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Lung metastasis

Hannah1
Posts: 63
Joined: Jun 2012

I just got my lung biopsy result today confirmed thyroid metastasis.
I have multiple nodules on both my lungs being 10mm the biggest
one according to my medical oncologist. She told me I have to go
back to my Endo Dr. for further treatment. According to her(medical
Oncology )I should see a Endo oncology for 2nd opinion if I want to
be aggressive. I ll see my Endo Dr. On the 25th of this month. On my
last visit 3 months ago she mentioned on referring me to Stanford hospital
But changed her mind to just wait 3 months. Hopefully she will refer me
on my next visit. I don't have no symptoms yet. I had RAI last June my 2nd
one with 200 dosage. Is anyone out there who can share stories and what
Treatments they had after diagnosis. I will appreciate an info.

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

Hi Hannah,
Yeesh, I wish the news had been negative. As you may recall, i have lung mets. when my thyca was first diagnosed in 2009 i had a chest CT as part of it and one observant doc noted a small something in one lung and recommended keeping that on watch. My lung mets were on watch for about two years. This was tracked mainly through CT scans, with and without contrast. I get a combination neck and chest or neck to abdomen scan for this. My docs said many folks have lung nodules for years, decades even, with little to no growth. For many, the darn things just lurk there with no ill effects. Unfortunately, in my case, the mets are overachievers and began to grow and multiply. I can't feel them and I am not really sure they have much of an impact as yet, despite the fact that several are over 1cm, maybe 2 by now. During my thyroidectomy the surgeon was forced to sever my right recurrent laryngeal nerve because the tumor had encased it so I have only one working vocal cord, with the other stuck in a medial position. This affects my breathing and is most likely the source of my current slight shortness of breath if I run or try to zoom up and down stairs. I feel fine, work 40 hours a week, travel, just live life as I always have.

When it became apparent that my mets were going to forge ahead without intervention, I started seeing a local medical oncologist recommended by my endocrinologist. This oncologist is great and she has been willing to work with a medical oncologist I had seen early on at Mayo Clinic in Rochester, MN. They work together and come up with the plan as we go and I am currently on a form of daily oral chemotherapy. I have had to go this route because I am no longer avid for iodine which means that no matter how much RAI I am given it won't do me any good because, for whatever reason, the thyroid cells are having none of it - they are resistant. But keep in mind that It sounds though like you may be in a much better position in that RAI seems to be effective for you! If your thyroid cells are still picking up the RAI, then that is definitely the way to attack it. My understanding is that it's a little harder for RAI to reach the lungs but it can be effective.

In the course of my journey a few names or centers keep coming up in posts and the like - many of the leading institutions doing research and conducting trails for mets and RAI resistance are in the east or midwest: Mayo Clinic (Rochester, MN - Dr. K Bible), MD Anderson (Houston, TX - Dr. S Sherman), Memorial Sloan Kettering (New York - several docs), Univ of Pennsylvania (Philadelphia - Dr. M Brose), Johns Hopkins (Maryland - several docs). There are surely others but these are the places I've been referred to most. If your insurance and personal situation allow it, I highly recommend obtaining a few second opinions. Some will do an initial evaluation without seeing you if you send all of your records and films. I had about six second opinions when I was having to decide whether or not to go forward with external beam radiation back in 2009 and I have to say it was tremendously helpful.

If you find yourself having more questions, another place I have found very helpful is a Yahoo Group called Adv-Thyca. This is a board for patients with cases of mets, RAI resistance, and more complicated situations than the 'average' case. People on there are quite knowledgeable.

Thinking good calming thoughts for you Hannah! Best to you.
eileen

Hannah1
Posts: 63
Joined: Jun 2012

Thank you for your calming thoughts. I really appreciate it. I don't know what else
to do but wait. I see my Endo Tuesday and I guess she'll tell me my options and
treatments. She mentioned about chemo pills and will refer me to stanford hospital.
Stanford is a Research hospital but I don't know about thyroid Ca. Will keep you posted
Thank you again for listening. God bless.
Hannah

