Triple Negative Stage IV
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Well Well Well, I thought everyone disappeared. I have switched to an aluminum free deodorant and didn't know if everyone was passed out
I am glad to know it was due to Kaay planning a trip to Flordia which I think will do your platelets well! Have fun and forget about the cancer!!!!! I entered my "I refuse to die" comment in the settings section next to the line labeled signature...just push edit and add a way! I put "I refuse to die" so everyone would automatically know that I am a very Irish/German stubborn redhead, well when I had hair, I can't wait to see what you sign! Again, have fun in Flordia and watch out for the crocs, the horrible shoes of course!Barb, I have been on weekly taxol for 6 weeks and my onc says it is working great. My primary tumor, which won't be removed due to my Stage 4 out of the gate diagnosis has shrunk from 7.1 to 5.4 in just 6 weeks so I am hoping that my small liver mets, and one bone met are shrinking too, well really I hope they go away and never come back! Good Luck Friday, I hope you will check back in to let me know how it goes!
As for lurkers and regular posters, please don't stay away too long, this whole 1/2 a week with no posts is just more than my heart can handle. You are my people and I check in regularly, like daily, to see what you are doing and feeling. I need you all, so please join in. My local hospital put me in touch with a stage 1 Triple Negative gal but it is really hard for me to talk with her because I don't want to burst her "this will just be a long year" bubble. Everything I read says the recurrence rate of Triple Negative in five years is huge so I mostly let her tell me about everything she is doing and I cheer her on! The hospital also connected me with a stage 4 gal with hormone receptor positive and she is great but she gets to take a pill for treatment until a recurrence happens. Even if it isn't about cancer I would like to hear from you all! And, if it is my deodorant let me know and I will switch! Hope to hear from you soon...I feel like Meg Ryan in You've Got Mail!
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Steph, I do feel like you in so many ways, with the needing to have messages to read every day and to find someone to connect with locally. I keep getting close but it's never quite right. These boards are the next best thing. It's just too bad we can't meet for coffee. But, You've Got Mail happens to be one of my all time favorite movies. I watch it once or twice a year.
Here's my update: I had chemo today!!!! Really surprised that platelets jumped up to 104. But, if it's not one thing it's another. I developed the allergic reaction that sometimes occurs with multiple carbo treatments...face turned blotchy beet red, developed hives, some itchiness on the back of my neck, and slight tightening of my throat. Got everything back in control within an hour after lots of drugs. It was a bit frightening with a room full of nurses, the pharmacist and doctor in the room, looking at me, gauging that I'm getting worse not better and injecting more meds. But not allowing yourself to panic (my 7 year old was with us) does have a way of actually keeping you calm and all is well now, though I spent the last several hours sleeping all that off. I am continuing now with just carbo, dropping the gemzar to help with platelets. So I guess I need update. We'll be adding new premeds with my carbo next time and lengthening the admin time. Thanks for the info on adding the signature. I don't make decisions easily so it'll be a while before I determine what I might want to add.
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I knew we would get along Kaay! I watch you've got mail every chance I get. My husband thinks I am crazy I put in DVD s to clean the house instead of radio!
I am sorry about your reaction...but glad you weren't able to panic. I hope your 7 year old wasn't frightened! Glad you were able to sleep it all off...if it is any consolation I have had hives everyday since my 6 year old was born...no rhyme no reason but they stop itching a lot onceI got used to them. Motherhood aint it great!!!!!!
Enjoy your trip!!!
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Yup! My husband things I'm nuts, too. He likes the movie but...
That is crazy about your mommy hives. Yuck! I see my attempt to update my info didn't work. We'll try again.
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I'm pretty sure the person I looking for was in the liver mets thread but I'll post here just in case:
So I had a allergic reaction to carboplatin. I've filed away somewhere in the fog that this occurred to someone else on the boards in the last year. She brought a study to show her onc about extending the infusion time to prevent. My pharmacist and doctor are up on this and thus is the plan along with altered premeds. What I'm wondering is how long and well this worked for you? Did you have another reaction? It seems like every bump is indication that I'm just about done with this treatment and of course, I'd rather not be.
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Hey Kaay....so sorry about the reaction! Awesome Mom keeping your cool for your son!
