Radiation on lymph nodes

Williamryan
Williamryan Member Posts: 37
in Thyroid Cancer #1

My papillary thyroid cancer (tall cell variant and bRAF mutuation) has spread to 3 lymph nodes in my chest (mediastinal area) measuring up to 2" x 3" each.  I already tried Nexavar and Zelboraf with no effectiveness.  I am starting radiation treatment (28 treatment sessions) on my papillary thyroid cancer / lymph nodes today.  My radiation oncologist has never treated this type of cancer and there is little or no information regarding the effectiveness of radiation.  I am wondering if anyone has had radiation treatment, and if so, what was the outcome?  Any feedback would be appreciated.

Thanks, Bill

Comments

  • alapah
    alapah Member Posts: 287
    #2
    radiation

    I did have radiation - but not to a lymph node. My original tumor had adhered to my trachea and although the surgeon scraped what he could it was highly recommended to me that I go through 6 wks of radiation to my neck. I had that done in the fall of 2009 and have had no recurrances in my neck. I just found out today that I may need to have a thyroid cancer tumor in my lung irradiated so they do use radiation for thyca tumors though I am have not heard of it for cancerous lymph nodes. Are you sure it's lymph nodes that are involved or is it tumors outside of lymph nodes? Sometimes they use the word "node" interchangably ot describe them.

    eileen

  • Williamryan
    Williamryan Member Posts: 37
    #3
    alapah said:

    radiation

    I did have radiation - but not to a lymph node. My original tumor had adhered to my trachea and although the surgeon scraped what he could it was highly recommended to me that I go through 6 wks of radiation to my neck. I had that done in the fall of 2009 and have had no recurrances in my neck. I just found out today that I may need to have a thyroid cancer tumor in my lung irradiated so they do use radiation for thyca tumors though I am have not heard of it for cancerous lymph nodes. Are you sure it's lymph nodes that are involved or is it tumors outside of lymph nodes? Sometimes they use the word "node" interchangably ot describe them.

    eileen

    Radiation

    Eileen,

    Yes, the docs did confirm that the lymph nodes are involved and not a tumor outside the lymph nodes.  They confirmed this when they initially did an EBS last year on all three lymph nodes.  Hoping this radiation works.  Hope you are doing well and your radiation treatments are a success.

    Thanks, Bill

  • skychimp
    skychimp Member Posts: 1
    #4
    Williamryan said:

    Radiation

    Eileen,

    Yes, the docs did confirm that the lymph nodes are involved and not a tumor outside the lymph nodes.  They confirmed this when they initially did an EBS last year on all three lymph nodes.  Hoping this radiation works.  Hope you are doing well and your radiation treatments are a success.

    Thanks, Bill

    Tall cell

    Good Morning.  My daughter at age 13 y was diagnosed with tall cell variant...over 50 % of tumor...3 cm nodule in left lobe.  7/9 lymph nodes in central compartment were positive and all had tall cell histology.  Less than 6 months later she under went left neck dissection with 2 lymph nodes positve at level 2, 2 positive at level 3 and no disease seen at level 4....I believe this is out of a total of 33 lymph nodes.  The re-exploration of her central compartment should 5 nodes without disease.  there was one lymph node positive in the region of the left carotid.  She had her first surgery in Aug 2013.  This most recent surgery in March 2014.  She had RAi at 100 mcu in October.  The scan was negative.  We cannot moniter thyroglobulin because her antibodies have been elevated.  I suspect her disease may not be sensitive to RAI.  I was interested in your course of treatment and how you are currently doing.  We are currently being treated in Pittsburgh.  I have heard that Sloan Kettering may have more experience in this tumor.

     

    Thank you for your time.

  • Williamryan
    Williamryan Member Posts: 37
    #5
    skychimp said:

    Tall cell

    Good Morning.  My daughter at age 13 y was diagnosed with tall cell variant...over 50 % of tumor...3 cm nodule in left lobe.  7/9 lymph nodes in central compartment were positive and all had tall cell histology.  Less than 6 months later she under went left neck dissection with 2 lymph nodes positve at level 2, 2 positive at level 3 and no disease seen at level 4....I believe this is out of a total of 33 lymph nodes.  The re-exploration of her central compartment should 5 nodes without disease.  there was one lymph node positive in the region of the left carotid.  She had her first surgery in Aug 2013.  This most recent surgery in March 2014.  She had RAi at 100 mcu in October.  The scan was negative.  We cannot moniter thyroglobulin because her antibodies have been elevated.  I suspect her disease may not be sensitive to RAI.  I was interested in your course of treatment and how you are currently doing.  We are currently being treated in Pittsburgh.  I have heard that Sloan Kettering may have more experience in this tumor.

     

    Thank you for your time.

