Salivary Gland Transfer...
Have any of you heard of this or discussed this with your doctor at some point? I was talking to someone earlier this week that had relatively the same cancer diagnosis as myself, Stage 3 SCC BOT HPV+ with some lymph node involvement. His was three years ago. He said they did a SGT (submandibular gland transfer) before his rads and chemo. It was a 45 minute operation to move one of the salivary glands to an area in the front of his chin that could be shielded from the rads and therefore saved. His taste recovered quite quickly. I researched this and apperently it works extremely well and has been around for almost 15 years. My doctors never even brought up this option. I wish that they had or I had known about this beforehand because I certainly would have opted for it. Curious if anyone here has had this or was even told about it. It was even invented by a couple of Canadian doctors and I live in Canada which irks me even more. I really wish I had been told this about beforehand.
Comments
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never heard of it but it
never heard of it but it sounds like a wonderful option that should be given to all patients.
dj
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I know. It sounds like andebbiejeanne said:never heard of it but it
never heard of it but it sounds like a wonderful option that should be given to all patients.
dj
I know. It sounds like an option that should be given to all patients that fall under the parameters of being able to have it. It seems that very few are even aware of this procedure. This is strange to me.
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wish my husband would have had that option to!!
We are also Canadian .. Myy Husband just finished treatments August 2oth.. was stage 4 a had 35 radiation treatments and 3 cysplatin chemos.. still unable to eat having shakes.. his taste for food is nil.. really do not understand why this SGT wouldnt be offered.. of course he was misdiagnosed for over a year..so I guess that would be expecting too much.. you have to be such an advocate to be certain .
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Same date as me...granmudder said:wish my husband would have had that option to!!
We are also Canadian .. Myy Husband just finished treatments August 2oth.. was stage 4 a had 35 radiation treatments and 3 cysplatin chemos.. still unable to eat having shakes.. his taste for food is nil.. really do not understand why this SGT wouldnt be offered.. of course he was misdiagnosed for over a year..so I guess that would be expecting too much.. you have to be such an advocate to be certain .
...I finished 35 rads and 3 cisplatins on Aug. 20th also. Also have zero taste of food and have been using a peg tube for weeks but can now swallow the Ensure and Boost but they taste horrible. I know it's a slow process recovering taste buds, that's why I wish I had known about this procedure beforehand.
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shakesJC F said:Same date as me...
...I finished 35 rads and 3 cisplatins on Aug. 20th also. Also have zero taste of food and have been using a peg tube for weeks but can now swallow the Ensure and Boost but they taste horrible. I know it's a slow process recovering taste buds, that's why I wish I had known about this procedure beforehand.
Hey JCF
Ny hubby too hates ensure or boost or any of those .. ive gotten around that by making up my own shakes for him using full fat icecream.. protein powder.. full fat greek yougurt. and usually soda water.. i sometimes add fruits or an avacado.. hemp oil ( which has lots of fat 2 tbsp 250 calories!) .. he drinks them a lot better for me that the other. He does not have a peg.. trying to keep his weight stable now as he has lost 35 lbs... He sees the Oncologist ( Chemo) next week ....i am goin to inquire about why they wouldnt have offered that procedure.. hopefully they will offer it to future patients! one can only hope..
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I'll try making shakes...granmudder said:shakes
Hey JCF
Ny hubby too hates ensure or boost or any of those .. ive gotten around that by making up my own shakes for him using full fat icecream.. protein powder.. full fat greek yougurt. and usually soda water.. i sometimes add fruits or an avacado.. hemp oil ( which has lots of fat 2 tbsp 250 calories!) .. he drinks them a lot better for me that the other. He does not have a peg.. trying to keep his weight stable now as he has lost 35 lbs... He sees the Oncologist ( Chemo) next week ....i am goin to inquire about why they wouldnt have offered that procedure.. hopefully they will offer it to future patients! one can only hope..
...please post here again when you ask your doctor about the SGT. I'm curious as to what they tell you. My next doctor's appointment isn't until Sept. 18 when I also intend to ask why this wasn't brought up with me. I drink the Boost and Ensure most of the time but still use the peg occasionally because they taste so bad.
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Seems to me that there are a
couple of people on here who had it done.....nobody ever mentioned it to me, either......and of course I was ignorant of any possibilities of that option when I started treatment. I'd love to have one fully operational saliva gland now.
p
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curiousJC F said:I'll try making shakes...