Isn't it strange when we think there is going to be an issue, such as WBC or Platelet count...there isn't an issue. And when we feel great they surprise us with labs that show low blood counts. I have had that happen 3 times....luckily I was on the borderline and they let me have my chemo. I find that interesting also.....we get disappointed when we cannot get our chemo.
Updated my signature also.......I really like the idea Step! Hopefully it worked.
Julie
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I ladies
I had an allergic reaction to carbo my 9th infusion. It was weird. So no more Carbo for me. I'm currently only doing xgeva and have scans next month. My cancer markers went up but still just normal high. Not sure what this is going to mean. 0 -
Hey Hope....I have the same issue with my tumor markers...they have slowly been going up over the past few blood draws. March 25 - 16.4, April 15 - 16.9, May 6 - 18.8, May 27 - 21.97 and June 17 - 22.94. My ONC is not concerned but said we will do a CT scan end of July just to see what is going on. I know normal is below 37-38 so not really worried. The highest my TM's have been is 45 and that was back in November when we changed from Taxol to CMF they saw a new lung met that was .8 mm. My last PET scan was 5/4 and I was considered stable.....so like you not sure why they are rising...but we will find out in a month.
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Good Day to all you Ladies
Along with putting up with this stupid cancer thing, I have had pain in the right side of my face. ENT Dr said it most likely is TMJ ENT Dr's do not treat TMJ. He said if my condition gets worse we can do Xrays. I am taking naproxen sodium. It mostly helps but not totally. I am typing this with numb fingers.
Also no energy to do anything. Tryed to do a little gardening but couldn't do it. Also I hear from many of you about tumor markers. My MO does not check tumor markers. I wonder why
Really getting way down in dumps.
Thanks for listening.
Rosieo
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Hey Rosieo....so sorry that the pain in your face is still there. Maybe you should see another Doctor, maybe they can give you some relief.
As far as Tumor Markers there are many ONC that do not use them. They are not accurate for everyone. In fact I think they are more inaccurate for most than accurate. That is why most ONC's do not use them.
Sending prayers your way for relief. Remember we are always here for you!!
Julie
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Rosieo, I am so sorry you are not feeling well. I agree with Julie that seeing someone else may be helpful. Multiple opinions are just part of the game in a disease like this. My onc also does not use tumor markers. I had asked her about it after hearing so much about them on these boards. She doesn't like them so much as they are so often inaccurate (symptoms and scans are better guides) but will use them at patient's request. I declined her offer. I think they might have me worrying more than needed. Hard to say. I do hope you feel well soon.
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I was first diagnosed with TNBC in the right breast 7 1/2 years ago. I did ACT chemo and had a BMX. Three years later I had a recurrence in the same breast and had lumpectomy and radiation. This April a mass was discovered in my upper left lung. I had surgery last week to remove the lung lobe with the mass, and pathology determined it is breast cancer, again
There was also cancer in some lymph nodes by the mass. I am seeing my oncologist on Monday to see what our next steps are. A PET scan and brain MRI showed the cancer to only be in that lung. What kind of questions should I be asking this time? I really don't want to do chemo again, at least not the brutal ACT regime - which didn't even work, apparently. If I have to do chemo I don't want it to be one that makes my hair fall out. Would radiation instead of chemo be an option? Has anything new come out for triple negatives in the past few years?
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Rosieo- thank you for sharing how you are feeling. It really sucks to be aware of your face with pain. I am wondering what you have growing in your garden and I hope you feel up to getting out there soon!
Minxie- I am sorry for your recurrence but on the other hand I am glad you made it 7 1/2 years. Everything I have read says that Triple Negative comes back. With this knowledge, my mother and I have decided to live in denial because nothing bad ever happens there;) My onc, said with triple negative it is about getting as much mileage out of each drug as possible but there is ssome new research happening specifically for TN. Sorry I don't have much information but thank you for joining this board. I hope you go much longer without recurrence after this bump in the road. Your post gives me hope!
