Triple Negative Stage IV
Comments
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nrstephSorry you are going through this and I do agree that more information and choices are usually better ....up to a point ... and then you can get confused
Regarding doxil ... I watched my wife slowly losing weight and having abdominal symptoms after about 4 months
Since there was really no response and then her liver enzymes went up for the first time she got 2 doses of Hallavan and ended up jaundiced and in full blown liver failure
She was hospitalized for 5 days and the liver fully recovered and we went to Memorial Sloan in NY and started xeloda
She is gaining weight and all liver enzymes and bili are normal so for now we will await upcoming scans
I find that oncologists have a very tough job but the art of medicine is to match the patient with the best drugs and individualize their treatment
Many of them are either too busy or too regimented to change ... that's why a second or third look at your individual situation is warranted
To some docs patients are a burden and they are not very compassionate and warm ... they have a difficult job but if you need more .. look around ... because at the end of the day they are not operating on you rather prescribing toxic drugs that really needs to watched closely ... and any oncologist can write the script but the good ones will do it and do their best to individualize it taking into account quality of life and side affects and pick up complications early
The great oncologists do it with compassion and caring but I'm afraid that in their world they protect themselves in such a difficult world ...it's a tough field
For example , as some know xeloda is routinely 2 weeks on and one off
The studies have shown 7 days on and 7 off are comparable with fewer severe side affects
Then there is the dosing and how much to push a patient, and that in my opinion is the art of medicine. When looking for a second opinion you want the truth but you also want quality and quantity when at all possible
You want hope , but not false hope and you want compassion for you and your family
The other aspect of a second opinion and major cancer center is an oncologist who can fight to get you approved for clinical trials and they sometimes have more studies in their institutions
It's like having a coach fighting for you, so if you don't feel as if you are having that doctor or medical team behind you.... see what else is available
Wishing all a 2017 with hope and new therapies for all
I hope this helps .. sorry for carrying on a little long
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So great to hear from you, Julie! You are out there enjoying life so much; I love knowing that. In case it helps ever, here's a summary of how my onc has kept me on gem/carbo (or carbo) as I've dealt with low counts:
Added neulasta after day 8s
Added neupogen after day 1s
Reduced gemzar 20%
Added an extra week recovery (2 wks on, 2 wks off)
Reduced gemzar another 20%
Dropped gemzar altogether
And another option discussed but never tried was a day 1, day 15 cycle. Throughout my onc preferred to keep the the tx in subsequent weeks though they have done days 1 and 15 with some success for others. She also favored dropping gemzar with the hunch carbo is what works best for TNBC. Has worked so far. Wishing you the best to stay on current tx, provided it is doing what it's supposed to do. Keep strong and enjoying all life offers!
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Hey Kay! Thanks for the info. She reduced after the first session when my white count was low. So not sure what she will decide next Monday when I go in for session 3. I did ask about Neulasta but she said she prefers not to use if she doesn't have to. I will keep you posted. Hoping I have the same stable results as you have!
Julie
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Homehelp - Thank you very much for the response. I agree with getting confused especially because TNBC doesn't have any targeted treatment YET! I hope your wife is tolerating the new treatment well! Thank you for ALWAYS being so available, kind, and responsive.
Josie - LOVE the dorry toss...they are good but breath is so yucky...however, the sentiment of a goooooey kiss is always welcome!
Kaay - Thank you for the run down, knowing what to expect is half the battle for me and knowing that you had changes but are still seeing results is WONDERFUL to know.
Texas - I am living vicariously through you so travel away and tell me all about it! I have a friend who is very spontaneous and I AM NOT. I AM A HUGE PLANNER and usually say "no" to anything I cannot see in my head as working out. However, she said "hey do you want to go to Flordia in Feburary." My first instinct was to say no because just thinking about packing for me, my husband, and three children made me panic a little. BUT, I said "yes let me know when we are leaving." Woo Hoo I am really living life by the seat of my pants...so Flordia here we come!
Sister- I hope you are doing well and that the pain has subsided.
Donna - Listen Lady! Don't stay away too long, I think of you often and wonder how you are holding up!
I met with GI and Derm yesterday at Mayo. Had an endoscopy (sp?) and they found two ulcers at the base of my esophagus and the GI doctor said "they look like they hurt and they are probably better than they were last week." Yes, I can at least eat this week! Did you know that when food feels like it is stuck in your throat it is actually stuck at the base of the esophagus? See you learn something new everyday. Derm said that I have hand and foot which is a common side effect of doxil however, they don't call it that anymore because chemo comes out of the skin everywhere hence MY ENTIRE BODY! So I get to apply two strengths of steroid cream...I hope I develop some muscles:) Give me two weeks and I will be challenging everyone to an arm wrestling contest!!!
