Renewing BRCA and Triple Negative Thread

Renairis

For some reason the thread of triple negative and brca got off the boards .Many of us triple negative and positive brca were receiving useful information and support so I decided to renew the thread!
I hope that the old thread will find its way back because there were a number of informative articles about new research.

I have a question and would be happy to hear from experience and knowledge.
I have stage iv recurrent bc that has metastisized to the lungs. It is idc and I am triple negative brca1 positive. I was first dx in 2004 and first known signs of return of the same type of growth appeared in July 2006.
I first received CAF which obviosly didn't help, and radiation, and now I am receiving Carboplatin Taxol and Avastin once every three weeks. The meds have been doing their job and I will be getting my 7th treatment after which I will have anothe CT to see to what extent the chemo shrank the mets or put me into remission.

I would like to know if any of you had similar treatments or can recommend what could be the next course of treatments for me after the current protocol I am receiving- for both possibilities:
1.If the ct shows I still have mets
2. If the mets disappeared (wow!) what sort of preventative care (instead of hormonal that isn't effective for triple negatives)could be benificial for me.I read that one woman is receiving avastin alone, for example.
Lets try and keep up this thread and see what research is being done for us BRCA ladies, and give a helping hand to one another!

Rena

ravdeb

bump! I'm bumping to keep this thread alive since the other one disappeared on us.

Renairis

Thanks for the welcome Debbie!
Rena

PineHouse

Rena,
I've been battling mets (lung area) for a year.
My first treatment was Avastin+Taxol for a total of 6 cycles. CT scan after 2nd cycle showed tumors shrinkage, but after 6th cycle tumors grew back to about pre-chemo.

Next oncologist put me on Avastin+Carboplatin. After 3 cycles, CT scan showed great shrinkage. However, we have problems with insurance company paying for Avastin, so I am now only taking Carboplatin and even less dose of Carboplatin b/c side effects. After 3 cycles of Carbo alone, tumors shrank further but not as dramatic as previous scan.

I'm only wondering how long this Carbo run could last on me. I don't see anything that's promising for triple negative or brca1 that insurance company is willing to pay without a fight. There's of course clinical trials such as Sutent & Dasatinib, but I have not done research on those.

Well, I hope your triple combo Avastin+Taxol+Carboplatin knocks off all tumors!

Renairis

Lanit
Thanks Lanit for your quick reply. I've read that carboplatin has proven effective for triple negative. I do hope this will be effective for you.
When I wanted to find out about Sutent and Dastanib I wrote in google. My problem with all the literature is that I forget what I read and am always going back to reread, hoping the onc. will be better able to explain.My onc. is quite condascending and usually tells me that the drug companies are trying to promote their drugs and therefore make promises. Nice and encouraging.
I always have to go for second opinions or more in order to get my onc. to listen.That's how I got the combo of carbo taxol and avastin.My former doctor "forgot" to suggest Avastin even though I was eligible for the Rosche funding of it. Luckily I got on.

We have no choice but to research and get 2nd opinions.
Good luck with the carbo .There is also studies on another type of treament called Tyrosine Kinase and I just read about epothilones. I can send you a list of meds I've been compiling by reading the discussion boards -if you would like.
Rena

Traci-----TripNeg

Renairis, can I ask you a question please?
When you were first diagnosed, where was it? How big was it? What grade? Did you have surgery?
Well, I guess that's four questions.....sorry.
Traci

Renairis

Hi Tracy
I was first diagnosed with brca1 in 2003 and immidately had my ovaries removed for prevention. The doctors debated about a double mastectomy and so did I.
My first tumor appeared a year later Invasive duct cancer,II (aggressiveness) stage 1 , clean sentinal nodes. After another check on the nodes removed Lab histology) there was suspicion of single cancer cells in in one lymph node.Because of these single cells I received CAF and radaition. The tumor was 1 cm.
The doctors were quite confident I caught the growth at a very early stage and were in shock when it returned.
I hope I answered your questions and would be happy to know if I can be of help...
Rena

