Triple Negative Stage IV
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I know the feeling, just got back from my third chemo treatment and for some reason I just started crying, big sobs, I haven't cried at all since finding out I have cancer and for some reason it has just hit me like a ton of bricks. I found a picture of my grandpa who I adored and that did it. I have to stop before my 11 year old gets home. I don't want him to see me crying for myself. I am trying so hard to keep it together for him. He knows I am sick and that alone is very hard for him. I just thought to myself when I looked at the picture, this what my children will do every time they look at a picture of me after I am gone and it broke my heart in two. I want to fight this all the way but it is really, really, hard, I am so tired all the time and it seems like I do laugh anymore. I feel like I am a very boring person to be around these days. I wish I could get back to myself before cancer. Okay, I am through venting, I guess I feel a little better now. Thanks for always being here for all of us! Debbie
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Oh Debbie....those emotions are normal. Just take it one day at a time and sometimes moment by moment. I still have days like that and I am 3 years in. Vent all you want it will truly help in everything!!! And we will be here for you every step of the way!!
Cathi1 -
I am here too. I was dx stage 4 TN pretty much from the start too. I finished 6 rounds of AC and just had my mastectomy last week. Still waiting on the path reports and have to have scans next week.
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Thanks, I need to hear that. Please keep posting on here to keep me up to date on how you all are doing I need to know you are there and doing okay and that we all have hope of a more time with our family's. I know I need to focuse more on that and less on the demon inside me. I also know I need to let out a lot more of my emotions that are held inside. I am so used to being the protecter and now I need help, that's hard! Huge hugs to you all, Debbie
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Debbiej- to me, dealing with this dx, is like dealing with grief. The emotions show up out of nowhere, are intense, but don't last long. It will get easier.
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posted yesterday about getting ready for chemo #9. I didn't actually get the chemo, just got the not FDA approved steroid that is supposedly not safe for IT use, solu-cortef. As the med was going in my ommaya reservoir, I could feel myself getting hot, flushed, nauseous. I vomited and dry heaved for almost an hour. I dont know what all meds they gave me for all that to go away. (reason for steroid needing to be given w chemo. Last few methotrexate doses have given me a case of chemical meningitis, so Dr figured steroid would help w inflammation)
Dr made me stay at hospital again last night just to keep an eye in me. Today, got premeds, phenerghan and toradol. Doc pushed med and the solu-cortef in reservoir over 10 minutes, very slow. No reaction til she finished, but then exact same reaction! I thought I was going to die. My heart was pounding, sweat dripping off my bald head, shaking, dry heaving for 30 min. It was awful. Gave me ativan and another dose if phenerghan. Slept for while.
Tomorrow getting lumbar puncture to see if fluid pressure in spinal cord causing compression and the intense pain in my pelvic hip areas, both sides and lower back and neck.
Anyone here familiar with leptomeningeal carcinomas (also called carcinomas meningitis) Breast cancer cells floating around in spinal fluid and thin layer of meninges under skull. Right now I'm having chemo inserted directly into am ommaya reservoir, inserted into top of my head, takes chemo directly into CSF. I've had reactions last week to the Methotrexate alone, so now trying to put steroid w it to keep inflammation down.
I feel really alone. I've not found anyone remotely similiar in dx. The LM cancer has 4-6 month survival w treatment. Of course were praying so hard for a miracle!! Anyone familiar with anything in my story.
(if you want more info about my story, my sister is writing a caring bridge. Message for my last name. Also have blog, address below)
I haven't posted here a lot before...hope someone can identify with me. this is my 3rd hospitalization since Dec 28. First time 16 days, then 4 days,now working on night #2.
dx Nov 2011 IDC stage 3- all clear after surf,chemo,rads.
dx in Dec 2012 w7 plus brain Mets, also leptomeningeal carcinomas both stage 4 and LM especially poor prognosis- praying against and trusting the Lord.
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hi, also should say original dx was Nov of 2011, age 29. My son was 11 months old.
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Hi Elisha
My current dx is nothing like yours but I wanted you to know how angry and sorry I am that you are going through this nightmare. Of course we all say on here that 'you are not alone' and we mean it, but in truth there are many times when it is only us going through the experience. No matter how similar we like to think our situations might be, no one will ever know how you or i am personally experiencing this s#%t of a disease.
I can only offer you my online words and heartfelt positive thoughts.
If you feel it helps at all to vent on here, please do so. We won't be able to change your situation, but we can listen, and maybe it will give you some extra strength to deal with what you are facing.
With much love and best wishes
Angela0 -
Oh Elisha, Im so sorry. I just wanted to tell you Im sending out big prayers for you , and big hugs to you.
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Just got back from carbo #6 - it's not working one bit...my tumor markers have gone from about 600 to over 1000 in a month. Next choice - gemzar and abraxane. I have not yet found anything that can slow down this beast, I would like some chemo sensitivity testing. Has anyone been able to get that done? And did it give you any ideas as to what might be the next chemo to try?