Hannah1
Posts: 63
Joined: Jun 2012

Hi Eileen
I've seen my oncologist last Tuesday and referring me to head and neck
Oncologist for further treatments. I have multiple nodules ranging from 6 to 11 mm
on both my lungs. She referred me to Stanford. Getting all my medical records so
I can send to Stanford to speed up the process. She is also referring me to MD-
Anderson. She is now consulting with the doctor in Texas. How are doing with your
treatment (chemo). RAI is not possible for me anymore, not getting into the cells.
Next move is chemo. Are you in the clinical trial? Can you give me more information
On this chemo drugs. I am so worried and I don't know what to ask the dortor. Please
Help!!!! I would really appreciate any info you'll give me. Thank you and god bless

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

Hello Hannah
Such a lot to deal with - I ended up keeping a full set of my records and films on hand so I could ship it wherever it was needed. About two years ago I had a consult visit with Dr. Steven Sherman at MD Anderson (he is an oncologic endocrinologist. I was already seeing docs at Mayo Clinic in Minnesota but we met and talked about my case and he was excellent. In the end, he felt I had a good group of docs at Mayo so I just stayed with them. The world of endocrine oncology is quite small and docs working in the area all know of each other. After MD Anderson I was going to see Dr. Brian Haugen in Denver but his office told me he works closely with Dr. Sherman so, although they were happy to make an appointment, it would likely be redundant since I'd already been to MD Anderson.

I am not on a clinical trial, per se. My Mayo oncologist works with my local oncologist and has had me on two drugs thus far, both of which were available outside of a trial. I live in Alaska and no one is doing trials up here so if I do start to join trials, I have to move. The first drug I tried was Sorafenib/Nexavar. I think I was on that for about four months. It didn't do much to halt the growth lung mets in my case although it does work for some. We know I have the BRAF mutation and through trials they have determined that for people with that mutation drugs like Sorafenib are not too effective. After that I was put on a drug called Revlimid which operates on a different mechanism from Sorafenib. I had mixed response on that med but am still on it. That's been about five months. The side effects of Revlimid are much more mild than the ones I experienced on Sorafenib but on both I have worked 40 hours a week and just had a fairly normal existence. I get bloodwork every week and so far my blood counts are good so I have been able to travel. I went to Mexico to stay with friends while I was on Sorafenib and I am going on a trip to Europe in October.

The Yahoo Group called Adv-Thyca is a really good group of people, some of whom are on clinical trials or taking similar drugs off trial. I don't post there too often but I peruse posts quite a bit. It's been very helpful. Do you have a family member or friend who can accompany you on your doctor visits? I have had friends and family come a few times to help ask questions I forgot to ask or to remember what the doc said when we mull over options later. I also tend to write down questions before I go to the doc - but I do understand the feeling of not even knowing what to ask. From the outset, my oncologist and I talked about various drug options and why some were better for my case than others. My onco is very good at explaining his thinking and explaining how the different drugs work to slow the cancer.
Best to you Hannah. I tried sending a private email to you on CSN's system - hope it got through.
eileen

Hannah1
Posts: 63
Joined: Jun 2012

Yes I got your private email and I thank you. I am in the process of getting all my
medical records and hopefully I will get an appt. at Stanford before the end of
this month. My Endo Dr. Is trying to get me a referral at MD Anderson too for
second opinion and for further treatments. Take care and god bless.

butterfly123
Posts: 52
Joined: Feb 2010

Hi Hannah-Did your lung nodules take up the RAI during your last treatment? I have lung mets with the largest being around 6mm but my tg is rising. My endo has not yet recommended any clinical drugs. I also have no symptoms. I had 300 RAI mci about 2 years ago and my lung did "light" up on the whole body scan. It's all so confusing...we feel fine except for this growing disease that we need to keep stable.

Hannah1
Posts: 63
Joined: Jun 2012

According to my Endo RAI isn't working and to wait another 3 months and do another CT
But I told her I can't wait 3 more months without doing anything. I wanted to know what my
options are and prevent it from growing. My largest nodule was 10mm and had multiple small
Nodules on both lungs. This is what makes me scared. How high was your TG and what is your
Synthroid dosage?when was your last CT scan. How often do you see your Endo?
My Endo recommend me to see Head / Neck oncology at Stanford and second opinion at
MD Anderson. I'll keep you posted. We need to be strong and spirits up. God bless.

