Triple Negative Stage IV
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Steph, I wanted to respond to some of your questions/concerns. I am on my first line of treatment so no tumor resistance yet (tx for almost a year now) but I expect it eventually. It's part of the stage 4 game. You find a treatment that works, it becomes resistant, you find another. Having to change treatments is scary to me as it brings me back to territory of the unknown and of course, I much prefer knowing where I am. Still, knowing so many here who have made treatment changes and all is okay helps tremendously.
As for diet, I have always been had a fairly healthy diet but made some changes post my stage 1 dx to prevent recurrence. I cut back on meat, esp red, added more fish and vegetarian dishes. Ate more fresh veggies, added more Indian food (for turmeric benefits), flax seed, drank green tea to death, pretty much eliminated added sugars. I also began regular exercise (daily yoga and walking). These efforts scored me massive liver tumors in less than a year so I was a little bitter and will never believe diet is going to save me. Still, I think a great diet and exercise make you feel better and weather treatment better so I eventually came round to keeping the diet changes but with more allowance for dessert. Recently my onc has encouraged I get more cardio per a new trial about exercise and stage 4 breast cancer out of Sloan Kettering. There is a thread about this study with a gal who is actually in the study. I am gradually becoming a runner with the couch to 5K regimen (though I take it slower and do each stage until I feel like advancing). I thought I would hate running but I like it actually. I also believe in drinking lots of water.
That being shared, I encourage you to do what makes you feel best. This diagnosis is about getting to live your life to the fullest. Our consolation prize is the gift of not taking life for granted.
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Hey all, sorry, I took a little internet break (I needed that!). Catching up here, sorry in advance for not responding to a lot of the things you've talked about (birthdays!) but I will catch up!
Kaayborg, I got my most recent treatment on the 1st, we had a disruption due to Memorial Day (I normally go on Mondays) so this is my blah couple of days this weekend after the dex wears off and I just wear out. It's kind of rainy and dreary here so that helps, a stay in and watch movies kind of day today for sure.
I hope everyone is well, welcome to the newcomers. Catch you more later when I have more time (and energy)!
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Question for Julie, but really anyone. I go through this weird mood thing 2-4 days post chemo. I am so irritable and emotional. Today I am livid and crying on the phone with Sears customer service. Yes, the situation was frustrating and ridiculous but I am crying about a lost patio chair for goodness sake! Yesterday I am so very mad about lettuce and a hair brush. I am beginning to suspect these days of crazy me may have something to with steriods I take during treatment. I think I remember that you (Julie) your dose due to not being able to sleep. By how much did you reduce the steroids? Were there any ill effects to having reduced it? Thinking about asking my doctor about this. She has offered meds to help when I have mentioned this problem in the past but I don't want to take anything every day for something that occurs only a few days after treatment. Still, I'm getting kind of tired of making it through and feel bad for those on the receiving end of my dysfunction.
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Thanks. Here's a picture of 2 of my 3 on the beach on the Isles of Scilly. Barbara
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hello ladies! I haven't checked in for a long time. I just finished a month off chemo. Saw mo and after reviewing my recent scans I'm now only on xgeva and will do scans every three months. My mets are in sternum and I've shown partial response but he said it's improved and Bone takes a long time to heal. I still have significant pain which is under control. I'm on fentanyl patch, norco, and peroxicam. The peroxicam is a NSAID and it's really helped. My body is so weak and I'm crazy tired from all those narcs. My goal is to gain muscle strength and rom and see if it'll allow me to lower mg pain meds. And improve my qol. I'm very encouraged. The longer I'm off chemo the better I feel. DH says we will just goto all my scans and attack any new spots. Love to you all!
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Hey Kaay....Oh yes the irritable and emotional days. I am post menopausal so I know mine are not 100% hormonal. I don't want to do an anti-depressant for just a day or two a month of emotion and irritability. And we started to see a trend it seemed to be the Sunday after my infusion on Friday. I contributed it to the steroids. I didn't have the SE's of nausea and I think that is what most of the steroids are for. So I did ask my ONC if we could cut the steroid in half. It was cut in half over 6 months ago. I still do not have nausea and the emotional stuff has gone down some...I still have those days that out of the blue I will be very emotional and somewhat irritable, but they are less frequent. Typically just a few hours of crying for no reason or taking my frustrations out on my DH. Talk to your ONC...if you are not having any SE's I would definitely see about having the steroid cut in half.
