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BRAF POSITIVE

Hannah1
Posts: 62
Joined: Jun 2012

Hi everyone! Anybody knows about BRAF. I was told that I am braf positive 

So is this an aggressive cancer? Ihave multiple nodules on both lungs and I am

on the watch. I just had CT scan last week and see my Dr. On jan. 24. TG still elevated. 

Anyone who has positive braf that can share their stories and I need to know to ask my Dr. 

Thank you and god bless. 

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

Hi Hannah,

I am BRAF positive papillary thyca patient - this determined by doing a biopsy on a lung nodule. Mine happens to be an aggressive form but I am not sure that BRAF is always associated with aggressive forms of thyca.That's a good question.

What I do know about how it can affect treatment largely comes from consultations with Dr. Keith Bible at Mayo Clinic. I am a patient of his on an oral chemotherapy drug called Revlimid (been on it for nearly a year). For several months before that I was on a kinase inhibitor oral chemo drug called Nexavar/Sorafenib which had little effect in slowing growth in my lung nodules. Dr. Bible tells me that patients with the BRAF mutation tend not to respond well to the kinase inhibitor class of drugs because those drugs are targetting the cell in a position above the BRAF mutation. There is research underway on drugs called MEKs which are to target cells below the BRAF mutation. That, of course, is a simpleton's understanding.

The BRAF mutation is associated wtih an array of cancers: breast, colon, throid, melanoma, etc. which, while scary, may also be somewhat positive in that there are a lot of people affected by it so a lot of research is being done on it. I had a melanoma in situ removed from my neck the same year I was diagnosed wtih thyca but we don't know if that as BRAF positive (was not tested).

Some recent trials with BRAF focused drugs apparently had great results at first but then had a paradozical effect so my onco isn't keen to start me on any of those just yet. I get my drugs off trial by the way.

My nodules are monitored through CT scans though I understand that if I did not have Tg antibodies, the Tg level could be used as a guide on growth. As Tg rises,, it's apparent that something is up - some growth is occuring. (Antibodies mess with the reading so can't use that for me). They compare previous scans to latest and determine degree of growth and appearance of new nodules. Ideally, the chemo would even make some disappear but that hasn't happened for me. I am on chemo because my nodule growth rate was on a pace they felt needed intervention but many patients just remain on watch for years. Every case is unique.

Some of the major thyroid cancer research spots are Mayo (MN), Johns Hopkins (MD), Univ of Pennsylvania (PA), Memorial Sloan Kettering (NYC), MD Anderson Cancer Center (TX). There are a few trials around, the only ones I have looked into so far are with Dr. Marcia Brose at the Univ of Pennsylvania.

Adv-Thyca on Yahoogroups is a very helpful support group for thyca patients with less typical cases. Many active members, many on trials or taking chemo off trial, and many not on a regimen but being monitored. All seem to have done a lot of research and able to offer insights. 

BTW, though I have been on chemo for over a year, I remain in good spirits, feel fine (with minor side effects), travel, work a regular schedule, etc. 

Best to you Hannah. 

eileen

Hannah1
Posts: 62
Joined: Jun 2012

Hi Eileen, my braf was done after the surgery in 2009 but just knew the result now since my new

Med oncology requested it. I have asked him if this an aggressive one and said that not all positve

Braf are aggressive. Mine was not aggressive. But I just had CT this jan. and came out that my

nodule grew 2mm in 6 months. He said its growing slowly and will repeat CT in 6months but wants to

see me in 3 months. I am still worried this nodules in my lungs. He said no treatment yet since I'm not 

having anyproblem and nodules are still small. He further said that the chemo drugs will make sick. I also 

feels good and works full time without any problem. 

I have send you a personal email but was wonderingif you have gotten it. Take care and god bless

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

I just got caught up on your latest. Glad to hear it is not considered aggressive. The no treatment for now plan was what I followed for some time as well. It seems to be rather standard and in many ways the wait and monitor makes a lot of sense though it can be stressful for sure. I don't seem to have a message from you but I will try to send one to you and we'll see if that works. not sure what happened. I know the private message thing has worked in the past. 

eileen

Hannah1
Posts: 62
Joined: Jun 2012

Thank you. I know cancer is all wait and watch thing. Can't do anything till you have symptoms

so I just live a normal life enjoy each day. How long did youhave to wait until you started your 

Treatment and big was the nodule? I hope your feeling ok. We just have to fight this cancer. 