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Minxie, I am so sorry about your lung mets. First, I would take it as a good sign that you didn't have distant recurrence for so long. That is unusual for a TN and perhaps means yours is of a slower variety (compare to less than a year for me). Second, I doubt you'll do AC/T. As you said, doesn't appear it worked. Same for me. Third, you may find that whatever chemo you do, it is more tolerable than that for your initial dx. This seems to be true for many of us and no hair loss is a perk with several chemos, too. I've enjoyed hair for a year now, hated T, but do fine on gem/carbo. As far as what's new for TN, I would definitely ask about immunotherapy trials. Good results are being found for TN. It's what's next for me when the time comes. Best wishes at your appt. I hope you find a plan that gives you some peace.
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Im so behind on reading here! Just wanted to mention dh and I've been reading up on what we kind find about long term opiate use. It can cause rebound pain and hypersensitivity to pain! I'm so grateful for the pain control but hoping to do a trial weaning soon. I never want to be in the position of horrific unimaginable pain and not have pain meds work. I saw this once when I was working at the hospitsl. Woman had been on narcs for 10 years and was do tolerant she could not be sedated for procedures and post surgery w as agony. I may be off with my thoughts here but I think it's worth questioning and studying. Again I'm so grateful for pain control! But...I want to be educated and not destroy mg health or qol being addiction to narcs. I very been on them since 2013.....maybe I'm worrying for no readon....thoughts and experience please
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My phone creates typos and I miss them!
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hi I'm new on this board. First dx with TNBC in 2011. NED almost 5 years. Now stage 4 with mets to sternum bone and both lungs. I did 11 treatments of abraxane and due to being sick and suffering a lot of side effects my onc made me take the month of June off and hopefully going to start immunotherapy with Opdivo July 7. My last scans showed no new spots and on my lungs the bigger spots shrank and some of the smaller spots stayed stable, I rescan next week for bones and the following week I have a ct. I was initially told I have 18 months to 2 years. That isn't good enough. I have been contemplating on going to Cancer Treatment Center of America in Atlanta. Any advice I'm open to. I just want to live ...
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Ksmatthews- I agree 100% that 18-24 months is unacceptable. I am glad to hear that you want to live...that attitude helps! I was hoping to qualify for an immunotherapy trial but am PDL1 negative. My onc said that immunotherapy is the cutting edge for new drug options for breast cancer. I really feel a second opinion is important and that the onc does research for breast specific cancers. My first opinion was from a onc who treats all types of cancer and my second was at Mayo where my onc is involved in nationwide drug trials, publishes research often. She also teaches and travels the country learning about and educating medical students and onc about TNBC. I gained a much more positive attitude after obtaining my second opinion. I live about 3 1/2 hours from Mayo so I feel lucky that my Mayo onc and local onc are willing to work together. I am able to get my weekly Taxol in my home town and I just go to Mayo for testing and to meet with primary onc. Best of luck on your upcoming scans please let us know how they go!
HopeFaith- I personally belive that slowly weening off heavy duty pain meds is a good idea, they are not good for lots of reasons but nither is extreme pain. Do what your body tells you. Pain is your bodies way of getting your attention and narcs blurr that message. Let me know how it goes!
Just got home from a camping trip! Family is good for the spirit but I am happy to be back in my own bed...if only I could sleep;) Got genetic tests back...BRCA 1/2 negative. I have perfect genes no mutations or inconsistencies...
I hope everyone has a great week!
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Hey Steph....I am there with you on those perfect genes. I tested for BRCA 1 and 2 and they are negative and PDL-1 came back negative too.
I keep saying...can I test positive for something other than cancer
.On a happier note.....last week I took a big jump and announced my retirement! I have worked for 3 different companies at the same location (Nuclear Power Plant) for 31 years. My husband retires this Thursday and it was going to be so hard to get up at 4:30 a.m. to go to work with him still in bed. So I made the decision to retire with him and to "Live Life" while my body is still in good shape! I was diagnosed 14 months ago as Stage IV with mets to lungs and sternum. I still feel as good as I did on that day and figured I needed to do the things I want while I physically can, hoping and planning on that being many more years with Gods help. I currently work 4/10's a week and drive 1 hour each way to work. After diagnosis I continued to work because it was my normal. We are financially stable and do not need my income to do the things we want. So on July 28th (I gave them 5 weeks notice). I thought I would be scared....but I am soooo excited!!
