or even look forward to a good day with no pain and try to get something done. Oh yes and I also asked about the trials being done. He asked me what hospital I would want to go to and then said what do I want to do. Chemo or the trials. He confuses me. It is so hard to get any info from him. I thought the trials were only done at certain hospitals. Can anyone help me on that also.
And then to top it all off, my last chemo was Dec 28 My next will be Jan 21. That is almost a month. It seems long between treatments. How can anything work :-)
Thanks to all you great ladies. The help that we find on these threads helps.
Rosieo
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Homehelp
Can you help me a little more with info on how to get the clincial trial. I also see your wife is on Abraxane. How are her side effects.
Rosieo
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Rosieo,
I'm sorry that the treatment did not work for you. Have you tried reaching out to the triple negative clinical trials matching service for info on clinical trials that you might be eligible for? You can fill out a profile online or call them and they will take your information by phone. They will send you a list of trials for which you are preliminarilyeligible. You (or maybe your MO) would then contact the coordinator for each trial of interest for further details. The website is www.tnbcfoundation.com and phone is (877) 769-4827. I hope this helps.
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purplegirl
Thank you
Rosieo
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Rosieo, I am very sorry to hear this. I do hope the meds for pain help you, and more so, I hope you find the treatment that works so the pain won't be masked but gone. As far as I understand, your situation is pretty much the same as mine...both triple negative and both with having just one line of treatment (gem/carbo) in the advanced disease setting (if you did chemo with your initial diagnosis assuming you weren't stage 4 out of the gate, that treatment doesn't count). My doctor says we definitely do the trial next because having no more than 1 prior treatment is criteria for some trials and the fewer treatments you have before the trial with pd-1 the more likely you are to respond. I hope that the info from purplegirl helps you to find the trial. I am counting on my doctor to find the trials and have no idea how to do this myself. Where do you live? On the off chance it is near Ohio, there is a trial currently open at OSU where I am treated that I believe you would qualify for, since I do. It is for a combination therapy of abraxane and pd-1. Together these are getting great results and my doctor says it will be the combo trial we go for whether it is at OSU or a national trial (if the OSU trial is full when I need it). Maybe if you start Abraxane and it is part of trial it won't count as 2 lines of treatment??? I think you are going to have to start something while you find and apply for a trial either way. I don't know how long this process takes. Hopefully others can offter their expereince.
As for me, I flunked chemotoday b/c of platelets. I'll try again next week and we are reducing the gemzar dose to give me a break. My doctor has a current patient who is on cycle 40 of gem/carbo after similar reductions so I hold hope that even in its less potent dose it will continue to work for me as with her. I feel very relaxed about the whole thing and I know it is b/c of this forum and becoming comfortable with the ins and outs of this disease that I am able to see this as not a setback but an normal part of the journey.
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Rose
I am a medical dioctor and a surgeon and it sounds to me that your MO may not be the best fit for you
i have done a lot of research and have spoken to many oncologists all over including leaders at NYU , Memorial etc and that is why we chose the trial
At this point, after 15 treatments the tolerability of abraxane was much better than the 6 taxol treatments that she got after the initial surgery when she was thought to be stage 1
I really think there is something to these anti PDL1 and of course everybody's tumor and disease and immune system is different but it is worth a try
Also , if you get on the trial and respond the goal is to get off the chemo and stay on the immunotherapy
In addition , you might qualify for compassionate care and get the drug sooner than others if you were getting the placebo
I don't know where you are , but a MO should know where the trials are and whether you might qualify
Also , he or she should direct you and not give you a menu to choose from ... Just my professional opinion
Feel free to message me and we can speak on the phone
If my wife is on the trial drug , which we think she is , there has been dramatic response ...-and my hope is others are getting great responses they should fast track this to patients with TN and get it approved
Hope this helps
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I'm trying to get into a clinical trial with durvamalab and itribulib. (Hope Ive got the names right, what an alphabet soup there is.) Some kind of immunotherapy that my MO thinks is worth trying given that I'm generally healthy except for the cancer. Might work. Might not. I'm willing to be a Guinea pig. If not there's always plan C -- gems are and carboplatin.
Getting ready for a new adventure.
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Homehelp....I am currently on my second line chemo (CMF). I should have a scan in the next 3 weeks. If it looks like this is not working I plan on asking to go onto the PDL1 trial. How is your wife's SE's with this trial?? What is the routine? They offer that trial about 4 hours from here and it looks like you go in every two weeks. Other than my cancer I am very healthy. I work full time (4/10's) and stay active. I have been very lucky with my chemo's so far and not experiencing any SE's other than hair loss.
Rossileo18 good luck with your new adventure. Keep us all posted as to how you do on it.
Prayers for everyone!!
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Hello I was just introduced to a new trial and my drug will be Eribulin mesylate and pembrolizumab. Has anyone out there tried or started these chemos. They say that I am in good shape and all my bloodwork is good. So Im hoping things workout. Let me no if anyone has heard of these.
Sandy
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Keytruda is the trade name for pembrolizumab. It's not a chemo but an immunotherapy drug. I started it about 9 months ago. My onc s v keen on it. Easy to take (1/2 hr IV). No obvious side effects
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I seem to be on the wrong location. I looked on the Antipd1 Clinical trials website that home help listed, but my location isn't doing breastcancer, only lung cancer. Rather frustrating. But as mentioned, I am trying to get into another trail for immunotherapy. Well, it may all be a crapshoot anyway, just trying to live my life as purposefully as I can for however long it may last.0
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Roses
Ask ask and be an advocate for yourself
Lots of new trials
As for the anti pdl1 , the way the trial goes , week 1 and 3 you get abraxane and the trial drug
Week 2 you get only abraxane
Week 4 is an off week
We started our 'vacation week ' yesterday
So far the side affects , including neuropathy were easier than taxol
Scans are after 2 cycles
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Home
I just got my first treatment yesterday of abraxane. My MO said the gemzar and carbo were not working.
I would be interested in this new drug. I see you are in Georgia. Where do you go for treatment?
Thanks
Rosieo
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