Triple Negative Stage IV
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Thanks very much for your prayers Julie! I have lost almost 35 lbs since May and didn't really have it to lose - so I have been so scared about what's going on with me.. 2nd CMF session seems OK as its now 7 days since and I was able to do my dogwalk these past 3 days. I think I'm still (hopefully) bouncing back from the side effects from the clinical trial. Its ice cream and custards and eggs to try and regain some weight. I'm looking rather frighteningly like someone in a movie with a cancer diagnosis. Kaayborg, I can relate about how its easy to hide this cancer thing - as I can't quite pull it off lately - I've put off seeing friends from work to avoid shocking them and I'm not quite ready for all the discussions..
Sherriw hope your ct results are encouraging!
Donna hope you have some peace about talking about your cancer..
good wishes to all
Josie
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So this is what I'm up to. I've had Cisplane-Gemzar 4 times (2 cycles of 2 weeks chemo and one week off). Just like the CMF and adriamycine I don't think it's doing any good. I'm on anti-biotics and my terrible cough mostly went away but I feel pain in my chest and back and side (the other side too now) - I think there's more growing in my lungs. My tumor on my breast definitely isn't smaller, possibly bigger. It hurts. The strong pain killers don't work as well as they did before - The next step is medical cannabis but I'm pushing off applying for it.
Just a reminder of my story - Six months after I finished treatment for my first time cancer I went to the breast surgeon (not the one who had done my lumpectomy) just for a routine breast check up. My scar from the lumpectomy was big and red and and hurt. This surgeon told me it was just a seroma (the pocket left from the lumpectomy was filling with fluid) and to drain it if it hurts.and to see him again in half a year.. This surgeon really screwed up. I'm triple negative and he never saw that scar before. That cancer was hiding in the seroma. All he had to do was tell me to return after I had drained it for him to check again.
I think everyone in that hospital screwed up cause they really took a chance with my triple negative. I didn't understand how serious it is. But they should have.
Now that was the build up for my story... I was in the hospital for chemo and we bumped into the surgeon by the elevator and he's like - How you doing? Are you getting treatment? (I had returned to him 4 months after my first time and then he was shocked and arranged a biopsy that day). So at first I didn't recognize him. I said - Oh, you're the surgeon? Then I really gave it to him. I told him that he really screwed up and missed it. Of course he blamed the Doctor who drained the seroma for not telling him that he thought my scar looked bad and should be biopsied. It felt good to see this doctor and tell him how I felt that he screwed up. (Won't help me medically but it made me feel good).
Now I sent a letter to the head of the breast oncology department telling her what her department did wrong. When I started there, I didn't ask for a specific doctor.The staff reviewed my case (I was coming after the lumpectomy and they knew it was triple negative). They assigned me to a very very young doctor (she may have been just an intern). She had experienced doctors setting up my treatment plan but she was the only one seeing me and missing this mess with this scar. I'm with a different doctor now (the young one is on maternity leave now). I want to see the head of the department or at least have her review my case. I don't know if she read my letter but I'll keep pushing. (We have socialized medicine here. Sometimes it's great. We don't pay a lot for medical insurance and most things are totally covered but sometimes you get messed up like I did.). Maybe it's my fault. I put too much trust in the actual hospital and didn't research the actual doctor (I could have requested a certain one but then I may have had to wait) - I think I'm rambling here.
I think I'm in bad shape and I don't know what to do. I can't believe it. So far, none of the drugs work for me. I finally told a second friend but I didn't tell her how serious this is. We're working on finding the best place for a second opinion but I've seen the statistics and I don't know why I should think I can beat them.
I'm going to have to start telling people. I'll start slowly and see how people react.
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Donna, #1 thing, this is not your fault. Researching a doctor, sure a great idea. I tried that with a plastic surgeon and chose very badly. There's no guarantee about any of this. The onc I love I landed by accident because she happened to go to school with my previous onc who consulted her for her expertise and set up an appt. for me with her.
I think you need a definitive answer regarding your current treatment. When are scans planned? According to schedules I'm accustomed to, you should be well within reason to request them within 2 weeks time. I do every 8 to 12 weeks, 8 when we're concerned about something. I always feel better when I know what we're planning to do next. My heart goes out to you, Donna. Find some peace and don't give up yet. Having caught it later than should have been, doesn't mean there's not hope, though you've every right to be angry.
(((Hugs)))
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Originally we talked about scans after 2 months or whenever seemed right but this large tumor on my breast is such an obvious indicator whether my body is responding to the chemo - that's why I left the adriamycine after 5 treatments. I'm not running to a scan either. There are no good surprises hidden. There can only be bad surprises hidden. The treatments will stay the same.
