Thyroid Cancer that spread into lungs

245

Comments

  • miladyx
    miladyx Member Posts: 85

    My similar experience with Stage IV PTC and lung nodules
    It is so encouraging to find a discussion thread that touched on situations like mine. I have a great nuclear medicine guy who is acting as my primary physician for this cancer even though I no longer get any results from raI131. I have talked with chest surgeon, oncologist, Nuc Med doc and head-neck surgeon. Let me tell you what I have learned in case it helps. My situation is Tg level at 6, up from 5 at start of the year. I had thyroidectomy in 2003 and radical neck dissection in early 2010 to take a lot of canx lymph nodes. No uptake on raI131 treatment in April, but I had a PET/CT scan in May when my Thyroglobulin had only gone down to 5.4. PET/CT scan confirmed 2 nodes under my clavicle and numerous nodes in my lungs (under 6mm in size). Re-scan (CT) in Aug shows lung nodules more clearly and Tg at 6.2. I have normal lifestyle today.

    Guidance I have gotten:
    - Oncologist in April wanted to start trial Nexavar right away (promising clinical trials so far with positive results delaying tumor growth for 60%ish of people, currently in Phase IV trial). Chemo is not an option as it rarely works. External beam radiation can't be used on lungs. Nexavar (and other trial drugs) only work for a period of time in many people tested, so I am holding off on that until things worsen).
    - Surgeon said he could operate on neck cancer and could do biopsy, but he clearly felt that neither was worth the risk/inconvenience. Biopsy recovery would be longer than thyroidectomy was... plus lung nodes trump the neck ones as the bigger issue.
    - Nuc Med guy says I131 no longer making a difference so that's not adviced. He's acting as objective 3rd party right now (which helps).

    NOTE: I have learned that every doctor tends toward what they know how to do (meds or chemo, surgery, I131, etc).

    So, I am doing what the doctor calls "watchful waiting". While Tg levels stay low, I will just take life 3 months at a time (interval between CT scans). When Tg shows s increase beginning then I will start taking Nexavar to extend my time as long as I can. My Nuc Med doctor is advising another patient (60 yr old woman with same lung met situation as me). She has been taking quarterly CT scans for 12 years and without nodules growing at all! I want her outcome I think...

    My question to the group is what kind of timeline can we expect to have when we're at Stage IV PTC. I saw one old study from 2002 saying 5 yr survival for Stage IV was 46% and 10 yr survival was 40%. I am really hoping not to be facing a 5 year horizon here because my youngest daughter won't graduate high school for another 7 years...

    Keep sharing. I could send research I've gathered if anyone wants it.

    Tom

    tom - how old were u when diagnosed? and...
    Were u clear from 2003 to 2010?
  • tgreene1008
    tgreene1008 Member Posts: 8
    miladyx said:

    tom - how old were u when diagnosed? and...
    Were u clear from 2003 to 2010?

    Hi Miladyx
    I was about 40 when I was diagnosed in 2003 and was considered clear between 2003 and 2010. If I remember right, it was me finding some suspicious lumps in my neck both times that lead to us finding it. My Tg between 1.5 to 5.5 from 2006 to 2009, which with the lump I felt gave doctors enough reason to do an MRI and find some canx lymph nodes.

    I'm 47 next month.
    Tom
  • miladyx
    miladyx Member Posts: 85

    Hi Miladyx
    I was about 40 when I was diagnosed in 2003 and was considered clear between 2003 and 2010. If I remember right, it was me finding some suspicious lumps in my neck both times that lead to us finding it. My Tg between 1.5 to 5.5 from 2006 to 2009, which with the lump I felt gave doctors enough reason to do an MRI and find some canx lymph nodes.

    I'm 47 next month.
    Tom

    hi tom
    I am sorry you are doing through this the reason if i asked if you were clean for a period is because i awas wondering how long the lung nodules have been there? did you have chest cts or a whole body pet scan before 2010? there is a chance they have been there from the beginning?

    also was there any spread in the begiining in 2003 that required multiple RaI? that may also explainwhy rai is not effective now. i heard the more it is used, it loses effectiveness.

    would be interested in looking into either md anderson or memorial sloan?

    on another note, i also have a friend whose lung nodules have been stable for 7 years so far and going strong.
  • tgreene1008
    tgreene1008 Member Posts: 8
    miladyx said:

    hi tom
    I am sorry you are doing through this the reason if i asked if you were clean for a period is because i awas wondering how long the lung nodules have been there? did you have chest cts or a whole body pet scan before 2010? there is a chance they have been there from the beginning?

    also was there any spread in the begiining in 2003 that required multiple RaI? that may also explainwhy rai is not effective now. i heard the more it is used, it loses effectiveness.

    would be interested in looking into either md anderson or memorial sloan?

    on another note, i also have a friend whose lung nodules have been stable for 7 years so far and going strong.

    An Insightful question
    I really don't know how long the lung mets have been present, because the first time they did a CT scan beyond the neck was this year. So, they could have been there for a long time (or not). I did have RAI treatment in 2003 with no apparent uptake and then again in 2010 with no apparent uptake, but the fact that my Tg went down below 1.5 through 2006 tells me that maybe they weren't there then (or if so they were microscopic).

    I am glad to hear of your friend's stable results. That's 2 good data points for me, plus I got an online doctor at MedHelp.com saying that 10-yr survival is probably 50% at my age.

    I am in CA - where are MD Anderson and Memorial Sloan located?

    Thanks for all the info.
  • miladyx
    miladyx Member Posts: 85

    An Insightful question
    I really don't know how long the lung mets have been present, because the first time they did a CT scan beyond the neck was this year. So, they could have been there for a long time (or not). I did have RAI treatment in 2003 with no apparent uptake and then again in 2010 with no apparent uptake, but the fact that my Tg went down below 1.5 through 2006 tells me that maybe they weren't there then (or if so they were microscopic).