Traci-----TripNeg

Hi Rena,
Thanks for the reply. So, you still have both breasts intact? Sorry if the answer to my question is in one of your previous posts.
: ) Traci

Renairis

Hi Traci
Yes I still have both breasts intact which, looking back, was probably a mistake. I wish the doctors would have been adamant about a double mastectomy (because of the brca gene) when I had my ovaries removed. I know this sounds like a strong statement but breasts are a very delicate issue for many of us and I was afraid to take chances and suffer the pain of surgery.
So many women have cosmetic surgery and I was always afraid to have any type of surgery except for medical reasonsand even fro medical reasons I delayed such a decision.
With the health challenges I'm facing today I regret not having chosen and been more encouraged to have a double mastectomy with reconstruction.
Maybe I'm answering more tham you asked to hear but I do hope this will help you or other women who may be facing such a dilemna and are BRCA positive.
Please feel free to ask whatever you want- there's so much info on the posts and it's good for me to read things over again until it all sinks in.By the way it's the first time I think I specified that I have both breasts in tact!
Rena
Rena

CalGal

Hi Rena -

Yes, I also miss the BRCA1 triple neg thread!

I'll try to be brief on my background, but since the thread is being "re-started":

10/04 - Bi-lat lump's, SNB (clear) and rad'tn on inv side, not on DCIS side.
12/05 - Recurr bc, mets to liver and unrelated kidney cancer.
2-11/06 - 6 Dose dense AC. RFA of liver mets. 5 Carboplatinum & Taxotere.
3/06 - Positive for BRCA1 mutation.

My breast tumor responded great to AC, immed shrinking and was gone after 3x. The liver mets shrunk too. The RFA finished them off! I did Carboplatin & Taxotere as added protection. I've been NED for one year!

As a trip neg, it's a bit nerve-wracking that we can't do more ... I'm getting bloodwork and PET/CT scans quarterly (next PET/CT is Tues) ... and am very hopeful that I remain NED.

My high calcium level is still being investigated by an endocrinologists. If I didn't have bc, there would be a 97% chance that it is due to a malfunctioning parathyroid. But, due to the bc, there is a higher chance it could indicate bone mets; although a bone scan a few months ago was negative.

At this point, I'm taking supplements per an integrative onc at my cancer center. It was interesting that my onc actually laughed when I told him ... but the point to me is to strengthen my immune system and prevent more cancer ... and my onc thought it wouldn't hurt.

Despite having mets, I'm staying positive and trying to be as aggressive as poss. I know there is a much higher risk for a new primary with BRCA1 ... and between that and chemo sometimes losing its effectiveness, I've had consultations re: bi-lat mast and recon (despite some doctors telling me "the horse is out of the barn"). If I stay NED, I'll have a bi-lat mast & recon done in Jan. I had hoped for kids, so even though that's highly unlikely between all my scans, chemo, having mets and age, it makes the ooph hard for me to do ... it's so final ... but I know that I should. I don't want to beat bc and then get oc!

CalGal

CalGal

Rena -

One more thing, have you talked to your onc about RFA for lung mets?

CalGal

Anonymous

ravdeb

Putting this back up where it is supposed to be.

Be well, Ladies!

Idamaria

Hi, everyone. I am triple negative and being tested tomorrow for the brac 1 and 11 mutations that is if the insurance pays. I am having my last AC tomorrow and have follow up pet scan in two weeks. I did opt for the mascectomy due to the grade 3 and triple negative meddulary cancer. If I do get the ok for the test and it is positive this will be great to have some more inof. thanks
Ida

Jillt

Hello, I have posted my info before, but I will add it here again.