Now I am putting all of this out of my mind - we are leaving for Kauai tomorrow morning at 6 a.m. and will be gone for 11 days. Hoping for a "no cancer zone" for the duration of the trip!
Aloha everyone!!!
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My sister has Triple Negative. She was diagnosed in April 2011. After chemo, surgery and radiation, she thought she was done the end of Dec 2011. It came back in the form of a brain tumor in October 2012. That was removed successfully. She had gamma knife to the tumor bed. A couple of weeks ago she felt a pain in her side and thought she should get a scheduled PET scan early. Within in 2 months of a clean PET scan, she now has scattered metastases in her liver. The onc is concerned because it's obviously aggressive. He put her own Ixempra & Xeloda. I've read some good and some bad about how effective Xeloda is but not that much about Ixempra past about 2010. Anyone have luck with this drug combo or even one or the other? From what I've read, Ixempra appears to be a last ditch effort drug. I hope that's not true.
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Elisha,
Try these two sites ClinicalTrials.gov and this one has not be tested in humans yet but sounds like what we have all been waiting for, PLOS ONE: Synthetic Lethal INteractions. My husband does a lot of research on the subject and came across this. We can only hope it gets human trails very soon, sounds very promising.
I can't even begin to imagine what you and others with this are going through. I am praying for a miracle too! You hang in there! Give that baby boy a great big hug and kiss if you are able. I have read your story, you are an amazing person. You have been through more than anyone should have to bear. Please, Please, know we are all pulling for you!
Sisters forever, Debbie
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Elisha..I don't anything about what you are going thru but please know you are in my Prayers. I also read some of your blog..what a inspiration you are but I hate it so much that you are going thru all of this. Please keep posting and let us know how you are doing. Hugs!!
Sisterfour..I also don't know anything about lsempra but I am sure there are others on here that will jump in and lt you know..Prayers and Hugs for all of your family!
Luv..I hope that you have a wonderful trip. And def a "no cancer zone". Enjoy yourself a nd leave all of this sh.t behind you.
Hugs!!
Terry
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Hi, I'm new here - went for my first 3 month checkup after finishing tx for triple neg bc and they found mets in my lungs.
I start 6 rounds of Paclitaxel next Friday, weekly x 3, 1 week off for 6 rounds.
I'm still in shock and can't believe I've gone from a stage 1 DCIS to stage IV so fast - it's only last year May I was diagnosed with the bc!!
I dont know if I'm in the right place on this thread?
Help!
xxx
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Yes, this is the right thread. I am sorry. TN is too, too fast. I went from Stage 2 to 4 during treatment, less than 6 months! Hugs, Renae
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Hi Carolben, and welcome. Sorry to hear about your dx. If there is any thing good that can come out of tn its that if you find a chemo that works well, it does just that. For how long nobody knows. But Ive learned after having bc for 5 years its all just a crap shoot that we all live with day by day. Its how you make the most of it that matters. Would love to hear more about you, Have you done the stage 4 roll call yet? I love reading about everybody.
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Sorry you have to join us Carolben! I agree with marywh....there are some chemo combos that work great for us and work for a long period of time! come here often for comfort and support! This is a great place to vent and find answers!
Cathi
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Hi Carolben. Sorry you had to join us, but welcome. I too enjoy reading the stories here and have learned lots.
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Hi Carol, I too am sorry you had to find us, but we are here for support and information. These girls know there stuff and have always been a great source of info for me. I went from stage I to stage IV as well in less than a month. What probably happened with you and is what happened to me. It was there the whole time but they just saw the breast first. They found mine by doing an x-ray before surgery than finally followed up on the shadow they saw. Of course they told me at first it was probably 99% not cancerous. Well it was thus stage IV. I have had three Taxol treatments now and I have not idea if they are working. I wonder if Taxol worked for anyone? Take care and stay with us! Debbie
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Good Evening Ladies
I just found this forum and I too am TNBC Stage IV. Dx stage 2A (no lymph node involvement) and 1 mos. after my 6 months of AC+T, ct scans showed mets to liver/lungs. This was June 2012. My onc. gave me 4 months to live if we did not get the cancer stabilized. I went on Carbo/Gemzar and within 2 months NED to lungs and liver tumors shrunk 85 percent. I am now NED in both and am taking Gemzar only. Yes it is a huge terrible shock when one goes from early stage dx to mets especially in such a short time.
It seems every ache and pain I have now, I panic thinking the cancer is roaring its ugly head. My onc. tells me that symptoms does not show that quick, so relax, but it is hard to when one has to struggle with the mental game everyday.
So, hang in there and coming up with a game plan does help.
lots of cyber hugs
Snickers
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Oh wow, I feel like I've come home again! Thank you all for your welcome and sharing and empathy and love.
Thanks for the hope, Marywh and Cathi, about finding the right chemo that can work for a long time. And, yes, I'm very aware of trying to live in the present, cos I find the future too scary at the moment. And in the long run, all we (any of us) have is today - could be run over by a truck tomorrow. That's so trite, but true.