To anyone I missed, I am putting off filing quarterlies and year end business tax forms to type this and am sad I cannot think of anything else to write. Back to work with A&E Pride and Prejudice in the backround!
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Ok my people---- I just got a call from my onc. at Mayo. She offered a study that is going to start perhaps on Monday at Mayo and I know the decision is mine and I have done a little research (although haven't found anything yet in ley terms)....I just want to pick your brains and see if you have heard about his if so, what have your heard, read, understood? This is a phase 1 expansion cohort for cisplatin and ATR. This would be in place of carbo/gem I was going to start on Monday. I have agreed to be tested for this study (2 weeks no treatment), I have to be confirmed as BRACA - and positive for basal type (which TN usually is from what I understand), so we think I will qualify. The study is enrolling 50 TN and already has 27. Not to complain but this is one thing about cancer treatment that I really do not like. I am the "driver" but I know nothing. Who knows what the right choice is, NOT ME! I feel like my six and two year olds, stomping my feet and saying "I don't wanna." My onc. is very nice and tells me the facts I feel. She said I can switch to gem/carbo if the study doesn't slow progression or gem/narablem (not spelling correctly) but who knows. I think I will try the study because it gives me one more line of treatment to try...my local onc. voice is in my head saying "we are not being aggressive enough." I don't know if I shared earlier but my local onc. is not too happy with Mayo onc. choices and expressed those to me...I really wish she hadn't done that but I understand that she wants what she feels is best for me too! Local onc. is a general medical onc. not a breast specific onc. like my gal at Mayo so I say the Mayo onc is driving the bus. Arg, what to do?!?!?!?!
Oh, also I called Weill Cornell in New York this morning about the Copper Depletion trial they have been running for years. They are going to open to new participants in the spring so the lady said to call her back in late April. At which point we will know my current status. She said much to my shock that they have TN women who are being treated with this daily oral pill that depletes excess copper from the body which may prevent mets from forming so in April to qualify I will need to have stable disease, among other things, and not be on chemo....Does this sound weird to anyone else. I asked to clarify and said "so you have women taking this pill who have stage 4 stable mets/tumors and ARE NOT on chemo." She said "yes, we are testing the copper depletion drug without combination chemo." WHATTTTT? So I asked Mayo onc. to look into the research so that if this becomes an option we know everything we need to know. Again, WHO KNOWS...but it is an adrenalin rush to feel like we have options to consider!!!!
Thank you for reading this adrenalin filled rant, my husband is in meetings all day and my mom is at work and no way I am calling my mother in law until I have all the facts so I just had to talk about this and I guess madly typing on a computer counts. Also, I have a problem with run on sentences, thanks for reading anyway! Funny story, I am a type A person and ALWAYS follow the rules, I will sit at a broken red light forever because I just can't bring myself to run it...you get the point. Anyway, I had and AP History teacher in high school, he didn't like me and I did not like him...he was kinda a jerk to me. He accused me of plagiarizing part of my midterm paper on The Battle of Midway, which as we know is against the rules and I DO NOT BREAK RULES. So he gave me a C which made me cry because I did not get C's on ANYTHING...anyway my AP English teacher whom I LOVED came to my rescue and went to him and asked to read my paper. She concluded that there were too many run on sentences for me to have plagiarized. So he bumped my C to a B- JERK! And he called me Nickel which I hated....Awe I digress, if you can laugh at anything I hope you can laugh at this!!!!
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Nrsteph-very exciting to hear about your new options. Just learned about the Copper Depletion trial from my DD. Planning a trip down to Mayo Rochester soon to see the MD you recommended. Hope you do exceptionally on whatever treatment you choose
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woo hoo! I am glad that you will be able to see her, I think she is great. Best of luck stilts let me know how it goes!
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Nrsteph, I think your thinking is just right. I would do the trial first. It gives you a chance at another possible treatment. Gem/carbo will be there waiting if you need it. I knew nothing about the copper depletion so thanks for sharing. That does sound promising. Keep us posted!
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Hey ladies....the copper depletion sounds interesting. I have an appointment with my ONC on Tuesday, I plan on asking her about it. Stilts, thanks for sharing!
Nrsteph...I agree with Kay. Do the trial before Gem/Carbo.
Stilts and Nrsteph....definitely keep us posted!!!
Julie
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Hello. Thank you for all the info. Gem/Carbo didn't work for me and now i"m waiting for insurance approval to start Xeloda. No one has mentioned any trials EVER. I wonder if it is because of needed travel and I have made my work a vocal quality of life priority? I found a link for clinical trials, but was warned that Phase I trials were risky?
