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adult PNET

triley66
Posts: 3
Joined: Jul 2004

My fiancee was diagnosed with PNET in early June after surgery to remove a golf-ball size tumor from his brain. He's recovered very well from the surgery and is due to start treatment (radiation plus chemo followed by chemo) this week. We've been told by everyone out there that this cancer is very rare in adults, and no one in our support group had even heard of it. If anyone has any input, please write back to me. Thanks.

mrsbe
Posts: 58
Joined: Jun 2001

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%3Fsrc%3Dwebsearch%26requestId%3Dd527ebaf7741b571%26clickedItemRank%3D1%26userQuery%3Da%2Bprimer%2Bof%2Bbrain%2Btumors%26clickedItemURN%3Dhttp%253A%252F%252Fneurosurgery.mgh.harvard.edu%252Fabta%252Fprimer.htm%26invocationType%3D-%26fromPage%3DNSCPIndex2%26amp%3BampTest%3D1&remove_url=http%3A%2F%2Fneurosurgery.mgh.harvard.edu%2Fabta%2Fprimer.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.

jkorfhage
Posts: 2
Joined: Jul 2004

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.

jkorfhage
Posts: 2
Joined: Jul 2004

jkorfhage@integraonline.com

triley66
Posts: 3
Joined: Jul 2004

Hi -

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.

Lisa1223
Posts: 2
Joined: Jan 2012

I noticed your post because it sounds so similar...my best friend's husband has been diagnosed in the past year. He too, has been undergoing the therapies typically recommended for children and is already experiencing sever side effects, including neuropathy and seizures, and the tumor has recurred despite treatment. Do you have any recommendations? I just noticed the date on this and pray your husband has been doing well...thank you for anything you might be able to offer.

Febtember
Posts: 6
Joined: Feb 2012

.

Febtember
Posts: 6
Joined: Feb 2012

My fiancee was treated originally using those traditional chemos for PNET in kids (vincristine). He had a port in his chest and would get these bags of crap dumped into him all day long. I believe he was in chemo treatment the first time for... five or six months. The tumor stayed at bay for like three years and then came back. He had a second surgery and it was awful. The recovery was terrible and he refused treatment because the first go-round was very very bad. He didn't think he could live through it again. He was far more afraid of the treatment than the surgery. (He is 30.) He was down to 130 pounds, hairless, and couldn't even drink water comfortably from the hardcore radiation and chemo. The tumor came back yet again and we switched med facilities and all of the doctors we had. They performed a third surgery to remove recurrence and placed a port in his brain at the new facility (as apparently the PNETs are very prone to recurrence in the same area or can spread into the spine -- this is why they placed the Ommya Reservoir (port), to treat the entire CNS. He receives treatments in the brain port. originally it was once a week, right after his last surgery, and now we are at every other month. It is going on one year in Feb. (2012) since the port was placed and the last surgery was performed. He is also on cancer meds/ oral chemos Tykerb and Etoposide. He gets shots in the butt of a med called Sandostatin once a month as well. HOWEVER, he is doing very well. There is no nausea, vomiting, sickness, fevers, hair loss, loss of appetite, neurological damage, from this current course of treatment and there is no presence of cancer in the brain or spine so far. Some of the questionable areas at the old surgical site have also cleared up. The port also allows them to take samples of spinal fluid each time we report for treatment w/out having a spinal tap, and those samples show that the spinal fluid is cancer free too, it allows them to have access to the brain as needed. I hated this idea when it was presented to us but now I am very grateful. There is some degree of potential infection each time they tap the port, if bacteria should enter the brain (but i have been assured it is treatable), and that can be dangerous as there is no filter system like the blood (nothing is really supposed to get it there). So far we have been lucky that there has been no infection. So, there are alternatives to the traditional treatment. The long-term neuro damage that he suffers is restless legs, numbing of the feet and hands. Our current neuro-oncologist said this could also become worse with age.