Julie
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texasrose - congratulations on your plunge into retirement! You will be so happy sleeping in and eventually waking up whenever you want. I hope you live some extra for me too so that I can live vicariously through you and your joy. You are now my spirit animal and I DEMAND you share all the fun you have on your travels! I have three small children and my husband and I run two companies so I need to hear stories of how others live because other than being a chauffeur, cook, housecleaner, accountant, scheduler, potty trainer, ect., ect., ect., I of course mean loving wife and mother;) I don't get out much!!!! So share away lady! I am also glad to hear you feel just as good as you did when you were diagnosed. I am only a few months in but I keep telling everyone that I am perfectly healthy and minus the hair loss and very few joint pain days you would never know I was sick...that is my mantra! I am so happy for you and wish you the very best!
As for PDL1 Mayo had like 24 spots available for first line immunotherapy treatment trial. I was the 8th person they tested and only had 3 at that time that qualified and only two were still in trial. I would like to know more about the immunotherapy option Kaayborg has mentioned as secondline traetment so I can ask my primary onc in July! It just seems like I hear more PDL1 negatives vs positives.....what do our tumors have?
So in general I do not take medicine...I just never think "oh, I have some snot running down the back of my throat, I will just take some allergy meds to dry myself up." But now, I take zoloft so I don't cry as easily in front of my kiddos, vitamin C, D, calcium, curcumin, probiotic, zantax for my slight allergic reaction to Taxol it is a rash on my forearms that seems to get worse in the sun. I also was told by the oncology dietitian that since I have switched to a mostly plant based diet I need 100 grams of protien a day which is HARD. I drink a daily kombucha and cook my quionoa and other grains on bone broth. AND I juice some stuff a few times a week Carrot juice and Beet juice are so gross but now that I have lost my ability to taste most things those should get easier to swallow! Always looking for the bright side! I am just spewing this out here to fish for anything anyone else is doing. I want to drink essiac tea but primary onc said not to but couldn't remember what exactly she had just read about it. I found a study that said essiac tea could spread breast cancet but I thinkthat was for estrogen positive breast cancer. ..but I don't have estrogen receptors so again considering essiac tea, anyone have any thoughts. I have also got frankincense, I have been told to rub on skin where tumors are and to take orally with leadum three times daily. They are doing a lot of reasearch in the middle east with resin of frankincense and having seeming luck but essential oil does not contain the resin from what I understand, any thoughts?
Ok, are your eyes tired from reading this exccessively long post? Sorry typing diarrhea
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I had my first followup yesterday since my thoracotomy with my oncologist. The path report says they got the tumor, clean margins (since they took the whole lung lobe), but 2 out of 11 lymph nodes tested had cancer. He is classifying me as Stage 4 NED. He outlined 3 options for treatments. 1) Do nothing for now 2) start a chemo - Xeloda was suggested since I really don't want to lose my hair, and there are studies where Xeloda was used to "mop up" TN after traditional ACT and surgery 3) Possibility of trying an immunotherapy trial - but that would involve Taxol.
He says my case is unusual, both because of the length of time to metastasis (7.5 years) and because it's a single isolated metastasis. There's no real clear cut treatment to follow here. He's going to consult with Dr Carey in NC, who I saw after my first local recurrence 4 years ago. He also wants to do PET scans every 3 months to check progression. Problem is my insurance, Cigna, will deny the scan as "surveillance" - he says it happens all the time with them.
I'm trying to figure out how to pay on my own for a PET, but at 8K for each one, that's impossible. Anyone do GoFundMe? I hate to ask for money, but... I'm going to see my oncologist at the end of next month and see how we want to proceed - he wanted the PET done before the visit but it doesn't look like I can make that happen right now unless CIGNA surprises us. Any advice appreciated!
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Good luck finding funds! All these fund raisers yet where is any money at all to help us patients? I don't know where we could even apply for help but you know pink stuff raises a lot of money. I'm feeling bitter about everything
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minxie- I am very happy to hear that you are NED! I know of a woman here who documents her journey on Go Fund Me and has raised over 20k. https://www.gofundme.com/lindsaysjourney. I say go for it! Also, at the hospital I go to for my chemo I was encouraged to fill out a form for assistance...the administrator said they are a non profit hospital so they have to give so much money back to the patients. I would also contact the American Cancer Society I don't know what they have specifically but they offered information on financial assistance when I called for the Reach To Recovery program. I don't know if any of this will help but I wish you the very best and am so haapy to hear about NED!