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hello. Just courious about how you are doing? I noticed your mets was to a lymph node? That is what o was recently told. 2 in chest wall and 1 in paratracheal. Doctors say this is a good thing but it coming on so quickly is not a good thing?
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Rhys, I don't know how extensive your mets are but that could be a reason for not doing a trial right now. I had to start with a chemo b/c they work faster and it was most important to get the disease under control. Trials are a good option for me now. Xeloda works for many and is usually well tolerated. Best wishes!
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Kaayborg, thanks for the response. I have one nodule/lesion in each lung discovered after I went to the ER with symptoms of pericardial and pleural effusion. I never had any scans scheduled after my initial diagnosis. I had positive response after 3 months of Gem/Carbo, then my blood work was too poor for the next 3 months for much treatment (I think I only managed 2 infusions), and the Gem/Carbo was discontinued after a second scan showed that the lesions were larger with increased metabolic activity. I still have never had my brain included in the PET scans, which makes me nervous since I would never have known about the first recurrence if I wasn't symptomatic, but I seem to worry about pretty much everything, so that may be unfounded. I'm not sure if that info makes me more or less suitable for trials.
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Rhys- I found the guidebook written by Bestbird helpful. It helped me to formulate some questions and gave me a heads up for symptoms to look for as TN. Just look her up and she will e-mail you a copy to review. She is pretty active on this site, she is not act Dr. just a fellow roller coaster rider who as done a lot of research. I glad you found us, THE Women On This Thread ARE MY lifeline.
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Rhys, I'm not sure either but I would ask. Always ask everything and keep asking until you fully understand the answers. Now is not the time to hold back. I am typically timid to ask questions but at this point, I ask every single thing no matter how stupid I think I might come across. I would also ask about a brain MRI. Many oncs are willing to do scans even when they might not actually feel it necessary just for a patient's peace of mind. If they don't think it necessary, ask why not. I asked my onc something similar and once explained, I felt better and decided not to do the scans (my treatment wouldn't change even if there was something there). I've also decided the opposite, when the explanation didn't satisfy and so did the scans (the bloating is probably treatment related; she was right but I do not regret being certain now). Let us know what you find out.
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hi Rhys,...when I was first DX , my BC had already gone to lungs and bones and when I went in for an appt one day I saw a different doc on the team.the nurses all told him that I was always a lil quirky ( I have a bit of a twisted sense of humour at all the wrong times ) but he insisted on the mri of my brain anyway. This was a very good thing and helped save my life. Still haven't figured out what joke I cracked to tip him off to my condition...lol...but I'm almost positive he didn't laugh.....all my sister's....Keep fighting!
You are all in my heart
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Thank you for all the responses. I have requested a guidebook, feel more confident about my worry and more comfortable with my own odd sense of humor
Best wishes to you all, and thanks again!0 -
rhys- stick around and ask anything you want here....I usually ask here first and I just get everyones input and it helps me to fine tune what my question really is! ♡♡♡
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Hi Rys - I was told I was stage IV last April when they took a tumor out of my lung and confirmed it was MBC. After that it was a waiting game with scans to see how to treat it. When I finally did have progression in October (a lymph node between my lungs) they pushed for a clinical Phase 2 trial - CDX-01. They seem to feel this is the best option for me. The other option would be Xeloda. Right now I'm waiting for my tumor to be large enough to start the trial - ugh! What a weird place to be in - hoping I can start the trial, but really, really, really not wanting a bigger tumor. I have a PET/CT tomorrow - we'll see what it says!
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Rhys, you ask about a brain MRI if that's important to you. It never occurred to me, being very new at this return game, but something made my onc ask for one. It looked like I had a couple of tumors in my right lung and some very unhappy lymph nodes, but not much else showed on the PET scan. I got the brain MRI a week ago and it very literally changed my life, as I have three tumors, two of which are greater than 2 cm in size. There are also two lesions. They had repeatedly asked me about headaches, but I hadn't noticed any. That has changed over the past two weeks, so I'm glad they were on top of everything and checking.
The one thing I have learned is to ask. Sometimes I come across as difficult because I want it straight. I believe in telling the truth. But it has stood me in good stead and resulted in a situation where my onc and I respect each other a great deal and I can trust her. Your concerns and fears have a right to be heard and dealt with.
Speaking of my brain, it is going to become acquainted with CyberKnife radiation very shortly. We're still in the planning stages. Here's hoping for a good result (and some feeling back in my left side).
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rgc- I hope all goes well! Let us know the plan and how it works!
