Salivary Gland Transfer

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Comments

  • jcortney
    jcortney Member Posts: 503
    Skiffin16 said:

    I'd Do It Again Though...

    Even though I had some reaction, and the shots themself kind of sucked..., I'd do them again.

    I do believe they helped with salvary reproduction, but the main thing is the lack of having the thick choking phelgm and mucouc a lot speak of... That sounds much worse than the stuff I went through.

    But you never know, LOL...

    JG

    Me too

    All through these treatments I've been dreading the mucous and the phlegm.  My doc told me I would probably get by without the suffering if I took the shots.  Five treatments left and I'm keeping my fingers crossed.

    It hasn't been without complication, low grade fever, itchy and generally feeling like crap after getting the shot.  Small price to pay if I dodged the mucous and my saliva glands survive.

     

    Joe Cortney

    Dallas, TX

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    Yep...

    Hey Tommy,

    Yep... you and a couple others referred to it. Thanks for the reply. I've done some reading and I have the question posed to my surgeon along with the various drugs that may support the salivary glands. The 1st radiology oncologist I met with told me that he was going to "sacrifice" the glands on the left side of my neck but would try to save some on the right. He didn't mention any drugs or alternatives.

    I'm SO glad I sought a 2nd opinion! The team at Johns Hopkins is amazing and is all about minimal morbidity and quality of life. I expect to hear back from my surgeon Monday some time. 

    "T"

     

    Guarantees...

    T, I don't mean to be a party pooper, and hopefully you can prove me wrong...

    But I'd think if it were a guarantee that everyone having H&N Rads would for sure permanantly lose their saliva, they would move the glands for everyone if that would gurantee saliva reproduction, or at a faster rate of return.

    Has any of the MD's gave you a guarantee you would regain saliva faster, or more of it than not having the relocation?

    Again, I'm not trying to bring you down, and I'm certainly no medical professional, but I'd at least ask the question to the MD's suggesting it.

    Like Phrannie, myself and others..., most everyone here regains their taste and saliva eventially, or some degree of it.

    I know also that your voice is your lively hood, but killing the cancer is the main priority.

    Anyways, just rambling....

    I would just hate to see you go through something extra, that might not have the results in the time frame that you are wanting.

    Best ~ John

     

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Skiffin16 said:

    Guarantees...

    T, I don't mean to be a party pooper, and hopefully you can prove me wrong...

    But I'd think if it were a guarantee that everyone having H&N Rads would for sure permanantly lose their saliva, they would move the glands for everyone if that would gurantee saliva reproduction, or at a faster rate of return.

    Has any of the MD's gave you a guarantee you would regain saliva faster, or more of it than not having the relocation?

    Again, I'm not trying to bring you down, and I'm certainly no medical professional, but I'd at least ask the question to the MD's suggesting it.

    Like Phrannie, myself and others..., most everyone here regains their taste and saliva eventially, or some degree of it.

    I know also that your voice is your lively hood, but killing the cancer is the main priority.

    Anyways, just rambling....

    I would just hate to see you go through something extra, that might not have the results in the time frame that you are wanting.

    Best ~ John

     

     

    Preemptive Strike

    Hi John,

    By no means is that being a party pooper. There are no guarantees in this battle. I have the questions posed to the surgeon. I just want to know all my options and be able to make an informed decision. I have full trust in the team of physicians and I'll go by what they say. At the very least, the Amistafine (sp) sounds like a risk worth taking to avoid becoming an expert lugie hocker ;)~

    "T"

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    Preemptive Strike

    Hi John,

    By no means is that being a party pooper. There are no guarantees in this battle. I have the questions posed to the surgeon. I just want to know all my options and be able to make an informed decision. I have full trust in the team of physicians and I'll go by what they say. At the very least, the Amistafine (sp) sounds like a risk worth taking to avoid becoming an expert lugie hocker ;)~

    "T"

     

    I Hear Ya...

    Well informed is always good...

    Also, like you mentioned, trust in your MD's is huge... After all, they are the experts, mine were/are awesome. I couldn't have had a better team than what I have. I still see them for my semi-annual exams now, as well as the nurses at the chemo center...they are totally awesome.

    As much as I talk of the Amifostine, it wasn't that bad of an experience considering all of the other crap you deal with. But those last few injections pretty much sucked.

    But, it was totally worth not having that thick choking phlegm many speak of...if that indeed was the reason I didn't get it, and I presume it was.

    JG

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Skiffin16 said:

    I Hear Ya...

    Well informed is always good...

    Also, like you mentioned, trust in your MD's is huge... After all, they are the experts, mine were/are awesome. I couldn't have had a better team than what I have. I still see them for my semi-annual exams now, as well as the nurses at the chemo center...they are totally awesome.

    As much as I talk of the Amifostine, it wasn't that bad of an experience considering all of the other crap you deal with. But those last few injections pretty much sucked.