What I really did wrong in not researching a doctor is where I kept this such a secret. It's hard to explain, but here in Israel everyone has some sort of connection with someone. Once you start telling people everyone has a neighbor whose cousin happens to be the head of some hospital department who can get you an appointment with the head doctor that you need. Actually, my kid's pediatrician in our health fund is also the head oncologist of a large children's hospital here which is joined with a regular hospital here. We're also sort of in the same social circle with him and his wife which is why I didn't want to discuss my health with him. Stupid and stubborn of me.
Next week I'm going to push my way into things
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Hi all, I've been lurking but not posting ... have been in real funk for the last six weeks or so!!
Donna, so sorry to hear you are struggling with a cough. I have also been coughing for about six weeks and my onco referred me to a pulmonologist who has diagnosed me with acute reactive asthma. He says that the lung tumours and the chemo are causing the lining of my lungs to inflame and this is causing the asthma ... we're currently treating it with oral steroids, a steroid inhaler and I am using a nebulizer regularly. Not fun, especially after my 2 month PET showed that I have fractured a rib (from coughing) so now have to have bone density scans etc as the onco is concerned my bones are weakening.
My PET was done after two cycles of Avastin and Abraxane and, unfortunately, it doesn't look likes it is working. Some of the larger tumors on my lungs are slightly smaller and less active but there are a number of smaller tumours that have grown and are very active. Also still lots of activity in the mediastinal and subclavicular lymph nodes and new evidence of disease on my thyroid and some inguinal lymph nodes close to my liver. PET also showed changes to the bone marrow in my spine, sacral joints and hip.
Was supposed to start Cycle 3 of chemo on Wednesday but the onco has postponed it, she is waiting for a second opinion on the PET which we should have tomorrow and she will then decide what to do. This disease is just so unpredictable.
Hope all you lovely ladies have a great weekend.
Take care x
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http://dfw.cbslocal.com/2016/09/14/unt-researchers...
A wonderful member Cathytoo shared this...good news!
Donadd aren't you in Israel?
Please read and let me know what you think!
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Yes, nrsteph I'm in Israel. This looks good. I can't believe they're starting clinical trials so fast as November. I have to find out how to get into it - We will pull strings and push. This is what I need, and it's here!! Thanks nrsteph, you really brightened up my day.
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Has anyone here looked into DNA RNA testing that's supposed to check all your genomes for mutations (something like that). I've heard about 2 of them so far. They're from American companies and I get the feeling that they're just trying to sell me something (first question was "Do you have private insurance?" - I told her that if it can save my life, I'll find the $14,000 to pay for the test on my own but I felt like they didn't really believe in it themselves if they were only interested in selling to insured people).
The two companies that I've looked at were - http://nanthealth.com/gps-cancer/ and Roche https://www.foundationmedicine.com/
They both tried selling me these tests (not those actual companies - The Israeli companies that are representing them here). Anyone know anything about these tests?
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While I'm monopolizing this forum... I just went to our pediatrician with my husband (my kids who are in their 20's needed him to sign some forms for them - we went cause they don't really live at home anymore - he said, maybe they're getting old for a pediatrician
- We told him he's their favorite doctor (Who else would sign their forms without even seeing them? ). I went along to talk about me. This is our pediatrician who during the day is head child oncologist of a major hospital here. So I finally told him that I have breast cancer and asked him for a referral to a top breast oncologist. He said the one in his hospital is tops but very very mean. Maybe I'll try her once for a second opinion.0 -
Donna! Wow! I am praying hard that you find your way to that trial. That is exciting news for us all, especially you in your location and situation. As for the testing, I did Foundation Medicine. My insurance did end up paying for it, though sometimes it is not covered so I was told the cost upfront. It was 3000, maybe 5k. I can check my notes if needed. 14, 000 is quite a difference. Mine did not actually turn up much helpful information so I'd have to defer to others to help you gauge its value if it comes at a large cost. If you do a trial and there is requirement of having a certain protein expression, the testing would be done for you most likely (I think they like their own testing, even biopsies often must be redone, I think, others confirm, please). Also, at least in my situation, I don't have expression of the protein for PD-L1 trials but plenty of results say it doesn't actually matter entirely so it's still a good option for TNBC.
Dimccle and Josie, thinking of you both and hoping you both feel well soon. Keep us posted.
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So here's the story with the NAF1 from the posting above http://dfw.cbslocal.com/2016/09/14/unt-researchers... . The one where they found a "cure" and are starting clinical trials in Israel in November... I was thrilled. I'm here and ready to go. I had to know which hospital was doing the trial to make sure I was in (All the best hospitals are less than 2 hours from me). So I simply googled the Israeli researcher from that clip, Rachel Nechushtai. So simple. She's on the faculty of Hebrew University - Here's her number (you can google her too). So my husband called the number. We assumed we'd get her secretary. I just wanted to ask where the trial will be.