Hey Hope...congrats on the partial response and glad to see you back! I also have two small mets in my sternum and the others are in my lungs (also small). I am stable right now...next scan is in July. Praying you will be able to get off some of those pain meds so you do feel more like a whole you.
Julie
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Hi Texas and kaay and all others dealing with depression or just plain out right not knowing how you feel, which is how I am. I seem to be a little more down in the dumps and I feel shaky. I have been on prednisone for 10 days, could that have a bearing. Also the pain in my face dosen't help. Iwas on my week off and not looking for my appt on Thurs. My fingers and toes are numb. Anybody know of something to counteract that.
Thanks ladies for any input
Rosieo
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Hey Rosieo....sorry you are having SE's. I would definitely discuss them with your ONC. The shaky could be from prednisone but could be from something else. And the numbing of fingers and toes could be neuropathy. I don't really have much of that so don't know what to tell you to help....but I know there are some that have.
What chemo are you currently on?
Julie
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I too am going to talk to my onc about reducing my steroids because every time I have a day or two where I am just a complete jerk, frankly. And then I get sad about THAT, and, well, it's no fun. After the steroids are out of my system I am fine, and there is a very distinct pattern. I told my dh that he should just lock me up for a few days like a werewolf until it is safe to deal with me...
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This is so interesting to me that so many of us have noticed this moody thing. I'm definitely going to try the steroids reduction if I can. I forgot to ask about it today as platelets failed me again and I was sent home. I even had the perfect opportunity to ask as the pharmacist came to meet with me since my onc was not in the building today. I'm going on Monday to try again. Have scans as well.
You might enjoy knowing how my patio chair is doing. After it arrived in a garbage bag damaged (go figure) and then the replacement got sent back because half my address was wrong and then...they couldn't send another because they are out of stock, my DH drove 30 minutes to the nearest store with availability and they loaded it in the car for him. He drove it home, lifted the box and thought, "Geesh! One chair cannot be this heavy." One chair is not that heavy but 3 are. There are 3 inside. I paid for one. This is so, extremely funny to me. I don't even know what to do. Am I morally obligated to waste more of my life on the phone with them?
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Kaay, I usually do the moral thing...but when you have gone through the trouble you have to get them and they loaded it....I would KEEP THE CHAIRS!! All 3!! . But if they contact you, be honest and tell them they can come and collect the extras, that you just hadn't had time to call them....hey it was their error. I have asked this question to several here at work...and all say the same thing. Let them call you and let them come and pick them up. If they don't call.....oh well!
Julie
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Hi Ladies
Texas,. I am on Abraxane. Must go tomorrow for my 1 of 3 after having a week off. I think this pain in my face has me down. My appt at the ENT is not until June 29. I think I am going to call them and try to get in earlier. I am just plain down in the dumps and I really hate going tomorrow. But I will :-)
As far as the neuropathy, I remember reading on one of these threads that someone was taking a supplement that was helpful. If anyone is aware of this supplement, please let me know.
Rosieo
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Hey Rosieo....have you talked with your ONC about the pain in your face?? Maybe they can give you something to help! I know there are prescriptions they can give you but not sure what they are for neuropathy. Walking helps and drink plenty of water.
Julie
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Texas
Yes I mentioned the pain in my face which is also in my ear, jaw, in other words the whole one side of my face. He said to go to the ENT Dr. They made me an appt for June 29th :-(
I called the ENT myself to see if I can get in sooner. Was able to change appt to June 20 but that is still another 10 days. I am taking naproxen sodium every day but it dosen't take it totally away. And of course we all know what I am worried about. C.
Thanks
Rosieo
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Rosieo, I am so sorry you are dealing with this and have to wait so long for help and answers. Hang in there. I'll be thinking of you.
