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Clinical Trials

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

I was told by a Breast Cancer Nurse Advocate that I may be illegible for a clinical trial where I would not receive Chemo and they would monitor me closely for ten yrs.  That would mean I would only take the Anti-Hormone Therapy that I would have done before finding two cancerous Sentinel Nodes.  I love the Idea but scared of possible out come.  I see the oncologist on Mon. And I'm sure I find out then if I qualify.  Just don't know what to think about it.  Anyone out there that has done or doing a clinical trial? God Bless!   Kathy

Patti1967
Posts: 186
Joined: Mar 2013

Sorry no experience but I find it interesting......No chemo?  Just tamoxifen etc?  I just dont know how Id feel, seems not doing chemo is risky, but wishing you the best for whatever you decide is right for you!  Hope you are feeling and healing well:)

Patti

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

It has always been my understanding that if you even have one node that isn't clear, that you have chemo. You want to kill those cancer cells, and, chemo does that.  You said you had two and they are saying you wouldn't have to do chemo?  It seems risky to me too like Patti wrote. 

Have they at least mentioned taking the Oncotype DX test to see what you score?

Good luck with what you decide.

Hugs, Megan

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

There are other ways to kill cancer cells besides chemo.  

There is radiation, there are hormonal drug therapies for those whose tumors have ER/PR positive, there is Herceptin, Perjeta for those who are HER2.  All of these options do kill cancer cells.  With hormonal drug therapies, I believe if I remember correctly it is the better choice but you have to be post-menopausal.  I was pre-menopausal at diagnose and chemotherapy put me in what people once called chemical menopause.  Half way through chemo, my periods stopped and never returned.

If you are triple negative chemo is the only option along with radiation.

Best,

Doris

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

Chemo is not the only way to kill cancer cells.  Some are TNBC and chemo is there only option.  Some are what is known as triple positive ER/PR + and HER2+ which the latter allows other options like Herceptin, Perjeta.   ER/PR+ have the option of hormonal drug therapies.  

When dx in 1994, I did 6 months of CMF.  For 18 years, I did hormonal drug therapies (Tamoxifen, Arimidex, Faslodex 250 mg, Femara, Rebooted Femara, Faslodex 500 mg and then after 11 months more progression so I went on chemotherapy Taxol.  If you are ER and PR positive, hormonal drug therapy is better than chemo.

I have one more hormonal I haven't used, Aromasin and Afinitor which I will used after I calm down the present tumors active in my left lung.  Had I used this combo now it would have failed, the cancer has figured out how to deactivate the hormonal drugs.  I am on Taxol.

If you are ER or PR positive, what they are offering sounds very good to me.  When Arimidex came out in the late nineties it kept me NED for 8 years after they found 2 rib lesions.  That was my 2nd recurrence, my first was a large tumor in the axilla.  They forgot to radiate me in 1994.  My oncologist intimidated me (he was a real jerk) no internet then either.

Best wishes in your decision.

Doris

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

Because I am ER/PR+ I will have to take the Hormone Therapy... I guess they are thinking that for some breast cancer patients Chemo is over kill.  But it still scares me that I could relapes into cancer again and that's why I opted for a Bilateral Mastectomy even though I had cancer in the Rt. breast only.  I guess I'll find out Monday at my first Oncologist visit..... Kathy

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

Kathy,

I did chemotherapy after being diagnosed in 1994 and I don't believed it ever worked.  There are no guarantees.  I began Tamoxifen as soon as the chemo was over on March 17, 1995.  I had my first bout of cellulitis 18 months after I started Tamo.  I had another one 4 months later and another the one the following year.  This time, I had pain as two nerves were sucked into the tumor in the axilla.  I always believed that the cellulitis happened because the lymph flow was blocked by the tumor causing a back up.  I was on Tamoxifen exactly 4 years and had the tumor removed (2nd lymph node dissection) and then had radiation.

If you are post menopausal then hormonal drug therapy more than likely is the best way to go.  

 

Doris

 

 

Josie21
Posts: 359
Joined: Nov 2012

Hi Kathy,

I am not sure if I missed this question, but did you have the oncotype dx test done yet?  My score came back low so I passed on the chemo.  It is an extremely hard choice to make, but I really think you should have the test done if you can.  

Let us know what you decide.  Either way, we will be here for you.

Hugs,

Ginny

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

Thanks Ginny, I will ask the Oncologist on my first visit Monday about the oncotype test... If I can safely? avoid Chemo I want to.... Cancer aside, I'm not the most healthy speciman in the petry dish... lol.  So I don't want to create other problems for myself.... Kathy

Josie21
Posts: 359
Joined: Nov 2012

Hi Kathy,

I understand what you mean completely.  i was scared to death about the chemo because of heart problems that run in my family.  I think the oncotype dx test will definitely help you make your decision.  

Hugs,

Ginny

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