Lee Davis
Posts: 1
Joined: Aug 2013

Hello my name is karen davis and my son who is 30 yrs. old has pnet in his

brain,  we have had 1 operation and the high dosses of brain and spine 

radiation.  On  or about the first week of November we will be doing the

chemo. Even though we r lucky in having John Hopkins in our city they r not

giving us the hope or more options that we would like,  so my question to you

is how is your fiance?  I have just contacted the City of Hope they r just starting

human studies for aggressive brain .  I would love to hear from you.

 

                                                                  Thanks

                                                                   Karen

 

Febtember
Posts: 6
Joined: Feb 2012

My fiancee was treated originally using those traditional chemos for PNET in kids (vincristine). He had a port in his chest and would get these bags of crap dumped into him all day long. I believe he was in chemo treatment the first time for... five or six months. The tumor stayed at bay for like three years and then came back. He had a second surgery and it was awful. The recovery was terrible and he refused treatment because the first go-round was very very bad. He didn't think he could live through it again. He was far more afraid of the treatment than the surgery. (He is 30.) He was down to 130 pounds, hairless, and couldn't even drink water comfortably from the hardcore radiation and chemo. The tumor came back yet again and we switched med facilities and all of the doctors we had. They performed a third surgery to remove recurrence and placed a port in his brain at the new facility (as apparently the PNETs are very prone to recurrence in the same area or can spread into the spine -- this is why they placed the Ommya Reservoir (port), to treat the entire CNS. He receives treatments in the brain port. originally it was once a week, right after his last surgery, and now we are at every other month. It is going on one year in Feb. (2012) since the port was placed and the last surgery was performed. He is also on cancer meds/ oral chemos Tykerb and Etoposide. He gets shots in the butt of a med called Sandostatin once a month as well. HOWEVER, he is doing very well. There is no nausea, vomiting, sickness, fevers, hair loss, loss of appetite, neurological damage, from this current course of treatment and there is no presence of cancer in the brain or spine so far. Some of the questionable areas at the old surgical site have also cleared up. The port also allows them to take samples of spinal fluid each time we report for treatment w/out having a spinal tap, and those samples show that the spinal fluid is cancer free too, it allows them to have access to the brain as needed. I hated this idea when it was presented to us but now I am very grateful. There is some degree of potential infection each time they tap the port, if bacteria should enter the brain (but i have been assured it is treatable), and that can be dangerous as there is no filter system like the blood (nothing is really supposed to get it there). So far we have been lucky that there has been no infection. So, there are alternatives to the traditional treatment. The long-term neuro damage that he suffers is restless legs, numbing of the feet and hands. Our current neuro-oncologist said this could also become worse with age.

Febtember
Posts: 6
Joined: Feb 2012

My fiancee was treated originally using those traditional chemos for PNET in kids (vincristine). He had a port in his chest and would get these bags of crap dumped into him all day long. I believe he was in chemo treatment the first time for... five or six months. The tumor stayed at bay for like three years and then came back. He had a second surgery and it was awful. The recovery was terrible and he refused treatment because the first go-round was very very bad. He didn't think he could live through it again. He was far more afraid of the treatment than the surgery. (He is 30.) He was down to 130 pounds, hairless, and couldn't even drink water comfortably from the hardcore radiation and chemo. The tumor came back yet again and we switched med facilities and all of the doctors we had. They performed a third surgery to remove recurrence and placed a port in his brain at the new facility (as apparently the PNETs are very prone to recurrence in the same area or can spread into the spine -- this is why they placed the Ommya Reservoir (port), to treat the entire CNS. He receives treatments in the brain port. originally it was once a week, right after his last surgery, and now we are at every other month. It is going on one year in Feb. (2012) since the port was placed and the last surgery was performed. He is also on cancer meds/ oral chemos Tykerb and Etoposide. He gets shots in the butt of a med called Sandostatin once a month as well. HOWEVER, he is doing very well. There is no nausea, vomiting, sickness, fevers, hair loss, loss of appetite, neurological damage, from this current course of treatment and there is no presence of cancer in the brain or spine so far. Some of the questionable areas at the old surgical site have also cleared up. The port also allows them to take samples of spinal fluid each time we report for treatment w/out having a spinal tap, and those samples show that the spinal fluid is cancer free too, it allows them to have access to the brain as needed. I hated this idea when it was presented to us but now I am very grateful. There is some degree of potential infection each time they tap the port, if bacteria should enter the brain (but i have been assured it is treatable), and that can be dangerous as there is no filter system like the blood (nothing is really supposed to get it there). So far we have been lucky that there has been no infection. So, there are alternatives to the traditional treatment. The long-term neuro damage that he suffers is restless legs, numbing of the feet and hands. Our current neuro-oncologist said this could also become worse with age.