    I am glad to hear of your friend's stable results. That's 2 good data points for me, plus I got an online doctor at MedHelp.com saying that 10-yr survival is probably 50% at my age.

    I am in CA - where are MD Anderson and Memorial Sloan located?

    Thanks for all the info.

    md anderson is texas and
    Memorial sloan is nyc, some of top thyroid cancer research facilities.

    One important thing to know whether the lung nodules "lit up" on the pet scan as opposed to just showing up on ct. If they light up on pet, that also explains why they don't take up the radiation.

    Did you many many lymph nodes involved initially? Also tg was lower than 1.5 or zero until 06?
  • alapah
    alapah Member Posts: 287

    An Insightful question
    I really don't know how long the lung mets have been present, because the first time they did a CT scan beyond the neck was this year. So, they could have been there for a long time (or not). I did have RAI treatment in 2003 with no apparent uptake and then again in 2010 with no apparent uptake, but the fact that my Tg went down below 1.5 through 2006 tells me that maybe they weren't there then (or if so they were microscopic).

    I am glad to hear of your friend's stable results. That's 2 good data points for me, plus I got an online doctor at MedHelp.com saying that 10-yr survival is probably 50% at my age.

    I am in CA - where are MD Anderson and Memorial Sloan located?

    Thanks for all the info.

    MD Anderson is in
    Houston, Texas. One of the thyroid docs/researchers I've heard referenced most for MD Anderson is Dr. Steven Sherman.
  • veronica57
    veronica57 Member Posts: 98

    My similar experience with Stage IV PTC and lung nodules
    It is so encouraging to find a discussion thread that touched on situations like mine. I have a great nuclear medicine guy who is acting as my primary physician for this cancer even though I no longer get any results from raI131. I have talked with chest surgeon, oncologist, Nuc Med doc and head-neck surgeon. Let me tell you what I have learned in case it helps. My situation is Tg level at 6, up from 5 at start of the year. I had thyroidectomy in 2003 and radical neck dissection in early 2010 to take a lot of canx lymph nodes. No uptake on raI131 treatment in April, but I had a PET/CT scan in May when my Thyroglobulin had only gone down to 5.4. PET/CT scan confirmed 2 nodes under my clavicle and numerous nodes in my lungs (under 6mm in size). Re-scan (CT) in Aug shows lung nodules more clearly and Tg at 6.2. I have normal lifestyle today.

    Guidance I have gotten:
    - Oncologist in April wanted to start trial Nexavar right away (promising clinical trials so far with positive results delaying tumor growth for 60%ish of people, currently in Phase IV trial). Chemo is not an option as it rarely works. External beam radiation can't be used on lungs. Nexavar (and other trial drugs) only work for a period of time in many people tested, so I am holding off on that until things worsen).
    - Surgeon said he could operate on neck cancer and could do biopsy, but he clearly felt that neither was worth the risk/inconvenience. Biopsy recovery would be longer than thyroidectomy was... plus lung nodes trump the neck ones as the bigger issue.
    - Nuc Med guy says I131 no longer making a difference so that's not adviced. He's acting as objective 3rd party right now (which helps).

    NOTE: I have learned that every doctor tends toward what they know how to do (meds or chemo, surgery, I131, etc).

    So, I am doing what the doctor calls "watchful waiting". While Tg levels stay low, I will just take life 3 months at a time (interval between CT scans). When Tg shows s increase beginning then I will start taking Nexavar to extend my time as long as I can. My Nuc Med doctor is advising another patient (60 yr old woman with same lung met situation as me). She has been taking quarterly CT scans for 12 years and without nodules growing at all! I want her outcome I think...

    My question to the group is what kind of timeline can we expect to have when we're at Stage IV PTC. I saw one old study from 2002 saying 5 yr survival for Stage IV was 46% and 10 yr survival was 40%. I am really hoping not to be facing a 5 year horizon here because my youngest daughter won't graduate high school for another 7 years...

    Keep sharing. I could send research I've gathered if anyone wants it.

    Tom

    Hi Tom
    It seems we've had all the same experiences except, I'm already taking nexavar. I already had a lung biopsy also. My onco told me this cancer will never go away. He says the nexavar will hopefully stop the growth of new nodules that are growing in my lungs. I will be 53 on the 4th of Sept., and I want more than 5 years also. I have two grandchildren, 8 and 5 and I want to see them graduate high school. They also have to make me a great grandma and my daughter a grandma:)
  • tgreene1008
    tgreene1008 Member Posts: 8
    miladyx said:

    md anderson is texas and
    Memorial sloan is nyc, some of top thyroid cancer research facilities.

    One important thing to know whether the lung nodules "lit up" on the pet scan as opposed to just showing up on ct. If they light up on pet, that also explains why they don't take up the radiation.

    Did you many many lymph nodes involved initially? Also tg was lower than 1.5 or zero until 06?

    Initially had 2 dozen lymph nodes removed ('03) and 5-6 had canx
    Then in 2010, had 50ish lymph niodes removed and 3 had canx. Lung mets do not show up yet on PET because they are too small, but I have two leasions about 6-8 mm in size under my clavicle that did light up in my first PET scan (2010).

    My Tg was low until 2006 when it began trending up from 1.6 to current of 6.4. it's still relatively low but I want to be on top of it obviously.
  • tgreene1008
    tgreene1008 Member Posts: 8

    Hi Tom
    It seems we've had all the same experiences except, I'm already taking nexavar. I already had a lung biopsy also. My onco told me this cancer will never go away. He says the nexavar will hopefully stop the growth of new nodules that are growing in my lungs. I will be 53 on the 4th of Sept., and I want more than 5 years also. I have two grandchildren, 8 and 5 and I want to see them graduate high school. They also have to make me a great grandma and my daughter a grandma:)

    OK, this is wierd. I turn 47 on Sept 4th!
    Let's see how many of those Sept 4th celebrations we can keep having!!!!

