Triple Negative Stage IV
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Great new Cat, s glad to hear that! I have to check if this trial has expanded to other sites yet. Now that I am two months into my dx, I think I am ready to get a second opinion also. I don't think I necessarily have questions now, but it would be good to have a relationship with a second doctor.
Did someone say that have researched doctors that are doing research on TN? It would be good to have that information.
I have to figure out a way to come to this site more often, do people access this site from their phones?
Adnerb, from our signature, it looks like you were on Carbo and Gemzar twice? How long were you on it the first time? I am just finishing my second cycle and all my pain is gone, thank goodness. I am tired and take a nap every day and recently started having terrible constipation, but otherwise am not finding it too bad. I am doing 3 cycles then having a PET scan, so I am curious on how long you were on and if you stopped bc of SE or because of good results.
wrsmith - I have not heard that, I was told Stage IV now. Interesting, but I also wonder the implications. Better stats, perhaps?
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Also, BTW, I was so concerned in my first post about telling my friends and here it is two months later and we still haven't told most of our friends. I drafted an e-mail today, so it will be soon, but I'm glad I waiting, I am in a much better state mentally. I also didn't know at the beginning that there could be time without active treatment, so it was good to learn that also.
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Reading - Vanderbilt created this clinical trial from doing TN research. My doc is Ingrid Mayer, who is doing TN research. I will be transferring to Emory in 3-4 weeks when they open it. They are doing training with Vanderbilt now.
Good luck on a second opinion. Check in and let us know what you find out. Glad to hear you are in a better state of mind. Time does help. I have to take stool softeners on a daily basis too!
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It's been a while since she posted, but lostinmo passed away today. She was diagnosed with triple negative breast cancer in March 2012 and with multiple mets on December 31, 2013. She will be missed. She mentioned several times how much she enjoyed playing the song game on BCO.
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Sorry to hear about lostinmo.
Cat,
The first time I stopped because the BC was in "remission".
I stopped the second time because I had progression.
Hope you all had a good weekend!
Brenda
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So saddened to hear about lostinmo. My thoughts are with her family.
I have done 10 of 15 radiation treatments to lymph nodes just above the collarbone and the sides of my neck. Its not been too bad but the sore throat is like having tonislitis. i am eating pureed everything and the drs assure me it will get better. I sure hope so.
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Well after a four month wait I was told this week that I am brca1/2 negative. So added to tn I am also ar neg so I guess that makes me sixplenegativ?. Maybe I should start a new thread?
Oh well on a happier note my sore throat is much better. Hope everyone is having a good weekend! My nexy CT scan is on tuesday anx I get the results Friday.
Kelly
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Good luck to you, Kelly. Hope your scan gives you good news!
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Well I have been feeling awful for a couple of days..headaches, dizzy, nauseous and a salty taste in mouth At first they blamed dehydration but had my CT Scan yesterday and within an hour my onc is calling. Never good news as normally you have to wait for the appointment so they can tell you in person...good or bad. Anyways it was a neck to pelvis scan and all is stable there (which is the good news) except it picked up a new mass on my cerebellum which he thinks is the real cause of my discomfort. So next is an MRI to determine more of what is going on and then likely surgery or radiation. Won't know much for a few days. He put me on steroids which will reduce the swelling and are helping with the ill effects. Its like a never ending nightmare, eh Ladies?
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Hope things settle down with the steriods over the next couple of days. It does feel like a rollercoaster, always waiting for the next kick.
Good luck
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Yes, it is never ending and a rollercoaster. I ended up in the ER a couple weeks ago with bad esophagitis - it hurt in my chest/throat and hurt to breathe. I should have an endoscopy done Thursday and my next CT scan is next week. I am scared that they might take me out of the trial so now scared to say anything about my reflux problem. I hope my GI dr has a good plan for me.
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Sorry to hear you have been suffering, please keep us updated on the ct scan and we will pray you do not get taken off your medication program; if you feel it is still working for you. Do you think your ER visit was a SE of your treatment? Pretty serious no to be able to breathe properly.
