Triple Negative Stage IV
Comments
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Tomorrow is my meeting with the onc who is heading the trial for NAF1. I'm paying $500 for a private appointment with her (that's the trick to pushing your way in in a country that has socialized medicine - We may have socialized medicine but we're not socialists at all - Money still talks here
). I'm going to her for a second opinion since she is the head of the breast oncology department in a top hospital (not the one I'm being treated in). By now she's met with Rachel Nechushtai (the researcher from the Dallas clip who offered me the diabetes drug too fast) and I'm praying that she will have answers about the trial and that she will let me start with the drug soon and not drag on till she has all the official stuff going. I don't have "time" for them to properly run a trial. I'm really counting on this being my miracle.0 -
On Monday I'm beginning Eribulin (now that CMF, Adriamycine and Gemzar/Cistplatine all haven't worked at all for me), I'm really praying that this chemo will have some positive affect on me. (If anyone has gotten Eribulin I would love to hear about side affects). I know my cancer metastacized to my lungs cause that's what my PET and biopsy showed but I wasn't sure what's going on in there (the tumor on my breast is getting so big and ugly that we assume that the lungs are getting worse too (I have some feelings that they are). But lately, I feel that the pain in my chest isn't actually from my lungs but are pain in the bones - maybe my sternum and some of the ribs. I was supposed to go for a PET/CT before starting the Eribulin (you need 2 weeks break from chemo before a PET) but I couldn't get an appointment and I told the onc that it's up to her to push me in for a PET if she wants one but I'm not pushing off starting Eribulin treatment. (the PET wouldn't affect my treatment. She just wants a new baseline). The Eribulin may have a very bad affect on my MS (that's why I've never had Taxol either - it seems they're similar) so I'm hoping that they've just been avoiding the "popular" TN drugs and finally one will work on my cancer.
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Donna, wishing you the best with your appt. today. Let us know!
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Thanks Kaay - I'm going soon and I'm pretty worried. I've been told that she's really the "top" doctor but has her moods. I hope she has good NAF1 news for us all (not like my onc who was so negative about the whole idea of taking this diabetes drug). This disease is too fast for us to play around with trial protocol.
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I met with the $500 doctor. She was actually very nice and took her time answering questions. I didn't bring up the NAF1 trial cause I was really looking for a second opinion and other ideas of treatments. Overall, she agreed with my treatment till now with just a few small suggestions.Then she brought up the NAF1 trial. I told her what Rachel Nechustai (the researcher) had told me and what my onc had said. She said her trial won't start for another 4 months but she will request permission from her hospital to start giving me the drug now. I think she'll be more successful than my onc will be since she's actually going to be giving that drug to patients in that trial in her hospital. She's head of the department and she's interested in giving it. She said it won't have a bad affect on someone who doesn't have diabetes. But they have no way of being sure that it won't actually make the cancer cells grow in humans. Also, it shouldn't work against the chemo drugs but often there are unexpected drug clashing problems when you take 2 drugs together.
Overall, I think I spent my $500 well.
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Hey ladies...haven't been on the boards much lately. I have been living life. My husband and I have been traveling. We rewarded ourselves for a retirement gift and went on an 8 day Viking river cruise down the Danube river! It was amazing! We loved it so much that we have now booked a Viking ocean cruise from Athens Greece to Venice Italy next March. And yes I plan on making that one too. I have been stable now for 8 months, my next scan will be first week in November. Praying for another stable report. Right now I am sitting on our back patio with a nice breeze watching our Texas Rangers in the playoffs. I have been blessed with only day two and three with slight fatigue. I know someday I won't be as blessed so I am doing as much as I can while I can. We fly to Ashville NC next week...going up in a hot air balloon to view the magnificent colors of fall. Living life!!
Prayers for all of you lovely ladies!
Juli
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Donna, I am so glad it was worthwhile. And so good to know you have someone able to pull strings for you and potentially get the drug earlier for you if needed. Hoping your new chemo does the trick for now.
Texas, so great to hear from you. I figured you were out there living it up in your retirement. Best wishes on wonderful scans in November.
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Hey KAY, thank you! Looks like you are still doing well on Carbo! How long have you been on that chemo? Seems like quite a while.
Julie
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Some type of glich I don't understand omits the date when I began gem/carbo. It was Aug 2015, so over a year now with carbo. Yay!
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Oh, and last scan showed tumors still shrinking, which was a surprise since I'd held at stable so long.
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Amazing Kaay - You're really beating the TN odds.
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kaayborg I am so happy for you! Way you go, you tell those counts to stay up! You are doing it...I think you can I think you can!!!
Texas- I am so glad you had a great time and really happy to hear that you booked the next one!
Donna- so glad thE money was worth it let us know how it goes.