I was first diagnosed in Dec 2004. I was told that it was caught early(triple neg, no nodes positive). I had a lumpectomy, ac and taxol and radiation to prevent it's return. In June 2006 I was told that I had a new primary tumor in the opposite breast - also caught early(triple neg, no nodes positive). I was tested and found out that I was BRCA 1+. I first tried xeloda and taxotere (didn't respond)followed by a mastectomy and gemzar and navelbine that ended in January 2007. In Feburary 2007 a routine scan showed lung mets. I tried CMF (no response) and Carbo (no response). I am hoping to have a stem cell transplant in august as a part of a clinical trial (I find out tuesday if I have been accepted).

I had intended to have my ovaries and opposite breast removed but the mets came up so fast that I did not have a chance.

Jill

tos

Hi, I am also a triple neg and brca1 positive.

I was first dx in 12/02, had a lump, 1 node positive, ACT/Rads then dx again in Feb 07 w/a new primary on the other side so went with a bilateral mastectomy. No positive nodes. Currently doing Taxotere.

My daughter had also been dx in Jan of this year, multi-focal w/2 tumors one of which was triple neg. With our family history I began to suspect something was terribly wrong so we did do the testing and both my daughter and I are positve for brca 1 but my sister tested negative thank heavens.

ravdeb

Cozy..are you going for Taxol after your scans? Some studies say that the Taxanes (Taxol and Taxotere) work well on triple negs. I pushed for it with node negative as well. and had AC followed by 12 weekly Taxol treatments and then 33 radiations treatments. I'm getting closer to my 2 year mark since diagnosis but July 18th is the date two years ago that I found my lump.

I'm hoping I was right about the Taxol. Just wondered what your doctors have told you...

LisaSDCA

I've posted before about my BRCA-1 story, but I'll put it here where it surely belongs. My sister was diagnosed at age 29 - we thought she was the first ever to have BC in our family (to this day, our mother, aunts, grandmother and great aunts have none). She had a tiny receptor neg. tumor, clear nodes. She had lumpectomy and rads (standard of care in late 80's). She was told she was cured - "go home and live a long life". It metasticized in 9 months to her brain, bone and liver. She joined a trial at Georgetown and was able to eliminate the brain and bone mets and stablize the liver for a few years. She died at 34.
In the intervening years, my younger sister and I, through genealogic research, were able to determine that our paternal great-grandmother died at 33, apparently from breast cancer. She left only sons and they had only sons, so my sister was the first female in three generations. As the BRCA test became available we begged to be tested. Nope - ONE 1st degree relative (and no other risk factors - non-Ashkenazi, etc.) meant insurance companies denied it. After my premenopausal triple neg. diagnosis (at age 49) further genealogic searches revealed that my paternal great-great-grandmother had died at 35, and besides my great-grandmother at 33, her two sisters had died at 31 and 35. BINGO. My MD sent me to genetic counseling.
What is pitiful is that I still didn't really qualify for testing (guidelines don't make allowances for two generations of all males), but my genetics counselor was able to recognize the 100% penetrance on the paternal side that we had researched and pushed it through. No surprise, it came back BRCA-1 positive.
I am going into this detail because there continues to be a misperception that the BRCA gene cannot be passed from aymptomatic fathers to their daughters. It can be "silent" for generations if no females are born. But genes are inescapable. My grandfather lived to be 90, yet he passed it to his sons. One of his sons had three daughters - two got the mutation. One, blessedly, is negative.

ANYWAY - I had 2 tumors in my right breast removed in Feb. so that I could immediately begin chemothrerapy without the delay of healing from major surgeries. I have just finished TAC x 6. As soon as I am strong enough, I will be having a bilateral mastectomy with immediate DIEP reconstruction. My particular mutation is low risk for Ovarian Cancer, but I am still planning on Oophorectomies as soon as all the reconstruction is healed.

Then I wil go forward on faith.