...please post here again when you ask your doctor about the SGT. I'm curious as to what they tell you. My next doctor's appointment isn't until Sept. 18 when I also intend to ask why this wasn't brought up with me. I drink the Boost and Ensure most of the time but still use the peg occasionally because they taste so bad.
I will post as soon as I ask the Dr next Friday. . curious did you have surgery before the treatments? my husband did which was how they found out He had the cancer ..
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That sounds like a marvellous
That sounds like a marvellous thing... and this was the first time I'd heard of it!
I'm with you Frannie - I think the xerostomia is such a ****
they say it might improve.... I'm not holding my breath! Mind you, it might not have helped me, because I had radio all around my head and neck front and back, both sides, from my cheeks down to my shoulders...0 -
No surgery...yet...granmudder said:curious
I will post as soon as I ask the Dr next Friday. . curious did you have surgery before the treatments? my husband did which was how they found out He had the cancer ..
The BOT primary was large so they wanted to do the rads and chemo to attack it. I have right side lymph node involvement where a couple of them are quite large. They have gone down after the treatments but I can still feel a lump in my neck. They will decide in a month or so if I need a dissection which remains a distinct possibility.
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Searched
Searched http://clinicaltrials.gov for "submandibular gland transfer". This subject is poorly trialed and I could not find any results from a single phase III trial.
After reading through the data, it got me thinking more deeply about doing this.
Many of us do not have any surgery before doing rads or chemo/rads. In these cases what is the potential benefit from the risks and costs of the surgery just to do this procedure? When you look at all the things that can go potentially wrong with surgeries, my vote is suffering dry mouth is less a problem than some side effect from the surgery.
For those who have surgery, some have just the neck nodes areas dissected and there is no surgery in the gland area. Same issue as first, is the potential benefit justify the risks and costs of doing the surgery in the secondary area.
For those who have surgery in the oral cavity such as tonsils, is it worth risks and costs to move this gland? Maybe, maybe not. The concern I have is what happens if there are micro cancer cells hiding there? Then you move the cancerous gland to an area NOT being hit by rads? Sounds like a big mistake.
If the relocated gland still receives some rads as is done for most, then what are you actually saving? A lower dose is painted in a broad area to kill any loose cancers while causing minimal tissue damange.
There seems insufficient medical studies to prove this helps and under what specific conditions. What would make a bigger difference is get educated on the radiation process and prod your RO to make sure the radiation map addresses your concerns over parotid gland preservation.
For those who got this far, I had a few discussions with my RO about ensuring the map did as much to minimize long term damage. Specifically, I asked about the parotid glands. When asked about sparing them from rads, he made the statement that grays are spread all around the area and adjusted to areas where the identified cancers are detected. But the entire area is painted/dosed with a lesser amount (60gy maybe) to ensure all cancer is killed off.
If the dosimetrist is careful in creating the map and contouring as best possible to miminize rads to the parotid glands that may do as well as any surgery.
Who knows, just babbling as usual.
Responsible Party:
Radiation Therapy Oncology Group ClinicalTrials.gov Identifier: NCT00068237 History of Changes Other Study ID Numbers: RTOG-0244, CDR0000287213 Study First Received: September 10, 2003 Results First Received: October 29, 2013 Last Updated: February 5, 2014 Health Authority: United States: Federal Government
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informed babbling!donfoo said:Searched
Searched http://clinicaltrials.gov for "submandibular gland transfer". This subject is poorly trialed and I could not find any results from a single phase III trial.
After reading through the data, it got me thinking more deeply about doing this.
Many of us do not have any surgery before doing rads or chemo/rads. In these cases what is the potential benefit from the risks and costs of the surgery just to do this procedure? When you look at all the things that can go potentially wrong with surgeries, my vote is suffering dry mouth is less a problem than some side effect from the surgery.
For those who have surgery, some have just the neck nodes areas dissected and there is no surgery in the gland area. Same issue as first, is the potential benefit justify the risks and costs of doing the surgery in the secondary area.
For those who have surgery in the oral cavity such as tonsils, is it worth risks and costs to move this gland? Maybe, maybe not. The concern I have is what happens if there are micro cancer cells hiding there? Then you move the cancerous gland to an area NOT being hit by rads? Sounds like a big mistake.
If the relocated gland still receives some rads as is done for most, then what are you actually saving? A lower dose is painted in a broad area to kill any loose cancers while causing minimal tissue damange.
There seems insufficient medical studies to prove this helps and under what specific conditions. What would make a bigger difference is get educated on the radiation process and prod your RO to make sure the radiation map addresses your concerns over parotid gland preservation.
