UPDATE - please help --- Triple Negative bc Questions for a Friend

Triple negative...
Is what I am...I had a lumpectomy...stage IIa....with clean clear margins and NO lymph node involvement.......then Cytoxan/Taxatere..followed By 33 radiation treatments....now dealing with a recurrence...came back in my lymph nodes...shocked my physicians...me too! Triple negative is a particularly aggressive type of bc...and the younger the woman, sadly,the more aggressive it can be....Tell your friend to stay off the Internet looking up triple negative....it can scare her even more so than she already is....also being triple negative, there is no Tamoxifen, etc...to take once treatment is finished as it is not estrogen driven....

Wishing your friend the best...keep us posted...
Hugs, Nan y

LoveBabyJesus said:

Hi Nancy -- Yes I know some
Hi Nancy -- Yes I know some of you have the triple neg. (I hope you're doing well). Thanks for your feedback. What were the side effects of the chemo regimen? Also, my friend is getting 6 months of chemo, is this normal? - looks like she might be stage 2a.

Side effects...
Wow! Six months of chemo...probably every three weeks....as young as she is they are probably being very aggressive with her treatments...good...I had 4 rounds of chemo...my side effects were....severe diarrhea starting 3 days-after the first infusion...then constipation for the remainder of treatment...lovely huh?lol. Had severe bone pain and muscle spasms after first infusion and the first Nuelasta injection....but not with the remainder of infusions....lost my taste buds for a week after every infusion....felt tired and fatigued..the steroids caused me nasty heartburn and insomnia...lost my hair, after having it buzzed beforehand on exactly day 14 after The first infusion...the side effects as we all know are cumulative....and everyone is different in how they react....on the bright side...I was religious in taking the anti nausea drugs and steroids...which also act as an anti nausea meds...and I never had the very first wave of nausea...which I feared...I was 58 when first diagnosed...just being as young as your friend is, perhaps that will make things easier to tolerate...she naturally has more energy...lol

My best to your friend...
Hugs, Nancy

linpsu said:

TNBC
I am triple negative - diagnosed at age 56 with DCIS - had mastectomy because of size, but no radiation or chemo. I had reconstruction with an expander put in at the time of the mastectomy, then an implant. Then a reoccurence at 58, this time stage 3C; had dose-dense chemo first (every 2 weeks) of adriamycin/cytoxin (4 rounds), then 4 rounds of taxol. Chemo gave me neuropathy, which I still have 2 years later, diarrhea, nausea (controlled by drugs), yucky taste in mouth (I lost 40 pounds b/c I couldn't eat), sores in mouth, blisters on feet. I know that not everyone gets all these side effects - I don't want to scare you - everyone is different but these were mine.
Then I had surgery to remove the implant as well as 14 more lymph nodes - one was positive, then 33 rounds of radiation.
Emotionally, I was a mess after treatment was over since there was nothing like Arimidex or Tamoxifin or Herceptin or anything else to keep it from coming back. I had a real tough time, but the wonderful ladies on this site got me over the hump and encouraged me to live for each day and not to worry about what may be in my future.
Right now, I am doing well physically and emotionally, and hope to do so for a long time!
hUGS,
Linda

Linda...
I have had horrible neuropathy in my breasts due to rads...I just finished a second go round due to a recurrence...and one area of the breast had to be overlapped for the first 10 rads....and oddly the neuropathy is much worse in the "good breast". ..perhaps because the other is numb...the pain has been excruciating at times...like someone poured gasoline on my breast and set it on fire...I've actually cried from the pain.... started Gabapentin two weeks ago....what a blessing this drug has been for me....the pain is gone....if you don't know about it please ask for it and try it....it's been a life changer for me....!

Hugs, Nan y

LoveBabyJesus said:

Hi Nancy -- Yes I know some
Hi Nancy -- Yes I know some of you have the triple neg. (I hope you're doing well). Thanks for your feedback. What were the side effects of the chemo regimen? Also, my friend is getting 6 months of chemo, is this normal? - looks like she might be stage 2a.

I'm not triple negative
I'm not triple negative LoveBabyJesus, but, I wanted to tell you that I will be praying for your friend!


Hugs, Diane

MAJW said:

Linda...
I have had horrible neuropathy in my breasts due to rads...I just finished a second go round due to a recurrence...and one area of the breast had to be overlapped for the first 10 rads....and oddly the neuropathy is much worse in the "good breast". ..perhaps because the other is numb...the pain has been excruciating at times...like someone poured gasoline on my breast and set it on fire...I've actually cried from the pain.... started Gabapentin two weeks ago....what a blessing this drug has been for me....the pain is gone....if you don't know about it please ask for it and try it....it's been a life changer for me....!