Lisa

Traci-----TripNeg

Lisa,
I am so sorry to hear about your sister.
My sister also got breast cancer at age 29 however, she had mast and chemo and now 10 years later, has some lingering side effects but is otherwise o.k.
After I was diagnosed in 2/07, we were tested for BRCA and are both positive. Now, my sister is just waiting for the cancer to show up in her good breast.
I had both cut off and as soon as I'm done with chemo, I'm having a full hysterectomy because....my other sister had uterin and cervical cancer 2 yrs ago. BTW, she tested negative for the BRCA gene.
I'll be thinking about you and look forward to your next post to see how you are doing.
Traci
TripNeg, stage II, grade III

Idamaria

Hi ravdeb,
No my Dr. said he does not feel I need anymore chemo unless my pet scan shows anything. He said I will not need a mamogram on other breast until April of 2008 and I will come in for a check up with him every 3 months for a year.I told him if I test positve for the Braca I will have other breast removed and consider having my ovaries removed. I kind of wish I was getting the Taxal since my cancer was grade 3 but he does not think it is needed. Do you think I should seek a 2nd opinion?
Thanks,
Ida

Renairis

Hi Calgal
I was very moved to see how many women posted on his thread again after it dispappeared. Ironically, we can't always make the cancer disappear so quickly (like erasing the thread here) but we can keep posting updating and supporting one another in our common endeavour to beat the villain.
It must be difficult to deal with all this during child bearing years.What are your chances of having children when you stay ned over a certain period?I've known women who've had kids after chemo so I hope this will be possible for you if you will want children.I can see why you are also opting for prevention by having breast surgery.

I have a few questions for you:
What exactly is RFA? I want to tell my doctor about all possibilities.
What supplements do you receive?
Could you write what medical center you go to and if you recommend it.

And for everyone who came back to the site and added her personal record and experiences- to me, this is part of the way to keep looking for more solutions to our situation and are determination to get better.
I wonder if more should be done to encourage or help expand research specifically for triple negative and brca genes.Something to think about!
Rena

PineHouse

Jill,
I'm glad that you're able to apply for the stem cell transplant. I really hope that you get the procedure. While this type of procedure was done quite a bit years ago, apparently it's standard today.
It's really frustrating when a few chemo showed no response. However, I don't see if your oncologist has suggested Avastin for you. Maybe if you don't get into the stem cell procedure, you can ask your oncologist about Avastin?
I wish you the best outcome.

LisaSD,
I can see how frustrating it is trying to fight a system that's based on outdated information. In your case, trying to prove that you qualify for genetic testing. I think all of us triple negatives have to deal with a similar issue at some point. Most clinical data, clinical trials, etc. are always center around the non-triple-neg breast cancers.
FYI I also got my brca1 from my father. But at least in my case my father has 2 sisters, both have/had BC (one died at 51, one is battling mets). I can see the horror of brca1 knowledge being lost because of all male generation(s) and then 3 or 4 generations later a female suddenly gets BC.
I believe all family members that have a chance of getting the gene, male or female, should be tested and should take this seriously.

sahalie

I too am triple neg. I am BRCA 1 & 2 negative.
I insisted on the test for peace of mind plus I have a daughter and sons that I want to protect.
I had a bilateral mastectomy.
Stage 1 grade 2 triple neg. DD A/C.
Clear nodes.
I have never taken estrogen.

Traci40

CherylnC,
If you don't mind my asking, did you do Taxotere? Did you do reconstructive surgery? You said you were dx last year..when?....Is your hair back? How are you doing?
Traci

CalGal

Hi Rena & Other Trip Neg's/BRCA1's -

I'll answer your questions, but also give an update.

Yesterday, I found out that it's unlikely that I'm still NED. While my liver is holding clear post-RFA, a mass was found on my lower right lobe. Lung biopsy is to be scheduled ... but I know that trip neg tumors are more likely to go to soft tissue rather than bone ... Plus, my high calcium level (due to tests and medication) is now an indicator of bc (not necessarily bone mets as I had thought).

