monitoring standards of care — IIIb
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monitoring standards of care — IIIb

› Forums › General Melanoma Community › monitoring standards of care — IIIb

  • Post
    • September 27, 2015 at 3:17 am
    ET-SF
    Participant

    Hi all,

    I read and hear different things about monitoring schedules for IIIb melanoma.  How often is the following typically done (and what does insurance support)?

      – CT of trunk

      – MRI of head

      – PET of trunk

      – sonogram of lymph nodes

      – physical exam

      – dermatological exam

    Thanks, everyone!

    SF and ET

Viewing 20 reply threads
  • Replies
      • September 27, 2015 at 4:08 am
      KimW
      Participant

      Hi there!

      My husband is stage 3b with satellite intransits and he has all of the above done every three months, with the exception of the brain MRI. His PET scans are full body scans along with a CT scan. He has the head and neck ultrasounds every three months and has only had one brain MRI which was in January. (Diagnosed in November and WLE of scalp in December. He has the body checks done every time we are there seeing the doctor, following the scans. He is being treated at MDA and has Medicare with a supplemental back up. As of now, he is on "watch and wait" status which is very hard – since he's had intransits on scalp since WLE. If he had a larger lesion appear, they said he'd be a candidate for a vaccine. His spots that have appeared have been small and removed by biopsy early. I worry so much about tiny cells traveling around- it's enough to consume my thoughts every day. I do have a high respect for his doctors and trust them but I wish we could be more aggressive but they didn't recommend interferon for him because he is 66. He's always been very healthy until this diagnosis and is still feeling good so far. 

      Sorry to have given way more info than you requested. :-/

      kim 

      • September 27, 2015 at 4:08 am
      KimW
      Participant

      Hi there!

      My husband is stage 3b with satellite intransits and he has all of the above done every three months, with the exception of the brain MRI. His PET scans are full body scans along with a CT scan. He has the head and neck ultrasounds every three months and has only had one brain MRI which was in January. (Diagnosed in November and WLE of scalp in December. He has the body checks done every time we are there seeing the doctor, following the scans. He is being treated at MDA and has Medicare with a supplemental back up. As of now, he is on "watch and wait" status which is very hard – since he's had intransits on scalp since WLE. If he had a larger lesion appear, they said he'd be a candidate for a vaccine. His spots that have appeared have been small and removed by biopsy early. I worry so much about tiny cells traveling around- it's enough to consume my thoughts every day. I do have a high respect for his doctors and trust them but I wish we could be more aggressive but they didn't recommend interferon for him because he is 66. He's always been very healthy until this diagnosis and is still feeling good so far. 

      Sorry to have given way more info than you requested. :-/

      kim 

      • September 27, 2015 at 4:08 am
      KimW
      Participant

      Hi there!

      My husband is stage 3b with satellite intransits and he has all of the above done every three months, with the exception of the brain MRI. His PET scans are full body scans along with a CT scan. He has the head and neck ultrasounds every three months and has only had one brain MRI which was in January. (Diagnosed in November and WLE of scalp in December. He has the body checks done every time we are there seeing the doctor, following the scans. He is being treated at MDA and has Medicare with a supplemental back up. As of now, he is on "watch and wait" status which is very hard – since he's had intransits on scalp since WLE. If he had a larger lesion appear, they said he'd be a candidate for a vaccine. His spots that have appeared have been small and removed by biopsy early. I worry so much about tiny cells traveling around- it's enough to consume my thoughts every day. I do have a high respect for his doctors and trust them but I wish we could be more aggressive but they didn't recommend interferon for him because he is 66. He's always been very healthy until this diagnosis and is still feeling good so far. 

      Sorry to have given way more info than you requested. :-/

      kim 

      • September 27, 2015 at 1:12 pm
      mjanssentx
      Participant

      SF and ET – for Stage 3A for 11 months

      No CT

      Full body PET scan every 3 months

      MRI every 12 months (but moving this up to Monday at 11 months due to unexplained eye issues)

      Dermatologist every 3 months (got 2 more moles taken off last week)

      Oncologist (monthly due to being on Interferon)

      So far no insurance issues.

      Feel like I am being appropriately monitored.

