Triple Negative Stage IV
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Anna,
Awesome, that's exactly what I did on Friday(medi4837 and another drug and lots of being watched all day)! So far I have had very few side effects. Tired and a little stomach upset is about it. Hope it's good to you also!!!
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Anna,
Awesome! I spent Friday doing the same thing (getting MEDI4837 and another trial drug and being watched all day)!
So far very few side effects, tired, a little stomach upset but nothing too awful. I hope it is as easy for you and hope it WORKS!!!!
(I accidentally posted twice so that is what the deleted one above is about)
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Good news from my ONC yesterday. PET scan show largest met (1.5) as stable and all others have shrunk. A couple are gone. SUV for all has gone down in half. So good news!!!
I will continue on my current chemo (CMF). Prayers answered!
Lauralind...so glad you are feeling better! Hang in there girl!!!
Anna...glad no SE' yet! You are helping yourself and so many others behind you with the research that is done. I thank you for that! My next step is a trial if the CMF stops working.
Julie
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Julie,
So happy to hear of your good scan results. Hope you can be stable or improving for many scans to come!
Isn't it so weird how even though we're all TNBC our cancers are all behaving differently? CMF is similar to Xeloda, which didn't work for me. But you're doing great on it!
Just hoping that in light of all the research is going on, one of these days, women will be diagnosed, they'll run a bunch of genetic tests and know EXACTLY what is going to work best. I know they're working in that direction, but there's still such a long way to go.
Anna
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Yay, Julie! I am so glad to hear your great news! Scans are done here but probably no results until chemo on Tues. I know my onc would text results sooner if I wanted. She did this once when I was worried. I debate with myself on requesting that she do this. Good news would be fine that route but bad...I'd prefer having my questions answered face to face. So, I wait and feel generally okay about waiting. Pretty much I'm always waiting to know what's going on in my dear liver so what's the diff.
Anna, I had not considered all the extra time and monitoring with a trial. It is very interesting to here your experiences. Keep sharing as so many of us hope to follow you when the time is right. Glad you are doing well!
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Hi everyone. I have had an awful week since my first weekly taxol on Monday. Apart from the fatigue I have been so sick and haven't been able to eat. Even now all these days later when I went to the hospital for a blood test. I guess that could be dehydration.
Barbar
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Barbar,
So sorry you are having such a hard time with the taxol. Nausea? Is there something you can take to make it better? Hope you can find something that you can eat to keep your strength up. Hugs!
Kaayborg,
Regarding trials, The first time is the worst. Next time will be another marathon, but eventually all the extra tests should subside. The researchers take so many blood samples to see how quickly the drugs are being absorbed into my system. Talked to oncologist at end of day and to my relief, during the time I was waiting to start the trial there was only minimal change to suspicious areas in my lungs and the lesions in my chest wall. I have access to the radiologist reports but they really need to be translated into something a layman can understand. So yes, better to wait for MO to explain.
Anna
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Hey Barbar...so sorry to hear about the nausea. I was on weekly Taxol for 6 months before I was moved to CMF. I take Ginger Root and drink a ton of water (80 oz) every day. I was lucky enough not to have nausea so I am not sure if that helped or not. But it might be worth a try. Hoping you get relief!!!
Yes Anna....keep us all posted on the process and how you are doing!
Thank you all for the congrats on my good news with the PET scan results. I received more good news Friday with my lab results....my CA 27-29 tumor markers have dropped again from 17.6 to 15.5. They continue to drop! Hoping this CMF Chemo keeps working!!!!
Julie
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Texas
What is CMF? How often doyou take it and how are the side effects.
You say you drink 80 ounces of water a day???????????
HOW!!! LOL
Rosieo
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Hey Rosieo, CMF stands for Cyclophosphamide Methotrexate Fluorouracil. It is actually an "oldie" that is given for Early Stage BC. It is suppose to be good with Triple Negative BC. The Fluorouracil is basically the same as Xeloda. I have had 5 treatments (1 every 3 weeks). The only SE so far has been this past week when my WBC was very low...which is a very first for me, it has been just below normal before but not this low in all the time I have taken Chemo. My ONC let me go ahead and do my treatment last Friday she backed off of the Methotrexate a little....but other than that nothing. I still felt great!