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Hi All!
I'm back again and trying out posting.. I guess I could "post a reply" to each topic that spoke to me, or I could comment and see where that goes.. I'm afraid from despite all my reading, I don't yet have everyone's names and comments linked properly in my memory!however, here goes:
-I love the piece (Mtinxie)? where you see you are NED. that is so encouraging to see! and that it was such a time until recurrence. that bodes well! I've recently met with a research oncologist who thinks my TNBC was present originally, was missed by my TAC treaments in 2008, and hid during Tamoxifen and Aromasin and has surfaced this last year in my neck nodes and is populating other places now...hmmmm?
-also glad to see options suggested nrsteph re. funds. In Canada, its not the same picture really. We don't do PETs at this time, tho I guess I could try finding privately. I think my MRI and CT scans give answers. We also don't do tumour markers as my onc's say the numbers are too unreliable and there's no standard yet to say what means what with such variances between individuals. (my interpretation of that info anyway).
-to ksmatthews: my thought too are to get more opinions/ information. Originally last summer, I was told the "median survival rate" that matches your time frame, but was then told its now 30 months(ish) but that people are at other ends to much shorter to NED; BUT all oncologists have said that no statistic can be applied to an individual so I hope your situation unfolds in a new light with more info! I think the big picture is to just keep living and trying to find treatments that can optimize that in terms of quality of life and length of time..
-Texas Rose- congrats on retirement! and on your own timeline.. hope its full of fun developments. I was off on short term sick leave until early spring when everything got intense with lots of new, not good growths and I thought it would be tough on coworkers, me and people I work with directly to go through those ups and downs. I really grieved going onto LT disability ( so lucky to have benefits, but so sad to leave a wonderful workplace)..
-and lastly, not to fuss too much, but I've had facial pain too: Roseio - I didn't see more details for you, but for me it was because I had extra lymph fluid in neck and area that was due to cancer growth. Because the area around my jaw neck and hairline was so tender, my MD thought TMJ. When I mentioned to my onc she scanned and could see my neck lymph node mass was increasing in size. Originally, shortly after diagnosis of my recurrence last year I had a similar discomfort in the same area, thought I had an ear infection, and had my ear inflate to a bubble without any of its regular curls and indents. My onc explained that was an earlier example of the same scenario. So from my history, I would at least ask the question, could it be lymph fluid, and if so, why is there extra??
I too check to see what action there is and I'm glad to see all the posts. I feel lonely - alone? sometimes as I may have said there's no metastatic disease support group and no TNBC group here and I am the embodiment of everyone's worst nightmare when I dropped by at a local breast cancer support group!
Wishing everyone well,
Josie
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Hi everybody. Thought I would check back in although later than I said as my oncologist is off sick so I had to see another. It appears that after my tumour markers came down in the earlier weeks of taking paclitaxel they have now plateaued so I guess that means I am stable! Anyway that's' better than worse and he said to carry on the treatment so obviously feels it's still having benefit.
I am trying to keep up with a 25 year old son who can't get a job, an autistic 16 year old with lots of problems-bless her and a highly active 12 year old. The summer is going to be tiring. All the best to everybody else. Barbar
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I can't say how happy I am to read when people are stable or NED.. it really gives hope. thanks for sharing and I hope you get to sit in the sun a few times for some peace, rest and immune system building! J.
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It has been a while since I checked in, still NED and still on vacation from Chemo for my cancer (I began my "short break" Oct 2009) and still getting my butt kicked by Sjogren's an autoimmune disorder that went ape sh** when my immune system came back online. I am taking wouldn't you guess an older chemo drug called Methotexate in a low dosage to keep my white blood counts low to curb the damage. Lately I have been sleeping more than awake but I have no pain which is important for me, not so cool part is I love the sun and beach but due to the Sjogren's those days are long gone. I am literally and figuratively allergic to the sun, LED lights which sucks since everyone and every place uses them, I have to wear sunglasses everywhere, cause lights hurt my eyes to the point of up chucking, I can also get burns from sun and some uv lights. Have to lower light on computer especially with white backgrounds like Word, Excel and this website.