      Best wishes

      Michel

       

      • September 27, 2015 at 1:12 pm
      mjanssentx
      Participant

      SF and ET – for Stage 3A for 11 months

      No CT

      Full body PET scan every 3 months

      MRI every 12 months (but moving this up to Monday at 11 months due to unexplained eye issues)

      Dermatologist every 3 months (got 2 more moles taken off last week)

      Oncologist (monthly due to being on Interferon)

      So far no insurance issues.

      Feel like I am being appropriately monitored.

      Best wishes

      Michel

       

      • September 27, 2015 at 1:12 pm
      mjanssentx
      Participant

      SF and ET – for Stage 3A for 11 months

      No CT

      Full body PET scan every 3 months

      MRI every 12 months (but moving this up to Monday at 11 months due to unexplained eye issues)

      Dermatologist every 3 months (got 2 more moles taken off last week)

      Oncologist (monthly due to being on Interferon)

      So far no insurance issues.

      Feel like I am being appropriately monitored.

      Best wishes

      Michel

       

      • September 27, 2015 at 11:54 pm
      Lil0909
      Participant
      Stage 3a… had full body pet and CT when going through diagnosis. After that, chest Xray and skin check every 3 months.
      • September 27, 2015 at 11:54 pm
      Lil0909
      Participant
      Stage 3a… had full body pet and CT when going through diagnosis. After that, chest Xray and skin check every 3 months.
      • September 27, 2015 at 11:54 pm
      Lil0909
      Participant
      Stage 3a… had full body pet and CT when going through diagnosis. After that, chest Xray and skin check every 3 months.
      • September 28, 2015 at 1:28 am
      Andrew1725
      Participant

      I had primary on the back, spread to nodes under my armpit. I was diagnosed a little more than a year ago. Currently, I'm doing head, trunk and pelvis CT every 6 months, brain MRI once a year, and dermatological exam every 3 months. 

      • September 28, 2015 at 1:28 am
      Andrew1725
      Participant

      I had primary on the back, spread to nodes under my armpit. I was diagnosed a little more than a year ago. Currently, I'm doing head, trunk and pelvis CT every 6 months, brain MRI once a year, and dermatological exam every 3 months. 

      • September 28, 2015 at 1:28 am
      Andrew1725
      Participant

      I had primary on the back, spread to nodes under my armpit. I was diagnosed a little more than a year ago. Currently, I'm doing head, trunk and pelvis CT every 6 months, brain MRI once a year, and dermatological exam every 3 months. 

      • September 28, 2015 at 1:33 pm
      katie1
      Participant

      My husband (IIIC –T4N2cM0) is participating in the Ipi vs. Interferon trial.  He had CTs (neck, chest, abdomen and pelvis) PET (full body), bone scan and head MRI at diagnosis.  The trial requires CTs (neck, chest, abdomen and pelvis) every 3 months for the first 2 years and every 6 months until 5 years and then yearly.  His oncologist has modified this to every 3 months for the first 3 years (he is 2 1/2 years post diagnosis) because he feels for my husband the highest risk of recurrence will be in the first 3 years.  His oncologist  also recommends yearly head MRI (will do more frequently if symptomatic) .  My husband received Ipi and developed hypophositis and so has had many more head MRIs as a result. He had appointments very frequently while undergoing treatment and having side effects but now sees his oncologist every three months for physical exam and to review CTs (and blood work).

      He saw his dermotologist every 3 months for the first 2 years and is now every 4 months (staggered with his oncology appointments).

      Kate

       

      • September 28, 2015 at 1:33 pm
      katie1
      Participant

      My husband (IIIC –T4N2cM0) is participating in the Ipi vs. Interferon trial.  He had CTs (neck, chest, abdomen and pelvis) PET (full body), bone scan and head MRI at diagnosis.  The trial requires CTs (neck, chest, abdomen and pelvis) every 3 months for the first 2 years and every 6 months until 5 years and then yearly.  His oncologist has modified this to every 3 months for the first 3 years (he is 2 1/2 years post diagnosis) because he feels for my husband the highest risk of recurrence will be in the first 3 years.  His oncologist  also recommends yearly head MRI (will do more frequently if symptomatic) .  My husband received Ipi and developed hypophositis and so has had many more head MRIs as a result. He had appointments very frequently while undergoing treatment and having side effects but now sees his oncologist every three months for physical exam and to review CTs (and blood work).

