adult PNET
Comments
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im sorry to hear of your financees diagnoses. I found a description of his tumor PNET(Primitive Neuroectodermal Tumor. If this link does not work you can find it by going to google and just typing in the name of the book A Primer Of Brain Tumors.
http://search.netscape.com/ns/boomframe.jsp?query=a+primer+of+brain+tumors&page=1&offset=0&result_u=redir?src=websearch&requestId=d527ebaf7741b571&clickedItemRank=1&userQuery=a+primer+of+brain+tumors&clickedItemURN=http%3A%2F%2Fneurosurgery.mgh.harvard.edu%2Fabta%2Fprimer.htm&invocationType=-&fromPage=NSCPIndex2&ampTest=1&remove_url=http://neurosurgery.mgh.harvard.edu/abta/primer.htm
This is a site for a book called a Primer of Brain tumors. It has a list of tumors with there description and usual form of treatment. It gives a great detailed paragraph on the PNET. It also has termonology I found usful as a patient. I hope this is of some help to you.
B.0 -
jkorfhage@integraonline.comjkorfhage said:My niece was recently diagnosed with a PNET. She is at an in-between age (17) so I'm not sure it would be categorize as an adult PNET. As far as I know though, these tumors are usually in children age 10 and under. If you would like to chat more, send me an email.
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Hi -jkorfhage said:My niece was recently diagnosed with a PNET. She is at an in-between age (17) so I'm not sure it would be categorize as an adult PNET. As far as I know though, these tumors are usually in children age 10 and under. If you would like to chat more, send me an email.
I tried to reply to you a while ago but this system is a bit confusing. How is your niece doing? My husband finished his 6 weeks of cranio-spinal radiation and had a CLEAN MRI on Sept 13. He had tumor margins and a small nodule remaining after the surgery, so the clean MRI was cause for celebration. He had a mediport put in last week, and will start chemo this Thursday. There was some debate between our doc at Georgetown and the consulting oncologist at the NCI regarding which chemo cocktail to use, but we're going with the one usually used in peds cases: 6 week cycles of vincristine, CCNU and cisplating. Steve got a weekly push of vincristine during teh radition, and he's already experiencing some neuropathy from that, so I'm not sure how long they'll keep up with that portion of the chemo. He's still a little nauseous at times, and still weaker than we'd like going into the chemo. However, I'd say we both feel that it's time to get the show on the road. He'll have MRIs every two cycles, and hopefully, they'll remain clean. This has been and continues to be a nightmare, but it doesn't seem I'm going to wake up. So, we try to stay in good spirits and keep things as normal as possible. I hope you're niece is doing as well as Steve.0 -
Adult P.N.E.T.
I'm so sorry about your fiancee. My dad was diagnosed with 5 P.N.E.T. brain tumors and he is 51. Needless to say, the doctors are very confused and we've had the same experience. No one knows why he has this or how it started. They speculate some of the cancer, very minute cells, were hiding in his spine and when he had a car accident something got released into his brain, but we can't prove this. This whole experience has been horrible but it is good to know that other people are asking the same questions about adult P.N.E.T. tumors. My dad just finished his last round of radiation and will be recovering for a month before getting an M.R.I. to see if they shrank. This cancer sure is hard to deal with but I'm hoping for the best and positive thoughts are always good.
All the best in the world to you and to anyone else with any kind of cancer.
Kaley0 -
adult PNETjkorfhage said:My niece was recently diagnosed with a PNET. She is at an in-between age (17) so I'm not sure it would be categorize as an adult PNET. As far as I know though, these tumors are usually in children age 10 and under. If you would like to chat more, send me an email.
I think were in the same boat.
My 24 year old seemingly healthy nephew has been in and out of the hospital for about three weeks complaining of sever headaches and nausea.They first diagnosed him with viral meningitis which the associated with his headaches, nausea, and slight swelling of his brain. After almost a week in the hospital and no relief for his headaches and an added complication of extreme vomiting the decided to do a MRI. The MRI showed small lesion on his brain and spinal cord. Again they associated this to the previous diagnosed meningitis. They prescribe him some medication for the vomiting and steroids for the swelling in his brain and sent him home. He was home two days before his symptoms got progressively worst and he had to go back to the hospital for another 4 day stay. This time they preformed while there the preformed two separate spinal taps which came back inconclusive. Finally unfortunately for us early last week they diagnosed him with what they thought was Small Blue Cells. Small Blue Cells seem to have the same characteristics of PNET, but the survival rate is less than 20%. To confirm this they wanted to do another painful spinal tap or a brain byospy. He opted for the brian byospy which was preformed this past Friday. After patiently waiting all week for the results they told my sister they think he has PNET, but she might want to get a second opinion. I very confused and frustrated at this point because of what I've read online about this cancer. Can anyone shed some light on this type of cancer? I know it is commonly found in children and very rare in adults. I would appreciate any advise anyone can give to help my family cope with this heart wrenching news.0 -
Adult P.N.E.TKaley93 said:Adult P.N.E.T.