46ksales
Posts: 2
Joined: Oct 2009

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.

Sharon1960
Posts: 1
Joined: Jan 2010

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

jordyllon
Posts: 1
Joined: Aug 2011

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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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.

DevsDad
Posts: 6
Joined: Aug 2011

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.

Bill

Roxy68
Posts: 2
Joined: Mar 2013

Hi Sharon

 

My daughter was just diagnosed with PNET in her right kidney and is recovering from a redicla renal nephrectomy. Chemotherapy is beginning next week. I would love to chat to you about your experiences and glean whatever tips I can from you.

Thanks

D2011
Posts: 1
Joined: Sep 2011

Hi Roxy my name is diana and I also had pnet cancer in my rt kidney.  Has your daughter started chemotherapy?

Kaley93
Posts: 4
Joined: Jul 2009

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

46ksales
Posts: 2
Joined: Oct 2009

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.

asshone
Posts: 2
Joined: Jan 2011

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?

52Karen
Posts: 4
Joined: Mar 2011

My Wife has a golf ball sized PNET located in the thalamus region of her brain and she is 52 years old. Hers is inoperable however treatable. Start radiation / Chemo therapy regimen on March 4th 2011

52Karen
Posts: 4
Joined: Mar 2011

http://emedicine.medscape.com/article/855644overview

andis999
Posts: 1
Joined: Jul 2011

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!

wife47
Posts: 3
Joined: Oct 2011

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?

wife47
Posts: 3
Joined: Oct 2011

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?

wife47
Posts: 3
Joined: Oct 2011

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?

flyingmukaka
Posts: 1
Joined: Apr 2011

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...

Roxy68
Posts: 2
Joined: Mar 2013

My daughter was just diagnosed with this in the kidney, had a nephrectomy 10 days ago and will be beginning chemo. If you have any advice or information to offer I would greatly appreciate it.

Lisa1223
Posts: 2
Joined: Jan 2012

My best friend's husband sounds very similar to your husband. He was diagnosed in March 2011 with a PNET, also after having a seizure. He also had surgery a few days later. The tumor was back 6 weeks later, so he had a 2nd surgery. He then had 2 rounds of radiation, and is in the middle of his 4th of 8 rounds of chemo, and the tumor has recurred despite the treatments. He just had a third surgery and they are not sure what will come next. TO EVERYONE: I would appreciate any feedback regarding clinical trials, radical treatments, suggested facilities or even preferred surgeons or oncologists. Thank you. How is your husband doing?

faith711
Posts: 1
Joined: Mar 2012

My husband also had a brain tumor removed in Aug. 2011. It has been reviewed by many pathologists who could not identify the tumor type. Just yesterday we received news that the latests pathologist believes it may be a cns pnet but he is not 100% sure. They all say the tumor is very very unusual. I would like to know where your husband is being treated and who his doctor is. I pray your husband is doing well. It gives me hope.

