Triple Negative Stage IV
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Hi slowloris,
I'm curious about your clinical trials! Especially the first one. What qualified you to be in it, and why did you decide to participate? I see you were already on carbo/gem and Halaven. I'm on Halaven now for liver and bone mets. How long did Halaven work for you? I am hoping to eventually get on an ABT-888 trial. I got kicked out of one before I even started because of my liver enzymes.
Also, I have TP53 gene as well, and I think my oncologist is sending for more of some kind of testing - something that he learned about at ASCO this past conference.
Anyway, hope you are doing well. I am feeling a lot better than I had been... had a blood transfusion a week ago and it's finally "taking effect" and I'm not debilitatingly tired, so that's good.
-Lindsay (I posted right above you as well)
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Hi Ladies,
I think a few of you were interested in my liquid biopsy result. Here are the highlights:
I was shown a graph that illustrated the number of tumor cells in every milliliter of blood that was collected from me.
I am copying, word for word what I read under "result" on page 1 and page 2.
Page 1:
"Result Interpretation: Result numbers below the reference line indicate that sample tested revealed the quantity of nucleated cytokeratin positive and CD45 negative cells is within the range found in general population. Purity numbers above 10% represent good candidate samples for further analysis, if such analysis is selected. 1.9 target cells per ml were identified in the analysis. Results below 9 cells/ml show greater variation upon repeat analysis and hence are reported as <9 cells/ml."
Page 2:
"Results: No Mutation(s) detected."
So I am being told once again that I have no disease or not enough disease to evaluate so I can use more targeted treatment approaches.
This happened to me before. I was 4 weeks into treatment when I went to the imaging place to get a ct-guided needle biopsy of the numerous tumors in the lining of my left lung. Alas, the tumors were all gone and there was nothing to biopsy.
I know I should be glad that the blood biopsy did not say I had 200 mutations and no known available treatment. But when will I get to know this beast better?
My MO said if (God forbid) I progress again, we shall do another liquid biopsy even before treatment starts.
Thank you for your interest.
Hugs,Brenda
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Lindsay, This is a new trial, phase I, so I am one of the first people to get this drug. Its only been tested in the lab with mice. I think I had to have a solid, measurable tumor. TNbc was one of the parameters they were accepting.. Other than having numerous tumors and nodules in my skin and lymph nodes, I am very healthy. You would never know I had cancer from looking at me. Because no standard treatment has stopped progression, (although it has slowed it), I have been diligent in researching clinical trials. I constantly bring it to my MOs attention, and she agrees that I shouldn't wait until I have organ involvement. I should do it now while I'm relatively healthy.
I am being treated at University of Pennsylvania's Abramson Cancer Center, where much research is being done. I forget where my trial initially began, but Penn is one of the sites that is collecting data. If you go on clinicaltrials.gov and type in CB 839 in the search box, it will tell you more. If you want to see if there are any trials you may want, search for specific criteria that pertains to you, and any trials you may be able to get into will come up. There, they give you all the parameters that must be met and what places are doing that trial.
Brenda, I have never heard of a liquid biopsy for bc before. Is it new? What info would it give that a regular biopsy wouldn't? Is it just indicative of quantity of disease as opposed to quality of disease? I know they do it for blood cancers, but had not heard of it for solid tumors. I'm glad that the amount of disease has shrunk in your case. Keep up the good work, and always be positive. Everyday, new therapies are being developed, and sooner or later, one that works for each of us will be found.
Take care, and have a good weekend.
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Why use a vial of blood instead of tissue biopsies? If you have ever had a
needle-guided tissue biopsy of the lung (like I did) you would know how
invasive it is! Mine did not even yield any results other than it was
lung mets. No ER, PR, Her2 information! Sample was too small.The company that did my test is Cynvenio Biosystems. The breast cancer liquid biopsy test is called the ClearID Test.
They found less than 2 target cells per 1 milliliter of my blood. If the liquid biopsy test found more than 9 target cells the company would do more tests to see what targeted treatments are available. My MO says although this is really good news for him (chemo is working) he knew that I had wanted to attack the little beasts using the best possible approaches (not cookie cutter, but individualized) to eradicate them.