For those who got this far, I had a few discussions with my RO about ensuring the map did as much to minimize long term damage. Specifically, I asked about the parotid glands. When asked about sparing them from rads, he made the statement that grays are spread all around the area and adjusted to areas where the identified cancers are detected. But the entire area is painted/dosed with a lesser amount (60gy maybe) to ensure all cancer is killed off.
If the dosimetrist is careful in creating the map and contouring as best possible to miminize rads to the parotid glands that may do as well as any surgery.
Who knows, just babbling as usual.
Responsible Party:
Radiation Therapy Oncology Group ClinicalTrials.gov Identifier: NCT00068237 History of Changes Other Study ID Numbers: RTOG-0244, CDR0000287213 Study First Received: September 10, 2003 Results First Received: October 29, 2013 Last Updated: February 5, 2014 Health Authority: United States: Federal Government
Is good!
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Such Short Memoriesdonfoo said:Searched
Searched http://clinicaltrials.gov for "submandibular gland transfer". This subject is poorly trialed and I could not find any results from a single phase III trial.
After reading through the data, it got me thinking more deeply about doing this.
Many of us do not have any surgery before doing rads or chemo/rads. In these cases what is the potential benefit from the risks and costs of the surgery just to do this procedure? When you look at all the things that can go potentially wrong with surgeries, my vote is suffering dry mouth is less a problem than some side effect from the surgery.
For those who have surgery, some have just the neck nodes areas dissected and there is no surgery in the gland area. Same issue as first, is the potential benefit justify the risks and costs of doing the surgery in the secondary area.
For those who have surgery in the oral cavity such as tonsils, is it worth risks and costs to move this gland? Maybe, maybe not. The concern I have is what happens if there are micro cancer cells hiding there? Then you move the cancerous gland to an area NOT being hit by rads? Sounds like a big mistake.
If the relocated gland still receives some rads as is done for most, then what are you actually saving? A lower dose is painted in a broad area to kill any loose cancers while causing minimal tissue damange.
There seems insufficient medical studies to prove this helps and under what specific conditions. What would make a bigger difference is get educated on the radiation process and prod your RO to make sure the radiation map addresses your concerns over parotid gland preservation.
For those who got this far, I had a few discussions with my RO about ensuring the map did as much to minimize long term damage. Specifically, I asked about the parotid glands. When asked about sparing them from rads, he made the statement that grays are spread all around the area and adjusted to areas where the identified cancers are detected. But the entire area is painted/dosed with a lesser amount (60gy maybe) to ensure all cancer is killed off.
If the dosimetrist is careful in creating the map and contouring as best possible to miminize rads to the parotid glands that may do as well as any surgery.
Who knows, just babbling as usual.
Responsible Party:
Radiation Therapy Oncology Group ClinicalTrials.gov Identifier: NCT00068237 History of Changes Other Study ID Numbers: RTOG-0244, CDR0000287213 Study First Received: September 10, 2003 Results First Received: October 29, 2013 Last Updated: February 5, 2014 Health Authority: United States: Federal Government
It may have been me who you're referring to. As far as I know it has only been discussed in my case and then another who asked his doctor to call mine to see if he would qualify.
My cancer was not SCC, but MEC. Mucoepidermoid Carcinoma. It was a base of tongue tumor that had to be removed via TORS, the robot arm. My lymph node on the right side of my neck was clearly visible so I ended up with a radical right neck dissection. During the operation my surgeon removed my right parotid salivary gland because it would have been lost with rads anyway. He then moved my left gland to the center of my chin and instructed the radiation team to avoid that area.
It worked quite well. My left gland is working overtime to make up for the other one. Still I get a dry mouth during the night. For some reason I can only sleep on my back and then my mouth opens and the sahara desert moves in. That wakes me up several times during the night but at least I still have saliva. And yes, my taste buds came back pretty quick too. With my cancer I didn't need chemo. It seems to have no effect on it so surgery and rads was all I got for treatment.
Feel free to contact me if you need more details. labiker@hotmail.com
Tom
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yestommyodavey said:Such Short Memories
It may have been me who you're referring to. As far as I know it has only been discussed in my case and then another who asked his doctor to call mine to see if he would qualify.
My cancer was not SCC, but MEC. Mucoepidermoid Carcinoma. It was a base of tongue tumor that had to be removed via TORS, the robot arm. My lymph node on the right side of my neck was clearly visible so I ended up with a radical right neck dissection. During the operation my surgeon removed my right parotid salivary gland because it would have been lost with rads anyway. He then moved my left gland to the center of my chin and instructed the radiation team to avoid that area.
