Triple Negative Breast Cancer

meadowglade

I have had chemo for triple negative. I had surgery and that had mixed results. I was told that it would be an outpatient surgery, nope I had to stay because the tumor was bigger then they thought it would be and I had three lymph nodes infected plus chemo didn't kill the cancer. I spent 4 hours waiting for a room because they weren't expecting me. The good news is that the margins were clear and it was still stage 2B. I am now in radiation, just had my 9th treatment. I am having my breast, armpit, and clavicle area done. He wants to be sure that there is no regrets. He did say I will go from a 50/50 chance of having breast cancer again to a 85/15 not having it. Because this is a rarer type there are not a lot known how the best way to treat it. I will go on a chemo pill that just came out of trial if I understood them right. It works with the immune system. I will go into to a trail after that for another drug that shows promise as well. I guess I am wondering if there is any advice from someone that has or had this type. I will take any support thou. I have lots of support from family and friends, but no one that has had breast cancer. I am doing very well with very few side effects and am doing everything I can to continue with that. Thanks for reading this. Blessings to all.

 

KimQ

TNBC

HI, I am new to this site so I'm not sure how it works.. but if this gets to you know that my thoughts and prayers are with you. I too have tnbc. I was diagnosed Dec 21 of last year. I have 3 chemos (taxol) left, then repeat scans then surgery.  I'm working full time, which is a challenge and I've only been married to the man of my dreams for a year... It's been a very hard journey for me as well. The AC chemo almost killed me. I had a small heart arrythmia that the chemo made dangerous, then I got the flu... it's been a rough road. I know I'm at the end of my treatment... but I am scared. I have not heard about a pill for tnbc... but maybe that might be an option for me after surgery.... Just know you are not alone. I have not reached out or talked to anyone with tnbc... I guess I am too scared to know what others are facing... this type of breast cancer is nasty...  Please keep fighting... stay as strong as you can and know you are not alone!!!

meadowglade

KimQ said:

TNBC

HI, I am new to this site so I'm not sure how it works.. but if this gets to you know that my thoughts and prayers are with you. I too have tnbc. I was diagnosed Dec 21 of last year. I have 3 chemos (taxol) left, then repeat scans then surgery.  I'm working full time, which is a challenge and I've only been married to the man of my dreams for a year... It's been a very hard journey for me as well. The AC chemo almost killed me. I had a small heart arrythmia that the chemo made dangerous, then I got the flu... it's been a rough road. I know I'm at the end of my treatment... but I am scared. I have not heard about a pill for tnbc... but maybe that might be an option for me after surgery.... Just know you are not alone. I have not reached out or talked to anyone with tnbc... I guess I am too scared to know what others are facing... this type of breast cancer is nasty...  Please keep fighting... stay as strong as you can and know you are not alone!!!

Thoughts and Prayers to you too

Will you get radiation? I am on my 10 treatment out of 28, with five more after that if all goes well, and so far it has. The pill is called Xeloda, and most take it for six months, two weeks of the pills and one week off. After that I am up for a trial with Pembrolizumab. I am doing everything I can to fight this from coming back. I pray you can through the rest of your taxol. My cancer was in my left breast, and after surgery it was a stage 2B. I hope yours was caught early. My husband has been my rock! He  has made me laugh when I felt like crying. I am blessed to have him. We will be married 41years this Saturday. It dosn't seem like it has been that long! I hope we can stay in touch. 

 

wallis2

Hi I am new to the board as

Hi I am new to the board as well.  I have never neard of Triple Breast Cancer.  I was diagnosed with breast cancer in my left breast last year and still to this day I can't believe it.  I was in the process of getting a breast reduction. I had a lumpectomy at first, then the doctor wanted to cut me again with another partial lumpectomy.  I got a second opinion and I made the decision to have a bilateral mastectomy.  The doctor stated it's my choice.  I made a choice to just get both off so I won't be in the hospital years down the road.  I had 28 rounds of radiation and it was horrible the last week.  I had to sleep with my arm up and I was peeling bad.  I finally got better and now they have me on the 5 year pill.  My body ache, my muscles hurt.  I contacted my doctor and asked, how can I get my chest from feeling like a tight band around my chest.  My doctor told me to use Aspercream or Icyhot.  Well it feels ok, but it comes back and I use it every 6 hours.  My ribs, knees, shoulders, and my arms hurt really bad.  Someone said getting a massage would help, but I don''t have any money for that(insurance doesn't pay for massages) Does anyone have any advice on how I can stop my chest from feeling tight like a band is around it other than a massage??? Please someone help!!!!

meadowglade

Sorry you hurt

I am so sorry that you are in so much pain! Do you have a cancer center near you? Mine offers massages and no cost. I wish I had more to help you. Would a pool help? If it had a thearphy pool that is warmer then a regular pool might help. 