No mutations technically means no cancer. However, LiquidBiopsies are not the standard protocol even if world-renowned bc oncologists use them to monitor their bc patients! One such doctor is Dr. Massimo Cristofanilli of Jefferson Hospital in PA.
Anyway, since LiquidBiopsy is "out of network" I may still have to have a ct-scan in July to prove that there is no cancer.
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Hi all, just had my 6th cycle of carbo/taxol on Wednesday. I am really tired, platelets were at 87 before this treament and my blood pressure, although normally low is quite low now 95/68. So I am trying to take it easy. Have my next CT scan on July 4 and meet with my onc on the 8th. I am in Canada and my onc has agreed to send my pretreatment tumour sample to Foundation One for profiling. He is interested to see the results be because mets to the thyriod are so uncommon. I don't have insurance coverage for it but my husband is insistent that we do it. I am not sure when I will have those results, maybe a month. I am also on a Canadian waitlist for BRCA testing but am told it could take up to a year to get an appointment. Certain aspects of our healthcare are very good but some waitimes seem ridiculous. Anyway my onc thinks I am responding well so I hope the scan agrees!
Slowloris, thank you for sharing the information on your trials. I will check out that site.
Brenda, well the good news is your are not some mutation that affects 0.01% of the population and it does likely mean your treatment is working. I am sending you positive thoughts that your scan confirms that!
Kelly
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Kelly - I was just diagnosed this week with mets to thyroid. I haven't started new treatment yet but Tuesday is my next MO appointment and he mentioned probably doing Carbo and Taxotere again which is of course what I did when first diagnosed in 2009. I am kind of bummed because my hair just started to grow back from coming off AC and I had been doing just Gemzar which clearly isn't working.
When I did my PET scan Monday my entire thyroid was glowing! Not just a spot the entire thing. So had the needle aspiration biopsy and core punch biopsy on Thursday and the prelim report was confirmed breast cancer spread. They think the node in my neck which has been active for a year infiltrated the thyroid. I just don't get why we cant get this under control.
So all the talk about the different testing, I did do one with Caris back in January. The results for me were not good. It came back with only one drug that would work on my cancer and it is only approved for colon/rectal cancer. My insurance of course denied that. I did do 4 treatments of AC and that shrunk everything and all the SUV values were under 4. Then we started Gemzar April 15th and in 8 weeks everything has grown, have this new thyroid issue and SUV values all increased to over 10. So even thou the Caris test only showed this one drug, AC did help so like my doctor said it is just a guide and that doesn't mean that nothing will work...sigh
We are going to try and get this colon/rectal drug approved again.
What symptoms did you have with this thyroid stuff. I have debilitating headaches, weight loss, racing heart bad neck pain almost like whiplash..
I hate cancer!
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Hi Allison, I already had hypothyroidism and take synthroid to manage it for about 7 years now. My main symptom was lack of energy. My family doctor and surgeon (who saw me every 3 months after I finished my first treatments in 2012) kept saying that fatigue was normal, it takes time. I said its been over a year and I am only 44 and otherwise very healthy. In September 2013 a blood test confirmed that I needed to increase my synthroid dose and that seemed to help with the energy level. Then one day I choked on a multivitamin and noticed a swollen lymph node on my neck. I went to my surgeon (she is closer than my MO) and she noticed the thyroid nodule. A needle biopsy confirmed it as grade 3 cancer but they were thinking it was primary thyroid cancer. Another surgeon removed the now 1 inch lymph node from my neck and that biopsy confirmed that it was breast cancer that had spread. PET scan showed many lymph nodes in my neck and collarbone plus a couple of small lesions on one lung in addition to the thyroid.
Sounds like you might have hyperthyroidism? Has anyone checked that? There might be something that can help.
It will be interesting to see how our Canadian healthcare works when I get the results back from Foundation One. Will I be able to have a drug thats not the standard protocol? Will I have to travel to the US for treament? My MO thinks we've got this "flare up" under control but I am already planning for the next one.
I hate cancer too.
Kelly
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Hi everyone -
I was reading back a little bit and there was some discussion about receiving Herceptin for her2-low. I am one of those people... I am receiving Halaven and Herceptin because my oncologist is one of those docs that are convinced it will help certain patients. He thinks my cancer "acted" like a her2 cancer. I wish I could reiterate what he told me to articulate this better. Either way, my her2 score was 1+ and my ratio is 1.48.