Hugs, Nan y

Nancy, is Gabapentin a
Nancy, is Gabapentin a prescription?

My wife is triple negative
My wife is triple negative and was stage 1; node neg;had lumpectomy followed by dose dense AC/T (4 rounds AC/4 rounds Taxol)then radiation.

Though technically triple negative, her oncologist has her on Tamoxifen. He said the new protocols coming out will say that any positive (even though not technically enough to call her positive) would make it worthwhile to take the Tamoxifen.

jessiesmom1 said:

Triple Negative Breast Cancer
I was diagnosed with TNBC Stage IIa, Grade 3. I had an excision biopsy, complete axillary dissection (22 lymph nodes with 2 being cancerous), Tissue of Origin Test and a right mastectomy with a tissue expander implanted. Next came chemo. 4 rounds of A/C then 12 rounds of Taxotere. No radiation. I tolerated the A/C pretty well so the oncologist expected the Taxotere to go even better. Was he ever wrong. It was awful. Vomiting, diarrhea, teary eyes, lack of desire to eat were amongst the side effects. On the plus side, I did lose 45 pounds. There is something to be said for being overweight to start with. My blood counts remained reasonable so I did not miss a single treatment. I had significant problems with range of motion in my right arm/shoulder and ended up having shoulder surgery once chemo was over. My last chemo was in 8/2010. Shoulder surgery 11/2010. Reconstruction surgery 6/2011. Will be having revision reconstruction surgery next month 12/2011.

Please send your friend to this site. You are a good friend to look here for information and support. If you need more personal info feel free to send me an private message.

IRENE

TNBC
I don't have bc, but in the same week both my mother and mother-in-law was diagnosed with bc. My mother-in-law was diagnosed with Triple Negative.

My mom was lucky enough to have 8 children that love her dearly and we all are taking turns to help her through this.

But my mother-in-law lives with me, she only has my husband and me. She has Grade 2, she had a lumpectomy and they also removed 27 lymph nodes none was cancerous. She had her first round of chemo, 3 days after her 1st round of Taxotere she vomiting, teary eyes and doesn't want to eat or drink anything. It's been 8 days since her treatment and she is still in bed, barely eating and in constant pain. What can I do to make her more comfortable and help her through this. The past couple of days I find myself getting frustrated with her.

I'm scheduled to go to NY next week to take care of my mother, who is getting radiation. I'm afraid to leave my husband to tend his mother. I don't think he can handle it. What advice can I give him before I leave.

margie

TN BC
I was diagnosed 1 year ago. I had a partial mastectomy and 21 lymph nodes removed. I had AC4. Started treatments every other week with Neulesta injections. I lost all my body hair day 22. I began weekly Taxol treatment and made it through 9 treatments. I got too sick to continue and got bi-lateral chemical induced pneumonia. I was hospitalized for 10 days. I also found out, from a bronchoscopy, that I have emphysema. Go figure! I guess it's from all those years of working at a state psychiatric facility that had aspestose.
Here it is November and I must say I am beginning to feel like my old self.
Yes I have bilateral neuropathy in both feet. I did have it in my hands too but it went away. Since I had a discectomy in June 2010 I expected the neuropathy in my left foot.
Anyway, I am thankful for where I am today. Yes Gabapentin (Neurontin) is a god send. Not only does it help with neuropathy but it helps with night sweats.

I was also in a clinical trial that gave me hypertension and bloody noses. That is gone now since I had to stop the clinical trial.
I consider myself a strong person. I worked throughout this entire experience. Yes I had some nausea ( Zophran helped with that)and severe fatigue but I could not stand to be home in bed after spending the entire summer of 2010 in bed due to the back surgery. So I pushed myself as much as I could.
I am a psych nurse and stubborn Italian. But I believe my interactions with peers from work helped my sanity.
I have days where I cry, still, and I do fear the return of this type of breast cancer.
Having said all that I take one hour at a time not just one day. Again, I am thankful for being alive. I hope this helps if someone else is feeling like they are an emotional roller coaster. What can I say other than it is normal and do not let it take you over. If you are too depreseed or withdrawn it's okay to reach out and just talk or scream.
I like to scream when alone it helps.