      He saw his dermotologist every 3 months for the first 2 years and is now every 4 months (staggered with his oncology appointments).

      Kate

       

      • September 28, 2015 at 1:33 pm
      katie1
      Participant

      My husband (IIIC –T4N2cM0) is participating in the Ipi vs. Interferon trial.  He had CTs (neck, chest, abdomen and pelvis) PET (full body), bone scan and head MRI at diagnosis.  The trial requires CTs (neck, chest, abdomen and pelvis) every 3 months for the first 2 years and every 6 months until 5 years and then yearly.  His oncologist has modified this to every 3 months for the first 3 years (he is 2 1/2 years post diagnosis) because he feels for my husband the highest risk of recurrence will be in the first 3 years.  His oncologist  also recommends yearly head MRI (will do more frequently if symptomatic) .  My husband received Ipi and developed hypophositis and so has had many more head MRIs as a result. He had appointments very frequently while undergoing treatment and having side effects but now sees his oncologist every three months for physical exam and to review CTs (and blood work).

      He saw his dermotologist every 3 months for the first 2 years and is now every 4 months (staggered with his oncology appointments).

      Kate

       

      • September 28, 2015 at 5:21 pm
      jenny22
      Participant

      Hi-

      I started at 1B, then moved to IIIB due to instransit SUBQs…..

      Completed vaccine trial in Mid may.

      Treated at NYU, with Anna Pavlick

      Current follow-up is:

      See oncologist every three months for bloodwork and quick checkup.

      CT scans of Neck, Chest, Abdomen and pelvis every 6 months…..

      Brain MRI- once a year, alternate with ct of head on the off 6 months

      Derm – i see 2 different DERMS,  one every 2 months….(this is probably overkill, but will continue this until i am more comfortable moving further apart)

      Hoping for the best with no changes ahead!

      Best to everyone.

       

       

       

      • September 28, 2015 at 5:21 pm
      jenny22
      Participant

      Hi-

      I started at 1B, then moved to IIIB due to instransit SUBQs…..

      Completed vaccine trial in Mid may.

      Treated at NYU, with Anna Pavlick

      Current follow-up is:

      See oncologist every three months for bloodwork and quick checkup.

      CT scans of Neck, Chest, Abdomen and pelvis every 6 months…..

      Brain MRI- once a year, alternate with ct of head on the off 6 months

      Derm – i see 2 different DERMS,  one every 2 months….(this is probably overkill, but will continue this until i am more comfortable moving further apart)

      Hoping for the best with no changes ahead!

      Best to everyone.

       

       

       

      • September 28, 2015 at 5:21 pm
      jenny22
      Participant

      Hi-

      I started at 1B, then moved to IIIB due to instransit SUBQs…..

      Completed vaccine trial in Mid may.

      Treated at NYU, with Anna Pavlick

      Current follow-up is:

      See oncologist every three months for bloodwork and quick checkup.

      CT scans of Neck, Chest, Abdomen and pelvis every 6 months…..

      Brain MRI- once a year, alternate with ct of head on the off 6 months

      Derm – i see 2 different DERMS,  one every 2 months….(this is probably overkill, but will continue this until i am more comfortable moving further apart)

      Hoping for the best with no changes ahead!

      Best to everyone.

       

       

       

        • September 28, 2015 at 6:50 pm
        KimW
        Participant

        Hi jenny22!

        if you don't mind me asking, where was your primary and curious to know about your intransits since my husband has been getting them. The oncologist mentioned a vaccine but said he needed a larger lesion in order to do it. He keeps getting them on his scalp but they are removed by biopsies when they're small. He started getting them a month after his WLE and SNB. 

        Thank you!

        kim

        • September 28, 2015 at 6:50 pm
        KimW
        Participant

        Hi jenny22!

        if you don't mind me asking, where was your primary and curious to know about your intransits since my husband has been getting them. The oncologist mentioned a vaccine but said he needed a larger lesion in order to do it. He keeps getting them on his scalp but they are removed by biopsies when they're small. He started getting them a month after his WLE and SNB. 

        Thank you!

        kim

        • September 28, 2015 at 6:50 pm
        KimW
        Participant

        Hi jenny22!

        if you don't mind me asking, where was your primary and curious to know about your intransits since my husband has been getting them. The oncologist mentioned a vaccine but said he needed a larger lesion in order to do it. He keeps getting them on his scalp but they are removed by biopsies when they're small. He started getting them a month after his WLE and SNB. 