My liver enzymes were through the roof prior to starting treatment (we thought there was a blockage but they couldn't seem to find one with the ultrasound). After just one infusion of the Halaven and Herceptin, my enzymes came way down. AST went from 538 to 153, ALT went from 248 to 110, and Alk Phos went from 319 to 204. Most importantly I think, however, is that my Bilirubin went from 6.7 to 2.0!! That was scary... my eyes were yellow and everything. My liver actually hurt. I just had my second infusion last week, and had labs today. I am pretty anxious about hearing the results of these labs. I really hope that those numbers continue to go down.
So, I have no idea if the Herceptin has anything to do with it - but for all intents and purposes I am still considered triple negative.
The reason I'm writing all of this is because I'm curious if anyone else has any similar experiences?? Whether you were on a trial for her2 low or anything having to do with triple negative and herceptin.
Thanks!
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Hi Kelly and everyone else
they did a bunch of blood work on me last week for the thyroid issues. The originally thought it was a thyroid infection which is even more uncommon that mets to the thyroid. Some of the blood work came back high and some are normal. I am just super nervous that I am at the end, I know there are a lot more chemo's but my doctor even said he is worried with how aggressive this cancer is acting. I just have one small spot on my lung and then all the mediastinal nodes and the nodes in my neck.
I am only 42 years old. Was 37 when diagnosed. I really want to live a long time but heck I would take 10 years right now but I don't feel like that is possible. I hate these feelings of despair.
these headaches are so bad, just makes me wonder if thyroid is really causing the headaches or something else is.
Hope everyone is having a great day
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Hi Allison, those headaches could be caused by stress, you should ask your doctor what he thinks. I take Ativan when I feel overwhelmed and find it helps alot.
I wish you good luck with your next appointment on Tuesday.
Hugs,
Kelly
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Allison,
You ARE pretty young, and it really isn't fair. I thought I was young when I was first diagnosed, and I was already 50. I wish you the best, hoping that your thyroid issues are manageable, and that your stress level goes down so you can relax a little. BTW Carboplatin and Gemzar seem to work very well on my lung tumors.
Take care.
Brenda
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Flimsical - I have been trying to get into a trial where I could get Herceptin but I didn't qualify. I really believe that Herceptin is a drug that should be given to TNBC as it has been proven in research to help. I HATE that insurance companies can deny drugs that could help us just because it is only approved for certain other cancer types! SUCKS! I also have some drugs that could help me but they aren't approved for BC, so insurance would deny.
Brenda - hope a CT scan confirms all is good!
I am going to go get a second opinion somewhere - just started looking into the details and where to go. I think I will be going to Lineberger Comprehensive Cancer Center as Dr. Carey is a big researcher in TNBC!
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All good thoughts and prayers would be appreciated! Thanks...
wwww.katebeatingcancer.blogspot.com
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Cat--
I think the approval of Herceptin for me had to do with some genomic testing that showed I had SOME HER2 in my cancer. I forget the word he used, I want to say homogenous but that doesn't sound right. I should have taken a recorder in my appointments so I could understand why I was able to get this drug despite still being considered TN!! Either way genomic testing is important and everyone should be able to get it. Eventually it'll be standard of care and everything will be personalized. It needs to happen faster. I think my onc is trying to get me the FoundationOne testing that shows what drugs will and will not work. That's what needs to be standard.
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Flimsical - I did have the Foundation One testing so do have some things I can try based on the results. Yes, I think it will become standard, sooner the better!
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I thought some of you might be interested in this press release from Cancer Research UK which came out today.
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Hello everyone. Glad I found this thread. I'm 39, and was originally diagnosed in July of 2013 with IDC stage 2 grade 3 triple neg. Completed 5 months of fec100 chemo, had bilateral MX in January 2014, and thought I was in the clear. Recurrence in April 2014 stage IV, mets in chest wall and skin. I've just completed 35 rounds of rads, and now I have no idea what they have planned for me. I was told that I will heal for 6 weeks, then follow up. I'm happy to be done with radiation, but at the same time didn't want it to end because no one will tell me the next steps. I was told that they were treating me as palliative, and the rads would ease pain. They hoped to contain the cancer. Any input, or experiences you may have in this position would be very helpful.