    Can you tell me whether the biopsy provided any value for you (lookig back on it)>

    Also, what was your Thyroglobulin level when you started Naxavar... I am trying to get a sense when that "on-ramp" onto drug therapy is for everyone. My onco wanted to start it 3 months ago, but other docs saying to wait since I am still at low Tg levels.
  • veronica57
    veronica57 Member Posts: 98

    OK, this is wierd. I turn 47 on Sept 4th!
    Let's see how many of those Sept 4th celebrations we can keep having!!!!

    Can you tell me whether the biopsy provided any value for you (lookig back on it)>

    Also, what was your Thyroglobulin level when you started Naxavar... I am trying to get a sense when that "on-ramp" onto drug therapy is for everyone. My onco wanted to start it 3 months ago, but other docs saying to wait since I am still at low Tg levels.

    Tom
    That is wierd:)I hope we have many more Sept. 4th celebrations. The biopsy proved that the cancer in my lungs was still thyroid cancer. The doctors had begun to think that it was some other type of cancer because I had new nodules growing in my lungs and the existing ones were getting bigger. I don't know what my tg levels were. But I wasn't getting uptake from the iodine treatments except in my neck. My docs wanted to wait too. But I insisted on some type of treatment because I went to the ER not able to breathe, and after looking at my previous ER report, they said I had new nodules. They said my lungs were full of nodules. The surgeon that performed the biopsy confirmed that also. He told me that my onco needed to start treatment.

    The nexavar is a pain though. The doctor reduced my dosage of the nexevar to one 200 mg. tablet. But it's still hurting my feet, making me barely able to walk. The Nurse Practitioner took me off of them again today until I go back on Tuesday.
  • grateful1
    grateful1 Member Posts: 80 Member
    alapah said:

    lung mets
    veronica, i just came across this thread - i have lung mets too, as it turns out. from what i have read it's difficult to treat but there are folks using chemo drugs for lung mets that are RAI resistant. I'm assuming that is what you are on? nexavar or sutent? i think a biopsy is the next step for me. it's pretty scary. there seem to be a number of clinical trials for chemo drugs for thyroid cancer mets. it's not that common to have lung mets but then again it's not unheard of. why were your docs so baffled/surprised? just curious.
    I do hope you are doing well and getting favorable response from the drugs.

    to lung mets-sutent
    my integrative oncologist wants me to take sutent. i have a muscle disease--and muscle damage is a side effect so i am leery. do you know anyone who took it. i have a large tumor on my life side with constant pain. they can't remove it because it is too close to the aorta and vital structures. thanks and good luck
  • veronica57
    veronica57 Member Posts: 98
    grateful1 said:

    to lung mets-sutent
    my integrative oncologist wants me to take sutent. i have a muscle disease--and muscle damage is a side effect so i am leery. do you know anyone who took it. i have a large tumor on my life side with constant pain. they can't remove it because it is too close to the aorta and vital structures. thanks and good luck

    Hi grateful
    I'm not familiar with sutent. But if it causes muscle damage, I don't think I would try it. The nexavar keeps causing extreme pain in my feet. I'm afraid it's damaging the nerves in my feet.

    Did you ever try a thoracic surgeon? They do tedious surgeries such as with vital organs. I wish you the best.
  • An Insightful question
    I really don't know how long the lung mets have been present, because the first time they did a CT scan beyond the neck was this year. So, they could have been there for a long time (or not). I did have RAI treatment in 2003 with no apparent uptake and then again in 2010 with no apparent uptake, but the fact that my Tg went down below 1.5 through 2006 tells me that maybe they weren't there then (or if so they were microscopic).

    I am glad to hear of your friend's stable results. That's 2 good data points for me, plus I got an online doctor at MedHelp.com saying that 10-yr survival is probably 50% at my age.

    I am in CA - where are MD Anderson and Memorial Sloan located?

    Thanks for all the info.

    Noticed your location - I am new to the CSN
    The best thyroid cancer specialists on the West Coast are at UCSF (University of California - San Francisco). UCSF is a top 10 ranked hospital. They have a full set of specialists from head and neck, internal medicine, radiation / chemo, etc. who all have experience with the various forms of thyroid cancer. I have medullary, not papillary, and UCSF has kept me alive 17+years. For those with medullary 17+ years is on the right side of the survival bell curve. When I was diagnosed, people who had Medullary had a life expectancy of only 5 years. Though it is a bit higher now (btw 5 and 10). Bottom line for me is I have lymph system involvement, liver involvement, bone involvement and full lung involvement. My blood SO2 is down to an average of 94%. I am even moving to the SF area because I won't be able to fly much longer.

    While I don't know much about them, UCLA also had a highly rated cancer center (the other CA top 10 ranked). I don't know their experience in thyroid cancer. For my money I would stick with UCSF. They are up to date on everything mentioned on these boards; radiation, iodine uptakes, ablation surgery (they were a clinical trial site for liver tumors and therefore I was the 36th person in the world to get liver ablation for my metastatic disease), Nexavar/Sorafenib and even some trials not mentioned such as the Zactima trial (going through FDA approval process right now). Cheaper than flying to Texas (Anderson), St. Louis (Barnes), or Baltimore (John Hopkins), etc.