I'm so sorry about your fiancee. My dad was diagnosed with 5 P.N.E.T. brain tumors and he is 51. Needless to say, the doctors are very confused and we've had the same experience. No one knows why he has this or how it started. They speculate some of the cancer, very minute cells, were hiding in his spine and when he had a car accident something got released into his brain, but we can't prove this. This whole experience has been horrible but it is good to know that other people are asking the same questions about adult P.N.E.T. tumors. My dad just finished his last round of radiation and will be recovering for a month before getting an M.R.I. to see if they shrank. This cancer sure is hard to deal with but I'm hoping for the best and positive thoughts are always good.
All the best in the world to you and to anyone else with any kind of cancer.
Kaley
Hi Kaley,
I'm sorry to hear about your dad and was wondering how is he doing now? Your comment was posted 3 months ago so I was curious to hear his outcome.0 -
PNET46ksales said:adult PNET
I think were in the same boat.
My 24 year old seemingly healthy nephew has been in and out of the hospital for about three weeks complaining of sever headaches and nausea.They first diagnosed him with viral meningitis which the associated with his headaches, nausea, and slight swelling of his brain. After almost a week in the hospital and no relief for his headaches and an added complication of extreme vomiting the decided to do a MRI. The MRI showed small lesion on his brain and spinal cord. Again they associated this to the previous diagnosed meningitis. They prescribe him some medication for the vomiting and steroids for the swelling in his brain and sent him home. He was home two days before his symptoms got progressively worst and he had to go back to the hospital for another 4 day stay. This time they preformed while there the preformed two separate spinal taps which came back inconclusive. Finally unfortunately for us early last week they diagnosed him with what they thought was Small Blue Cells. Small Blue Cells seem to have the same characteristics of PNET, but the survival rate is less than 20%. To confirm this they wanted to do another painful spinal tap or a brain byospy. He opted for the brian byospy which was preformed this past Friday. After patiently waiting all week for the results they told my sister they think he has PNET, but she might want to get a second opinion. I very confused and frustrated at this point because of what I've read online about this cancer. Can anyone shed some light on this type of cancer? I know it is commonly found in children and very rare in adults. I would appreciate any advise anyone can give to help my family cope with this heart wrenching news.
My name is Sharon and I was looking around on the net and thought I would check to see how far they have come with the treatment of PNET Cancer...
My 15 year old Son had PNET Cancer in his kidney in 1997 at that time we were only able to find 3 other people to have had this cancer outside the bone ... It was very rare and they knew very little about it then . I can not believe that it now is so common in the brain and other areas ..
I know some herbal treatments that help with the kemo ... I also can answer some questions about how they once thought it was and how it reacted to certain drugs ..
God bless all of you and please feel free to ask me anything .. I would be glad to help ..
Always , Sharon
God Bless0 -
2011 PNET Caner in my friendKaley93 said:Adult P.N.E.T.
I'm so sorry about your fiancee. My dad was diagnosed with 5 P.N.E.T. brain tumors and he is 51. Needless to say, the doctors are very confused and we've had the same experience. No one knows why he has this or how it started. They speculate some of the cancer, very minute cells, were hiding in his spine and when he had a car accident something got released into his brain, but we can't prove this. This whole experience has been horrible but it is good to know that other people are asking the same questions about adult P.N.E.T. tumors. My dad just finished his last round of radiation and will be recovering for a month before getting an M.R.I. to see if they shrank. This cancer sure is hard to deal with but I'm hoping for the best and positive thoughts are always good.
All the best in the world to you and to anyone else with any kind of cancer.
Kaley
hi there
my friend just found out that she has Pnet cancer. it has already spread to the surroundings of her heart, lungs, kidneys, bone marrow and to her lymphglands. How was the treatment that they gave your dad?0 -
PNET Tumor Information
http://emedicine.medscape.com/article/855644overview0 -
PNET in adults
My husband was just diagnosed with a PNET tumor in his brain. A brain biopsy was taken five weeks ago and within those five weeks the tumor grew back to a golfball size. He is going in for surgery tomorrow followed by radiation and chemo. They say that they are treating for cure, so that's reassuring...please wish us luck!0 -
herbal medsSharon1960 said:PNET
My name is Sharon and I was looking around on the net and thought I would check to see how far they have come with the treatment of PNET Cancer...