Yep...I do drink around 80 to 100 ounces of water a day, if not more. I drive 1 hour each way to work and I drink a 20 oz. bottle of water each way (and yes I have to use the bathroom as soon as I arrive at my destination
). Then at work I usually drink another 30 - 40 oz and another 20 oz bottle at home. I honestly think this helps me with my chemo and why I don't experience the SE's that so many do. I have (knock on wood) never had the typical SE's except hair loss.Julie
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Hi everyone. Pleased to say I felt better over the weekend and had my next treatment today. I have been given some stronger anti sickness tablets to take so hopefully it will be an easier week. I hope so as its kids half term this week here. Thought I would put in a photo of the younger 2 of my 3.Barbara
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Barbara, Love the smiles, they look so happy! Beautiful children.
hugs Rose
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glad you're feeling better Barbara. Love the picture
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Hey Barbara....looks like a fun week! They look like they will keep you busy! Cute as can be!
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Hello, I am currently taking Keytruda, how long have you been on it, and do you think its working for you. Thanks bail
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Barb Certainly glad you are feeling better. Your girls are beautiful
Texas That is certainly super that you never had any other side effects. I try to drink a lot of water but I know I couldn't touch 80 OZ. Of course stuck in your car for an hour does help LOL :-) I see that you only became Stage 4 around the same time I did. Where is your metasis? I have a tumor in my lung and my lymph nodes. You are an inspiration, Texas, to be able to do this and travel an hour to work everyday. You are amazing.
Thanks
Rosieo
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Hey Rosieo...you are sweet to say I am amazing! I think that I just don't know how to feel bad. I not only drive an hour each way but I also work a 10 hour day. Luckily I get to work only 4 of those 10 hour days so that give me a nice long weekend to enjoy.
My largest met is 1.5 cm in my lower right lung, this one has never changed from the first day I was diagnosed as stage IV. I have a .8 mm met on my sternum and a .5 mm in my hiler node. Did have a met in my mediastinal gland but that was gone on last PET. There were a few other small (less than .7 mm) mets in my left lung but they seem to be gone also.
So what chemo are you on right now?
Julie
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Bail,
I'm not on Keytruda, but a couple of us are on MEDI4736 which is also type of immunotherapy given by infusion. I am also taking ibrutinib as a daily pill. Too early to say how well it's working. Side effects are manageable, but I got a splitting headache and some nausea yesterday which are possible SE of ibrutinib. I was hoping for a Keytruda trial, but there doesn't seem to be one in my location. I was actually told that some of my symptoms (I have IBC and tumors in my lymph vessels make my chest ache) might get worse as my immune system fights against the cancer. How are you doing?
Julia,
You ARE amazing to drive an hour to work. I'm still soldiering on but I take a half hour train ride with 5 minute walks to/from the station. Contemplating trying to do a shorter work week since I just go home and collapse.
Anna
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Im doing okay, I have liver mets and spots on the bone too. Ive only had two treatments, because I missed one due to my wbc being very low. I feel a little pain in my liver and at times my bones ache. But still staying positive and hope for the best.!!
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Barbar - I love seeing the pictures of your girls. You've inspired me to figure out how to add pictures. Oh, look! That wasn't so hard (I'm not the techy-est gal so sometimes I just don't try).
Scans were great! A 20% reduction in size of measured tumors since last scan. Down to 1.5 x 2.7 cm and 3.1 x 5.1 cm. Were 7.5 x 10 and 6 x 10 initially so this is very good. Platelets not so great. Expecting to flunk chemo next week and have more dose reductions or treatment spacings. Hoping efficacy won't be compromised. I want to get every last spec of goodness out of gem/carbo before moving on.
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Kaayborg...I love the picture!
Congrats on the Scan!!! That is awesome news! Hoping you don't flunk chemo next week. I know what you mean...my WBC were low last week and I was happy my ONC did not tell me I couldn't get my chemo!
Ladies...keep the pictures coming!
Julie
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Hi everyone,
this is my first post and I may be in wrong forum so pardon if I am...
I'm Laura...Hello!
My dear friend was dx about a month ago now with bc triple negative, and last week's CT scan showed it has now gone into her lungs, stage IV. She is my daughter's boyfriend's mother. She is a wonderful woman, 53, and her own mother had bc and died of it in her late 50's. I've been reading many threads on this wonderful site and learning a lot, helping and talking to her about her options, etc. Originally she was trying the homeopathic route and it was making me nervous but now that she's at this stage, she's doing chemo starting the process this week. She has nine grown children...14 grandchildren...and she's quite healthy otherwise.
I don't know what type of chemo she'll be undergoing but I've learned this type of bc is difficult to treat. They told her chemo might work yet it might not. They're saying to her that if the tumors do shrink, they will do a lumpectomy then radiation.
I'm not sure what my question is...I guess i'm afraid for her and I want to do everything and anything I can to help her. I've offered to cook, clean, run errands, etc but she hasn't taken me up on my offers yet anyway. We are like kindred spirits...the more we learned about each other, the more we had in common. We text daily, and we know we are there for each other 24/7.