    Sorry this message is so late but I just joined the CSN.
  • fefa5
    fefa5 Member Posts: 3

    My similar experience with Stage IV PTC and lung nodules
    It is so encouraging to find a discussion thread that touched on situations like mine. I have a great nuclear medicine guy who is acting as my primary physician for this cancer even though I no longer get any results from raI131. I have talked with chest surgeon, oncologist, Nuc Med doc and head-neck surgeon. Let me tell you what I have learned in case it helps. My situation is Tg level at 6, up from 5 at start of the year. I had thyroidectomy in 2003 and radical neck dissection in early 2010 to take a lot of canx lymph nodes. No uptake on raI131 treatment in April, but I had a PET/CT scan in May when my Thyroglobulin had only gone down to 5.4. PET/CT scan confirmed 2 nodes under my clavicle and numerous nodes in my lungs (under 6mm in size). Re-scan (CT) in Aug shows lung nodules more clearly and Tg at 6.2. I have normal lifestyle today.

    Guidance I have gotten:
    - Oncologist in April wanted to start trial Nexavar right away (promising clinical trials so far with positive results delaying tumor growth for 60%ish of people, currently in Phase IV trial). Chemo is not an option as it rarely works. External beam radiation can't be used on lungs. Nexavar (and other trial drugs) only work for a period of time in many people tested, so I am holding off on that until things worsen).
    - Surgeon said he could operate on neck cancer and could do biopsy, but he clearly felt that neither was worth the risk/inconvenience. Biopsy recovery would be longer than thyroidectomy was... plus lung nodes trump the neck ones as the bigger issue.
    - Nuc Med guy says I131 no longer making a difference so that's not adviced. He's acting as objective 3rd party right now (which helps).

    NOTE: I have learned that every doctor tends toward what they know how to do (meds or chemo, surgery, I131, etc).

    So, I am doing what the doctor calls "watchful waiting". While Tg levels stay low, I will just take life 3 months at a time (interval between CT scans). When Tg shows s increase beginning then I will start taking Nexavar to extend my time as long as I can. My Nuc Med doctor is advising another patient (60 yr old woman with same lung met situation as me). She has been taking quarterly CT scans for 12 years and without nodules growing at all! I want her outcome I think...

    My question to the group is what kind of timeline can we expect to have when we're at Stage IV PTC. I saw one old study from 2002 saying 5 yr survival for Stage IV was 46% and 10 yr survival was 40%. I am really hoping not to be facing a 5 year horizon here because my youngest daughter won't graduate high school for another 7 years...

    Keep sharing. I could send research I've gathered if anyone wants it.

    Tom

    It was like reading my own history
    I was also diagnosed in 2003 (age 22 & during pregnancy) and now find myself with innumerable lung mets. I had my tt in 2003 along with a partial neck dissection. (6 of 7 involved) I did have uptake and was followed thereafter. Feb 2009 my tg level was up to 5.9. CT showed lung mets and a few in my old thyroid bed. I had a 2nd round of RAI and post scan did show uptake in all areas. However I am over a year post treatment and my tg level in Aug was 6.1 and as of this week is 6.6 (age 30...a fellow September birthday)

    I saw on here that other patients were suggesting MD Anderson. That's actually where I just went this week. My guidance received has been the same as you. I'm not considered to be stage IV strictly because of my lower age level. I did however just find out that I have a slightly more aggressive form because mine if poorly differentiated. Not something I heard up until now after MD Anderson reviewed my original pathology slides from 2003. This is probably why, even though I show uptake, the RAI treatment didn't work. From what I can tell these cells don't typically respond as well. If anyone else out there has the same kind and knows more than me please fill me in.

    Watchful waiting...how do you feel about that? Even after hearing all of their comforting words like "slow" "stable" "young" I still find myself questioning whether there is a more aggressive approach. I found a Dr. Kenneth Ain that seems to be researching higher doses needed of RAI for it to be effective for lung mets. For instance the standard highest dose would be around 200 and he says he's gone as high as 600. (saying there is no such thing as a lifetime limit of RAI) He also said there are meds you can take to help hold the RAI "in" longer for it to be more effective. Of course this is all research I did prior to hearing about the poorly differentiated info and may no longer be relevant in my case.

    Back to what you were saying. My doctor doesn't want me back in for 6 months and I think I'd feel more comfortable with every 3 months like you are doing. I saw the same survival rate research you did and don't know what to make of it and try my best not to think of it. I just got married a month ago and I have a 7 year old son.

    To share a good story. My new doctor at MD Anderson says she is currently monitoring a patient with lung mets that has been in the "watchful waiting" stage for 15 years.

    I would love any research you've collected if you want to send a personal message. I'd be happy to swap with you.

    Fey
  • veronica57
    veronica57 Member Posts: 98
    fefa5 said:

    It was like reading my own history
    I was also diagnosed in 2003 (age 22 & during pregnancy) and now find myself with innumerable lung mets. I had my tt in 2003 along with a partial neck dissection. (6 of 7 involved) I did have uptake and was followed thereafter. Feb 2009 my tg level was up to 5.9. CT showed lung mets and a few in my old thyroid bed. I had a 2nd round of RAI and post scan did show uptake in all areas. However I am over a year post treatment and my tg level in Aug was 6.1 and as of this week is 6.6 (age 30...a fellow September birthday)

    I saw on here that other patients were suggesting MD Anderson. That's actually where I just went this week. My guidance received has been the same as you. I'm not considered to be stage IV strictly because of my lower age level. I did however just find out that I have a slightly more aggressive form because mine if poorly differentiated. Not something I heard up until now after MD Anderson reviewed my original pathology slides from 2003. This is probably why, even though I show uptake, the RAI treatment didn't work. From what I can tell these cells don't typically respond as well. If anyone else out there has the same kind and knows more than me please fill me in.

    Watchful waiting...how do you feel about that? Even after hearing all of their comforting words like "slow" "stable" "young" I still find myself questioning whether there is a more aggressive approach. I found a Dr. Kenneth Ain that seems to be researching higher doses needed of RAI for it to be effective for lung mets. For instance the standard highest dose would be around 200 and he says he's gone as high as 600. (saying there is no such thing as a lifetime limit of RAI) He also said there are meds you can take to help hold the RAI "in" longer for it to be more effective. Of course this is all research I did prior to hearing about the poorly differentiated info and may no longer be relevant in my case.