Josie- I apologize if I am wrong but I think you are from Canada (or someone is)!!!! I just found this today and thought about you so I hope you are from Canada... http://www.cbc.ca/news/canada/saskatoon/u-of-s-researchers-treatment-breast-cancer-1.3930868
Also please excuse my lack of Canadian geography....YIKES I am edumacated I promise!!!!
Hope everyone is doing well! I got word Day 1 (Cisplatian) and Day 2 (trial drug) will begin on the 24th!!!!! Also, found this https://knowridge.com/2017/01/double-whammy-for-triple-negative-breast-cancer/
GO SCIENTISTS GO!!!! I had to explain to my mom that there is a race to market for a TN drug so some CEO's can cash in on this "new" market so that is good for all of us...I think! I don't care on one hand who gets rich I just want to watch my babies grow up!
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minxie: a weird place to be in, absolutely! I hope your scan results are best for your overall outcome, whatever that may mean.
rgc77: I truly hope the treatment gives you back feeling and peace of mind.
You all seem so courageous in the face of such uncertainty. It is inspiring!
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Hello Ladies, I'm still Fighting hard. I have a Pluerral Effusion, however, less Fluid is being extracted. That was the Good News, I have lost a considerable amount of weight, I now weigh under 104 lbs as of 2 weeks ago. I use it weigh 168 lbs, but started loosing in September dramatically. My Doctor said, it's going to take time for my weight to come back, but when, I can't afford to get any smaller. I can barely walk and breathe and really can't due them at the same time.
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Sister- Hang in there! Good news you don't have to count calories!!! Eat what you can and try not to get too stressed out. Best of luck, hugs!!!!
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Sister, I'm so sorry that you having to fight so hard but admire your strength. I hope you are surrounded by many who love you and can offer the needed support until you get stronger and slowly regain your weight. So glad to hear about less fluid. It sounds like things are moving in the right direction. Prayers.
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Hi all again!
thanks nrsteph for the Canadian info . I live in central Canada and we have some good clinical trials in Toronto Montreal and Ottawa.
...and minxie, sister-sister kaayborg rgc and rhys I'm all reading to compare symptoms and treatments.. CMF still seems to be OK for now and my brain seems Ok too. Rgc, cyberknife was great for me and I could take in a cd from home to view which was the Earth series -1 on oceans and space -very celestial for me.
I have seen a team who say I don't complain enough - they are all about symptom management. so big shake-up : 10 radiation sessions as I learned its likely my secretions and spewing are due to some disease higher in my neck behind my jaw. They can't see my jugular and so backup arteries are helping but that's why facial swelling pain breathlessness and secretions - which can be improved. Also on decadron (sp?) to help with swelling, appetite (sister-sister - maybe a steroid to improve appetite and weight gain for you too?). other pill regime too, but seems do-able.
also found out I have LITRES of fluid around my lungs so possible draining, but I want to wait until rads done.they start on Friday.
I also have lost function in my left arm and painful too now. also due to disease at c3-8? messing with my bracchial plexus.They are hoping some decreased swelling may offer gains.
wishing everyone stability - in whatever shape its needed!
J
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Hi all, just a quick hello from me.; hugs to all members here.. wishing you all the best.. strength and efficient treatment..
Thinking of you all
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Hi - I haven't been on for a long time. Well, no good news here. They found mets to my bones - (original mets in lungs, but they're not making trouble) - But bones are painful but they're handling the pain I'm short on time for writing now so i'm trying to get to the latest). I started xyloda and I thought finally!! a chemo that works(I thought.) - But then I started having real walking problems (remember, I have MS and I've always limped and anytime i'm tired or sick the MS acts up. So i was really tired and couldn't walk so I assumed my MS was reacting to the cancer or xyloda and hoped steroids will help me out. So the oncologist on call then basically agreed with me but they called my neurologist bu she wanted an MRI to see i the MS was active. So I did the MRI ofmy brain and they found my MS is fine but I have mets in my brain. So we stopped the xyloda for now cause I'm starting radiation to my brain now - So I'm running in 5 minutes to the first o 5 radiations.Then I'll go back to xyloda (I don't think my onc is optimistic - A lot more to say.I shouldn' have started now when I have to go (I don't think i'll have anothe chance to write for a week
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DONNA- I am so sorry to hear about the pain but am glad you have a game plan.... PLEASE don't stay away for so long. Whew!
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oh Donna.. take it one step at a time.. Looks like your doctors put you on a plan to get rid of/slow down the brain tumour.. cross fingers for you this will work after that you can get back to chemo for the rest.
In your pocket and praying for you.. many, many hugs from me!!
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