I appreciate so much all the conversations here and am taking notes on what to expect, but if there's any advice on what I as a friend can do for her, I'd really appreciate it. Since she still does have 3 children and an elderly father living with them at home, she has her hands full. I know she worries more about them than about herself.
I am in admiration of all of you dear ladies and wish you nothing but the best in your journey to wellness...
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Hello, Laura! I am sorry to hear about your friend's dx, but I am so glad that she has you. The fact that you are here and reading through all our posts in effort to understand and to help her, that is very touching. Having the support of friends and family has been the number one blessing throughout this process for me. I have been sent/given flowers, gift cards, meals, books, movies, journals, blankets, lotions, jewelry, lip balm, candy... just about everything you could think of. A couple of people just never let up with the little surprises to brighten my life. It does not annoy me, nor does it matter much to me what the gift...it's the thought and care I know is behind it, the fact I cannot feel alone with all these caring people surrounding me. My advice would be to go ahead and truck a freezable meal to her without her permission and suggest she save it for when she needs it. Then, restock after it's been eaten. Also, send a card every week or so (snail mail is so special these days). If possible, invite her for regular walks. There two things I believe in for fighting fatigue and feeling well...walking and drinking water (though I cannot top your consumption, Texasrose). Even if the exercise doesn't actually help, the conversation is certainly therapeutic. Ask questions and listen. I appreciate questions from close friends. Talking about it with a few special people helps a lot.
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Hi Laura, your friend is very lucky to have you! Kay pretty much said it! Just being a good friend and listening, being there when they need you is probably the most important thing! She may or may not want to talk about it...a lot of the talking will be her trying to sort through everything!
It definitely helps to have others that are in similar situations and that is where we come in. We are not Doctors but we can definitely give you life stories. Yes Triple Negative is harder to fight....but it can be treated. Stage IV is incurable but it is most definitely livable! As seen by all of us on this discussion board. There are so many treatment options available now compared to just a few years ago. My BC also spread to my lungs....along with sternum and a couple of lymph nodes.
So! like I said Stage IV is livable and I am living life.....my DH and I are flying to Vegas tomorrow morning with 3 other couples. Staying for 3 nights, I have never been there so am very excited! They tell me we are going to zip line down the strip....not sure about that one. Hope my wig doesn't come flying off
!!((hugs)) to all of you ladies!!!
Julie
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Kaayborg,
This has been a great week for scan news. And thanks for the picture too. Makes the discussion board more fun. I don't have kids -- only two cats and they hate each other so I can't get a picture of them together unless they're fighting.
Laurel,
Julie and Kaayborg gave you great responses. Food is great (though I must admit one of my friends had no idea of what I liked -- the other asked me) for those days when you just don't feel like cooking and there are many. But what I think I appreciated most was cards and emails from friends just telling me that they were thinking of me. It can be a very lonely time. Hope that your friend has a relatively easy time with treatment and how lucky she is to have you as a friend.
Anna
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Thank you Julie, Kay and Anna! It's just what I needed to know and all you said was very helpful. I've taken notes and I also went on the chemo thread and wrote down items for a chemo bag that I'll put together for her.
Sometimes I don't know if I bring it up too often or ask too many questions. I've asked her that before and she says no,it doesn't bother her, but now that she's getting the treatments started, I want to be cautious.
Julie, you give me much hope! When I heard she had stage 4 I was so worried. I read so many things that just scared me. But here, it seemed brighter and that there was more hope and you've shed a lot of light so thank you. And Vegas!! Wow, you'll have fun. I've never been and I'm only about three hours away but it's a happening town so enjoy. Lol! I guess if your wig does fly off you'll give new meaning to "what happens in Vegas, stays in Vegas!" 😋
Thanks again for all your input...and bless you
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Well ladies we had a great time in Vegas! Boy am I tired! Saw three shows while we were there. We walked 10 miles on Saturday checking out the other casinos. Did not get to zip line (24 hour reservation required), which was a bumer, but we had an amazing time. We did get to eat at Gordan Ramsey's restaurant which was really nice but alot of $$$$.
Wow Blessedwith6. You live so close and never been. You have to go someday. But wear comfortable shoes and be prepared to get little sleep.
Attached is a picture of my DH and I outside Caesar's Palace. And our dear friends at Gordan Ramsey's restaurant.
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Looks like you had a wonderful time! And you look great too
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Texasrose, so glad you had fun! You deserve it and love your pictures. Ten miles of walking - that is awesome
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