Kids.
Rather than the BRCA1/trip neg issue, it's the mets. I get scans quarterly, which of course, couldn't be done if one was pregnant. There are no studies for one in my situation ... and given my latest news, a good thing that DH & I didn't proceed in that direction after meeting with two fertility experts ...

RFA = Radio-frequency Ablation
Basically, with CT guidance, needles are placed into the tumors and then the heat is turned on and the tumors are burned up!

Supplements
AHCC
Ayur Curcumin
ZMycoceutics
Ultra Preventative Beta (w/o copper)
Tri-En-All (high gamma tocopherol)
ProOmega (fish oil)
Natural C Plus 500
Ultra Coenzyme Q10

(Due to my high calcium level, Calcigard and Vit D were discontinued).

The above supplements are all by Douglas Laboratories and rec'd by an integrative onc.

I also take:

EGCg (Green Tea Extract)
Indole-3-Carbinol

I was fortunate to leave a major HMO in California and since 2007, have been getting my care at a major comprehensive cancer center in LA. I'm quite pleased.

CalGal

Renairis

Hi Calgal,
Now I see why you have scans and ct's a few times a year. There's always room to hope you are still ned, yet, haven't we learned to also be prepared for another session of meds (a little help from our friends)?!This is the chronic element of mets.
I do hope you are negative for mets this time!
Have you ever had Avastin?
I am sending a reference re cisplatin. I know you've taken it already (carboplatin- from what you wrote) but this article also explains its effectiveness and also gives other references. maybe it can direct you further because you seen to know your medical stuff very well.This refernce is of course for anyone on the thread!

http://www.medicalnewstoday.com/articles/68390.php

I don't remember how I found it- I try and collect different articles I come across - may be I even found it through the thread. With all the info we have to process I don't think it hurts to read and reread and try going up the same alley at times.
I will relay all your useful details to my onc. next time I see him.
Thank you for your explanations.

Rena

Rena

Traci-----TripNeg

Calgal,
I'm sorry to hear about your news.
I finally gave up on the idea of ever having kids when I found the lump and especially when I found out I was BRCA 1+.
I wonder, if the invetro I did (to no avail) made my cancer break out of it's shell.
Good luck girl.
Let us know how your doing.
Traci

sahalie

I take OsCal with extra D

sahalie

* I hope everyone is doing OK.

Traci-----TripNeg

CherylnC,

I am so sorry to hear about your husband. God....I can't even begin to imagine how that must have been for you. I sat here for so long after reading your post, thinking of something to say and came up with nothing, except tears.

I'm doing o.k. I have been extremely depressed this weekend. My GP put me on Welbutrin (sp?) and I swear, it's made me worse.

I've got treatment #2 of 3 of Taxotere only, this Thursday and I'm not looking forward to it. My back was killing me after the first one. I know, only one more after that but then....hysterectomy....I'm just feeling sorry for myself and I feel like a real jerk when I read stories like yours.

I am happy however, that you are doing good now. Very happy.

And about your fall on the end table....first of all...what the heck are you doing getting that close to the spider???????? You must not have spiders in CA like we do in FL. I buy that Raid wasp killer and hit them from 15 feet away! The spiders here stare and you and jump!
You are so brave in many ways!!!!

Anyway, the cancer breaking the shell thing...
I had a doctor tell me once a long time ago that all human beings have cancer cells and it a crap shoot whether or not they rear their ugly faces.
I specifically asked my onc about the invetro and also, whether he thought cutting open a cancer tumor caused the cells to scurry like roaches. He said no to both. I don't believe him.

Calgal, please keep in touch with us on how your doing.

Goodnight ladies. My sister always says "sleep with angels" I say "sleep without hot flashes too!" : )
Traci

Renairis

The link below reports a study in Massachussets that is running for triple negative and brca1- testing the effectiveness of Cisplatin for the unique combination.The contact number is listed for those interested.
I am taking carboplatin and it is helping.

http://www.news-medical.net/?id=23940

Rena