My 15 year old Son had PNET Cancer in his kidney in 1997 at that time we were only able to find 3 other people to have had this cancer outside the bone ... It was very rare and they knew very little about it then . I can not believe that it now is so common in the brain and other areas ..
I know some herbal treatments that help with the kemo ... I also can answer some questions about how they once thought it was and how it reacted to certain drugs ..
God bless all of you and please feel free to ask me anything .. I would be glad to help ..
Always , Sharon
God Bless
My 16 year old son just started chemo treatments for PNET cancer in his brain. He is having a very tough time with the nausea. It has been 8 days since his chemo and he is still having problems. He has lost 41 lbs since being diagnosed in April. He is 6 ft tall and weighs 118 lbs. I am really trying to get something to help.
Thank you for anything you can share.
Kim0 -
weight lossjordyllon said:herbal meds
My 16 year old son just started chemo treatments for PNET cancer in his brain. He is having a very tough time with the nausea. It has been 8 days since his chemo and he is still having problems. He has lost 41 lbs since being diagnosed in April. He is 6 ft tall and weighs 118 lbs. I am really trying to get something to help.
Thank you for anything you can share.
Kim
Hi, Kim.
My son is 6'3" and weighs 158, and he looks pretty skinny, so I can only imagine how very, very thin your son must be.
We have not had really super-serious nausea issues, though David does take Zofran for nausea when he does chemo. I correspond with a young man (28) who gets really sick when he takes Temodar (an oral chemo) and he gets anti-nausea medicine via IV while he takes the oral chemo. Please forgive me for asking, but are you seeing a doctor who specializes in PNET cancers? I would think that they should have medicine to control the nausea?
I don't know if I should recommend this...but I would be constantly in my son's doctors' faces about this nausea and how thin your son is. I have been persistent--not rude, but firm and insistent-- about getting things for my son (blood pressure cuff, pain medicine, etc.) because sometimes he feels too rotten to do it for himself. I've been pretty successful in getting what he needs, in a timely matter...for the most part.
I've heard that peppermint tea is supposed to help settle your stomach, but I don't think it's good enough to deal with this kind of nausea. I think that you need some powerful anti-nausea medicine. Please keep pursuing this with your doctors until they find something that can help your son to feel better.
I will be praying for you. I know how hard it is to see our sons suffering. Please keep this board updated.
Love and blessings,
Cindy0 -
Just started chemo and radiationjordyllon said:herbal meds
My 16 year old son just started chemo treatments for PNET cancer in his brain. He is having a very tough time with the nausea. It has been 8 days since his chemo and he is still having problems. He has lost 41 lbs since being diagnosed in April. He is 6 ft tall and weighs 118 lbs. I am really trying to get something to help.
Thank you for anything you can share.
Kim
My son is 17, and was just diagnosed with Medulloblastoma in July. He started radiation and chemo together, 5 days a week, starting last week. Last week he was sick as a dog, and had to be readmitted to the hospital to keep his fluids up. This week we seem to have gotten ahead on the anti-nausia meds, and he is doing much better. He is on Zofran too, along with some others. He's been back home since Friday. It seems you really have to be proactive with the anti-nausia meds. Once they are sick, its too late.
I hope for the best for you and your son.
Bill0 -
nauseacindysuetoyou said:weight loss
Hi, Kim.
My son is 6'3" and weighs 158, and he looks pretty skinny, so I can only imagine how very, very thin your son must be.
We have not had really super-serious nausea issues, though David does take Zofran for nausea when he does chemo. I correspond with a young man (28) who gets really sick when he takes Temodar (an oral chemo) and he gets anti-nausea medicine via IV while he takes the oral chemo. Please forgive me for asking, but are you seeing a doctor who specializes in PNET cancers? I would think that they should have medicine to control the nausea?
I don't know if I should recommend this...but I would be constantly in my son's doctors' faces about this nausea and how thin your son is. I have been persistent--not rude, but firm and insistent-- about getting things for my son (blood pressure cuff, pain medicine, etc.) because sometimes he feels too rotten to do it for himself. I've been pretty successful in getting what he needs, in a timely matter...for the most part.
I've heard that peppermint tea is supposed to help settle your stomach, but I don't think it's good enough to deal with this kind of nausea. I think that you need some powerful anti-nausea medicine. Please keep pursuing this with your doctors until they find something that can help your son to feel better.
I will be praying for you. I know how hard it is to see our sons suffering. Please keep this board updated.
