Lung metastasis

alapah said:

lung mets
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

alapah said:

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

butterfly123 said:

lung mets
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.