Febtember
Posts: 6
Joined: Feb 2012

Just want to tell you my fiancee also has been diagnosed with a PNET tumor and we have been dealing with it for almost three years now. He has had three brain surgeries --one to remove the original tumor, and two additional surgeries about one year apart each, to remove recurrence. We now have a fantastic neuro-oncologist and med team. He has a port in his brain called an Ommaya Reservoir which was placed almost a year ago during the last (most recent) surgery to remove recurrent tumor. The first time around he had a terrible medical team (and surgeon) and was treated with vincristine (sp) as well (as this is effective in pediatric patients who are still growing/developing) and has suffered long-term neurological damage. He is currently in cancer treatment but gets injections into the reservoir. There have been very minimal side effects so far. It is very scary to imagine, and scary to watch, but as you all know, you get used to this stuff. There is a high rate of infection but we have been very lucky so far. He is also on oral meds Etoposide and Tykerb, and gets Sandostatin shots once a month. So far the treatment has been effective and has allowed him to have a high functioning adult life (he is 30). He cannot work yet but there has been no hair loss, weight loss, loss of appetite, nausea, vomiting, diarrhea, or all of the other things associated with his old traditional chemo. He is lethargic after treatment and often will be knocked out, sleepy, exhausted for two or three days following the treatment. I just want you to know there are alternatives to vincristine out there. All the best to you =)

Ftyssen
Posts: 1
Joined: Oct 2013

Hi there,

 

I was wondering how is your fiancé doing? 

I need to give hope to my brother that right now is recovering from the second tumor surgery in the brain from 2 days ago. My brother is 52 years old and a dad of 2 kids. 3 and 5 years old.

 

Please reply as soon as possible. I'm suffering so much with all that.

I hope your fiance is well now and cancer free.

Thank you,

 

Fernanda

 

 

 

 

 

Febtember
Posts: 6
Joined: Feb 2012

My fiancee was treated originally using those traditional chemos for PNET in kids (vincristine). He had a port in his chest and would get these bags of crap dumped into him all day long. I believe he was in chemo treatment the first time for... five or six months. The tumor stayed at bay for like three years and then came back. He had a second surgery and it was awful. The recovery was terrible and he refused treatment because the first go-round was very very bad. He didn't think he could live through it again. He was far more afraid of the treatment than the surgery. (He is 30.) He was down to 130 pounds, hairless, and couldn't even drink water comfortably from the hardcore radiation and chemo. The tumor came back yet again and we switched med facilities and all of the doctors we had. They performed a third surgery to remove recurrence and placed a port in his brain at the new facility (as apparently the PNETs are very prone to recurrence in the same area or can spread into the spine -- this is why they placed the Ommya Reservoir (port), to treat the entire CNS. He receives treatments in the brain port. originally it was once a week, right after his last surgery, and now we are at every other month. It is going on one year in Feb. (2012) since the port was placed and the last surgery was performed. He is also on cancer meds/ oral chemos Tykerb and Etoposide. He gets shots in the butt of a med called Sandostatin once a month as well. HOWEVER, he is doing very well. There is no nausea, vomiting, sickness, fevers, hair loss, loss of appetite, neurological damage, from this current course of treatment and there is no presence of cancer in the brain or spine so far. Some of the questionable areas at the old surgical site have also cleared up. The port also allows them to take samples of spinal fluid each time we report for treatment w/out having a spinal tap, and those samples show that the spinal fluid is cancer free too, it allows them to have access to the brain as needed. I hated this idea when it was presented to us but now I am very grateful. There is some degree of potential infection each time they tap the port, if bacteria should enter the brain (but i have been assured it is treatable), and that can be dangerous as there is no filter system like the blood (nothing is really supposed to get it there). So far we have been lucky that there has been no infection. So, there are alternatives to the traditional treatment. The long-term neuro damage that he suffers is restless legs, numbing of the feet and hands. Our current neuro-oncologist said this could also become worse with age.

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