Calling all TNs
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Thanks everyone. I am wearing clothes with BIG pockets and taking all of you with me. I don't feel so alone now.
LanaM - yes, it is impossible not to worry with BC. BTW, I am originally from Madison, WI, and my husband is from Portage. Small world!
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Cat- lifting you up in prayer. The waiting and worrying is the worst
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Cat - I'm with you too. Please keep us posted!
Hugs,
Kathy
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I had you all in my pocket. Did you hear me talking to you?
The CT scan is back and BS/Rad said it is "very concerning." Not only did they find enlarged nodes behind my sternum in the mediastinum, the nodule in my right lung, but also a smaller nodule in my left lung. The PET scan should be read tomorrow but the BS said that they are concerned enough to go ahead with a biopsy regardless of what the PET shows. I should get the date of biopsy tomorrow along with what the PET shows. I assume it will be next week sometime. I am even more fearful now and dreading the biopsy. Local anesthesia doesn't work for me and I felt I nearly died when they did the original breast biopsy. They kept shooting locals in but it felt like I had nothing and they were tearing my insides out to the point I nearly fainted. I was screaming and crying in pain. The same thing happened when BS collapsed my lung during port placement and I had to have a tube put in my lung. This has happened all my life. I tell them locals don't work but they go ahead anyway. This time, I am NOT going to let them torture me. I told the BS that he HAS to give me something besides locals. He mentioned hydrocodone but I don't think that will be enough. I think I read someplace that lung biopsies also have the chance of causing a pneumothorax. Grown. If it can happen, it will probably happen to me just like collapsed lung during port placement - BS said it was only the 2nd time it had ever happened to him. Now the wait and fear of the biopsy.....
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Sending love and light to everyone who needs it.
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Cat, you may not have known but I was (and still am!) in your pocket. I am hoping there's another reason these spots are showing up. I've been sending you moments of peace and tons of strength to help you in the coming days.
Lean on us - we're here to hold you through this...(((((hugs))))))
Lisa
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Has anyone seen or heard from kathyrnn? Time for you to check in, Kathy
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Just hopped in your left pocket - will there with you!!
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Hugs and prayers for you catwhispurrer!
May I ask if you are a fan of cats? I have too many, but I love them and they helped me get through treatment. They kept me entertained and occupied.
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Cat-can they give you dilaudid, I think it is a form of morphine. They gave me morphine once and it gave me a bad anxiety attack, but dilaudid worked well for me when they were removing my infected port, plus some tissue for a biopsy. That would be terrible to go through a biopsy and feel it! When I was first diagnosed I had a biopsy on a node behind my breastbone, they did it with an ultrasound. Happily they were able to numb me and it wasn't bad at all, so I really hope they can figure something out for you because you shouldn't have to go through that much pain. Maybe they could do a twilight sedation? I will be thinking of you and please put me in your pocket with everyone else! We will make sure the docs give you something good before the biopsy!
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Cat - I was given Valium before an injection in my neck...I have no idea if they gave me anything else but I didn't feel a thing! Otherwise, I would insist on twilight...it's your right as a patient.
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cat can they give you that twighlight sleep they talk about? they put me semi under for my port placement, I don't know what it was called but i was out for most of it but didn't have the breathing tube like when I had my ankle surgery. Take some slow deep breaths and hang on. We are here.
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Cat- hoping those spots are of no importance.
Hi Bak!!
Jianchi- haven't heard from you in a while- how are you?
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Cat, I'm so sorry you are having to face more tests and dealing with so much right now. I'm jumping in your pocket and STAYING there through it all. You are not alone and have all of us out here in internet-world to support you.
I had my first meeting with my MO on Wednesday since my surgery. My neoadjuvant therapy helped a lot. There was nothing left of the original tumor, but two nodes had residual cancer. One node had 2.5 mm and the other was a micro amount. My MO doesn't like to give adjuvant chemo unless the residual cancer load is higher (around 1 cm). In that case, she does give carboplatin post surgery. Instead she has put me on metformin for 5 years and will also check my vitamin D levels. She said my chances of survival are now at around 85-90%. There is a clinical trial that I qualify for with eribulin for people that don't initially achieve a pCR. I'm looking into it, but thinking it's unlikely I'll do it. I feel so tired at this point that the thought of more chemo feels really daunting, plus they took my port out during my surgery three weeks ago. I'm kind of thinking that I just want to get on with my life. We'll see.
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I logged in after a good number days and just finished reading all the posts. Waving a big Hi to everybody.
