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    Posted: Sep 15 2019 at 7:27am
Welcome to the forum Suzanne. So sorry you have had to find it.
I would say that financially if you don't need to work, this is a good time to stop. Im sorry to be intrusive, but you have paid your dues to society. Both of my parents were teachers and if I had my way, you would all be set up financially well before you turned 65.
 Anyway - sorry to go on a tangent. 
Your nurse is right. Its going to be tough. But its doable. Everyone will tell you it is going to be grotty, there will be hard times, and there will be tears. But its doable. It can be cured. You have every reason to hope. 
 None of this is your fault. Its just something that has happened to you.
 Get a second opinion. Take a trusted person with you to the interviews. Ask for support. Ask for professional help from a psychologist. 
 Ask your friends and family for practical help. They love you and will do what you ask. 
Above all else, dont lose hope. You can get through this. This forum has some excellent advice and some really knowledgeable people. 
Stay strong. Love, flowers, and support to you from Australia, sister.


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Hello everyone, my name is Susanne, age 70.  

I was recently diagnosed with TNBC with a grade 3 tumor, a week ago. Iím slowly coming to grasps with this diagnosis.  The nurse said grade 3 was an aggressive tumor/ Invasive BC. 

Never felt a lump...went in for my yearly mammogram,  they found a small 8 mm mass, sent for ultrasound, at the ultrasound the radiologist came in to talk to me...tells me he wants me to have a biopsy to check the mass so in two days Iím back for a core needle biopsy with an appointment to speak with a nurse in two day.  Somehow I knew there had to be a problem.  Had an IV contrast MRI yesterday and now in a few days I meet with my Team of doctors to learn my treatment.  

Not knowing has made me rather anxious recently.  Itís been hard sleeping since my mind doesnít shut off...probably not enough sleep. Wonder if thatís normal? Actually, since July Iíve been more tired than normal so is it possible the cancer is tiring out? 

Sadly, the nurse said the next three to six months would be rough and she stated I needed to stop working. Iím a retired Elementary School Principal who now works part time at a local University as an Adjunct Faculty/ Supervisor for Student Teachers. They did not want me going into elementary schools. Boy, was that hard to take...

What recommendations do any of you have as I begin this battle? How does your life change in regards to doing your daily activities?Do you always take another person with you for treatments or doctor visits. Should I keep a journal through this journey? How do you tell grandkids.  Any help will be appreciated. 
Susanne

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2019 at 9:46am
Thank you so much for these recipes Kati!! They look great and I canít wait to make some of them!! 
I go in for my 4th (and final!) round of AC today.  To say I am nervous would be an understatement. But I am also ready to get this show on the road! I have had so many terrible side effects from this chemo, and I know I am looking at at least a week to a week and a half of pain and suffering, but I canít wait to be done with it. Then onto the 12 weeks of taxol. I am praying that wonít be as hard on me. 🙏🏻

Did any of you ever have pain around your port area? I still feel a lot of discomfort from the original port site (where there is no port, just a lot of scar tissue I guess); but in the area where I have the actual port it hurts. I feel like all I keep hearing from other people is that they barely notice itís there and they donít feel it at all. Mine actually hurts. And when I have heartburn (which is frequently) it hurts even worse. Anyone know why this may be?  

How are you all doing/feeling? 
I hope you all have a wonderful day:)

Laura 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2019 at 7:18pm
SO happy to hear it was nothing!!! Those little victories make all the difference sometimes. 

From what I have been told and what I have read tofu is OK, especially since our cancer is not related to hormones. You can read more about it here: https://www.mdanderson.org/publications/focused-on-health/soy-cancer.h18-1589046.html

That being said, everything in moderation! I wouldn't go eat a whole block of tofu and drink a bunch of soy milk all in one day. You can always substitute with organic, free range chicken too. In either case, just make sure your plate is 50% veggies!  If you decide to try tofu, make sure to get organic extra firm. The extra firm holds up better in stirfry and has a much better texture. I know tofu can be hard for people so here are a few more w/o. 