Hannah1
Posts: 63
Joined: Jun 2012

How is your Tg now? RAI doesn't work for me now. I saw head/neck oncology Dr.
last week for second opinion at Stanford and recommended to get CT scan in three
months and no chemo Drugs yet since I don't have any symptoms. He said.that the
chemo drug has bad side effects especially causes high blood pressure. Just wait and
see situation now. Hoping that this nodule will not grow. I have well differentiated cancer
cells. Keeping my spirits up and staying strong to fight this cancer. God bless.

melanie2626
Posts: 1
Joined: Apr 2011

Hello I can't tell you how glad I am to find boards on this considering I really can't find any information on this! I am having a hard time with this considering my last dose of RAI was 250 and my TG was 27.5 and after this really high dose (which this was my second round of RAI) the took my TG again and it was 26.9, Which means my nodes in my lungs are non-responsive. It is hard because I am 29 years old and have odd burning sensations in my lungs every day. My Endo has the worst bed side manner and so I talked to my surgeon who is currently trying to get me into an oncologist. I was diagnosed back in 2011 when i was 5 months pregnant with my second child. They did emergency surgery and they took out a 7cm tumor. When the surgeon did the thyroidectomy he said it was a mess and they couldn't save my vocal cord, It escalated from there! I decided to wait till my baby was 38 weeks to have him and then right after they did a full neck dissection which was a mess too, which I experienced a Kyle Leak which was extremely painful. I then was given the first dose of RAI which was only 150. Right after that is when they found the cancer has spread to my lungs and seemed to no be responding to treatment. That is why they decided to hit it hard with the 250 dosage and my Endo said he was really optimistic, but then last week is when I got the news they were still not responding. I have heard a lot about some clinical trials with this, has anybody experienced a good outcome from the oral chemo's? I was wondering if someone could give me some info or even questions to ask my new oncologist. I would appreciate anything! Thank you!

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

Hello Melanie,
Are your lung mets stable or are they growing? If they are stable, most docs will simply monitor you. I've been told that some people live with them for decades, doing very little in the way of progressing. You should ask your oncologist about your nodules and their progression, ask for recommendations. If he/she recommends a certain regimen/drug, ask about the pros and cons and learn about potential side effects. If they do recommend a certain course of action, you might ask why that is recommended over other existing options. If they don't recommend treatment right now, ask why that is and how they plan to monitor your situation.

I too have lung mets that are not responsive to RAI though mine are not stable without drugs. I also lost the nerve to my right vocal cord in surgery because of the situation. I have been under the care of a local oncologist who is working with Dr. Keith Bible, a medical oncologist at Mayo Clinic in Rochester, MN. I have had consults with Dr.Bible but don't see him much in person. He's been great to me and my oncologist. One key thing with oncology is that docs weigh all of the factors in your situation and look at quality of life and how that may change if put on chemo - balancing how much benefit you might gain versus how drugs may adversely affect you. I have been on two oral chemo drugs since last year.

I have been on the oral chemo drug Revlimid since March of this year. Before that I tried Nexavar/Sorafenib for several months. While the Nexavar didn't do too much for me, so far Revlimid seems to be helping slow the growth for most of the nodules. Side effects on Revlimid are mild for me, whereas Nexavar's were a bit more pronounced. I get blood labs every week to monitor the drug's impact on my organs mainly, and CTs every three months to gauge how the lung nodules are doing. I think in many patients they can use thyroglobulin to help gauge but I have Tg antibodies so we can't use that blood test in my case, unfortunately. If you don't have antibodies, then Tg may help oncologists gauge whether there is growth or not. Not many medical oncologists deal with thyroid cancer as in the past there were no chemotherapy treatments for it.

There are a few key places around the country where oncologists and researchers are working on thyroid cancer chemotherapy protocols, among them Mayo Clinic, Memorial-Sloan Kettering, MD Anderson, Johns Hopkins and the University of Pennsylvania. I want to stress that you may not need chemo right now - every case is unique. However, it probably could be of help to you to know what paths are out there for you if and when you may need to go that route. Research is ongoing and new drugs are in trials in several places.

The drug I am currently on was developed for multiple myeloma patients - never know where they will find connections. I also have the BRAF mutation so my oncologists are very interested in current studies on MEK inhibitors. Nexavar is in a drug class known as TKI inhibitors and they have been found to be less effective in patients with BRAF. Lots to know. I have appreciated Dr. Bible taking the time to explain things and help me understand options. I'm sure there are other oncos out there like him. I much prefer docs who explain what is going on and not just tell me minimal bits of info.

Best to you Melanie!
eileen

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