Triple negative breast cancer is rare, only about 10% get it. 

 

wallis2

meadowglade said:

Sorry you hurt

I am so sorry that you are in so much pain! Do you have a cancer center near you? Mine offers massages and no cost. I wish I had more to help you. Would a pool help? If it had a thearphy pool that is warmer then a regular pool might help. 

Triple negative breast cancer is rare, only about 10% get it. 

 

I do have a cancer center

I do have a cancer center near me, and I can contact them and ask.  Thanks so much.

Ladylacy

TNBC

I just wanted to say my sister is at 17 year survivor of Triple Negative BC.  She underwent chemo lumpectomody (she didn't want to lose a breast so she opted for this instead) then more chemo and radiation and she was on a chemo pill for years.  I don't know if she is still on one or not.   No one else in our family on both sides ever had breast cancer before.

Now I know of two sisters 28 and 31 who were just diagnosed with Triple Double BC and are undergoing 6 months of chemo then surgery then more chemo and radiation and then they will have their ovaries removed.

Wishing you peace and comfort.  

 

DragonLadyHere

I'm here because of a concern

I'm here because of a concern I have with my left breast, but I am normally on the Uterine Cancer forum. I'm cheering you all on as best one can. I so hope the best for everybody! It's interesting the differences in treatments. 

meadowglade

Thank you

Thank you LadyLacy for that wonderful news about your sister! It helped more then you know. The only difference is that I am having radiation before my pill chemo. 

DragonLady my mother had Uterine cancer and is a survivor of 10 years, she got it in her 70's. I still have you in my heart and prayers. I don't understand why it would take so long for you to get the information you need. 

Apaugh

be kind to yourself..

I was not a neg.  so I am not familuar with that battle field, however, we are all warriors and we are all simular in are fight.  I wish you well and to have better days ahead.

Hugs and love,

Annie

tryingtostaypositive

TNBC

I too am in the process of fighting TNBC.  I was diagonosed in March and have completed my first regimen of chemo which was AC.  I will start my weekly regimen of Taxol next week and I am scared for the next phase. I have done very well so far and they say the Taxol is not as harsh but for whatever reason I am feeling very freightened.  I think it may be the fear of balancing a full time job and weekly treatments with very little recovery time. Looking for advice from anyone who has been treated with Taxol.

 

meadowglade

Taxol

I did well on the A/C as well. I also did well with taxol. I suggest that you use Sally Hansen's hard as nail, it will help with the effect that taxol can have on them. How many treatments of a/c did you have and how many of taxol? 

tryingtostaypositive

meadowglade said:

Taxol

I did well on the A/C as well. I also did well with taxol. I suggest that you use Sally Hansen's hard as nail, it will help with the effect that taxol can have on them. How many treatments of a/c did you have and how many of taxol? 

4 doses of AC every other

4 doses of AC every other week and 12 doses of Taxol weekly

Mythreesonsthree

wallis2 said:

Hi I am new to the board as

Hi I am new to the board as well.  I have never neard of Triple Breast Cancer.  I was diagnosed with breast cancer in my left breast last year and still to this day I can't believe it.  I was in the process of getting a breast reduction. I had a lumpectomy at first, then the doctor wanted to cut me again with another partial lumpectomy.  I got a second opinion and I made the decision to have a bilateral mastectomy.  The doctor stated it's my choice.  I made a choice to just get both off so I won't be in the hospital years down the road.  I had 28 rounds of radiation and it was horrible the last week.  I had to sleep with my arm up and I was peeling bad.  I finally got better and now they have me on the 5 year pill.  My body ache, my muscles hurt.  I contacted my doctor and asked, how can I get my chest from feeling like a tight band around my chest.  My doctor told me to use Aspercream or Icyhot.  Well it feels ok, but it comes back and I use it every 6 hours.  My ribs, knees, shoulders, and my arms hurt really bad.  Someone said getting a massage would help, but I don''t have any money for that(insurance doesn't pay for massages) Does anyone have any advice on how I can stop my chest from feeling tight like a band is around it other than a massage??? Please someone help!!!!

