Salivary Gland Cancer, Stage 4

slane51
slane51 Member Posts: 3
in Head and Neck Cancer #1
My husband has been diagnosed with Salivary Gland Cancer, Stage 4. This cancer is very rare and the fact it spread to the lungs is even more rare. Is there anyone out there with this kind of cancer? Is so, how are you doing? Is there a chemo treatment that is working? Are you part of a clinical trial? My husband will be starting chemo within the next 2 weeks. It has been a long journey of scans, biopsies, 2nd opinions to get to this point.

Thank you in advance for sharing!

Sandi

Comments

  • katenorwood
    katenorwood Member Posts: 1,912
    #2
    What is the exact diagnosis ?
    Hello Sandi,
    Yes I was diagnoised with salivery gland cancer. My dx was in a large submandiblar gland and was adenoid cystic carcinoma. And if this is the case for your husband, there are treatments available. And trials going on that are very promising. But again, needing to know what type of dx he has to answer your questions and direct you to the right resources. Chemo and rads., aren't very promising to treat ACC...but they are getting to a point where in unision and targeted it is giving us a better quality of life and hope. Katie

    Sent you a private message
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #3
    katenorwood said:

    What is the exact diagnosis ?
    Hello Sandi,
    Yes I was diagnoised with salivery gland cancer. My dx was in a large submandiblar gland and was adenoid cystic carcinoma. And if this is the case for your husband, there are treatments available. And trials going on that are very promising. But again, needing to know what type of dx he has to answer your questions and direct you to the right resources. Chemo and rads., aren't very promising to treat ACC...but they are getting to a point where in unision and targeted it is giving us a better quality of life and hope. Katie

    Sent you a private message

    Hi Sandi..
    Sorry I can not help...I was SCC base of tongue ..but just wanted to welcome you to our group (though of course sorry you had to join) ...great bunch here ...sounds like Katie has some info for you and maybe some others will be along as well....

    Best,

    Tim
  • rbd1956
    rbd1956 Member Posts: 1
    #4
    Stage 4 also
    I too have stage 4 and it metastasized to my bones. I went through 8 chemo sessions and it reduced it by about 85%, although my CEO marker went up from 40 to 60 after just 45 days after chemo. We do not yet know what this means as I am going for a follow up visit tomorrow. I took 5-flourouracil, taxotere and carboplatin. I should note, though that there is an 80% chance that this is salivary. I had salivary activity AND in the bones as well, but they are not sure if the cancer originated in my salivary glands OR spread there (as well as to the bones) from another primary. Through DNA testing, they have concluded with an 80% chance that it is salivary.
  • katenorwood
    katenorwood Member Posts: 1,912
    #5
    rbd1956 said:

    Stage 4 also
    I too have stage 4 and it metastasized to my bones. I went through 8 chemo sessions and it reduced it by about 85%, although my CEO marker went up from 40 to 60 after just 45 days after chemo. We do not yet know what this means as I am going for a follow up visit tomorrow. I took 5-flourouracil, taxotere and carboplatin. I should note, though that there is an 80% chance that this is salivary. I had salivary activity AND in the bones as well, but they are not sure if the cancer originated in my salivary glands OR spread there (as well as to the bones) from another primary. Through DNA testing, they have concluded with an 80% chance that it is salivary.

    DNA ?
    Hey there !
    Just curious on the DNA testing...was this for targeted treatment ? And what saliva glands were involved ? I know for ACC the histology is the best way of knowing what type of dx you have. If it is showing cribform, tubular or solid specific for ACC the treatments will differ from other dx's. And the path. then should be 100%. Just curious as alot of pathologists have issue with proper dx of this. Keep us udated...and I will be watching for more posts from you ! I am only in this 10 months and learning as I go. Katie

    I forgot to ask if they did a biopsy ? I sent you a private mail too...please let me know if you got it.
  • karlynrose
    karlynrose Member Posts: 1
    #6
    Parotid Cancer
    My husband was dx with adenocarcinoma of the parotid gland 4 years ago. He had surgery. The facial nerve had to sacrificed during the surgery but another nerve was grafted and it was successful after about 6 months. He had 31 treatments with radiation. His cell type was not responsive to chemotherapy. I have been a cancer nurse for 30 years so I know he got the very best treatment. Tell me more about your situation.
  • katenorwood
    katenorwood Member Posts: 1,912
    #7
    karlynrose said:

    Parotid Cancer
    My husband was dx with adenocarcinoma of the parotid gland 4 years ago. He had surgery. The facial nerve had to sacrificed during the surgery but another nerve was grafted and it was successful after about 6 months. He had 31 treatments with radiation. His cell type was not responsive to chemotherapy. I have been a cancer nurse for 30 years so I know he got the very best treatment. Tell me more about your situation.

    Hey there !
    Wow, I'm so glad you're here on board. I switched clinics that specializes in my ADCC. They removed my right submandiblar gland back in Nov. '11. But I'm waiting for scans to be done in Nov., on their machines....(something about different resolutions due to different calibrations on each machine). And if I do have reoccurrance....or mets that were there already, they will aggressively attack it with chemo and rads. I have been told ADCC is very slow advancing, but have had this in me for years before they found it. I'm apprehensive on whats what with this dx...rare...but yet have cyber met tons of folks with this dx. Maybe your husbands was a different dx, but I'm seeing treatments are similar ? I am also watching trials specific for each persons DNA (targeted) dx with ADCC. Some are having amazing results. Any and all advice for questions to ask my new team would be very helpful. Katie

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