So Rachel Nechushtai answers the phone herself. What a sweet lady (none of that Doctor ego). She wants to help people with her discovery. Forget the trial. Don't wait till November. They're first trying an existing drug that exists for stage 2 diabetes since that's what they found worked in their lab. She gave me the name of the drug and told me to go to my regular doctor for a prescription and try it for 3 months and see if it works. She said it's like "chicken soup". If it doesn't cure, it won't harm. She said, just check that it won't harm your chemo.
So that was my exciting news till today. Today I went to my onco to discuss it. I had sent her all the info and she spoke with Rachel Nechushtai. My onco said that taking diabetes medication when you don't have diabetes can do you a lot of harm. And it may even cause the cells to grow. They haven't done tests with humans at all yet... She said Rachel Nechushtai is a researcher. Not a medical doctor. She wouldn't write a prescription for a drug that she doesn't know what bad effects it might have on me
. It's not chicken soup! So here's where it stands. First of all, let me explain something about Israel. This year, the entire month of October is the Jewish Holidays (not everyday, but enough). There's a phrase in Israel "After the holidays". Nothing happens till "after the holidays" cause otherwise the holidays disrupt things. When Rachel Nechushtai said "in November" on that clip, I knew that she meant "after the holidays". She's first meeting with the doctor who will head the trial this week but then everything will stop till after the holidays. It's very frustrating and very scary. My cancer isn't taking it easy till after the holidays. Now that I know which doctor is heading the trial (not my hospital), I'm working on getting an appointment with her (pulling some strings). Also, my onco is applying in our hospital for permission to give me this drug now without the trial. But she's not too optimistic and She doesn't really want to give it to me without it being watched.
So that's where this new miracle drug stands.
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Thank you for the update! Praying for you...
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Donna, I am quite impressed with your research skills and amazing that you simply called a number and got to talk one on one with the researcher. Crumby about the fall through on being just able to try the drug with the risk of only chicken soup. I do hope the trial will find you soon, holidays or not.
I am curious about the cure claim but don't have time to look at that now. I had not come across it described as a cure but a game-changing treatment that might seriously extend life. Cure is a huge claim for something not even in trials yet.
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Kaay - I guess I said "cure" cause that was how I was looking at it - My "miracle cure". I was pretty surprised to get the researcher on the phone so easily, but Israel is a very informal country (when we called her Professor Nechushtai she right away told us to call her Rachel).
Meanwhile I did manage to get an appointment next week with the doctor who's going to be heading the trial. I was actually looking for a different hospital to go to for a "second opinion" and this Dr heads the breast oncology department in one of the top hospitals here so I was considering going to her anyway. Now that she's also heading the trial I rushed to make this appointment and surprisingly got it (I got it as a "private patient" - paying privately - where we have socialized medicine, but hopefully my health fund will reimburse me for part of it).
Now here's the bad news on my condition and why I'm so anxious to try this drug - So far CMF didn't work for me last year (though no one realized). Adriamycine didn't work for me. And now after 5 treatments of Cisplaten-Gemzar, it's obviously not working for me either. Besides the tumor on my breast looking worse, I'm getting pains in my back and other places in my chest. The tumors that were only in scans in my lungs are acting up. So now I'm going for a scan (I hate the thought of all the "surprises" they're going to find). and in 2 weeks I'm going to be starting Eribulin(Halaven). I'm a little unsure about this drug. The onco said it would be harder on me than the Gemzar was and I will be nauseous. I was really dreading this drug - Between the Emend and steroids I've really been breezing through chemo. (Remember, it's holiday season here - We have holiday plans, I don't have time to feel sick). But today the oncology nurse called me to tell me about the new chemo, and she said it will be easier. They won't even give me anti-nausea drugs with the chemo. (I'll take my Emend - I have at least 2 months stockpiled here). She said my hair may or may not fall out (some fell out from the adriamycine but the gemzar was good to me). So, can anyone tell me about Eribulin(Halaven). What should I expect?
I'm very worried about the cancer speeding up. we know that triple negative is very aggressive.
Oh, I forgot to mention my problem with Eribulin. It has the same problem that Taxol would have for me which is why I've never had Taxol. Because of my MS they're very afraid that it can have strong neurological problems for me. So they tried all the other ones first and now we have to take a chance with these. This is scary too. I'd rather take a chance with the diabetes drugs.
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Donna, that is another incredible happening lined up for you! I am so happy to hear you have an appt. with the trial doctor. I do hope you don't end up having to pay for it as well. Relax as much as you can about the scans. They will be what they will be. Yet, I do hope they are better than you expect and that Eribulin side effects are naught but the effects on your chemo are sizable. Hang in there. You deserve some good news.
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Hi everybody. I have just been told by the doctor that my liver has deteriorated so much they can't do any more. Don't know how to cope and I have two younger kids one of whom is autistic. Has been a sudden deterioration. Left it too late to do what I wanted with girls . Support please .