        Thank you!

        kim

        • September 29, 2015 at 8:03 pm
        jenny22
        Participant

        Kim-

        They were two TINY pea size bumps near my WLE, not in the scar but very near….all of which was on my neck.  Only one recurrence so far, and of course hoping for no more…maybe the vaccine did what it was supposed to do ….

        Obviously that is what i am hoping for!

        • September 29, 2015 at 8:03 pm
        jenny22
        Participant

        Kim-

        They were two TINY pea size bumps near my WLE, not in the scar but very near….all of which was on my neck.  Only one recurrence so far, and of course hoping for no more…maybe the vaccine did what it was supposed to do ….

        Obviously that is what i am hoping for!

        • September 29, 2015 at 8:03 pm
        jenny22
        Participant

        Kim-

        They were two TINY pea size bumps near my WLE, not in the scar but very near….all of which was on my neck.  Only one recurrence so far, and of course hoping for no more…maybe the vaccine did what it was supposed to do ….

        Obviously that is what i am hoping for!

      • September 30, 2015 at 4:26 am
      ET-SF
      Participant

      I appreciate your sharing your monitoring schedules with us, everyone!  We will be discussing the refinement of ET's monitoring schedule at our next appointment in about a week.  We'll especially re-visit the PET scan discussion we've had previously.  We were discouraged from having a PET scan for murky and mysterious reasons.  However, we now see that other people get them on a regular basis, and our insurance will pay for this practice.

      FAIW, our oncologist said that a CT is much better at locating metastatic lesions because of its higher resolution.  And I can see how that would be in an organ like the liver.  However, if there were a small metastatic lesion in the pancreas or the intestines, I honestly don't know how anyone would see it.  Between the tiny gas pockets (black) and the barium sulfate (white), parts of the scan are a confusing mess.  Perhaps radiologists are THAT good (and I don't question that they would see things I would miss), but I still question their ability to find a small tumor in the intestines.  "A needle in a haystack" doesn't even begin to describe it.  A PET would yield an entirely different perspective.

      Thanks again for sharing, everyone!  🙂

      • September 30, 2015 at 4:26 am
      ET-SF
      Participant

      I appreciate your sharing your monitoring schedules with us, everyone!  We will be discussing the refinement of ET's monitoring schedule at our next appointment in about a week.  We'll especially re-visit the PET scan discussion we've had previously.  We were discouraged from having a PET scan for murky and mysterious reasons.  However, we now see that other people get them on a regular basis, and our insurance will pay for this practice.

      FAIW, our oncologist said that a CT is much better at locating metastatic lesions because of its higher resolution.  And I can see how that would be in an organ like the liver.  However, if there were a small metastatic lesion in the pancreas or the intestines, I honestly don't know how anyone would see it.  Between the tiny gas pockets (black) and the barium sulfate (white), parts of the scan are a confusing mess.  Perhaps radiologists are THAT good (and I don't question that they would see things I would miss), but I still question their ability to find a small tumor in the intestines.  "A needle in a haystack" doesn't even begin to describe it.  A PET would yield an entirely different perspective.

      Thanks again for sharing, everyone!  🙂

      • September 30, 2015 at 4:26 am
      ET-SF
      Participant

      I appreciate your sharing your monitoring schedules with us, everyone!  We will be discussing the refinement of ET's monitoring schedule at our next appointment in about a week.  We'll especially re-visit the PET scan discussion we've had previously.  We were discouraged from having a PET scan for murky and mysterious reasons.  However, we now see that other people get them on a regular basis, and our insurance will pay for this practice.

      FAIW, our oncologist said that a CT is much better at locating metastatic lesions because of its higher resolution.  And I can see how that would be in an organ like the liver.  However, if there were a small metastatic lesion in the pancreas or the intestines, I honestly don't know how anyone would see it.  Between the tiny gas pockets (black) and the barium sulfate (white), parts of the scan are a confusing mess.  Perhaps radiologists are THAT good (and I don't question that they would see things I would miss), but I still question their ability to find a small tumor in the intestines.  "A needle in a haystack" doesn't even begin to describe it.  A PET would yield an entirely different perspective.

      Thanks again for sharing, everyone!  🙂

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