So sorry you are going

So sorry you are going through this I too am TNBC 49 years old had a lumpectomy. Now on CMF it is a first generation chemo but has shown great results with TNBC . MY DR is from MD 

Anderson.  My question is what pill are you on. typically the only thing for us is chemo and radiation.  There is no studied immunotherapy. 

Mythreesonsthree

I was diagnosed Jan 29, 2019

I was diagnosed Jan 29, 2019 TNBC STAGE 2A 1.4 CM TUMOR 1 LYMPH INVLOVED.  I am from NJ and went to Sloan, Summit Meidcial Group who is affiliated with MD Anderson , I had my breast surgery from one Dr then went for three opinions of different oncologists. I happend to luck out and find a Dr who is triple board certified, attended MD Anderson as a student ( only 15-20 students a year get accepted and he practiced for them too. He moved back to Jersey and stands alone . He can work for any of these big cancer clinics but chooses for many reasons to practice alone as an oncologist who treats all cancers. He has 5 star ratings and steps out of the box. He is up on the latest research and is brilliant. I was told by many people that a lot of people are alive because of him Anyway my point being if you do your research on TNBC you will see that most are highly aggressive splitting at a hight rate a and are considered basal like, 

The other oncologists automatically wanted me to take ACT said " thats the protocol" so I listened and I went for another opionon " thats the protocol" I went to my Dr and he actually said well yes today that is what most big cancer instututes are doing they are givin a  new third generation drug however the 1st generation drug CMF has been studied and has an alkaline agent in it that shows promising effects against TNBC As a matter of fact he said it has the same outcome with less effects on your heart and not as toxic. The head of Sloan is now also saying he thinks this can be a the new protocol and the number one scientist in the country is now recommending cmf for tnbc , MY Dr is young, brilliant and attended and practiced for MD Anderson where people travel aLL over the world to go. I trus him and I have two more infusions left. he also made a good point  why bring out the big guns now? No purpose once you use ACT you can never ever use it again, so in his experience he has seen better results with TNBC less reoccurance and its better tolerated. Remember too its the new hot thing ACT Big PHarm like promomoting new expensive things. Not saying it works but if there is somehting else out there that has been used since the 70s and studies show its just as good as ACT for TNBC possobly better why not go for it. What was disturbing to me I called my original oncologist and said I want cmf    she said oh no we only use ACT I said it is my body, she said that is our protocol I said listen I researched CMF and it is just as effective if not even more, she didn't know what to say to me. I said listen Im not dumb your company is in bed with the pharm company and you cant give me what I want. She daid noone will give you CMF I said really research Sloan the head of Oncology see his opinion , and the head scientist in the country and MD Anderson. I said bye bye. So I trust my Dr all he said was true I researched all he told me, and I am doing it. I had one hospital stay I went neutropenic  I got pnemonia , other than that it wasnt pleasent but he said ACT will destroy me.  So I pray every day I read the bible on my knees I have 3 kids and I am 49. I will not live in fear, I will not die from this. I made up my mind I decide how I die. I slso went to several nutritionists, I now bought a water distiller the one you actually distill water it is on amazon it isnt a filter or jug you pour it into a distiller that uses osmosis to distill water. you will see plastic and soot at the bottom of it after you use it. I drink a gallon to two gallons of water a day. I am trying to stay away from bread. I don'nt have much of an appetite and I lost 18 pounds since April. I also get weekly massages, and I researched these natural herbs that have been researched and have had great results on all diseseas especially cancer. I just orderd them and reserched them read testimony and watched videos from the news about this and it cant hurt it is calledNrf1 and Nrf2   Life vatage Vitality Stack. I hope I helped someone.  All I do is research and ask my Oncologist every question every time I see him. God Bless us all and may this disease never rise upon us a 2nd time, and for those of you who it did may you be healed in Jesus's name.  Be strong and dont fall to this. Remember you decide.