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barb I am so sorry...I don't know what to say but I am here for you. With a break will liver regenerate?
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I don't think so but I can't give up hope yet. Difficult to get your head around but am just going to try to keep going as long as I can . Difficult to explain to the autistic one and my younger daughter is 12 which is such a bad age for this to happen . She only knows so far that I have cancer and having treatments and have got a lot worse. It's going to be very hard to tell her. Bar
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my thoughts are with you! You are right you can't give up....second or third opinion??? You just keep posting! And taking care of your girls! Sending you hugs!!!!
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Barb, my heart is just sinking hearing this news. I don't know what to tell you. I know for sure you should seek out a few more opinions. Never more important than now to be sure you are hearing every available option. I think I would wait until those consults until I said anything to my children, assuming they could be lined up pretty quickly. I'd not be ready to give up hope just yet either. Did your onc give you anymore information about what to expect from here? How are you feeling physically? What is you most want to do with your children? Find a way to make it happen. Praying for your comfort, peace, and all possible healing.
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Barb, I've been reading back over some of your posts and I really don't understand this. You have not tried a lot of drugs. I was told that carboplatin often works well for tbnc and it surely has worked for my liver mets. Yet, you've not had it, nor several others. Please go get another opinion. I'm obviously just a patient and am learning as I go on this crap journey but you have a right to understand and be sure that what you are being told is definite. Take care. Keep reaching out.
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Barb I am so sorry you have been given this news but like others, I can't stress enough to get another opinion . My own experiences have been wildly different when other onc.'s have covered for mine. Different options for treatments, different readings on what scan results implied. I would also wait for this other info before talking with your daughter about specifics altho I am sure she will understand your emotions now if you tell her you are trying to learn more about your condition and how confusing it all is.
I am hoping you can quickly get some other opinions . I too am hoping for different news for you and your family. Please keep us posted..
Josie
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Barb - I'm not sure what to say but if it's true that you haven't gone through all the drugs and your onc is giving up, you should look for another onc, Now is the time to seek out the best. I know it's hard to go oncologist hopping but you really have to do it. find out the top doctor and push your way in for an appointment. Keep fighting. You're not ready to give up yet, but it takes work. Come back and tell us which superstar-onc you have an appointment with.
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hi everybody. Thanks for the support. I agree there were several chemos I hadn't had but if the liver has deteriorated below the level they are allowed to give chemo that will be the same whichever oncologist I see. I do feel bad with lots of breathlessness and pain in right side. Depressing . I keep hoping the liver can recover enough but I think that's a remote chance. Bar
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not a remote chance...the liver has amazing abilities to regenerate! Don't go quietly...kick and scream!
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BarbDenise64,
How has your liver deteriorated? Have they imaged it, or are they making the judgement on blood tests alone? If it is a couple of large masses, ablation or surgery might be viable. Has it been damaged by chemo or cancer? In the case of chemo induced cirrhosis, sometimes your levels can improve in as little as a week.
Ask the tumor board, or whatever process they use in the UK, for a reduced dose, maybe? Shake the tree until they explain - in minute detail - why they are ceasing treatment.
More details, and we will all hit the internet, with fervor, to see what is out there. Can you travel? Do you have any extra $ for treatment away from the NHS?
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Barb, I echo Blaine. I don't quite understand exactly what liver deterioration means and how they've determined that it's now too much. Do you know? There is a point when we must accept that nothing else can be done but in your case, as in what you have shared, I'm not sure that's the place you're at. Keep questioning. Even great doctors don't know everything. A different doctor might have a different path for you.
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Hi ,
My oncologist has said he just presumes my 4th round of BC is triple negative. How did you get tested for yours and what was your experience with carboplatinum? Im so not looking forward to another round of chemo, altho I am currently on Xeloda. There has got to be another way to health and recovery!!
Thanks Daran
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Hi, Daran! A biopsy of the tumor will tell if the cancer is indeed trip neg. Carboplatin has been very good to me and is often very effective for tnbc. Has been for me. I wish it had been my treatment for stage 1. Maybe I'd not be in this situation now. I experience really no side effects to speak of other than some fatigue on days 3 and 4 after treatment. I have been on it since Aug. 2015. Everyone responds differently so there is no way to know how you might do with it but there is hope that it will be an easy chemo. Are you stage 4? How long have you had treatment?
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so I have the name, number, and email address of the researcher from university of northern Texas. ...I thought I would email some questions...I live mostly in denial and refuse to think about what having this means intelligently so I have a few questions but if you all have any I will gladly include them in my email. I posted the link a few posts ago if anyone wants to review. Let me know!!!!! Waiting to hear from donnadd about her meeting with this researchers counterparts in Israel. ..HOPE
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