Simple: good to hear that Ac and Taxol killed the entire tumor. So what has your onco planned for those few mm of cells left behind,...radiations? And 90 percent sounds like a good number..I read somewhere that even if a patient achieves complete Pcr ( tumor plus lymph nodes )she is given something around 92 percent and not 100.
Cat: I am praying hard for you. I hope that all that is just false alarm and nothing comes out post the biopsy. Please keep us updated.
Inspired: thanks for the assurance . Somewhat relieved to hear that even you had similar variations like me but your dosage was not changed
Jianchi: your taxol must have been over by now. How are you feeling.
As for me, radiations are round the corner and I have not yet recovered from taxol's side effects. Consulted a neurologist yesterday and she asked me to get a Nerve Damage Test done. She doubts taxol has damaged more than it should have. I have this feeling as if somebody is continuously pricking me with small pins under my feet, on my palms and on my back, Cocker would understand it the best.
March 3rd was world TNBC day. Is this the first year that TNBC got a separate day? I think so.
Sending big hugs to u all...
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I have not read this entire article, looks like a very interesting read though. I was researching exactly how does exercise help reduce cancer risk. Here's an excerpt:
"In 1931 Dr. Warburg won his first Nobel Prize for proving cancer is caused by a lack of oxygen respiration in cells. He stated in an article titled The Prime Cause and Prevention of Cancer that "the cause of cancer is no longer a mystery, we know it occurs whenever any cell is denied 60% of its oxygen requirements."
"Cancer, above all other diseases, has countless secondary causes. But, even for cancer, there is only one prime cause. Summarized in a few words, the prime cause of cancer is the replacement of the respiration of oxygen in normal body cells by a fermentation of sugar. All normal body cells meet their energy needs by respiration of oxygen, whereas cancer cells meet their energy needs in great part by fermentation. All normal body cells are thus obligate aerobes, whereas all cancer cells are partial anaerobes."
http://www.cancerfightingstrategies.com/oxygen-and...
Other interesting random article on exercise and cancer cells http://www.menshealth.com/health/how-exercise-can...
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BanR, we will probably be starting our rads about the same time. I have my consultation with my local RO on Thursday (March 13). I'm guessing I'll be starting the following week....not looking forward to it, but know that I need to do it. I had my surgery 3 weeks ago and still feeling very tired, but everyone says rads are much easier than chemo and surgery. Sorry you are having nerve issues from the taxol. How long has it been since your last infusion?
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Jennifer Griffin is on TV right now - she looks amazing. She is a journalist and is covering the Ukraine/Russia conflict and is a stage lll TNBC survivor from 2009. Here is a short Q&A with her from Women's Health Magazine:
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Thanks everyone for being here and "with" me!
PET scan is not looking good either.
They don't have an official radiologist's report yet on my PET scan, but
"unofficially" it shows above normal activity in those spots. That is
what a PET does is show unusual activity that other scans don't show.
In my case, they were going to do a biopsy on the CT scan alone
regardless of a PET so not sure if it adds any real value. They are now saying that there are two small lesions in my left lung and one large one in my right lung, besides the enlarged nodes behind my breast bone. My biopsy should be next Tuesday or
Wednesday. Thankfully, they have agreed to do conscious sedation so I shouldn't remember anything! That has REALLY given me some peace of mind, if there can be such a thing at this point.Banr - I had bad neuropathy in my feet/hands from Taxol too. Felt like walking on rocks/glass. Took about a year to resolve to a manageable annoyance. Mostly noticeable when I first get up in the morning when hard to move my fingers but after that, I don't seem to notice so much.
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Thank you all for chiming in on the frequency of your Onc appointments. Kathy had her regular Onc appt today. Just blood work but everything was "normal". Praise God! We march forward. First scan since diagnosis is scheduled for April 21st. Hoping and praying it will be uneventful. As for today...woohoo! Love those boring Onc visits!
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Bak - thanks for the suggestions and being in my pocket. When my lung was collapsed, they used locals AND morphine to put a tube in and it felt like I had nothing! It was pure torture.
Did your nodes behind your sternum amount to anything? I have some enlarged ones in that area too.
Having all of you in my pocket must have helped! They have agreed to sedate me this time.
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On another note. Does anyone have the CA27-29 blood test? I happened to notice that it has been slowly going up even tho within normal and asked my Onc about it on Wednesday (before tests showed suspicious spots). He said it means nothing as long as it is in the normal range. Normal is under 38 for my lab. I started at 27 in 2012 and as of Aug 2013, it was up to 31. I don't have results yet from Wednesday. Hmmmmm?
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Checking in here. I am a long time lurker!