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Hi ladies
I haven't used this site for two years now as I was busy enjoying life and remission after my original diagnosis. Sadly, like all of you I now find myself stage 4 with a large axillary tumor and Mets to my lungs. Starting chemo with a taxane as it wasn't part of my original regimen and just waiting to see if I've been accepted into the Impassion130 trial to add Atezolizamub to my regime. Are there any other ladies participating in this trial at the moment?
Can quite believe I'm here again. I feel so well! I'm young, fit and healthy with small children. How can I possibly be at death's door without treatment? It beggars belief!!
How long have you ladies been stage 4, and how is your quality of life? I have absolutely no intentions of going anywhere soon and will do everything in my power to ensure I see the kids grow up. Any advice would be much appreciated... Loads of love to you all... X
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Leggy, I am so sorry. You seem to have exactly the right attitude. Keep that and keep feeling well. I've been stage 4 for almost a year now and I still have the feelings of disbelief you describe. I have scans tomorrow and was just thinking how progression would come as such a wake up call to the reality of this disease. Most every day I just go about normal life, feeling young and fit and healthy. I hope that doesn't change for you either. Hopefully, no progression found tomorrow but if so, I believe I can deal with it and find the next effective treatment. These boards are incredible support so I'm glad you sought us out. I have three girls ages 7, 10, and 12. I visited Edinburgh when I studied in N. Ireland in college. I would love to go back. Best wishes to you with the trial. Keep posting the good and the bad. We need each other!
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Hey Rosieo...hang in there!!! Praying for you to receive relief.
Leggy....welcome to our board. Wish it was under different circumstances. But like Kaay said..you do have the right attitude. I believe attitude is so much of how we feel and do. I am almost 14 months out from my stage IV diagnosis. Like you I have mets to my lungs, but also sternum and nodes. I have continued to work full time since my diagnosis last May 1st. I also continue to do everything as though nothing is going on. My DH and I have taken several trips and have several more coming up. I still feel great. I do have a few days that I am a little fatigued or even a little emotional, but that is from the chemo and steroids. I am on my second line of chemo. Taxol was first and when we saw progression switched to CMF. My last PET showed stable...next CT is in July!
My husband retires this month and his retirement vacation is Scotland. He is a golfer!! So we are just trying to figure out when that trip might happen. Thinking next May. Maybe you can give us some pointers!!
Praying for NED or Stable with your first chemo and hopefully you get into the trial.
Julie
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Been reading this board for a while but I'm joining in now- stage IV TNBC girl here with lymph node involvement and one met to the sternum. Didn't realize how many had sternum mets till I read here!
I am 3 weeks out from the end of my first chemo (just beginning this process) and tomorrow I have a breast MRI to check the progression of the primary site. Don't know if it will pick up lymph nodes or sternum. Then, on the 20th I have a CT and bone scan to check progress of met.
Happy to know you all!
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Hey Julia, we are here for you!! Glad you decided to stop in! There are so few of us on the Breastcancer.org group that are Stage IV TN.
Hoping you have good scans! I haven't ever had an MRI. Just Bone, CT and PET Scans. So I am not sure what MRI's pick up. Maybe someone else on here can answer that question.
We are sorry for the circumstances that you joined us....but we are very happy to have you!
Julie
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Hey Julia, I am also stage IV TN IBC, and I have a breast MRI on Thursday! I don't remember if they pick up the lymph nodes on that MRI, guess we'll find out! Hoping for good news for both of us.
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Hi everyone:
I have been reading ("lurking") since I found this site in April but feel I'm going to jump on in as I've had so many changes this past month, I'm swamped. My onc. just said last week that needing 3 recipes in a year moves me into a "bad" category, and clinical trials are needed to give me more time. ( talk about destroying hope!). I am now waiting to see if I can get into a clinical trial -appt is this Friday ( I think gem-carbo plus something). My onc.'s office just called to schedule an appt for next week. (I had understood I'd move to the clinical trial's doctor if accepted). Trying hard not to read that this means I don't qualify and will start standard gem-carbo.. 3 weeks now "flushing out" capecitabine that hadn't "performed as hoped", (approx. 8 weeks on it and new spine and liver mets found). So I've had no meds lately and that has been scary too.
hope people get nothing but good news,
Josie
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Hey Purple! When I got there they told me they switched me to a mammogram and ultrasound instead so I didn't have the MRI. Great news from the mammo though- tumor shrunk significantly and nothing picked up in the lymph nodes!