    Tall Cell

    Skychimp,

    Tall cell variant is resistant to the RAI treatment.  When I went to Sloan Kettering (Dr. Allan Ho) twice in the past two years for consultation and was hoping to get in to their clinical trial - which was just starting phase II.  Unfortunately, that clinical trial was stopped for unknown reasons.  As of now, I have not found any clinical trials going on with this type of thyroid cancer.  Just because your daughter's scan was negative after taking the RAI treatment, doesn't mean that the cancer is not lurking around.  After 3 years of clean scans and normal thyroglobulin and anti thyroglobulin levels, my 4th year scan was negative although the anti thyroglobulin levels were high.  My endo ordered a PET scan and the cancer reared it's ugly head - two lymph nodes in the neck and 3 in the chest.  I had biopsies done on one of each (neck and chest) and confirmed that it was TCV with positive b-RAF mutation.  The positive b-RAF mutation reflects a faster growth in the cancer cells.  I had surgery to remove the two in my neck - unfortunately one was attached to my left vocal cord nerve and had to cut it to remove the lymph node.  I was being seen my Dr. Petro / UPMC for a short duration and he had originally prescribed Zelboraf (chemo pill used for melanoma and pancreatic cancers).  Unfortunately, the toxicity was overwhelming and was immediately taken off the Zelboraf after only 5 days.  He then prescribed Nexavar - pill (used for liver, pancreatic and kidney cancers) and again, very toxic and was taken off of it after 2 weeks.  I changed Dr.'s and now seeing Dr. Petursson in Butler.  I was referred to a radiation oncologist and he implemented the radiation treatment - 6 weeks everyday starting in Sept 2013.  The Dr. had never seen this type of thyroid cancer metastisize this way and very little literature on the effects of radiation on this type of cancer.  Had to fight with the insurance company to get them to approve and after weeks of fighting, they finally approved the radiation.  Fortunately, the lymph nodes in my chest had shrunk up to 50% and has remained stable - no continued growth and my thyroglobulin anti bodies have been in the normal range since Nov 2013.  My ENT is Dr. Shelly McQuone, located at West Penn Hospital - excellent, terrific surgeon.  I did consult 3 thoracic surgeons to explore surgery on my chest to remove the lymph nodes, although all 3 declined to perform the surgery stating that the risks far out weigh the benefits because of the location and size.  That's when I started to explore the radiation approach.  I am living month to month with the anti thyroglobulin blood tests.  As long as they remain low, I continue to pray that they stay low and do not spread.  This cancer does spread to the bones, lungs and brain.  I hope my experiences and info helps you.  Oh, my ENT had also consulted Dr.'s from John Hopkins, MD Anderson and the Cleveland Clinic.  All feedback was, if possible, surgically remove the lymph nodes and to try the Nexavar and Zelboraf.  The latter two, as I mentioned, did not work.  They did mention radiation, although they were skeptical as there is not data / information available on the effectiveness of radiation treatment.  I guess I may be a case for reference :).

    Thanks, Bill

  • Williamryan
    Williamryan Member Posts: 37
    #6
    alapah said:

    radiation

    I did have radiation - but not to a lymph node. My original tumor had adhered to my trachea and although the surgeon scraped what he could it was highly recommended to me that I go through 6 wks of radiation to my neck. I had that done in the fall of 2009 and have had no recurrances in my neck. I just found out today that I may need to have a thyroid cancer tumor in my lung irradiated so they do use radiation for thyca tumors though I am have not heard of it for cancerous lymph nodes. Are you sure it's lymph nodes that are involved or is it tumors outside of lymph nodes? Sometimes they use the word "node" interchangably ot describe them.

    eileen

    radiation

    Hello Eileen,

    Haven't been able to access this site for some time.  Always been thinking of you and how things are going.  I am 15 months post radiation on the 4 lymph nodes in my chest.  My last CT scan in July 2014 showed 2 of the larger ones shrank up to 35%, the other two remained unchanged.  I will have another CT scan in April.  My thyroglobulin (11.2) and thyroglobulin antibodies (<1) have remained unchanged in 15 months, so I am thankful that it appears they cancer has not grown in this time frame.

    My oncologist told me that Penn University is conducting clinical trials and should have some results later this year, although I have not found any info on their website yet.  Have you come across any other trials?  Sloan-Kettering stopped their recent clinical trial without explanation. 

    How have your lungs been?  Are you in any distress, coughing, shortness of breath?  Have you come across any other treatment options?  Are you still working?  Please update me on your situation.

    Prayers to you,

    Bill

  • alapah
    alapah Member Posts: 287
    #7
    Williamryan said:

    radiation

    Hello Eileen,

    Haven't been able to access this site for some time.  Always been thinking of you and how things are going.  I am 15 months post radiation on the 4 lymph nodes in my chest.  My last CT scan in July 2014 showed 2 of the larger ones shrank up to 35%, the other two remained unchanged.  I will have another CT scan in April.  My thyroglobulin (11.2) and thyroglobulin antibodies (<1) have remained unchanged in 15 months, so I am thankful that it appears they cancer has not grown in this time frame.