Marywh, what is the Stage 4 roll call?
Debbiej, my onc said that after 3 rounds of Paclitaxol they'll do another CT scan to see if it's working. They also told me that the mets in the lungs were probably there when I found the lump, but so microscopic that they couldn't be detected. My question is - why didn't the 1st chemo kill them? I had a lung x-ray is September when I got a cold during chemo and it was all clear.
Snickers, I feel exactly the same - every ache and pain is scary - I've been so tense these past few days that my whole chest was aching - until I eventually took a tranquiliser and it eased. I'm not symptomatic - the nodules are still small - biggest being about 7mm. I've been swimming and I went to the pool yesterday and just flew through the water! It was so easy and felt so good - it reminded me that I'm still physically pretty well, no sob, no coughing. It was so important to be reminded that I can still do everything I want to, pretty much, so now is the time to do it!
Of course, chemo may change that slightly, but I'd like to keep swimming and doing yoga, they have both been so beneficial to me.
It is insane just how fast a lot of us went from a low stage to 4 - I was so convinced we had gotten it all, it's so comforting to have this identification and support.
Love & thanks to you all
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The stage 4 roll call is another thread in the stage 4 forum. We all just kind of introduce ourselves there and tell everybody a little about ourselves. Whatever you want to really. Its for all stage 4, not just triple neg. but it really is interesting to learn more about everybody. To make you feel better about chemo, Im on abraxane, dont have any side effects, except for being bald. but this is my third time for that so Im used to it. The bad thing is how cold I stay with no hair to keep me warm. But as far as this chemo being physically demanding, its not at all. Its the best one Ive ever done.
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It's time for me to join you all since my latest biopsies have shown that I am no longer hormone positive, nor HER positive.
It kind of all makes sense now: after a complete response on Taxol last year all tumors have grown back plus more only four months later whilst I was on tamoxifen and herceptin.
On Taxol again and praying that it's working for a second time.
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Elisha82 - Please keep us posted! My heart goes out to you! I pray for you and I pray that your doctors have the wisdom to get a handle on this beast for you to give you a long and stable life with treatment. Miracles happen everyday and they can happen for you!
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Another tripple negative, well newly tripple negative. Have been dealing with this desease since 1999 and started as ER/PR + HER2- . Mets diagnosis was hormone positive and liver biopsy showed TNBC. Currently on weekly Taxol for the last 3 months. Will have PET/CT on Wednesday but am expecting progress due to elevated CA15.3. I feel I am running out of options just when desease became more aggressive, I guess this is how you start going downhill
Elisha82 and all, I so hope miracle is on the corner.
Renae64, thank you for opening this thread. It has been a life saver...0 -
No problem, I have asked for a category to be put up for us. They will review. Maybe we should all put in a request! Hugs, Renae
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Thanks for the encouragement re the treatment, Marywh, I guess losing my hair is not the worst thing - I've just grown this curly mop back! I had the last chemo in the winter and just could not stay warm - wore beanies all the time!
I will go look for the Stage 4 roll call.
Hello to bc1999 and ank066 - good luck both of you - I'm just start weekly Taxol on Friday too
Elisha82, my heart goes out to you, you're sure having a rough time - big hug your way!
I'd much rather be surfing! Or doing anything else but starting chemo again!!
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I hear ya! Just got back from my Taxol chemo. My BP went up again. It does this everytime and takes BP meds a couple days to bring it back down. It was 116/76 when I got there this morning and when I left it was 168/98. My ONC thinks it do to the steroids, who knows? Anyway, after my third treatment I started having horrible joint pain and I can't sleep anymore without a sleep med. Doc gave me Ambein and Hydrocodone for the pain. Just have to take temp in the morning to make sure no fever is present then start with the pain meds. This is my life now as so many of you, lovely, huh? My hair started to fall out all over the place so I took my son with me, he wanted to go, and got it shaved, he helped the lady do it. He was close to tears a couple times, I saw his lower lip cever, but he made though. My rock, at 11. I think it really helped to have him there. My husband went when we looked for wigs but I told him he did not have to go this time, he understood that I just wanted my son there. It was tuff I look just aweful, but I found a cute wig and it so much easier getting ready in the morning, not that I want this bald head forever, but I am trying to look at the bright side. Right?
Well, that' all I got for now, I wish Elisha would get back on and let us know how she is doing, I think about her all the time.
Hugs to you all, Debbie
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Kids are truly amazing sometimes. When my 2 year old gs first saw my wig, he looked at me with the most serious face and said, nice hair, grammy! Now hes used to me being bald, and doesnt like the wig, (I hate it too), so he decorates it with spiderman tattoos and loves every minute of it.
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That is too funny, you must have a nice head, my is really tiny and I have a long neck and I am tall as well so you can just imagine. Can't have everything, that's what the wigs are for, my son says he loves my wig and it looks real, who knows, but I love it that he said it.
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