Triple Negative Stage IV
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I was so excited to hear from Donna earlier that I forgot a personal update. I went to Mayo on Monday for study tests, Tuesday got first dose of cisplatian, Wednesday got first infusion of study drug. Doing well, just cannot keep my eyes open. You know when you are fully awake but your eyes just won't open...I am sure I will be back to perky in no time. I did make onc. gut laugh when she told me my tumors were stable since my last doxil infusion 12/5 to Monday...I said "holla" (kinda my signature woo hoo) and she doubled over and laughed for a good couple of minutes. Good to see her so relaxed gives me great comfort that this will work!!!!!!
This thread has been really quiet lately so I hope everyone will start back up again. I read other ones but this is "my home." Post away ladies even if it is about dinner.
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Donna, I am so sorry to hear about the new mets and pain. You are dealing with so much. My prayers are with you. Please write when you can. So many of us here, thinking of you and sending every comfort your way. Go rads! Obliterate those brain mets! Go easy on our friend.
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Nrsteph, that is wonderful news! Back to chemo for me on Tues. It's been a nice two week break. Now back to it.
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nrsteph. . Thats great news!! Cisplatine seems to be very efficient for tnbc patient.. l am happy to hear the good news!! Let's keep fingers crossed for this drug to do what it is suppose to do.. and you get to NED.
Kaay.. I hope that you enjoyed your break from chemo and it gave you enough to gather strength to fight again and get and maintain NED forever.
I am back to my routine. Back to my job and duties as a mum!! Very hectic.. I want to find the time to come here more often. Can't promise but I will try my best.
Hugs and strengths to us all!
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Donna, glad your doctors have a plan to deal with these mets. Best to you! Steph, glad you're stable! That's a good place to be.
I have been in limbo the past few weeks. Insurance denied my PET/CT, so my doctor needed to talk with them and they had a very hard time getting through, they'd be on hold forever, get cut off, etc. Finally yesterday on my machine was a message that they got the CT approved but PET was denied. I am pretty pissed about this. Hoping that the CT will be sufficient to show what's going on. I need to get moving with some kind of treatment soon.
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Hi Minxie
Sorry to hear that the insurance company is causing you to be upset and worried.. but glad that your doc was able to push for a CT scan.. it's a start and I am sure if after that your doc feels this wasn't sufficient he could push for PET scan after all .. one fight at a time I guess.. if you can't have it all now.. well you are gonna have it but one by one. So all in all it will end up being the same (hopefully). Having said that I am not sure I understand your situation well.. what had been going on. . Please fill us in
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Hello Ladies, my name is Selena, I'm writing on behalf of my Sister Tracey, she transitioned this Life on Saturday 21, 2017. We new things weren't looking good, but she never gave up her fight and to read how a lot of you Women have overcame obstacles gave her a lot of hope. I wish you all well. My sister leaves behind 2 Adult Sons, 5 Grandkids, Nephews, Brother in law and me. Over 200 people, paid there respect, she was Loved. I will continue to keep in touch. I found out that I have the ATM Gene, so updates will be helpful
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I'm so sorry for your loss, Selena.
Lyn
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Selena, I am so sorry for your loss. Tracey was a beautiful person who offered many kind words to others. I always admired her positive attitude even as she was experiencing discomfort. We will miss her.
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Selena - I'm so sorry to hear about Tracey. She was always so positive even when she described her hard situation. She reminded me of the problem that I'm having here. No one will let me give up hope. Hearing from someone like her always gave us strength. She really touched us all.
Really so sorry for your loss
Donna
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HI Selena. . So sorry for your loss.. Tracey was such a fighter lifting our spirit and giving us courage to carry on! This is a sad news indeed! She will really be missed..
Sorry for my ignorance .. What is the ATM gene?
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There - I added my picture. That's me now. It's not my real hair (I've lost some but not all) - I've always worn that wig for religious reasons (that's why my cancer stayed secret for so long).
Today was my second of 5 radiation treatments for my brain mets. Brain is much easier radiation than breast was (don't have to get undressed at all). They made me a tight plastic mask that goes over my face (lots of holes - not claustrophobic at all. You just feel safe and tucked in. Takes just 5 minutes.
Now the bad parts... the radiologist is the type of woman who makes everything seem tragic so I'm not sure what to think. she says I'll feel worse before better, nausea, tired... (so far OK.) But my husband asked her about my MS lesions in my brain and she said she didn't know. She said I have so many tumors in my brain that they're not shooting them individually but doing overall. Sounds odd? No? I'm afraid of heavier damage. Like I won't be able to speak.
So now I'm in a wheelchair. If someone pushes me to the bathroom door I can take care of myself (My son hung old lady bar on the wall in the bathroom so I can get up by myself).
May I write here how blessed I am with my family? My husband hovers over me while keeping up our sense of humor. My 5 kids (15-28) are home as much as possible and always helpful (Did I mention that my cleaning lady just needed emergency double stomach surgery?)
Now about my medical plans. I don't feel lke my oncologist is so positive (especially now that it's spread to my brain), but my nephew pushed me to send a sample to the Foudation..There was one specific test they wanted but I'm doing them all.
We spoke with a Doctor from John Hopkins who was visiting here in Israel - He had an idea and plans to speak to my oncologist (I have no info - My husband speaks with everyone. He's the one trying so hard.(He speaks to everyone and finds connections). I have to stay alive for him.