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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Sep 06 2019 at 1:08pm
Hello ladies! 
So, I went for the ultrasound yesterday. I could barely breathe the entire time I was waiting to be seen (which was about 2 hours!) the ultrasound tech definitely felt what I was talking about, and really took her time doing a thorough exam. She sent me back to the waiting room and said the doctor would talk to me in about ten minutes. That made me even more nervous, but as soon as I saw him he said everything looked ok. Ahhh, I could breathe. Thank God!! 🙏🏻🙏🏻🙏🏻 We were in a room where my scans were up on the computer screen and he showed me and explained everything to me. He said there were three ďsuspicious lumpsĒ. Two of them were definitely cysts because they show up black on the ultrasound (which means theyíre filled with fluid). The third one is a mass, but he said itís been there since 2011. It hasnít changed in size or shape at all and was needle biopsied years ago. Itís calked a fibroadenoma. Jeez, I forgot that was even there! So good news for a change yesterday. Iíll take every bit I can get!! I hope you are all getting good news too. I hope youíre all feeling well and coping well with all of the stressors of life. I think of you all so often and pray for all of you. I am so fortunate to have found this forum and to have the wonderful support of literal strangers who have become friends. Thank you!!
Kati, I appreciate all the recipes! Iím definitely going to try some of them! Not too sure about the tofu. Iíve never tried it, so Iím not sure about the texture. Also I thought tofu is soy. Are we supposed to stay away from soy? 🤷🏻‍♀️
I hope whatever ďtreatment circusĒ that was going on with you has been resolved. 🙏🏻 Stay strong. ❌⭕️
😘
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kati1983 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2019 at 12:26pm
Dear Laura,

Sorry it has taken me a minute to respond. I am dealing with my own treatment circus. 

I second on getting the ultrasound! It will make you feel better. I also had 12 weekly of Taxol and had little to no side effects. 

Sorry you have the bad taste in your mouth :/ Does drinking water help? I drank a ton of water with lemon when I was on A/C. I used a lemon essential oil and it helped a lot.

Ok, food! Let me see if I can explain this better. The food thing is hard because there is a lot of conflicting reports, but below is what works for me and is based off of lots of research and info from my integrative onco and acupuncturists. They are actually running a study right now to see how methionine restriction affects TNBC patients. 

It is hard for people to go full vegetarian right away if it is not something they are used to. What I did was slowly over time reduce the amount of meat I eat; at the beginning only a few times a week, now only a few times a month. In order to get the 46g of protein suggested each day I do a green smoothie in the morning with Hemp protein powder, always include a variety of nuts and seeds everyday as snacks or toppings and include grains and legumes like quinoa, millet, oatmeal, beans, organic tofu. 

When I do eat meat/seafood, I eat a very small portion, about 3 oz which is about 1/3 cup. For quick reference it's about the amount that will fit in the palm of your hand. 

SO to answer your questions, there is no clear answer Yes/No. My way for dealing with it has been to just limit the amount I eat and to 100% make sure when I do eat meat/fish, I know it is wild/organic/pasture raised/no antibiotic/etc. But you need to make sure you are eating other things to get protein so that you are not starving and unhappy. For reference, here is a PDF with general proteins of foods: https://www.todaysdietitian.com/pdf/webinars/ProteinContentofFoods.pdf

Here are a few recipes that I love because they are quick, easy and allow for meat to be included. Let me know if you have any other questions!!


I used powdered ginger and wasabi paste. I also will add in any veggies I have on hand; celery, carrots, etc. 

top w/ nuts, chia seeds, berries

I do half the cheese

That all being said, when you are on chemo sometimes you just need to eat what taste good to you. Don't be too hard on yourself!! You're body can't fight if it isn't fed. My husband used to set a timer for me to remind me to eat because I wasn't hungry most of the time, but I always felt 1,000 better after I did, especially when veggies and plants were involved.