The dreaded 3 month return visit to the cancer hospital is fast approaching where I get to find out if my long unexpected ride with Mr. Ned has ended or my love affair will continue. Part of me would rather go back on chemo because no immune system means no more relentless attacks from my immune system. My joints, glands, eyes, muscles, mouth, skin, vein's, digestive system, kidneys, liver and well basically anything that is moisture making. Also have Fibromaligia, Raynauds, Varicose Veins, and other stuff that I can't remember. On a crazy amount of drugs all having possible interactions if mixed together it is a crazy cocktail we seemed to have got the right combo at the moment. My biggest issue is extreme fatigue, doesn't help that may cause drowsiness on all my drugs. I think I am up too like 6 Specialist Doctor's, the biggest pain is the doctor appointments, before I went on Disability from work I was only 20 minutes from the Cancer Hospital but now its 2 hrs away. They long trip takes all my energy from the entire month, which is how long it takes to recover from each trip.
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hydeskate- I hope the love affair with NED continues! If I could I would trade you 8-9 hours of sleep for awake time as I am not sleeping at all so I just got some melatonin....fingers crossed I will get back all the lost hours of sleep and you can have the waking hours!
I too am encouraged to read about those of you that have reached NED status...KEEP POSTING PLEASE!!!! I like all the positive posts as I am new or maybe naively hoping that there is a lot more hope than the statistics suggest! I live in a wonderful land called denial and kinda refuse to step out into reality because I don't feel like I have cancer, I feel perfectly healthy. I keep trying to find the bright side in everything, for example I am going on three weeks with little to no ability to taste but this makes me feel like my carrot juice, beet juice, and pea protien powder should all go down a lot easier now....see a bright side my body gets all nutrients, digestive system gets a break, and I don't have to taste it!!!! #Brightside
I hope everyone had a great holiday weekend and gets back to posting regularly! Now back to making chili per my 6 year olds request, I guess she doesn't understand that no one wants to eat chili qhen it is 80 degrees outside but it is her favorite...what I won't do to please her;)
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Josie
Thanks for your reply to my face pain. Went to primary dr. he prescribed carbamazpine. it is for neuralgia but he also wants me to get a brain cat scan because my face is numb around my mouth.then when I went to my MO he said I should get a MRI not a cat scan. He said to call my primary and mention that to him. Called. Primary Dr is not in today. MO went on vacation today.
How do you like that??? Now I am worried, if it is a brain thing. I myself wonder which is better. Cat scan or MRI What did they do for your brain problem
Thanks for any help Josie or anyone with any info for me.
Rosieo
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Back from vacation and had a great time but I also do love to come home. So much to catch up on with these boards. Barb - so glad to hear your good news! And congrats to Julie on retirement. That is wonderful. Enjoy, enjoy! So many new names too.
Josie, I completely get what you mean about trying to keep names and situations straight. Chemo brain is of no assistance either, but what I do love so much about all the ladies here is the grace we extend to one another. You can get us all mixed up and we won't care a lick. We just want to know we're not alone and we want to support each other however we can. It would be nice if there were a way to reply as you read instead of having to wait until the end.
Hyde - I do wish you the best in staying with Mr. Ned. Let us know!
Rosieo, I had some facial twitches that my onc checked with a brain MRI which came back clear. I wish the same for you and suspect it will be. It had worried me a bit too as I was not expecting her to order an MRI when I mentioned it, but she just wanted to be sure she wasn't missing something.
Steph, the trials my onc have mentioned for me are at Vanderbilt and at OSU (my home center). I don't know much about them but she was excited about them for me. I am not PDL1 positive and asked her about this but she said they are getting good results even for those not positive. I'm guessing there are trials you can be in where it does not matter.
Ks - I considered CTCA in Chicago. My aunt went there and she had wonderful things to say about it. She was TNBC stage iv for a year but got treatment there for only her last 5-6 months. I looked into it as an option but my insurance wasn't accepted. Even before that I wasn't sure that the care they give would be superior to my home center and worth the travel. Never had to make the choice though as money made it for me. Best wishes to you! I do love their complemetary medicine aspect.
Back to chemo on Tuesday. Hoping to keep my newly tanned complexion and leave deep purple/red for the beets (I did post about my allergic reaction last time, I think). And of course, those platelets had better be way, way up!
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