    But, it was totally worth not having that thick choking phlegm many speak of...if that indeed was the reason I didn't get it, and I presume it was.

    JG

    It certainly doesn't hurt....

    ...that Johns Hopkins is the 3rd highest rated cancer center in the country. Winchester came in around 94th and wasn't even listed as a comprehensive cancer center scoring 24.7 out of 100 with a far below average in survival rating. I'm not saying that there aren't hospitals that have excellent programs but my experience at Winchester left me a bit shaken. I've yet to hear back from from anyone after last week! Not even a "what did you decide?" call. 

    "T"

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    fishmanpa said:

    It certainly doesn't hurt....

    ...that Johns Hopkins is the 3rd highest rated cancer center in the country. Winchester came in around 94th and wasn't even listed as a comprehensive cancer center scoring 24.7 out of 100 with a far below average in survival rating. I'm not saying that there aren't hospitals that have excellent programs but my experience at Winchester left me a bit shaken. I've yet to hear back from from anyone after last week! Not even a "what did you decide?" call. 

    "T"

     

    I watched the video...

    and thoroughly enjoyed it....thanks for sharing!!

    p

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    It certainly doesn't hurt....

    ...that Johns Hopkins is the 3rd highest rated cancer center in the country. Winchester came in around 94th and wasn't even listed as a comprehensive cancer center scoring 24.7 out of 100 with a far below average in survival rating. I'm not saying that there aren't hospitals that have excellent programs but my experience at Winchester left me a bit shaken. I've yet to hear back from from anyone after last week! Not even a "what did you decide?" call. 

    "T"

     

    Ironic...

    My ENT in my very small town...of Lakeland Florida...actually has his Medical Degree from Harvard, and did his 2 - 4 year internship at John-Hopkins...

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    GOOD ANSWER!

    This is the reply from my surgeon concerning salivary gland transfer and/or drug therapy.


    "We don't perform gland transfers here. With surgery and IMRT radiation (Dr. Quon) you should expect to have excellent salivary function afterwards as much of his glands will be remain intact and functional. Most patients return to full or near full salivary flow 6-12mo after completion of treatment."


    That's what I like to hear!

    "T"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    GOOD ANSWER!

    This is the reply from my surgeon concerning salivary gland transfer and/or drug therapy.


    "We don't perform gland transfers here. With surgery and IMRT radiation (Dr. Quon) you should expect to have excellent salivary function afterwards as much of his glands will be remain intact and functional. Most patients return to full or near full salivary flow 6-12mo after completion of treatment."


    That's what I like to hear!

    "T"

    ExcellentAwesome

    Exactly what I (and others) have been saying to many here..., just never saw in in writing, can only give my experience and observations of others over the nearly last four years.

    Very cool T...

    JG

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Skiffin16 said:

    ExcellentAwesome

    Exactly what I (and others) have been saying to many here..., just never saw in in writing, can only give my experience and observations of others over the nearly last four years.

    Very cool T...

    JG

     

    What a difference a Doctor makes!

    Hey John,

    The first Rad Oncologist I met with said he was going to "sacrifice" the salivary glands on the left side and "try" to preserve the ones on the right. He didn't mention meds or any way to save them so yeah... I was freaking a bit for sure! Then, when the team looked at the recommendation for the rad therapy, they, in so many words, said that it would be putting me in a situation where irreversable damage could be done. 

    Just knowing they have my best interests in mind helps immensely. So here's to a fish fry by next Spring and bring on the hot sauce!

    "T"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    What a difference a Doctor makes!

    Hey John,

    The first Rad Oncologist I met with said he was going to "sacrifice" the salivary glands on the left side and "try" to preserve the ones on the right. He didn't mention meds or any way to save them so yeah... I was freaking a bit for sure! Then, when the team looked at the recommendation for the rad therapy, they, in so many words, said that it would be putting me in a situation where irreversable damage could be done. 

    Just knowing they have my best interests in mind helps immensely. So here's to a fish fry by next Spring and bring on the hot sauce!

    "T"

    You Got It Buddy

    Anytime you an Marci are in the area....

    I've met several on here over the last four years...

    JG

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    fishmanpa said:

    What a difference a Doctor makes!

    Hey John,

    The first Rad Oncologist I met with said he was going to "sacrifice" the salivary glands on the left side and "try" to preserve the ones on the right. He didn't mention meds or any way to save them so yeah... I was freaking a bit for sure! Then, when the team looked at the recommendation for the rad therapy, they, in so many words, said that it would be putting me in a situation where irreversable damage could be done. 

    Just knowing they have my best interests in mind helps immensely. So here's to a fish fry by next Spring and bring on the hot sauce!

    "T"

    I failed to mention

    I didn't mention that I too lost my saliva and taste just like everyone else who has rads to the mouth.  But then the question was concerning the moving of the major salivary gland.

     

    You got the best answer anyone could hope for.  That must have taken a load off your mind.

     

    Tom