We pray a lot here (I live in the Holy Land - that's what we do here).
I wake up in the morning feeling like it's all over. But I'm sitting here with my kids joking around and I can't believe that I'm near the end (none of them let me say it - I've told them but they won't accept it- So why should I?).i'm so up and down.
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Donna - Good luck with the radiation treatments. Hopefully the radiologist is wrong and you won't be feeling much worse. Hoping the Johns Hopkins doctor has good news!
4everstrong, here's my situation. In the late spring a mass was found in my lung. They removed the lung lobe and it was MBC, 7.5 years after my original stage II diagnosis. I had clear PET scans for awhile and then October's showed an enlarged lymph node between my lungs. My oncologist consulted with several others and they said my best bet was to enter the CDX-011 trial for metastatic TNBC. However, my tumor has to be larger to qualify for the study. In December I started having hip pain. Saw my onc in early January and he ordered the PET/CT. Which insurance denied - at least the PET part. So we'll see if just the CT is sufficient, and if it shows what's up with my hip and that enlarged lymph node. I'd hate for the tumor to be growing, but I want to start some kind of treatment ASAP.
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Selena: I appreciated Tracey's voice so much. I hope you know how she has helped support me alongside this group. I am so sorry for your loss.
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Donna so glad to read about your family involvement! Hang in there
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Donna. i love the picture you shared with us here... you look ever so nice there.. I am sure you even look nicer in the real life... you can't see the years on your face! Keep going with trying to speak to doctors and get other treatments on the line.. as for the radiotherapy, I always find radiation easy in terms of the time you spend there .. but got to me to be little tiring to do it everyday.. but again we adjust don't we! We adjust to everything in life
Minxie. Oh right I remember when you said about this trial before and that the tumour was too small.. are there others you could try to get into..
http://www.immunomedics.com/immu132.shtml
https://tnbcfoundation.org/metastatic_trial_search...
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hi all and thanks for everyone posting- I miss reading about you! Donna I like you am doing rads 5/10 so far all to neck and behind my jaw. I suspect they say worse before better : sunburn effect and swelling and for me with mouth sores yeast imbalances then 2-3 weeks post chemo all improves!
Now working with symptom mgmnt team as well as the active care group. Had talk with them as cancer location - airway swallowing lungs and voice are so vulnerable. If things fail it will be aggressively quick.. so DNR but still continue - hopefully but not likely years with chemo! Hope all are doing well!
Take care, J
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Donna, yay for the pic! You look great. I am so glad to hear you are being so well supported by your family. Praying radiation treats you well and that the John Hopkins onc's plan gives comfort and longevity.
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Kaay.. good luck on chemo today.. will be in your pocket
Minxie when is your CT scan for.. how are you spending your days?
Donna when will you be done with the radiation?
Josie keep us informed on how you are and feel
Nrsteph how have you been and what are you up to?
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tomorrow is my last radiation (only 5 treatements.SundayI'm going to onc and then I hope back to xyleda (which I thought was working) and then the maze of trials. I made sure that all my kid (15-28)understand that not everyone is cured but we're relying on medical miracles and praying hard for one.
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HI josie, I just wanted you to know that you are in my thoughts and prayers...keep shining bright!
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Hey Ladies...just checking in. Had my third round of Gem/Carbo yesterday. My ONC has decided to put me on a once every 3 weeks routine because of blood counts being low when we try Week 1 and Week 2 routine. Still feeling great! heading to Vegas this weekend to celebrate my daughter completing her Masters Degree in Nursing Administration.So proud! I will have a CT scan in 2-3 weeks to see how Gem/Carbo is working. Hoping for another year of stable as I had with CMF.
Hugs and prayers for you all!
Julie
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thx for the update Julie. Ct for me and thenmay switch to gem carbo too after just 8 rounds cmf...enjoy your celebration!!!
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HI all I was searching the net and came across this. https://www.cancer.gov/news-events/cancer-currents...
Worth asking our MO about it. I will keep you in the loop of what I hear.
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Donnadd - perfect outlook to give your kids and everyone - applies so broadly too ;0)
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Julie, so great to hear from you. Congrats to your daughter and best wishes for great scans!
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I finally have mt CT scheduled! It's tomorrow. I get the results next Thursday. 4EverStrong, I work full time and have two boys age 11 and 16. They keep me busy!
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Hello everyone,
Just today, my friend (40 years of friendship since high school) told me she was "upgraded" to stage IV and being treated with IXEMPRA (ixabepilone). They did not find mets but her cancer spread from the breast to nearby tissue. She had 18 rounds of Taxol, but Taxol has failed, as dr's told her.
With all my best wishes and prayers to all of you fighting TNBC out there!
--sfgirl
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Hello Friends this is Tracey Sister Selena, Thanks you everyone for your kind words. This site gave her Hope and extensive knowledge about things to expect and questions to ask her Doctor. 4everStrong, the ATM Gene is a Gene they check for when you get your DNA tested. The Doctors not sure if it means I would get Cancer, however they said, it's a Gene of unknown significance. More information and studies are needed for a definitive answer. If I can help anyone, please let me know. I live in Michigan, I would like to support however, it's needed
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Hi.. this thread is all gone quiet. How are u Sisters!!!?
Any New receipe for staying NED calm and under control?
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