It worked quite well. My left gland is working overtime to make up for the other one. Still I get a dry mouth during the night. For some reason I can only sleep on my back and then my mouth opens and the sahara desert moves in. That wakes me up several times during the night but at least I still have saliva. And yes, my taste buds came back pretty quick too. With my cancer I didn't need chemo. It seems to have no effect on it so surgery and rads was all I got for treatment.
Feel free to contact me if you need more details. labiker@hotmail.com
Tom
JC F,
I remembered, it was Tom.
Matt
Glad it worked Tom.
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Any others that had saliva gland transferCivilMatt said:yes
JC F,
I remembered, it was Tom.
Matt
Glad it worked Tom.
It appears the University of Nevada, University of California - San Diego, University of California - San Francisco, and Johns Hopkins are offering this procedure. Perhaps there are other institutions that are offering this as well.
Have not seen other posts on this procedure in the forum....Checking to see if anyone else had submandibular gland transfer and how were the results.
-Ray0 -
Phrannie guardsphrannie51 said:Seems to me that there are a
couple of people on here who had it done.....nobody ever mentioned it to me, either......and of course I was ignorant of any possibilities of that option when I started treatment. I'd love to have one fully operational saliva gland now.
p
I agree with you but I also think more guards could be used in the masks for protection to sensitive glands, if possible. If it would interfere with killing your Cancer area than I understand. When I was a Rad Tech we had guards we had to wear whenever doing films plus a gauge to register how much your receiving. I personally feel more care should be taken to minimize & protect when possible. Mine was left tonsil skin no lymph nodes involved. They radiated both sides, said the small spot was on the middle line why he felt to hit both sides. Now 3 yrs later NO saliva.....dead, no taste buds really, thyroid messed up, nasal closing up left side. small spot, HPV positive, no lymph involvement yet this many side effects for life. Drink too much fluid since mouth is 24/7 drier than the desert which has caused sodium depletion from urniating too much, so 6-8 salt pills (1gm) each plus food loaded with salt to keep it up at My new low, 125. Already a stroke from sodium dropping too low, every 2 weeks blood testing for sodium level. I was treated with more caring as a tech around Radiation than as a patient. Guards are needed and letting you know information instead of pushing for what they want.
How are you doing and your nemesi. Is she finally out of your life? Hope you are well and living life to the best. Hugs, Lisa
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Drivingdaisy Sorry You AreDrivingdaisy said:Phrannie guards
I agree with you but I also think more guards could be used in the masks for protection to sensitive glands, if possible. If it would interfere with killing your Cancer area than I understand. When I was a Rad Tech we had guards we had to wear whenever doing films plus a gauge to register how much your receiving. I personally feel more care should be taken to minimize & protect when possible. Mine was left tonsil skin no lymph nodes involved. They radiated both sides, said the small spot was on the middle line why he felt to hit both sides. Now 3 yrs later NO saliva.....dead, no taste buds really, thyroid messed up, nasal closing up left side. small spot, HPV positive, no lymph involvement yet this many side effects for life. Drink too much fluid since mouth is 24/7 drier than the desert which has caused sodium depletion from urniating too much, so 6-8 salt pills (1gm) each plus food loaded with salt to keep it up at My new low, 125. Already a stroke from sodium dropping too low, every 2 weeks blood testing for sodium level. I was treated with more caring as a tech around Radiation than as a patient. Guards are needed and letting you know information instead of pushing for what they want.
How are you doing and your nemesi. Is she finally out of your life? Hope you are well and living life to the best. Hugs, Lisa
Experiencing so many side affects especially the sodium problem. We never know exactly how we will end up for our new normal till the treatments done and we are a year out. Glad you are staying on top of it with blood tests. Hang in there and keep dealing with your leftovers. I go to my local survivor's group and read here regularly and there are some not as bad off as me and some deal with a lot worse every day. So I figger if they can do it I can I just have different new normal and situation. Thankful I am doing as well as I am but you know we always wish for a little more. We're always pullin for ya on this forum Drivingdaisy as I know you are dealing with multiple problems from your treatment. Stay strong as ya can. You are correct if the techs are protected and monitored I would think the patients could have some protection in some areas. But I am thinking it would be limited because it probably would interfere with the treatment and not eliminate all the cancer cells seeing as our cancer, H&N always involves a mask. Take Care-God Bless
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Keep it active
raym372, just by occaisionally posting on this topic it keeps it on the first page for everyone to see. I too will try to add more as time goes by.
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