Just diagnosed at age 39 with metastatic breast cancer to axillary lymph node. I had cellulitis and infection in my under arm and left breast area late January into February. Went to see my primary and he ordered an MRI and they requested core needle biopsy of the area. Same side as the original breast cancer. Met with my new onc. Thursday 3/6/14 and she wants to start me on chemo next Thursday 3/13/14 the day before my 40th birthday. She immediately ordered CT, bones scan, port insertion and I will have an EKG. I'm going to be part of a clinical trial here in San Antonio at the Cancer Care Center for Triple Negatives. Everything is going so fast. Below is the info:ABI-007-MBC- 001 is a Phase 2/3, multicenter, open-label, randomized, study that will compare thesafety and efficacy of weekly nab-paclitaxel in combination with either gemcitabine or carboplatin to the combination of gemcitabine and carboplatin as first line therapy in female subjects with Estrogen Receptor (ER), Progesterone Receptor (PgR), and human epidermal growth factor receptor 2 (HER2) negative (triple negative) metastatic breast cancer (TNMBC). In the phase 2 portion of the study, the combinations of nab-paclitaxel plus gemcitabine and nab-paclitaxel plus carboplatin will be evaluated, and a comparator arm of gemcitabine combined with carboplatin will be used. In the phase 3 portion of the study, the selected nab-paclitaxel combination treatment will be compared to gemcitabine combined with carboplatin to evaluate progression free survival, safety and tolerability, overall survival, disease control rate and duration of response in triple negative metastatic breast cancer (TNMBC) subjects.
I would love to hear from anyone taking part in the study. I will know next week what I will be taking.
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Hi prnciss - glad you stopped lurking and decided to join in the conversation. First off, let me say I'm sorry you had a recurrence. Those of us who haven't had one dread the possibility of hearing those words.
I haven't heard of the study so I can't help you with that but I can stand with the women (and man) here to help & encourage you along the way. I hope you'll post when you can and let us know how you are!
Kick ass! Lisa
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Simple so glad that there is nothing left of the original tumour after AC and 85%-90% is a very good chance of survival. Mine is only 50%. It will take time to get your strength back but it will happen little by little. As for Rads I had no probems whatsoever. No tiredness, no blisters and only a little bit of redness. Just remember to put the cream on and rest. I never used to put the cream on before the rads, just only smothered it on after and before I went to bed because I didn't want to fry. Hoping all will be well with you and will be in your pocket.
BabR yep still got the pins and needles in the fingers and toes and funnily enough I get awful cramp sometimes in bed at night which I never got before. It makes it hard to type with it in my fingers but somehow I manage to keep doing it. Some days are worse than others and I don't seem to have the strength in that hand anymore. I am just over two years out so I am not sure if it will ever go away. Also left with a weepy eye. Chemo inverted my left tear duct and it's pressed up against the eyeball. So the natural tears that lubricate your eyes go into my nose and cause it to be blocked all the time which then goes down my throat and makes me cough. Suppose it's a small price to pay but it is irritating at times. I so hope you are one of the lucky ones with the pins and needles and it eventually goes as most do. The only treatment is to have a probe pocked in it but the thought gives me the willys plus it could easily come back so no point really because I want a permanent cure.
March 3rd. So glad TNBC is getting out to the world hopefully this may make the scientists take note and that a cure comes quicker or at least more effective treatment.
Cat still in your pocket and will stay right there with you. Can they give you Hypovel (Midazalam). They give this to patients undergoing gastroscopy or colonoscopy. You are awake all the time but you don't remember anything. Wonderful stuff.
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Prnciss74 welcome to the TNBC thread. There is nothing but helpful information from these ladies on here and although I have never heard of the trial someone might have and will come on and help you. My Doc's used to do the CA-153 but I asked not to have it anymore, anxiety got the better of me waiting for those darn results.
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Thank you everyone for the warm welcome!
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Cocker - thanks for staying with me. I am going to have Propofol which is what they use for colonoscopies here. It sounds the same as you described. It keeps you concsious but you don't remember anything. I am so relieved.
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Cat - I'll also be in your pocket and stay as long as you need me to!
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Nettie - Yes, I have a lot of cats because I have been doing cat rescue for about 16 years. I have 12 cats right now, some are available for adoption, some are special needs, and I have one that is 19 years old. They did help me get through treatment but in the last year, I have become overwhelmed with new special-needs kitties that take quite a bit of time to care for. My worst fear is that I will not be able to care for them if I have to go through treatment again.
Journey and everyone else who is in my pockets - waving hi and saying thanks. This next week is going to be tough.
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