Kelly
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Hi Wildflowers - sorry you are here too. Most TNBC is treated with chemo so I wouldn't wait around for 6 weeks to ask. My mets was found in March and I've been on Taxol ever since but have several other chemo regimens that have been discussed when taxol isn't working anymore or the side effects become too much. I would get a second opinion if your doctors aren't giving any answers. Good luck and keep us posted.
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Hi All,
My latest CT scan shows continued tumour shrinkage of 50%++. Some are gone completely. Some are so small they wouldn't even worry about them. My onc is recommending that I stop chemo and have another scan the first week of September. He seems very pleased with my response to chemo. He wants to hold off on radiation as he feels neck radiation is risky. He told me to go enjoy my summer and not worry. I am so happy today.
Kelly
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Hi All,
I haven't posted here in awhile.
Keldel - That's great news! Enjoy the rest of your summer.
Allisontom911- I wanted to respond to you. Was the colon/rectal chemo Irrenotecan? I did a round of Irrenotecan with a low dose of Cisplatin and had a good response. My MO was able to show the insurance company that there was evidence of success in treatment and they approved it for me even those its not a breast cancer drug. I don't know if it will help you with your thyroid. I wish you success.
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ok... I am new to this site...
I was diagnosed at stage IV May 2013. Started with taxol with progression. Then tried doxil with more progression, now to the chest wall, hips, abdomen and spine. I just had my double mastectomy because my tumor was getting too big too painful. Well I was told it was 13 cm when it was removed. So now no chemo for awhile while I recover. Now you know I am thinking going the natural route.....thoughts??? I have met people that have "cured" themselves of cancer. When I talk to other people about this...in reality they may be in remission(NED)....right? But if I can stop this disease from spreading I would be happy! I have two young kids 8 and 10 and my goal is to see them grow up. So is anybody else out there going the natural route? Btw.... When I had my surgery, I sent part of my tumor to Rational Therapeutics in California. They do chemo testing on your tumor and recommend a chemo cocktail that reacted to my tumor. So another question.... Has any other desperate crazy person like me tried this? I have changed my diet, all green, keeping my body alkaline, taking vitamin D....
What are other people doing?? Any trials?? I am willing to listen....not sure what direction I should go....
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Hopeful65: Has your oncologist suggested Carboplatin/Gemzar? A LOT of triple negative women have had great success with that drug combination. Please ask your oncologist about it. It is rough on your counts so you would probably have to get Neulasta/Neupogen but I actually don't think you would lose your hair. The next route after that could possibly be Eribulin (Halaven) which is what I'm currently on. We think it's working but I don't have scans for another few weeks so I won't really know until then.
Do you have the BRCA mutation? You should absolutely get the FoundationOne testing if you have the means. Did you get results yet?? If you are BRCA positive, you should ask about PARP inhibitor trials. PARP is showing great promise with TN and BRCA patients. I have a friend on a PARP trial who has had 72% regression in like only 4 cycles of the treatment on liver and bone mets. It's a combination of Carboplatin, Taxol and the PARP inhibitor. There are other trials that have different drugs, some that have the PARP only... but you have options!!! Please don't think you are out of options!!!!
Where has your cancer spread?? Please don't lose hope! Stay positive!!
-Lindsay
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LovieLovie - yes that is the exact drug that came back on my Caris testing (like Foundation one). I may ask about that and Cisplatin.
Kelly that is awesome news!!! Chemo break too!!!! Cant get much better than that. I hope I can get there sometime. Edited to add...what kind of radiation where they talking about? I may do that as well. I had a consult with the rad onc back in December about my neck node and we decided just to remove the node but then it just came back again in a different node in my neck and now onto my thyroid.
My neuropathy is so bad in my right foot/ankle that I walk like I had a stroke. I was walking into Kohls the other day and fell scrapped up both knees and the tops of each foot pretty bad. God how embarrassing! My lymph node in my neck is getting bigger and now the front of my neck in the thyroid area is super painful. I live on Norco 5's during the day so I can still function and work. I take Norco 10's, flexiril and Xanax to sleep at night. I called the doctor's nurse again yesterday and filled her in on what is going on. She talked with the doc and he probably wont switch me off Taxotere/Carbo yet since I have only had one treatment but I think with this neuropathy getting worse he may do it sooner than later. I take the max dose of Neurontin everyday too. He had suggested Lyrica but I don't have pain it is just total numbness. I cant even wiggle my toes...ugh.