Hoping your MRI goes well! Sorry I don't have any info to pass along...
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Thought I'd quickly just post again as I'm still figuring out profile and signature info and can add a bit. I find myself reading everyone else's signature to compare details and see who's getting what. And to see who's doing what. I also am fighting to see my kids ages 14 and 16 grow up and will take whatever extra months each chemo can give me!
I love that there is travelling in people's futures.. I hope some of this medication can give us a break.
Josie
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Trying to add my signature details as I find I read everyone else's to see who's doing what and in what order.
It is great to read how people have travel plans and I can so much relate to feeling "how can I be sick". I also plan to fight to see my kids grow up.
It is good to be able to relate to others' issues. I was sent this link by a cancer-free friend and found it to really make me laugh. Sometimes my mountain lion feels like a monster truck!!
cancer treatment : mountain lion
Josie (having no luck with signature so will just cut and paste!)
Diagnosis 2008: Left, 8cm, Stage IIIA, Grade 2, 5/20 nodes, ER+/PR+, HER2-; Surgery masectomy, lymphectomy. chemo 2008: 6 cycles TAC. Rads: 28 treatments to chest and area; Hormone 2008-2013 Lupron / Tamoxiphen; 2013-15 Aromasin; Diagnosis 2015Jun: TNBC stage 4, mets to neck lymph nodes; 2015 Aug Met to brain; Surgery: 2015 Aug Cyberknife; Chemo: 2015Aug-2016 Jan Taxol; Diagnosis 2016Jan: regrowth in neck and new mets RHS neck; Rads: 2016Feb/Mar; Chemo: Xeloda/capecitabine Diagnosis: 2016Jun mets to spine and liver.
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Josie, in the "settings" you can enter all that info and change the privacy to "public" and it will all show up automatically - that will save you the trouble of repeatedly pasting your info on your posts
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Hey Purpleminion....how are you doing?
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Just chuckling because of the "creeping" and "lurking" comments! I did the same thing for awhile before I joined in! So a funny story, I am tolerating taxol well. I always tell everyone that I am a perfectly healthy 34 year old woman and minus the hair loss you would never know I am sick. So it has been storming here lately and my garage floor was wet and I was wearing flip flops per my usual wardrobe. I picked up my two year old and BAM!!!!! Legs straight in the air, I curled my upper body to protect my little one which wasn't hurt. So now on a heating pad nursing my sore tail bone...I have a small met in my illiac (sp) bone so small that the bone scan didn't pick it up only showed on the PET...fingers crossed my next scan end of July can detect the cancer vs. my sore tail bone!!! Atleast now I have something to complain about!! Hope all are well if you need a chuckle just think of me and my bruised ego I mean tail bone!
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Julia and Josie, I'm glad to see you posting, though lurking is always acceptable. I did the same thing. Only finally PMed someone when I had a very specific similar situation regarding reconstruction and had to get her advice. She actually called me! Then, I decided I needed to get more involved once stage IV but even then I spend a lot of time just reading up. Julie, I also had a hard time figuring out all the signature stuff. I still don't know how people add those extra bits, like on stephs "I refuse to die" but that's okay. Keep us posted on how things go.
I am preparing to flunk chemo again tomorrow. I know my platelets are gonna need more time (only 46 last week) but we're gonna give it a shot anyway. Then I'm off to vacation in the Fl gulf. They should be good after that I'd think.
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Hi everybody. Sorry I haven't been on for a while. I have been on weekly taxol for a while (18th week this week) and am nervously awaiting seeing my onc this Friday. I have tolerated it well but not sure if it's still working so feeling a bit down. Glad to read how well everybody on this thread seems to be doing. Bar
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