    My oncologist told me that Penn University is conducting clinical trials and should have some results later this year, although I have not found any info on their website yet.  Have you come across any other trials?  Sloan-Kettering stopped their recent clinical trial without explanation. 

    How have your lungs been?  Are you in any distress, coughing, shortness of breath?  Have you come across any other treatment options?  Are you still working?  Please update me on your situation.

    Prayers to you,

    Bill

    Hello!

    Hi Bill,

    Good to hear from you. i I'm glad that you've experienced reductions - that's wonderful!

    I have an aggressive form of papillary thyca and as it is in my lungs it is very hard to treat. I have so many tumors that radiation to the lungs is not an option. I have had issues with coughing and the like though I am currently on a BRAF targeting oral chemotherapy drug called Zelboraf and this has produced some shrinkage in tumors, thankfully. Eventually, as with the others, it will no longer be effective but I am extremely grateful that it's helped me thus far. I get scans every two months. My next are in March and I will go to Mayo for that one (I try to go there to see a specialist oncologist every so often - my home oncologist consults with him on my case regularly). 

    The first oral chemo I tried was Sorafenib but I was only on it for about 4 months as it was not effective. Next was a drug called Revlimid which I was on for about one year. It didn't shrink tumors but it did halt growth for a long time. I also participated in a viral drug trial at Mayo (VB-111, no help for me though). In addition to UPenn I know that Mayo is (or at least has been) conducting trials. There are others but I can't recall off the top of my head. I believe UMass is looking into ways to reactivate cells to be iodine receptive in patients who are no longer avid for iodine (then they can administer RAI). Lots going on so there is always hope. I will try to find my notes from a recent conference about research and let you know re trials. I'm sure to learn about the latest when I go to Mayo in two weeks. I think there are still pazopanib trials - maybe at Mayo? MD Anderson has a strong thyroid cancer group as well.

    I feel good much of the time and am still working though not quite 40 hour weeks. I travel and enjoy life. I am very fortunate to have quality time.

    Very best to you Bill!

    eileen

  • Williamryan
    Williamryan Member Posts: 37
    #8
    alapah said:

    Hello!

    Hi Bill,

    Good to hear from you. i I'm glad that you've experienced reductions - that's wonderful!

    I have an aggressive form of papillary thyca and as it is in my lungs it is very hard to treat. I have so many tumors that radiation to the lungs is not an option. I have had issues with coughing and the like though I am currently on a BRAF targeting oral chemotherapy drug called Zelboraf and this has produced some shrinkage in tumors, thankfully. Eventually, as with the others, it will no longer be effective but I am extremely grateful that it's helped me thus far. I get scans every two months. My next are in March and I will go to Mayo for that one (I try to go there to see a specialist oncologist every so often - my home oncologist consults with him on my case regularly). 

    The first oral chemo I tried was Sorafenib but I was only on it for about 4 months as it was not effective. Next was a drug called Revlimid which I was on for about one year. It didn't shrink tumors but it did halt growth for a long time. I also participated in a viral drug trial at Mayo (VB-111, no help for me though). In addition to UPenn I know that Mayo is (or at least has been) conducting trials. There are others but I can't recall off the top of my head. I believe UMass is looking into ways to reactivate cells to be iodine receptive in patients who are no longer avid for iodine (then they can administer RAI). Lots going on so there is always hope. I will try to find my notes from a recent conference about research and let you know re trials. I'm sure to learn about the latest when I go to Mayo in two weeks. I think there are still pazopanib trials - maybe at Mayo? MD Anderson has a strong thyroid cancer group as well.

    I feel good much of the time and am still working though not quite 40 hour weeks. I travel and enjoy life. I am very fortunate to have quality time.

    Very best to you Bill!

    eileen

    New chemo!

    Hello Eileen,

    Not sure if I had mentioned earlier that I initially was treated with Zelboaf with serious side effects within 5 days, then Nexavar and in 3 weeks same side effects.  Anyway, I had emailed you a few weeks ago regarding the new Lenvima/Lenvatinib oral chemo just fast tracked by the FDA.  Clinical trials show better results than Zelboraf or Nexavar.  This new drug was designed specifically for our type of thyroid cancer.  My CT scan 3 weeks ago showed continued shrinkage with the larger two lymph nodes and the smaller lymph nodes are stable - no growth or shrinkage.  My oncologist will authorize the use of this new chemo only if my cancer spreads and/or the curent lymph nodes start to grow.  It's about time they designed a drug specifically for our type of thyroid cancer.

    How have you been?  Any progress with your situation?  Always thinking of you and your situation.  Stay strong!