I also have gained 6lbs back of the 12lbs I had lost from the cancer going in my thyroid. I am sure that has to do with the prednisone they have me on plus the synthyroid meds.
I am just getting worried that this is being so aggressive we cant stop it. I haven't had NED in over a year. I just see myself getting worse and worse and my 4 year old needs me.
Thanks again for listening girls!
Hugs
Allison
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Sorry I've been absent. I have been working hard on our blog and processing 6 years worth of photos. LOL
Kelly that is great news!
Hopeful I to had progression with the Taxol. Have you done the Adramyacin (sp?) most just call it A/C? That shrunk my original tumor by half it is a relative to the doxil but stronger. The carboplatin is also one I was just taking that shrunk my liver mets. Sadly I had to go off it for now due to low platelet counts.
Allison have you tried glutamine powder for the neuropathy? My MO's NP gave me a sample the last time I was in and said that studies show that it helps but you have to do a higher dose of 30 g a day.
Wildflower, I won't say welcome cause I hate that any of us are here. Instead I will say Hello, I hope we can get to know each other better.
Hugs to everyone else..back to work for me.
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Hi All,
I just came back from my Alaskan cruise. I had a really GREAT time! I highly recommend it. For seven days I did not once experience stomach issues, which I had before embarking!
Now back to reality. Brain MRI on Saturday and Whole body scan on Monday! It doesn't help that I feel (all of a sudden) pain every time I cough, sneeze, laugh or yawn!
Well, I guess I'm back to battle the little beasts.
Kelly, what wonderful news!!! You get a chemo break - yeah!
Hopeful: Nutribullet and walking are the only 2 "natural" things I am doing. You can do both: natural and systemic at the same time. The more arsenal the better.
Hugs,
Brenda
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Hi All
I met with a genetic counselor today about my family's cancer history. This is so that I can have a test for BRCA 1/2. I was told it will take about 4 months to get the results after I have my blood taken (which will be in another 2 weeks). Seems like along time to wait. I was also told that there is a link between these genes and pancreatic, ovarian and skin cancer - as well as breast cancer ofcourse. Oh well. Just need to wait and see. My MO is working on having my tumour sent to Foundation One for profiling also. I expect I will see those results when I met with him again in early September.
Allison - The radiation was for lymph nodes in my neck. My MO is worried about possible side effects - such as damage to vocal cords and salivary glands. He really thinks its not worth the risk given how much they have shrunk on the chemo.
Brenda - Glad you had such a great time! Wishing you good luck with your scans!
Hugs to all!
Kelly
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I cheated and copied this from my personal family group but wanted to share with all of you also and just too lazy to re-write.
Home from Tucson. Let's see if I can remember everything.
The bad news of the day was that my hemoglobin is very low and if it gets lower they would have to give me a transfusion. So instead I am getting another 3 weeks off the platin drugs (IV chemo) and just taking the xeloda.
The radiologist did see a suspicious spot on my back, but when the Dr examined me and we talked about the pain I have in my back he thinks it sounds more like degenerative disc than cancer. He is however putting me on XGEVA, Vickie tells me this is a bone strengthening drug.
And now for the rest of the story.........PRAISE REPORT COMING!!!!!
Preliminary ct scan show significant regression in the lungs and liver. Liver shows only a few tiny spots where it was full of cancer on the last ct I had in March. Lungs sound clear upon exam. We went over the plan of action with the waiting and the adding of the Xgeva and he said, "since we have you in REMISSION, I think this is the best course of action.".
Remission is not as good as NED but I will take it!! Believing that I will hear it soon though. Thank you Lord!0 -
Lostinmo - that is great news on your scan! I am so happy for you.
Kelly
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Lostinmo: Congratulations! That is very, very good news!!!
I am not so lucky. My scan yesterday showed that the carboplatin/gemzar has stopped working. I am getting abraxane next.
Hugs,
Brenda
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Brenda I am sorry to hear this news. Sending you a big hug and wishing you better luck with your new treatment.
Kelly
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