MPNST

Hi,  I am having a recurrence of Malignant Peripheral Nerve Sheath Tumor and was hoping to find someone on the net that has MPNST to share info on treatment and supplements.  So if you are out there, please send a message and let me know what is going on with your treatment and prognosis.  Thanks so much.

Hi my husband has an mpnst.  We are in NJ.  My husband is 38, and we have 2 kids.  He was diagnosed in March. He had his tumor on his left leg.  He did 25 days of radiation.  Then removed his leg June 12.  It has since spread to his left lung.  He is now on chemo therapy, doing very well with chemo.  The doctor says no new spots have occured.  His spirits are doing well.  You have to have faith and understand, there is only one cure...jesus. 

 

On 8/21/2008 candicet wrote:

Hi my husband has an mpnst.  We are in NJ.  My husband is 38, and we have 2 kids.  He was diagnosed in March. He had his tumor on his left leg.  He did 25 days of radiation.  Then removed his leg June 12.  It has since spread to his left lung.  He is now on chemo therapy, doing very well with chemo.  The doctor says no new spots have occured.  His spirits are doing well.  You have to have faith and understand, there is only one cure...jesus. 

Hello. My name is Noelle, I am 41. My 14 y/o son Sam was diagnosed with MPNST 11/2/07. He had a 9x12 cm mass removed 10/29/06. The tumor grew back after three weeks. They could not get a wide-enough margin due to it stemming from his spine. He was on I.V. chemo at the hospital, 10 rounds of radiation, and he has been on oral chemo at home Etoposide and Cyclophosphomide. He is currently on Siromulus (which is supposed to be for patients who receive organ transplants), but is shown to stop the blood flow to soft tissue tumors. Sam has also had several lung nodules (about 5) removed. The tumor had pushed his right kidney up and stretching his ureter. He has had several stents placed, replaced, etc... He currently has a nephroscopy tube in his kidney as it is not draining properly. He has been fighting a kidney infection for about a week now. I have met 3 families whose children have passed away from this horrible condition and have lived 12-14 months from their diagnosis. I have also met someone who is in his 30's with this condition. The prognosis is not the greatest for this thing. What have your doctor's given you as far as a prognosis. One of Sam's doctor's told me that he would only have about a 10% chance of survival. We have tremendous faith in the ONLY healer, Jesus Christ.  Please, any information you can share with me will be greatly appreciated.

God Bless

Noelle 

 

 

On 8/21/2008 candicet wrote:

Hi my husband has an mpnst.  We are in NJ.  My husband is 38, and we have 2 kids.  He was diagnosed in March. He had his tumor on his left leg.  He did 25 days of radiation.  Then removed his leg June 12.  It has since spread to his left lung.  He is now on chemo therapy, doing very well with chemo.  The doctor says no new spots have occured.  His spirits are doing well.  You have to have faith and understand, there is only one cure...jesus. 

My wife's mnst has spead to her lungs as well; she had ifosfomide (sp?)which did not work and now gemsar and taxotere (sp); what chemo is your husband receiving now?

 

On 7/6/2008 smylin wrote:

Hi,  I am having a recurrence of Malignant Peripheral Nerve Sheath Tumor and was hoping to find someone on the net that has MPNST to share info on treatment and supplements.  So if you are out there, please send a message and let me know what is going on with your treatment and prognosis.  Thanks so much.

I tried responding privately and did not receive a reply. My wife has MPNST and it has also moved to the lungs. Would you like to share some info regarding treatments etc.?

Yes I would like to share some info. It is approaching the one year mark for Sam 10/29/07 tumor removal, 11/2/07 diagnosis. We most recently found out that is left lung is 2/3 full of mpnst activity. Sam's oxygen levels dropped yesterday to the 80's. He is tired alot. He does not seem to have much energy or an appetite.

We are still holding out for a miraculous healing from Jesus. Actually Sam is watching The Passion as I type this out.

Hope your wife is doing well. When was her diagnosis and where?

God Bless

Noelle 

 

 

On 10/15/2008 Noelle66 wrote:

Yes I would like to share some info. It is approaching the one year mark for Sam 10/29/07 tumor removal, 11/2/07 diagnosis. We most recently found out that is left lung is 2/3 full of mpnst activity. Sam's oxygen levels dropped yesterday to the 80's. He is tired alot. He does not seem to have much energy or an appetite.

We are still holding out for a miraculous healing from Jesus. Actually Sam is watching The Passion as I type this out.

Hope your wife is doing well. When was her diagnosis and where?