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How are you Keldel, are the steroids working on the ill effects you had been suffering with?
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Oh Cat, I do hope you can stay on your trial.
Smiley, the steriods help in that I ddon't stumbled around like a drunk. But I stil feel lousy and everything tastes like cardboard. The salty taste has lessened and I have a headache which xtra strength tylenol is helping. I have tylenol3s but they make me dizzy and constipated. Meet with the radiation oncologist on Friday to discusss MRI and treament plan. Hopefully this will put my fears at rest. Having a plan usually does.
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Hi Smiley - yes, I think the ER visit was due to increased reflux problem. I always had a hiatal hernia with reflux but definitely worse with chemo. Good news today after endoscopy is esophagus is okay. Some gastritis but overall pretty good so should be able to stay on trial.
Kendel - let us know how your appt goes tomorrow and what the plan will be. Glad you have some control over symptoms. Hang strong girl.
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Mri results today. Two masses in celleblum and a number of small lesions throughout. Going with recommended wbr, 10 treatments, hopefully starting next week. Also increasing steriods to 3 x5 mg daily.
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Keldel - Oh no! Praying the WBR erases all traces and you start feeling better. Please stay strong and check in with us when you can.
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Just got the call. Will be starting tommorow. I will update when I can.
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Thinking and hoping for the best, I also follow you on FB.
Warm thoughts at this time.
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Keidl, we look forward to hearing your updates. Please keep us posted.
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Had my first wbr treatment today. 9 more to go. Feel tired but no nausea or headaches (than before) radiated once on each side of head. No mask. Was comfortable and quick. See RO on Monday and will get more specifics on how many lesions. Using a cane on doctors reccommendation to prevent falling. He thinks I am a little wabbly and doesnt want me to break something and end up in hospital. Appetite is good and had a nice reiki treament at end of day. Hoping for a better sleep tonight now that I am feeling less anxious about the treame
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Keldel - so glad you are getting going on a plan and can relax some and have the first treatment under your belt so you know what to expect. Praying it gets easier as it starts working. Thanks for letting us know how you are doing. Sounds like you have a good attitude. Keep it up!
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Sleep well, glad the anxiety of today is over for you.
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Good going, Kelly. Rest well.
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keldel, good luck on your wbr.
I had my first scan after starting Carbo/Gemzer and things really looked good. Tumors gone from PET scan and no intensity detected. Will continue for another 3 rounds and then reassess.
Has anyone else had experience with onc taking them off Carbo or wanting to limit it? My MO initially said she would like to limit to 6 or 8 cycles, at the time I did not ask why. With the good results, she wants to stop after 6 cycles and continue on Gemzer only, though I think she will do another PET scan at the end of the 6 cycles first.
Still didn't look for second opinion doctor, at this point it will have to wait until after the holidays.
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Hi reading mama... we stopped after 6 cycles. I believe carbo is very hard on platelets and bone marroe but ask your onc for their reasons.
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Thanks cat and adnerb and smiley. Steriods are making sleep tricky but I did just get a good 6 hours. All of your support means so much to me.
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Keldel - we are here for you to vent, rant, worry, rejoice, or whatever you need. Hugs and continued prayers during your treatment.
I do not know about carbo. I am on Cisplatin which is also a platinum drug but no talks of stopping. We are already limiting it somewhat because of neuropathy problems. I am on cyccle 6 of 3 wks on 1 off.
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hi
I would ask your onc why she changed your chemo, better than trying to second guess. I had something similar happen to me and on the next visit I asked her why she advised on Navelbine(I think thats the spelling) instead of first advising taxol that had worked in the past; was it a better drug and why is it better. She shrugged her shoulders and said my hair would grow back on Navelbine but taxol it would not, I thought taxol would be a better drug and she agreed it was higher up on the chain of chemo drugs for effectiveness but hard on a woman psychologically
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Thanks, good to hear others stopped after 6 rounds also. We will definitely discuss on Dec. 30th. We will not change chemo's completely, but drop the Carbo and stay just on the Gemzer.
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