Love and blessings,
Cindy
Hi:
My daughter is on on chemo for AA3. We take zofran, benedryl and ativan at home for nausea. We also put a scopolamine patch behind her her during the temodar days. I read some information that accupuncture helps for nausea and we are going to try it because even though we do all of these drugs my daughter still throws up from the temodar. During the infusion they also give her Emend via infusion. That temodar is nasty. I send God's blessing to your family.
I agree with being very diligent with the medical professionals.0 -
A concerned wife to anotherandis999 said:PNET in adults
My husband was just diagnosed with a PNET tumor in his brain. A brain biopsy was taken five weeks ago and within those five weeks the tumor grew back to a golfball size. He is going in for surgery tomorrow followed by radiation and chemo. They say that they are treating for cure, so that's reassuring...please wish us luck!
How is your husband doing after surgery? Has he started radiation or chemo yet? My husband was diagnosed May 19th with a tumor to the lining of his brain after having a seizure. After having surgery 5 days later he was diagnosed with brain cancer, and after 5 weeks the doctors diagnosed it as a central pnet. They say it is very rare in adults and they do not know how he got it. He had surgery, radiation and just started chemo. The tumor grew back after surgery and has shrunk just a bit after radiation. Just like with your husband they are treating for a cure, but they can't guarantee us anything. They say that even if it does shrink completely that the chance of a return is highly possible. I am not sure how to take this information. What have your doctors told you? Where are you from and where is your husband getting treatment?0 -
A concerned wife to anotherandis999 said:PNET in adults
My husband was just diagnosed with a PNET tumor in his brain. A brain biopsy was taken five weeks ago and within those five weeks the tumor grew back to a golfball size. He is going in for surgery tomorrow followed by radiation and chemo. They say that they are treating for cure, so that's reassuring...please wish us luck!
How is your husband doing after surgery? Has he started radiation or chemo yet? My husband was diagnosed May 19th with a tumor to the lining of his brain after having a seizure. After having surgery 5 days later he was diagnosed with brain cancer, and after 5 weeks the doctors diagnosed it as a central pnet. They say it is very rare in adults and they do not know how he got it. He had surgery, radiation and just started chemo. The tumor grew back after surgery and has shrunk just a bit after radiation. Just like with your husband they are treating for a cure, but they can't guarantee us anything. They say that even if it does shrink completely that the chance of a return is highly possible. I am not sure how to take this information. What have your doctors told you? Where are you from and where is your husband getting treatment?0 -
A concerned wife to anotherandis999 said:PNET in adults
My husband was just diagnosed with a PNET tumor in his brain. A brain biopsy was taken five weeks ago and within those five weeks the tumor grew back to a golfball size. He is going in for surgery tomorrow followed by radiation and chemo. They say that they are treating for cure, so that's reassuring...please wish us luck!
How is your husband doing after surgery? Has he started radiation or chemo yet? My husband was diagnosed May 19th with a tumor to the lining of his brain after having a seizure. After having surgery 5 days later he was diagnosed with brain cancer, and after 5 weeks the doctors diagnosed it as a central pnet. They say it is very rare in adults and they do not know how he got it. He had surgery, radiation and just started chemo. The tumor grew back after surgery and has shrunk just a bit after radiation. Just like with your husband they are treating for a cure, but they can't guarantee us anything. They say that even if it does shrink completely that the chance of a return is highly possible. I am not sure how to take this information. What have your doctors told you? Where are you from and where is your husband getting treatment?0 -
pnetwife47 said:A concerned wife to another
How is your husband doing after surgery? Has he started radiation or chemo yet? My husband was diagnosed May 19th with a tumor to the lining of his brain after having a seizure. After having surgery 5 days later he was diagnosed with brain cancer, and after 5 weeks the doctors diagnosed it as a central pnet. They say it is very rare in adults and they do not know how he got it. He had surgery, radiation and just started chemo. The tumor grew back after surgery and has shrunk just a bit after radiation. Just like with your husband they are treating for a cure, but they can't guarantee us anything. They say that even if it does shrink completely that the chance of a return is highly possible. I am not sure how to take this information. What have your doctors told you? Where are you from and where is your husband getting treatment?
Hi i am in india and was diagnosed with pnet in cervical C8 nerve post surgery . Was lucky as 99.9 % of the tumor was removed and post investigation pnet was found . have completed 4 cycles of VAC / IE regimen chemotherapy followed by radiotherapy ... and then a further 2 cycles of alternating vac/ie regimen chemo . All seems to be well my counts are up also wbc count is 8000 after couple of shots to improve counts...
Another 10 cycles to go
After 16 cycles there is only a 40% chance of recurring PNET.... any feedback would be valuable...0
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