God Bless

Noelle 

 

My wife is 55, its looks like age has nothing to do with this type of cancer. She was diagnosed in may 08 with MPNST. She is being treated at UCLA which has a sarcoma team. Her tumor is located in the lower neck wrapped around the braxio plexis nerves and cardiac blood vessels. During in patient chemo IV for two 7 day infusions with infosfomide and 25 radiation treatments it spead to the lungs with about 7 spots between the two lungs. She was  scheduled for  surgery last month but when the new lesions were found she was put on two cycles of Gemzar and taxotere IV chemo which were completed yesterday. Scans will be scheduled within two weeks to see if there was any improvement. She has not been given a definite prognosis by the oncologist; he said he doesn't like to try that because there is so little data on this type of cancer. We are told that MPNST is about one in a million of cancers. Our immediate prayer is that this chemo destroys the lesions so that surgery can be done to remove the tumor and of course that the cancer be totally healed by our Lord and Savior Jesus Christ. We will pray the same for young Sam too. I am reminded by my friends in Christ that God is in the healing business! Sometimes I forget. I look forward to your replies. 

Thanks for your reply. Today was a particularly hard day, alot of time spent with The Lord, most of the times with tears in my eyes. I cried in His arms, Sam's, my hubby's, and my mom's. Sometimes it feels as if I am slowly watching my only child die. He seems to have so little energy lately and is tired most of the day. He is not eating well, despite me encouraging him to do so. Yesterday his O2 stats were in the low to mid 80's. I did not check it today, he seems comfortable, not too short of breath and he does not seem to be struggling to breath. His pediatritian made a house-call yesterday and said that he seems to be looking good for someone with a O2 of 83. It is just so hard.

Thank you so much for your kind words.

God Bless

Noelle

Hi to all who have responded to my original message.  I have been in the middle of a busy summer and fall, first with radiation, then with selling our house, living in a small trailer at our adult childrens, going to Houston for treatment which didn't work out and then coming back home.  I see my oncologist on the 27th and the oncology surgeon on the 30th.  The tumor I am currently dealing with is in my neck like the wife spoken of by her husband in a previous message.  I am fifty six and was born with NF 1. The tumor is between my carotid and jugular and seems kind of tricky to deal with. I also live on faith in Jesus, as does my husband.  I am looking at possibly having more involved treatment in Seattle, since Houston didn't work out for us.  I had seven weeks of radiation and no follow up scans yet to see if it helped.  As of July I had no metastisis.  I am so sorry to hear of young Sam's struggle.  I am grateful that none of my six children or four grandchildren have the NF that precipitated the MPNST.  I will pray for Sam and for all who have posted for their loved ones on this board.  Please pray for my husband, Brock, who sleeps very little watching over me every night.  I have no information on chemo or other treatments as much of my time has been spent just trying to find a doctor who knows anything about MPNST.  I live in the rural northwest and even finding doctors has been a huge challenge.  Thank you all for sharing your information, but more than that, for sharing your courage and your hope.  God Bless you and yours,  Smylin

 

On 10/16/2008 smylin wrote:

Hi to all who have responded to my original message.  I have been in the middle of a busy summer and fall, first with radiation, then with selling our house, living in a small trailer at our adult childrens, going to Houston for treatment which didn't work out and then coming back home.  I see my oncologist on the 27th and the oncology surgeon on the 30th.  The tumor I am currently dealing with is in my neck like the wife spoken of by her husband in a previous message.  I am fifty six and was born with NF 1. The tumor is between my carotid and jugular and seems kind of tricky to deal with. I also live on faith in Jesus, as does my husband.  I am looking at possibly having more involved treatment in Seattle, since Houston didn't work out for us.  I had seven weeks of radiation and no follow up scans yet to see if it helped.  As of July I had no metastisis.  I am so sorry to hear of young Sam's struggle.  I am grateful that none of my six children or four grandchildren have the NF that precipitated the MPNST.  I will pray for Sam and for all who have posted for their loved ones on this board.  Please pray for my husband, Brock, who sleeps very little watching over me every night.  I have no information on chemo or other treatments as much of my time has been spent just trying to find a doctor who knows anything about MPNST.  I live in the rural northwest and even finding doctors has been a huge challenge.  Thank you all for sharing your information, but more than that, for sharing your courage and your hope.  God Bless you and yours,  Smylin

I too, am like your husband, as I watch over Sam throughout the day. He just seems to be sleeping more and more. The doctors are going to put him on oral mophine for breakthrough pain. I have not slept well for just about a year. When people ask me how I'm doing, I just say "I'm on cruise control". I have waivering faith in Sam's healing when I see him in pain and sleeping all the time. I just want my old Sammy back. Looks like another weepy day. You too are in my prayers.

Love & God Bless

Noelle