xoxo
kati

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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2019 at 6:49am
You aren't going crazy at all. Its normal for you to be hyper-vigilant. If the oncologist feels its nothing to worry about, but wanted you to get an ultrasound anyway for your own peace of mind, take him up on it! Im sure it will be nothing... but you will sleep easier!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2019 at 1:21pm
One more thing... I know this may sound crazy, but is there any chance a new tumor could be growing in my boob during the chemo? My right breast, the one that had the tumor, feels like it has a big lump in it. (But not at the lumpectomy site, or even near it... so not scar tissue). I asked my oncologist to feel it on Monday. He said itís definitely ďlumpyĒ and feels different from the left boob, but itís just cuz I have dense breast tissue. He said dense breast tissue feels lumpy  He Offered to order an ultrasound to put my worries aside, but he said it would be for me, not for him. He is not concerned at all. Am I going crazy? I keep telling myself how could cancer grow while you are getting chemotherapy, but what do I know!?! I feel hypersensitive to so many things now. I constantly feel like my heart is racing and my port wire is all messed up. Ugh! I just want to feel ďnormalĒ again. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2019 at 12:38pm
Hi everyone... I hope youíre all doing well.  I havenít been on the forum in a while as I have just been feeling too sick/weak from the third AC treatment. One more to go and Iíll be done with that part of chemo, thank God! 🙏🏻 My oncologist has decided that I will do the 12 weekly sessions of taxol instead of the 4 dose dense treatments. He said there is absolutely no difference in survival rates between the two, and I wonít need the neulasta with the weekly sessions. 
Kati, thank you for the food recommendations!! I would definitely love it if you could share some recipes. Iím a little confused about the protein intake though  Are you saying itís not good to eat fish or chicken because they have a lot of methionine?? But then you listed salmon as having 24g. Is that 24 grams of protein? And is salmon a fish that is ok to eat as long as it is wild? Any advice is greatly appreciated! 
And if anyone has any suggestions for the terrible taste the AC causes that would be great too. It tastes like I have chopped up aspirin and rotten batteries in my mouth. All the time! 🤮 
Laura 
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Hi Laura,

I came across your post and wanted to chime in about the food questions. I was able to see an integrative oncologist who provided me with a lot of information, especially diet. His suggestion was to follow the Andrew Weil inflammatory food pyramid, which really focuses more on what you should eat than what you shouldn't. It emphasizes eating the "color of the rainbow" and small protein portions. I do not consume alcohol anymore or sugar. I also try and stay away from flours which turn into glucose. I feel like sticking mostly to this diet helped me immensely with energy. The entire time I was going through chemo people didn't believe it, except for the loss of my hair, because I looked so healthy. 


I have yet to find a TNBC resource for food, but he also provided me with several studies about which foods help fight cancer cells and support the immune system. At the top of those studies where the below foods. Now, in addition to a green smoothie/juice, I try and eat most of these foods everyday in a large salad, except for the garlic which I just include in everything I can and occasionally will chop up and swallow. 

Garlic 
Leeks
Onions (green, white, yellow, red)
Broccoli & Broccoli Sprouts 
Red Cabbage (or green)
Cauliflower 
Kale
Radish
Spinach 
Beets
Carrotts
Asparagus 
Oregano 
Brussel Sprouts

Luteolin found in broccoli, parsley, celery and avocados has been shown to help as well. "Luteolin's anticancer property is associated with the induction of apoptosis, and inhibition of cell proliferation, metastasis and angiogenesis."

As for protein, limiting your intake can also help. Methionine is an enzyme found in all proteins. Cancer cells need this enzyme to build. Fish and chicken have the highest concentration of this enzyme.   

Over the last several months I've slowly reduced how much and what proteins I eat, sticking to organic / free range / wild caught. Your body needs about 46gram of protein a day. 

3 oz of salmon (which is really small) has approx. 24g.
1 oz of black beans has about 5g
1 oz of pepitas (sunflower seeds) have 10g!
1 oz of nuts (almonds, walnuts, pistachios) has between 5 - 9g 

Happy to share some recipes or more info if you would like. Just let me know. 

xoxo
kati


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Hi Donna,

Thanks for your response and time. I'm not sure about status of your disease I hope you already left it behind (if not yet, hopefully very soon). 

Actually we consulted 3 different oncologist and only one of them suggested biopsy to liver. however he requested biopsy to breast as well (second time), that's why we simply ignored him. 