This week has been rough I have my next scan end of oct. And all I can think is that my lump feels fuller my breast feels like someone hit me and I feel like my nipple looks swollen...I hope this is my mind playing tricks on me....fingers crossed !!
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Yay Kay! Way to go!!!! I will be one year on CMF on November 20....hoping for another stable scan!
Steph...hang in there. Our minds to have a tendency to play tricks on us!
Donna...definately keep us posted!
Julie
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Thank you today was rough...ultra sound and mammo tomorrow 7:30 am. Fingers crossed!!
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Best wishes to you tomorrow, Steph. My platelets were 72, which is okay for treatment but we have to recheck them tomorrow just to be sure they haven't dropped into the 60s. (FYI, I'm doing labs the day before so I don't have to take a day off work unnecessarily.) I can't imagine there'd be so much change in less than 24 hours but you know this disease is always full of surprises. Here's to only happy ones for all!
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whew...radiologist says all is well! She says she doesn't know why breast is swelling or sore because everything looks good...I will feel so much better after PET in two weeks! Thank you for the well wishes!
Kaay- so smart to have labs the day before!
Has anyone eelse gone off steroids and benodryl?
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Great news, Steph! My platelets did drop to 67 today but they let me squeak by. Not sure what next week will hold but at least we got this treatment in. I get every pre-med possible b/c of my allergic reaction to carbo so I can't help with your steroid benadryl question. I really wish I could skip the benadryl but oh, well. Instead I must sing its praises as it allows me to keep on this treatment.
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New problem (what does it mean?) I have this big ugly tumor on my breast. Nothing's been working so it's been growing. I just switched to Erubilin (praying it will work). But now the tumor is oozing. Then it hardens and leaves a scab (I think drying up is a good sign - anyone have any idea?). Now my problem is that it smells. How often can you change your bra and shirt? I'm going to the onc on Wednesday but this smell has me worried (and really uncomfortable). Any advice?
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I really wish I had something to tell you but I don't . I am so sorry. Please let us know what the onc. says we are here for you!!!
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Hey Steph, I had issues with water retention and swelling from the steroids....do I asked my Onc to cut them in half. They are to help with nausea which I don't experience so she agreed. I still have some swelling for a few days after chemo but not as bad as I use to.
Julie
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Hi all: I have been hanging out in the background (trying to keep my negative fears to myself!) and reading your posts. It is so helpful to read about people's scan fears, about their minds tricking them, about scary swelling, and about trying to figure out what our bodies might be trying to tell us - I always appreciate hearing about longer times on certain recipes..
Donna - that oozing and drying up cycle sounds so frightening. Is the area around the growth infected/stressed? will antibiotics or disinfectant (hydrogen peroxide??) be helpful. I sure would expect your onc. to give you management strategies as I'm thinking our teams' role is to help us live with this condition and its side effects.
Steph, I have never had a PET scan. They are not done in Canada regularly. I am waiting anxiously for CT scans the last week in Oct. When I was on a trial treatment I was CT scanned with contrast after 1 month and my liver had one met in particular that went from approx 3 cm to 8 cm in that time. Because I was so sick at the time I couldn't feel any symptoms that could signal changes. My new recipe, CMF (Juli I am so glad to see your great history with this!) - started the day after the scan results - have had me feeling stronger and stronger each week. The scans will be after treatment #4 with cmf next week.
Kay, I can't believe you have shrinkage. I will love it if I have some stability.. Here's hoping.
And BarbDenise, you and your children are on my mind. I hope you have more news and may be able to keep us posted.
all the best wishes for everyone - J.
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Donna, thinking of you here too. That doesn't sound right. Getting solutions from your onc sounds like the right plan. I am wondering if it might be better to call before Wed. given it sounds like there could be an infection and infections are not to be taken lightly when on chemo.
Josie, it is good to hear from you. I think you have every reason to feel optimistic about your scans next week. Feeling better and better was exactly what cued me into what turned out to be really great scans after I first started treatment. I wish you the very best. Let us know!
Keep posting everyone. I'm not sure exactly why but this thread is the one I am always most excited to read. I must identify most as TNBC, over mets location or treatment or age. We're in this boat together.
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hi all
I think I am going to join this group soon waiting a confirmation about met to my liver. Next week they will give me more details. Today 3 nodes found in my liver and I have an MRI and scan next week to confirm and properly dx.
Let's hope I can push the years as far as I can so that my daughters at least remember me.
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hello all you brave and courageous women
I have not posted for a long time as I am the husband and I am reluctant to weigh in.