    Bill

  • alapah
    alapah Member Posts: 287
    #9
    Williamryan said:

    New chemo!

    Hello Eileen,

    Not sure if I had mentioned earlier that I initially was treated with Zelboaf with serious side effects within 5 days, then Nexavar and in 3 weeks same side effects.  Anyway, I had emailed you a few weeks ago regarding the new Lenvima/Lenvatinib oral chemo just fast tracked by the FDA.  Clinical trials show better results than Zelboraf or Nexavar.  This new drug was designed specifically for our type of thyroid cancer.  My CT scan 3 weeks ago showed continued shrinkage with the larger two lymph nodes and the smaller lymph nodes are stable - no growth or shrinkage.  My oncologist will authorize the use of this new chemo only if my cancer spreads and/or the curent lymph nodes start to grow.  It's about time they designed a drug specifically for our type of thyroid cancer.

    How have you been?  Any progress with your situation?  Always thinking of you and your situation.  Stay strong!

    Bill

    hi Bill

    Sorry, I'd been doing a little traveling and didn't have my password so couldn't respond. I have not yet looked into lenvantinib. I am just about to stop taking vemurafenib as things are growing now - been on it for a year and had shrinkage of tumors over that time. However, vemurafenib is one of the drugs they've found sometimes triggers a reversal in patients who are no longer avid for iodine, and thus unable to use radioactive iodine as a treatment option. I just had an I-131 scan about a week ago and showed some uptake in my right lung. My consulting oncologist was on vacation last week but hopefully we'll hear back from him this week to learn whether or not there was enough uptake/promise to try a larger I-131 dose or if I just need to move on to a new chemo treatment. 

    For various reasons (schedules, CT scan with iodine, etc) I have been on the low iodine diet for weeks! I am so ready to gain back some variety in my diet. I'm certain to gain lots of weight once I can eat dairy and food from restaurants!

    So glad to hear you're doing well. Keep me posted. I'll let you know what I learn this week. Remaining cautiously optimistic!

    eileen

  • Williamryan
    Williamryan Member Posts: 37
    #10
    alapah said:

    hi Bill

    Sorry, I'd been doing a little traveling and didn't have my password so couldn't respond. I have not yet looked into lenvantinib. I am just about to stop taking vemurafenib as things are growing now - been on it for a year and had shrinkage of tumors over that time. However, vemurafenib is one of the drugs they've found sometimes triggers a reversal in patients who are no longer avid for iodine, and thus unable to use radioactive iodine as a treatment option. I just had an I-131 scan about a week ago and showed some uptake in my right lung. My consulting oncologist was on vacation last week but hopefully we'll hear back from him this week to learn whether or not there was enough uptake/promise to try a larger I-131 dose or if I just need to move on to a new chemo treatment. 

    For various reasons (schedules, CT scan with iodine, etc) I have been on the low iodine diet for weeks! I am so ready to gain back some variety in my diet. I'm certain to gain lots of weight once I can eat dairy and food from restaurants!

    So glad to hear you're doing well. Keep me posted. I'll let you know what I learn this week. Remaining cautiously optimistic!

    eileen

    Eileen,
    Thanks for

    Eileen,

    Thanks for responding.  Glad to hear that you're at least able to travel and soon to be on a regular diet.  I'm hoping and praying for good results.  Are you concerned about the mutiliple RI-131 treatments?  My oncologist told me that it may lead to deteriorating the bone marrow and maybe result in leukemia.  The lenvantinib clinical trials were conducted by two pharm. companies - one in the U.S. and the other in Japan.  I think when the FDA saw that an international pharm. company also conducted the same type of clinical trial with similiar results with the U.S. pharm. company, that may have triggered the FDA to fast-track the approval.

    Looking forward to hear your results.

    Bill

  • alapah
    alapah Member Posts: 287
    #11
    Williamryan said:

    Eileen,
    Thanks for

    Eileen,

    Thanks for responding.  Glad to hear that you're at least able to travel and soon to be on a regular diet.  I'm hoping and praying for good results.  Are you concerned about the mutiliple RI-131 treatments?  My oncologist told me that it may lead to deteriorating the bone marrow and maybe result in leukemia.  The lenvantinib clinical trials were conducted by two pharm. companies - one in the U.S. and the other in Japan.  I think when the FDA saw that an international pharm. company also conducted the same type of clinical trial with similiar results with the U.S. pharm. company, that may have triggered the FDA to fast-track the approval.

    Looking forward to hear your results.

    Bill

    I 131

    Well, I only had one dose of I 131 before becoming non avid and it was 150 mc (or whatever the standard units are) so I am far from the max dose. Also, my situation is such that I very likely won't be cured so I am not worried about the issue of such long term effects. I get CT scans so often as well. All of these treatments and monitoring have down sides. Just have to live in the moment.

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