    Back to what you were saying. My doctor doesn't want me back in for 6 months and I think I'd feel more comfortable with every 3 months like you are doing. I saw the same survival rate research you did and don't know what to make of it and try my best not to think of it. I just got married a month ago and I have a 7 year old son.

    To share a good story. My new doctor at MD Anderson says she is currently monitoring a patient with lung mets that has been in the "watchful waiting" stage for 15 years.

    I would love any research you've collected if you want to send a personal message. I'd be happy to swap with you.

    Fey

    Hi Fey
    I'm glad that you are post treatment for over a year and your tg levels are doing good. I'm glad you made it through your pregnacy also.

    I'm being treated with nexevar and waiting to see if it is working or not. The doctor had to take me off of it several times and now, I'm taking one pill every other day. I go every other week for blood work. I was suppose to go yesterday to see the onco. But I was so tired and basically feeling low. So I canceled.

    I understand what you mean about the comforting words. Questions still remain in the back of your head. My doctor said to me the last time I was there, " You were so anxious to get on this medication. Now this is what you have to go through." Of course I was anxious. My mets nodules were getting bigger and multiplying. The doctors diagnose. They don't feel the anxiety and fear that we feel.

    I'm in Va. and I don't have the finances to travel. So what ever you find out from MD Anderson and other research, please fill me in.
    Best wishes,

    Veronica
  • tweety1234
    tweety1234 Member Posts: 1

    Hi Miladyx
    I was about 40 when I was diagnosed in 2003 and was considered clear between 2003 and 2010. If I remember right, it was me finding some suspicious lumps in my neck both times that lead to us finding it. My Tg between 1.5 to 5.5 from 2006 to 2009, which with the lump I felt gave doctors enough reason to do an MRI and find some canx lymph nodes.

    I'm 47 next month.
    Tom

    hi
    hi Tom.....i'am a thyroid cancer patient diagnosed 2 months ago sept. and august this yaear i am 41 years old...i m need some advice from people who been there....
    thanks
  • PATIENTS_FRIEND
    PATIENTS_FRIEND Member Posts: 1
    MY FRIEND HAS THYROID CANCER (I TYPE IN CAPITALS- VISION) )
    CAPITALS ONLY MEANT FOR NEED TO READ LARGE PRINT ..VISION PROBLEM....THANKS FOR UNDERSTANDING ..EXCUSE WORD ERRORS

    MARCH 8TH 2012

    I AM BRINGING MY FRIEND TO SLOAN KETTERING TODAY , SHE IS IN STAGE 4 PAPILLARY CANCER. SHE HAD THYROID SURGERY IN 2003 AND NOW IT SPREAD TO HER LUNGS.

    SHE HAD A CAT SCAN ON MONDAY AND WE ARE GOING THIS MORNING TO GET THE UPDATE ON HER CONDITION .

    SHE HAS BEEN TAKING "SYNTHROID " SINCE 2006 POST SURGERY, MABE THE DOCTOR WILL PRISCRIBE ADITIONAL TRAIL DRUG TODAY ?

    MY FRIAND THE PATIENT IS 63 YRS OLD, RETIRED AND WANTS TO SPEND THE REST OF HER LIFE TRAVELING THE WORLD , BUT HAS FOUND OUT WHEN YOU ARE TAKEN THE NEW TRIAL DRUGS THAT IN STAGE 2/3 TRIALS THEY ARE NOTED YO CAUSE FATIGUE AND OTHER SIDE AFFECTS...(NO LOG TRIPS ?) IS THIS TRUE ?

    NODULES ON HER LUNGS ARE A LITTLE MORE THAN A CENTIMTRE, AND SHE IS IN DENIAL OF REALIZTION ..AND DOES NOT WANT TO BE PART OF A BLOGG...SO I AM TAKING HER PLACE TO NETWORK WITH THYROID SURVIVORS SEEKING TO EXCHANGE INFO RE: QUALITY OF LIFE VS NOT TAKENING THE RECOMENDED TRAIL DRUG AT ALL..THAT WILL HOPFULLY STOP THE NODULE GROWTH ..

    QUESTION :DOES ANYBODY KNOW OF A DRUG GOING THROUGH CLINICAL STUDY THAT DOES NOT CAUSE THE PATIENT TO BE TIRED..?
    QUESTION :IS THERE A TRIAL DRUG THAT REVERSES NODULE GROWTH ?
    QUESTION : IS THERE ANY INFORMATION YOU CAN RENDER TO ME REGARDING MY FRIENDS STAGE 4 CONDITION AND HOW TO OVER COME THE SIDE AFFECTS ONCE SHE IS ON A REGIMENTED TRIAL DRUG PROGRAM THAT CAUSES FATIGUE + OTHER SIDE AFFECTS..
    DIET , ETC.

    FINALLY , SHE DOES NOT WANT TO GO THROUGH THE REST OF HER LIFE IN FATIGUE...FROM THE TRAIL DRUG ..SO I NEED TRUE LIVING INPUT FROM ANYONE..

    SHE IS CONSIDERING TO AVOID THE TRIAL DRUG PROGRAM ..AND I WANT TO COLLECT AS MUCH FEED BACK SO I CAN BE REALISTIC IN CONVEYING THE MESSAGE OF THE DRUG PROGAM VS HER DECISION...WHATS MORE... HER TRIAL DRUG CHOICES ARE BEING DISCLOSED TODAY WHILE IN THE DOCTORS OFFICE... PLEASE REPLY WITH INPUT FOR MY TO RENDER TO HER..

    I KNOW I AM ASKING FOR A MIRACLE AT THIS POINT IN CANCER CLINICAL TRIALS AND RESEARCH STUDIES .. BUT I LEAVE NO STONE UNTURNED..