Last oncologist that we decided to continue the treatment with, said similar things as you said. He will examine the progress (probably via mri or pet/scan or else not sure) to see results of drugs, and additionally said that about tumor on liver, "this is a secondary tumor (not a primary liver tumor) and you already have diagnosed with a primary in your breast, so there is very little possibility to have another primary elsewhere and another biopsy may mean waste of time". which made sense to us. However as you know, when you take sometime to think, the idea of missing any detail is brain twister.

Anyway,  she had one cure and have second tomorrow. I think it is called EC, the names of our drugs are Farmorubicin (epirubicin) and Endoxan (cyclophosphamide). 

Thank you so much.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2019 at 12:16pm
Originally posted by Juliezgay Juliezgay wrote:

I would most definitely ice my fingers. My nails turned black/blue then separated from the nail beds. It happened while on Taxol but I know the Ac contributed to it as well. 


Hi Julie,

Have you had any issues with your toenails?  Mine lifted during chemo, but never lost them.  I did get a common fungal infection (onychomycosis) which can occur when the nail is damaged or exposed. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2019 at 12:12pm
S4TNBC,

I'm so sorry your wife is dealing with this diagnosis.  Glad you are reaching out to support her.  What type of chemo is she on?

I'm not sure why they did not biopsy the liver.  I know it's not an easy procedure and maybe they thought it's better to get started on chemo and see how both tumors react, hoping to reduce the size or erradicate it.  I learned with my recurrence that not all tumors drain to the sentinel lymph nodes.  About 95%-96% do, but other tumors drain elsewhere to other lymph nodes or vascular system.  Your wife could be one of those statistics where it drained elsewhere in the body but her lymph nodes were clear.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Hi All,

I had my wife diagnosed with stage 4 TNBC with a met on Liver in late Sept 2019, and we started getting chemo after couple of tests. She is 32 yrs old, and we have a 4 yrs old daughter.

respectively, after biopsy from her breast, pet/ct showed another lump in her liver which was evaluated as a secondary of x CA. Our oncologist did not suggest a second biopsy to liver, instead we started chemo for every 3 wks(8.8.2019). Besides sizes of lumps are 1.8 cm in her right breast > 1.5 cm in liver.

there are 2 suspicious point that i'm concerned:

1. size of secondary almost same as primary.
2. no lymph, or any other part involvement was present on PET/CT.

I'd be grateful to hear if anyone else with similar condition. 

PS:I'm non-native speaker of English, sorry for typos.

Thanks in advance.
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Yes Julie, they really do.
Stay strong and dont stop believing. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliezgay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2019 at 11:30pm
I would most definitely ice my fingers. My nails turned black/blue then separated from the nail beds. It happened while on Taxol but I know the Ac contributed to it as well. 
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I had to have neulasta for all 8 of my treatments. 4 AC & 4 Taxol. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliezgay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2019 at 11:12pm
Hi Everyone, my name is Julie. Dx w/ stage 3c in April. Just finished up with chemo. 4AC & 4 Taxol. To me, chemo was brutal. I still have neuropathy of hands & feet. Muscle/joint pain different throughout the day. Chemo brain is a real thing, still having that. My nails separated from the nail beds, and are awful looking, but do not hurt any longer. Scheduled for lumpectomy & axillary node dissection in Sept. Follwed  by 7 weeks of radiation. My question is, do people with TNBC really make it to the 5 year mark? I know it is very aggressive, and most likely to come back else where. Just wondering? Is there a special diet we should be on? I finally have my tastebuds back, just wondering? Thanks
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2019 at 4:32pm
Hi Kelly! 
Yes, it was shingles again. I had asked my family doctor after the first time for the vaccine but he said no. This time considering the new vaccine he said yes so I had it. Itís 2 shots a few months apart and he believes itís more effective than the old one. I guess because you wait 3 months before the second shot it wouldnít fit with a chemo timeline. 
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2019 at 5:31pm
Noahmom,

Unfortunately the guidelines are no scans unless you are having symptoms.  Some oncs will do routine scans.  If you look at my statistics, I was the same as you.  Stage 1, clear nodes, clear margins, bilateral mastectomy.  My onc believed in scanning her TNBC patients once a year for the first 3 years.  It's how we found my recurrence 12 months after finishing treatment with a PET scan. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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