This disease, as many progressive diseases is a battle that affects the physical body and the mental spirit
The days my wife feels well and the scans are good we try to enjoy , but as we all learn unfortunately there are ups and downs , and having support for both these times is so important
I write this post to share our experience and to give hope to all you brave fighters
As I mentioned previously , I am a urologist and I have had the privilege of taking care of thousands of patients with various different cancers
Now it has hit home and personal
But I want to share what we went through and continued to go through
You see my wife was stage 1 , 1.8 centimeter triple negative and she decided to do bilateral latissimus grafts and did very well
I asked about scans and was told 4 cycles of TC is all that is needed
"Insurance doesn't cove scans for stage 1"
A year later severe fatigue ,and then a CT showed 2 liver lesions
The journey resumed and we chose to enroll on the abraxane //pdl1 trial
To this day we don't know if she received the pdl1 but the the tumors responded for 9 months and then came back in the same place
We changed to doxil for 4 months and had no significant response but the markers went up a bit so we started Eribulin
When we stated Eribulin the liver enzymes for the first time were elevated likely from the doxil ,and likely that the Eribulin really kicked the hell out of the liver and she became jaundiced
During this time amazingly , the week when the liver was just starting to fail our last child ( we have 4) was married and we had our first grandson born to our daughter
The timing was crazy , but we loved every minute of the wedding and 2 days later she was sick and hospitalized for 5 days
We were very scared this was an obstruction and thankfully it was not
She had all kinds of scans and an ERCP which shwed no blockage
The liver is recovering slowly and we made an appointment at memorial and met with dr norton and others ,and they are working on new drugs for triple negative
They also took blood for DNA testing and really gave us hope
Likely she will start xeloda and their protocol is a little different than most to minimize toxicity
I write theirs to give hope , always seek more than one opinion, and when the good times come embrace them as much as you can
We can only hope and pray that all the money and effort going in to finding a cure really does find one
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Please read the thread I started. I really could use your advice TIA. I'm a lurker. I know I don't post enough. But I'm so grateful for you guys
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A questions to aller girls hère .. are you aware or any succesful trial for us TNs
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4ever, ugh! I am so sorry. Please do let us know what you find out. I am 39 with liver mets dx last year just after my 38th birthday. I read a lot into your comment about pushing ahead the years as far as we can. Of course, it is what we are all hoping and it sucks to have to hope such things.
My onc is very enthusiastic about immunotherapy trials particularly the one in combo with Abraxane which Homehelp mentioned above. It is what I plan to try for next when carboplatin fails me. I've heard results for TNs described as game changing, which isn't to say they offer a cure but that we may at last have something more than chemo to add years to our lives.
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Homehelp, good to hear from you about your wife. I did not realize how similar her situation was to mine. I was stage 1a with a 1.4 cm tumor and recurred within a year's time. Stupid crazy TNBC! I am very sorry that the trial did not yield the results we were all hoping for. Would love to know if she was in the test group or not. Hopefully not, leaving the option of getting the immunotherapy when it comes to market AND it being effective for her. I look forward to hearing what comes out of this December's symposium in San Antonio. More good news and fast progress toward FDA approval sure would be nice. Thanks for taking time to share the journey. I'm holding onto it as I'm sure it was quite frightening to lose control of the disease for a while there. The lesson I take from it, is that there is hope for a way back up on the roller coaster ride we know and do not love so much. Keep recovering!
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Regarding the pdl1 / abraxane trial
We are trying our best to find out if my wife was on the pdl1
Up until now .. they won't tell us
Only if there is a serious side affect will they unblind the study .. so we hope she was not on it but will continue to try to find out
Evan though I am the husband , if felt an obligation to write because I was gaining some information and hope from all of you so I felt that although everybody's journey is different , we can gain insight from each others experiences . So I felt obligated to share which I think is a good thing and enough everybody to do the same
The liver enzymes and bilirubin are improving slowly but the fatigue and weight loss is a significant side affect of drug induced hepatotoxicity
To address some of the issues above
An infected wound I would think might be treated by a surgeon to at least debrideit and clean it and wash it out and remove tumor ot infected tissue
In terms of trials there are many depending upon BRACA and the extent of the disease
The NCI Has a list with various centers , but qualifications in each study depends on the individual and also what previous chemo was given
Each study has strict requirements and a good breast oncologist should be able to direct you to a study
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Count me in, Im Tracey, was diagnosed in Sept 2012 with TNBC, Stage 1 not in Lymph Nodes. Had a Lumpectomy and Radiation, no Chemo. Feb 2016 have Mets to Lung and Brain, been on Abraxzane and Opdivo. On Aug 11, I began have difficulty thinking and walking, feeding myself, bathroom. Found out Chemo didn't break Blood Brain Barrier, so Cancer was able to spread throughout the Brain. Had Whole Brain Radiation with Physical Therapy and was released from hospital Sept 8th, good as New.
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