    I THANK EVERYONE FOR READING THIS BLOGG AND WISH / PRAY FOR THE DAY WILL COME WHEN THAT MAJOR BREAK THOUGH IS ANNOUNCED THAT STAGE 4 PATIENTS CAN TAKE THE "NEW" MEDICATION AND GO THROUGH A NORMAL SENIOR CITIZEN LIFE CYCLE
    HAVING NO OR MINIMAL LOSS OF ENERGY AND PAIN...I WAIT TO HEAR THE DOCTORS UPDATE TODAY ..MARCH 8TH 2012

    PATIENTS FRIEND
  • alapah
    alapah Member Posts: 287

    MY FRIEND HAS THYROID CANCER (I TYPE IN CAPITALS- VISION) )
    CAPITALS ONLY MEANT FOR NEED TO READ LARGE PRINT ..VISION PROBLEM....THANKS FOR UNDERSTANDING ..EXCUSE WORD ERRORS

    MARCH 8TH 2012

    I AM BRINGING MY FRIEND TO SLOAN KETTERING TODAY , SHE IS IN STAGE 4 PAPILLARY CANCER. SHE HAD THYROID SURGERY IN 2003 AND NOW IT SPREAD TO HER LUNGS.

    SHE HAD A CAT SCAN ON MONDAY AND WE ARE GOING THIS MORNING TO GET THE UPDATE ON HER CONDITION .

    SHE HAS BEEN TAKING "SYNTHROID " SINCE 2006 POST SURGERY, MABE THE DOCTOR WILL PRISCRIBE ADITIONAL TRAIL DRUG TODAY ?

    MY FRIAND THE PATIENT IS 63 YRS OLD, RETIRED AND WANTS TO SPEND THE REST OF HER LIFE TRAVELING THE WORLD , BUT HAS FOUND OUT WHEN YOU ARE TAKEN THE NEW TRIAL DRUGS THAT IN STAGE 2/3 TRIALS THEY ARE NOTED YO CAUSE FATIGUE AND OTHER SIDE AFFECTS...(NO LOG TRIPS ?) IS THIS TRUE ?

    NODULES ON HER LUNGS ARE A LITTLE MORE THAN A CENTIMTRE, AND SHE IS IN DENIAL OF REALIZTION ..AND DOES NOT WANT TO BE PART OF A BLOGG...SO I AM TAKING HER PLACE TO NETWORK WITH THYROID SURVIVORS SEEKING TO EXCHANGE INFO RE: QUALITY OF LIFE VS NOT TAKENING THE RECOMENDED TRAIL DRUG AT ALL..THAT WILL HOPFULLY STOP THE NODULE GROWTH ..

    QUESTION :DOES ANYBODY KNOW OF A DRUG GOING THROUGH CLINICAL STUDY THAT DOES NOT CAUSE THE PATIENT TO BE TIRED..?
    QUESTION :IS THERE A TRIAL DRUG THAT REVERSES NODULE GROWTH ?
    QUESTION : IS THERE ANY INFORMATION YOU CAN RENDER TO ME REGARDING MY FRIENDS STAGE 4 CONDITION AND HOW TO OVER COME THE SIDE AFFECTS ONCE SHE IS ON A REGIMENTED TRIAL DRUG PROGRAM THAT CAUSES FATIGUE + OTHER SIDE AFFECTS..
    DIET , ETC.

    FINALLY , SHE DOES NOT WANT TO GO THROUGH THE REST OF HER LIFE IN FATIGUE...FROM THE TRAIL DRUG ..SO I NEED TRUE LIVING INPUT FROM ANYONE..

    SHE IS CONSIDERING TO AVOID THE TRIAL DRUG PROGRAM ..AND I WANT TO COLLECT AS MUCH FEED BACK SO I CAN BE REALISTIC IN CONVEYING THE MESSAGE OF THE DRUG PROGAM VS HER DECISION...WHATS MORE... HER TRIAL DRUG CHOICES ARE BEING DISCLOSED TODAY WHILE IN THE DOCTORS OFFICE... PLEASE REPLY WITH INPUT FOR MY TO RENDER TO HER..

    I KNOW I AM ASKING FOR A MIRACLE AT THIS POINT IN CANCER CLINICAL TRIALS AND RESEARCH STUDIES .. BUT I LEAVE NO STONE UNTURNED..

    I THANK EVERYONE FOR READING THIS BLOGG AND WISH / PRAY FOR THE DAY WILL COME WHEN THAT MAJOR BREAK THOUGH IS ANNOUNCED THAT STAGE 4 PATIENTS CAN TAKE THE "NEW" MEDICATION AND GO THROUGH A NORMAL SENIOR CITIZEN LIFE CYCLE
    HAVING NO OR MINIMAL LOSS OF ENERGY AND PAIN...I WAIT TO HEAR THE DOCTORS UPDATE TODAY ..MARCH 8TH 2012

    PATIENTS FRIEND

    i have lung mets too...
    You're a good friend to be helping out and going to appointments. I am stage 4 with lung mets and aggressive growth (i am 45yrs old). It sounds like your friend's mets are growing much slower than mine - a good thing.

    Of course, every case of cancer is different and I would not try to tell someone else what they should do. Thyroid cancer lung mets have no effective treatment, at least not in terms of killing off the cancer. Some drugs, for some people can make them shrink and/or keep nodules from growing (or growing quickly), for years. In many cases, a person can live with small nodules for decades with no ill effects/side effects. Sometimes it will depend on where the nodules are located - whether they are blocking the airway for example.

