adult PNET

Lisa1223

wife47 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?

PNET in 35 yr old man
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?

Lisa1223

triley66 said:

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.

adult PNET
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

hi there
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

Febtember

Lisa1223 said:

adult PNET
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.

PNET treatments
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

Lisa1223 said:

adult PNET
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.

PNET treatments
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

Lisa1223 said:

adult PNET
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.

PNET treatments
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

hi there
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

Lisa1223 said:

adult PNET
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.

PNET treatments
.

faith711

andis999 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!

cns pnet
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.

Roxy68

Sharon1960 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

Pnet Kidney

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

Roxy68

flyingmukaka said:

pnet
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

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.

D2011

Roxy68 said:

Pnet Kidney

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

Pnet on rt kidney

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

Ftyssen

Febtember said:

hi there
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

How is your fiancé's doing? Please reply...my brother has...

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

 

 

 

 

 

Lee Davis

Febtember said:

PNET treatments
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.

p-net brain portal

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

 

momoniebles

PNET

My son is 25 and was diagnosed with PNET in his brain and we have had a brain operation to remove it form his head.  The next step is chemo and radiation. but We do not know nothing about the chemo and radiation. I appreciate if You can contact me with information about it. I am writing from Bogota, Colombia

Mrs.SoonToBeBranham

Very Late Comment.

Hello everyone, 

It breaks my heart to hear everyone going thru this

 My fiance Was diagnosed almost 3 years Ago. He has had 3 surgeries to remove Tumors and now One is back

 He is 18 and has refused all treatment because he doesn't Think there is any hope left For him. I want to thank you all for Posting about your family Members, it Has made Me remember we are Not at the end Of this journey and we are not alone

 God Bless you all

 

SamanthaPipkin

Primitive neuroechtodermal tumor

Hello all. I've been searching for local support groups since my husband's diagnosis in late August of 2016 to no avail so here I am. My 28 year old husband was diagnosed with a pnet tumor which is wrapped around his spinal cord (meaning it's inoperable) and has already u undergone 6 weeks of extensive radiation to his head (he had a few spots of concern in the menges or lining of his brain) and spine as well as 4 cycles of chemo. The last of which caused a sever case of encephalopathy. Each & every time he went for chemo his wbc took a major hit, like down to 0. This last time they stayed at 0 for over a week. There's so much more that has gone on but I don't know where to begin. I just need to find a community where I can discuss his cancer journey & mine as his caregiver. They haven't given us a time frame for his life expectancy or anything like that, so I take that as a good sign. And the fact that his radiation oncologist said he hadn't had the tumor for no more than a year. Please feel free to contact me here or at my email sammielouwho22@gmail.com

 

Thanks

Patyserrano

Pnet brain tumor recurrence

My son had a Pnet brain tumor removed in December 2016.

he aas given chemo n radiation for 9 month then rang the bell in Ocyober 2017.

Dr would shedule an Mri every 3 month and to our horror the tumor came back 7 month later.

my son is now 18, Dr let him walk the stage on graduation day before starting chemo again.

2 month had already passed before chemo was administered again, by then he started having symtoms of inmobility n his cough complicated into a pneumonia. Dr did another Mri n showed that tumor grew twice the size in 2 weeks n was sent home on hospice saying he had weeks to survive because of convultions. Medication helped with convultions n he is still with us after 2 months. my son is fighting n wants to live, what can i do??