Its just too hard battling 3cancers but high spirits and good support is getting me through this. 

Take care of yourself and god bless. 

Hannah1

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

deleted

J026
Posts: 5
Joined: Jan 2013

Hi ladies,

I hope you don't mind I but in on this convo, but I have a question. I am curious how you two found out about your lung nodules? I was diagnosed with pap in Oct had surgery 4 weeks later with lymph node spread 4/40 pos. They said they though they got it all, but still wanted to do RAI because of lymph node involvment. I had a CT of the chest on 11-18 and the report came back as no blood clots found and no nodules present. Then I had another on the 3rd of Jan and I had a 6mm nodule on the rt side and a 2mm on the left side. I am trying to gain insight from anywhere for people that have lung nodules. How they found theirs, how fast they grew, both lungs vs. one lung. It seem s like they "appeared" over 6 weeks time is making me nervous. I am a young mother with 5 kids and thought I was healthy! Any insight on you ladies journey about how you came across the lung nodules would be greatly appreciated. For now they tell me to wait for the pet scan......

 

Also, my Tg abtibodies are 630 which I guess is high and does not give them a "tumor marker"

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

Hi J,

My lung nodules were discovered after my endo noticed a rise in my Tg and TgAB. Even with antibodies, the general trends/change can at least signal something is awry. The endo first did a neck ultrasound which showed nothing unusual. She then had me take a small dose of RAI, followed by WBS but when nothing showed on that so there was a realization that I must be non-iodine avid because the Tg and TgAB were telling them that cells were active somewhere.

After that I had either PET or Ct (I can't rememeber for sure but I do think it was a PET because they are more sensisitve than a CT.). A few small nodules lit up in both lungs so we knew then that the source of the Tg activiity was there (hopefully not elsewhere too). I was on watch for a while with those, getting CTs every six months i think it was, as well as Tg draws. When Tg started to go on the rise they could see increased growth on the CTs and, in my case, the rate of advance caused them to recommend that I start on chemo meds to try to halt or even reverse the growth.

A radiation oncologist had told me that if one nodule was to really take off and was in a good place to hit with radiation, that could be done but mine are all over and not in good spots. I ended up having a surgical lung biopsy done to know for certain that the nodules were thyroid cancer and not something else. This isn't typical but I had had a melanoma in situ removed in 2009 and so we wanted to be sure that it wasn't some other type of metastisis.

I never had symptoms - still don't. I do have some breathing issues but that is the result of having one vocal cord inoperable and stuck in the center postion which somewhat restricts the airway. Most with lung nodules have no symptoms in the early stages.

There are a number of endocrinologists and medical oncologists who are very well informed when it comes to thyroid cancer. Those medical oncologists researching chemo, for example, are a smallish group and all know about each others' current studies and developments. 

I hope that helps. You're not alone in this - many of us here to help you.

eileen

Hannah1
Posts: 62
Joined: Jun 2012

Hi J,

I was diagnosed with pap TC in march 2009, with no lymph  node involvement .Had RAI  in june

And PET/CT scan was ok. So I see my Endo every 3months with labs also done   On 4/11 TG level

was elevated(43.3),10/11 (49.5), and still keeps going up so Endo dr decided to have another RAI

With higher dose (200)mci with PET/CT scan. This is on  June 2012 and showed  multiple nodules on 

bothlungs, 10mm onlefty lung and 8mm on right lung.  Then I went to see my other medical oncology

and order to have a lung biopsy. The biopsy confirmed thyroid cancer. Iwent for a second opinion and 

now I'm on the watch. He doesn't want me to start on chemo yet until I have symptoms. I just had

lab done two weeks ago and TG Again elevated (218). Also had CT scan last week. I will see my doctor

on the 24 and hoping it didn't grew. I am also scared of the results. I don't have any symptoms yet. It seems

like mine started 3yrs afte surgery coz I am being monitored closely with whole body scan every year. 

Ill keep you posted. By the way I have 3 cancers  I've been fighting uterine,breast, and now thyroid. So hang 

In there. Keep that spirits up. 

 Take care and god bless. 

J026
Posts: 5
Joined: Jan 2013

Sorry to hear that. I wish you health and happiness through this. I find it so crazy that people can have more then one cancer at a time! I just new to this and trying to figure it all out. I am only 26 for heck sakes. I just can't seem to find anyone who had nodules appear over a matter of 6 weeks. That is what I hate the most. Cancer is all about watching and waiting isn't it? ;)

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