    I have only been on one chemo type drug so far for my lung nodules - it was Nexavar/Sorafenib. For many with thyca, this drug can shrink or stabilize nodules in the lung. It does have side effects, most notably something called hand/foot syndrome, thickening of calluses on the feet, gastrointestinal problems, thinning hair, high blood pressure, heart palpitations, etc. I had some GI issuse and hardening of calluses and thinning hair which started to grow back after about three months. I had no heart issues but had EKGs done every two weeks for the first six weeks. Also started out with bloodwork every week, which eventually was every two weeks due to the stability i experienced. I also experienced fatigue on this drug, but it was not too bad. I traveled while on this drug. A patient on such drugs needs to be careful to avoid certain foods (they gave me a list), avoid salad bars for example, wash hands often, stay away from those with colds or flu. Nexavar did not seem to affect my cell counts so travel was not too risky. Other drugs used for thyca in lungs may require more vigilance re avoiding crowds, etc, which may impact travel. The intervals required for blood tests may be challenging but I suspect one could get blood draws done while traveling.

    I am about to start a new drug because Nexavar was not effective for me. The new one often affects red and white cell counts. Fatigue has also been a noted side effect. We shall see. I can get it off trial which is good.

    Nexavar is in a family of drugs called Kinase Inhibitors which target cell growth in some cancers. Eventually cancers figure out how to outsmart them, so the drugs may only work for a time - but for some this is YEARS. I have heard from people who benefitted for 5 plus years on it.

    It is possible to obtain some of the treatments off trial but others require regular visits to a cancer center, particularly if part of a trial. I live in Alaska so my docs are trying to use off trial drugs as a first line but I know I will need to move to the Lower 48 eventually to be involved in trials.

    Each patient has to determine for his or herself what is an acceptable trade off between treatment and no treatment. Only the individual can rate what tips into unacceptable changes in quality of life.

    That said, my personal experience makes me think that it is worth trying chemo meds and seeing how they affect an individual, then make a decision as to whether their side effects outweigh their benefits. For example, I only experienced a fraction of the known side effects of Nexavar, and none were awful, just inconvenient at times. I continued to work a full 40 hrs a week while on it and just found myself needing a bit more rest by the weekend.

    A good doctor will provide answers to all of your questions. Memorial Sloane Kettering is supposed to be a very fine place for thyroid cancer patients (they do trials and research on it). I have not been there, but have seen specialists at both Mayo Clinic in Rochester, MN and MD Anderson Cancer Center in Houston, TX. Johns Hopkins is also supposed to be very good on thyca. UPenn in Philadelphia is also involved in trials. I believe you can search current trials on the National Institutes of Health website.

    Very best to your friend.
    eileen
  • alapah
    alapah Member Posts: 287

    MY FRIEND HAS THYROID CANCER (I TYPE IN CAPITALS- VISION) )
    CAPITALS ONLY MEANT FOR NEED TO READ LARGE PRINT ..VISION PROBLEM....THANKS FOR UNDERSTANDING ..EXCUSE WORD ERRORS

    MARCH 8TH 2012

    I AM BRINGING MY FRIEND TO SLOAN KETTERING TODAY , SHE IS IN STAGE 4 PAPILLARY CANCER. SHE HAD THYROID SURGERY IN 2003 AND NOW IT SPREAD TO HER LUNGS.

    SHE HAD A CAT SCAN ON MONDAY AND WE ARE GOING THIS MORNING TO GET THE UPDATE ON HER CONDITION .

    SHE HAS BEEN TAKING "SYNTHROID " SINCE 2006 POST SURGERY, MABE THE DOCTOR WILL PRISCRIBE ADITIONAL TRAIL DRUG TODAY ?

    MY FRIAND THE PATIENT IS 63 YRS OLD, RETIRED AND WANTS TO SPEND THE REST OF HER LIFE TRAVELING THE WORLD , BUT HAS FOUND OUT WHEN YOU ARE TAKEN THE NEW TRIAL DRUGS THAT IN STAGE 2/3 TRIALS THEY ARE NOTED YO CAUSE FATIGUE AND OTHER SIDE AFFECTS...(NO LOG TRIPS ?) IS THIS TRUE ?

    NODULES ON HER LUNGS ARE A LITTLE MORE THAN A CENTIMTRE, AND SHE IS IN DENIAL OF REALIZTION ..AND DOES NOT WANT TO BE PART OF A BLOGG...SO I AM TAKING HER PLACE TO NETWORK WITH THYROID SURVIVORS SEEKING TO EXCHANGE INFO RE: QUALITY OF LIFE VS NOT TAKENING THE RECOMENDED TRAIL DRUG AT ALL..THAT WILL HOPFULLY STOP THE NODULE GROWTH ..

    QUESTION :DOES ANYBODY KNOW OF A DRUG GOING THROUGH CLINICAL STUDY THAT DOES NOT CAUSE THE PATIENT TO BE TIRED..?
    QUESTION :IS THERE A TRIAL DRUG THAT REVERSES NODULE GROWTH ?
    QUESTION : IS THERE ANY INFORMATION YOU CAN RENDER TO ME REGARDING MY FRIENDS STAGE 4 CONDITION AND HOW TO OVER COME THE SIDE AFFECTS ONCE SHE IS ON A REGIMENTED TRIAL DRUG PROGRAM THAT CAUSES FATIGUE + OTHER SIDE AFFECTS..
    DIET , ETC.

    FINALLY , SHE DOES NOT WANT TO GO THROUGH THE REST OF HER LIFE IN FATIGUE...FROM THE TRAIL DRUG ..SO I NEED TRUE LIVING INPUT FROM ANYONE..

    SHE IS CONSIDERING TO AVOID THE TRIAL DRUG PROGRAM ..AND I WANT TO COLLECT AS MUCH FEED BACK SO I CAN BE REALISTIC IN CONVEYING THE MESSAGE OF THE DRUG PROGAM VS HER DECISION...WHATS MORE... HER TRIAL DRUG CHOICES ARE BEING DISCLOSED TODAY WHILE IN THE DOCTORS OFFICE... PLEASE REPLY WITH INPUT FOR MY TO RENDER TO HER..

