Results from 1st pet scan

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It was not as good as we hoped. But not as bad as it could have been. This is after 5 rounds of cysplatin and 35 radiation treatments for BOT cancer with lymph node involvement and only two months post treatment. Primary tumor shrunk considerably but a small amount remains. Also left side where cancer was found in the lymph nodes is all gone, but a small node on the right lit up on the scan. Doctor said it could still respond further to recent treatment and said the lymph node could just be reactive, but because of the tongue lesion not completely gone, he is starting Robert on Erbitux in two weeks for weekly sessions and will do a cat scan in about a month. We also are going to get a consult for surgery on this node if it does not go away with this next round. Any thoughts or opinions welcome.

Thanks,
Denise

Comments

  • ditto1
    ditto1 Member Posts: 660
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    Well behind you
    but I have BOT have had 2 Cysplatin 21 days apart will start Erbitux along with Radiation in the next few weeks. So far some reduction in the lymph node which was noticed back in March has shrunk based on my feeling it no Scans just my review of it. I to have a lesion on the side of my tongue and the left side has a little swelling or at least different thant the right side. I know I not really answering your question and others will be likely doing that. Just seemed our situation was similar so just throwing my 2cents in and just to say and and hope we both get to NED soon. God Bless You.
  • jim and i
    jim and i Member Posts: 1,788 Member
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    Could still be rads residule
    Could be radiation residule this soon out of treatment. My husband had BOT involving 2 lymph nodes and his first PET showed some activity. The next 3 month PET showed lymph nodes normal and tumor gone. He did not have any leasion on the tongue at that time, it had all gone away. I pray yours is still residual and will clear up soon.

    Debbie
  • dclear14
    dclear14 Member Posts: 36
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    jim and i said:

    Could still be rads residule
    Could be radiation residule this soon out of treatment. My husband had BOT involving 2 lymph nodes and his first PET showed some activity. The next 3 month PET showed lymph nodes normal and tumor gone. He did not have any leasion on the tongue at that time, it had all gone away. I pray yours is still residual and will clear up soon.

    Debbie

    Debbie,
    Did your husband's

    Debbie,
    Did your husband's first pet scan show activity with the tongue lesion still? I am hoping Robert's continues to respond to his past treatment, since it is so early. And the erbitux will be used as backup, just in case.

    Thank you Debbie and Ditto. Best of luck to you both!
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    something that is nothing
    dclear14,

    My rad doctor wants me to wait 12 weeks post treatment before my PET (next Friday) and my ENT agrees, they find a little too much lights up when conducted earlier. I certainly do not know what is best but it sounds like you are getting the best of treatments. I did have the 35 rads along with Erbitux and now I wonder if Ii should have had the Cisplatin too. You just can not please a cancer patient that hasn’t met NED. Also, I did have cancer removed from my lower tongue and one (3cm) lymph node prior to rads and chemo.

    Anyway, I would bet you are fine and the healing is just going over some bumps.

    Best wishes,

    Matt
  • Crazymom
    Crazymom Member Posts: 339 Member
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    Pet Scan
    Hi

    I am two months after radiation and CT skan showed a lymph node slightly large...12mm rather than 10mm. My primary tumor on my tonsil is gone. On the June 21st I will go in and have the Pet scan in the morning. If it is not good or inconclusive, they will do surgery that after noon and cut the left lymph node out. I have not had a Pet Scan and am a little bit afraid of it lighting up. Good luck.

    My doctor said with my SCC cancer that 10% of patients have to have the lymph nodes out after the 1st 12 weeks. She said of that 10% ...90% are cancer free. So, at least with my cancer the odds look pretty good.



    Ann
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Denise
    Sometimes the PET will light up and give a false reading because there are dead cancer cells still in the body. My first 3 years of PET scans all kept coming back showing my NPC was still there thanks goodness the doctors at MD Anderson knew about residue left over from radiation in the scar tissue. I am not 6 ½ years passed my last treatment and still at times the PET will light up but when the doctors scope the nasal area is always looks the same.

    Wishing you the best
    Tim Hondo
  • Crazymom
    Crazymom Member Posts: 339 Member
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    Hondo said:

    Hi Denise
    Sometimes the PET will light up and give a false reading because there are dead cancer cells still in the body. My first 3 years of PET scans all kept coming back showing my NPC was still there thanks goodness the doctors at MD Anderson knew about residue left over from radiation in the scar tissue. I am not 6 ½ years passed my last treatment and still at times the PET will light up but when the doctors scope the nasal area is always looks the same.

    Wishing you the best
    Tim Hondo

    Pet Skan
    I am at MD Anderson too. We have the best!
  • Pam M
    Pam M Member Posts: 2,196
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    Most Turn Out to Be Non-Issues
    After treatment, when scans showed one of my lymph nodes had not responded fully to treatment, docs suggested a wait and see period, and told me that my next set of scans would probably show the issue resolved.

    For me (minority) - this did not turn out to be the case. My docs were surprised that I ended up needing the next dissection to eliminate the node.