    I KNOW I AM ASKING FOR A MIRACLE AT THIS POINT IN CANCER CLINICAL TRIALS AND RESEARCH STUDIES .. BUT I LEAVE NO STONE UNTURNED..

    I THANK EVERYONE FOR READING THIS BLOGG AND WISH / PRAY FOR THE DAY WILL COME WHEN THAT MAJOR BREAK THOUGH IS ANNOUNCED THAT STAGE 4 PATIENTS CAN TAKE THE "NEW" MEDICATION AND GO THROUGH A NORMAL SENIOR CITIZEN LIFE CYCLE
    HAVING NO OR MINIMAL LOSS OF ENERGY AND PAIN...I WAIT TO HEAR THE DOCTORS UPDATE TODAY ..MARCH 8TH 2012

    PATIENTS FRIEND

    sorry dupe posting
  • alapah
    alapah Member Posts: 287

    MY FRIEND HAS THYROID CANCER (I TYPE IN CAPITALS- VISION) )
    CAPITALS ONLY MEANT FOR NEED TO READ LARGE PRINT ..VISION PROBLEM....THANKS FOR UNDERSTANDING ..EXCUSE WORD ERRORS

    MARCH 8TH 2012

    I AM BRINGING MY FRIEND TO SLOAN KETTERING TODAY , SHE IS IN STAGE 4 PAPILLARY CANCER. SHE HAD THYROID SURGERY IN 2003 AND NOW IT SPREAD TO HER LUNGS.

    SHE HAD A CAT SCAN ON MONDAY AND WE ARE GOING THIS MORNING TO GET THE UPDATE ON HER CONDITION .

    SHE HAS BEEN TAKING "SYNTHROID " SINCE 2006 POST SURGERY, MABE THE DOCTOR WILL PRISCRIBE ADITIONAL TRAIL DRUG TODAY ?

    MY FRIAND THE PATIENT IS 63 YRS OLD, RETIRED AND WANTS TO SPEND THE REST OF HER LIFE TRAVELING THE WORLD , BUT HAS FOUND OUT WHEN YOU ARE TAKEN THE NEW TRIAL DRUGS THAT IN STAGE 2/3 TRIALS THEY ARE NOTED YO CAUSE FATIGUE AND OTHER SIDE AFFECTS...(NO LOG TRIPS ?) IS THIS TRUE ?

    NODULES ON HER LUNGS ARE A LITTLE MORE THAN A CENTIMTRE, AND SHE IS IN DENIAL OF REALIZTION ..AND DOES NOT WANT TO BE PART OF A BLOGG...SO I AM TAKING HER PLACE TO NETWORK WITH THYROID SURVIVORS SEEKING TO EXCHANGE INFO RE: QUALITY OF LIFE VS NOT TAKENING THE RECOMENDED TRAIL DRUG AT ALL..THAT WILL HOPFULLY STOP THE NODULE GROWTH ..

    QUESTION :DOES ANYBODY KNOW OF A DRUG GOING THROUGH CLINICAL STUDY THAT DOES NOT CAUSE THE PATIENT TO BE TIRED..?
    QUESTION :IS THERE A TRIAL DRUG THAT REVERSES NODULE GROWTH ?
    QUESTION : IS THERE ANY INFORMATION YOU CAN RENDER TO ME REGARDING MY FRIENDS STAGE 4 CONDITION AND HOW TO OVER COME THE SIDE AFFECTS ONCE SHE IS ON A REGIMENTED TRIAL DRUG PROGRAM THAT CAUSES FATIGUE + OTHER SIDE AFFECTS..
    DIET , ETC.

    FINALLY , SHE DOES NOT WANT TO GO THROUGH THE REST OF HER LIFE IN FATIGUE...FROM THE TRAIL DRUG ..SO I NEED TRUE LIVING INPUT FROM ANYONE..

    SHE IS CONSIDERING TO AVOID THE TRIAL DRUG PROGRAM ..AND I WANT TO COLLECT AS MUCH FEED BACK SO I CAN BE REALISTIC IN CONVEYING THE MESSAGE OF THE DRUG PROGAM VS HER DECISION...WHATS MORE... HER TRIAL DRUG CHOICES ARE BEING DISCLOSED TODAY WHILE IN THE DOCTORS OFFICE... PLEASE REPLY WITH INPUT FOR MY TO RENDER TO HER..

    I KNOW I AM ASKING FOR A MIRACLE AT THIS POINT IN CANCER CLINICAL TRIALS AND RESEARCH STUDIES .. BUT I LEAVE NO STONE UNTURNED..

    I THANK EVERYONE FOR READING THIS BLOGG AND WISH / PRAY FOR THE DAY WILL COME WHEN THAT MAJOR BREAK THOUGH IS ANNOUNCED THAT STAGE 4 PATIENTS CAN TAKE THE "NEW" MEDICATION AND GO THROUGH A NORMAL SENIOR CITIZEN LIFE CYCLE
    HAVING NO OR MINIMAL LOSS OF ENERGY AND PAIN...I WAIT TO HEAR THE DOCTORS UPDATE TODAY ..MARCH 8TH 2012

    PATIENTS FRIEND

    one more thing
    i realize i made a presumption and should clarify one thing. the most commonly used treatment for thyroid cancer, no matter where in the body, is radioactive iodine. I myself am no longer avid for iodine which means that my remaining thyroid cells will not suck it up so, for me, radioactive iodine is no longer a treatment option. your friend may likely be sent to get an RAI treatment to see if it is absorbed by the cells in the lungs. my understanding is that RAI is not always effective in reaching nodules in the lungs but it does seem to work for some. so there is hope there. i tend to forget RAI for lung mets because i am no longer able to use it.
    eileen