i need information about the effects of radiation

susyq7

Hi.. I am new here and have read posts and comments all afternoon. I hope someone can help because we are scared and dr doesn't seem to have any answers. My husband was diagnosed with nasopharnal cancer in Jan 2013. It was in both neck nodes. We thought he had strep. He has gone through radiation and chemo. He had the peg tube and a stent. On his first check up after the chemo/radiation he was told the treatment wasn't successful. We were devastated but determined to whip this "thing". The ctrl scan showed the cancer had spread to the head of his pancreas and his liver. He can't eat. He can barely swallow a sip of liquid. He gets all nourishment from peg tube in stomach. They have started another round of lighter chemo. We don't know what to expect cause dr is very evasive. Dr just says wait and see.I take care of him and I want something good to tell him. Something truthful and accurate. Dr said he would never eat or swallow again and that he would always be on peg tube. Did they over radiate him? His throat can't be stretched. Dr said the skin would tear cause there is no elasticity at all.Can't something be done? We just want a little hope to get us through this. We discovered he had cancer 4 months after we married and he looks to me for comfort and reassurance. Has anyone gone through this and then had remission? Seems like drs don't know very much about this type of cancer. Sure could use some good news. I know this is my first post and I don't mean to discourage anyone that is starting his journey. Thank you for any words or advice you have.

KTeacher

Sorry

I am sorry that you needed to find us but to did find a very supportive group of survivors and caregivers.  Others will chime in that had the same type of cancer.  You might start with reading the Superthread.  I think that there is a section on radiation side effects.  We are all different but we have all gotten through this.  Do you have family, friends or church family that can help you out?

susyq7

KTeacher said:

Sorry

I am sorry that you needed to find us but to did find a very supportive group of survivors and caregivers.  Others will chime in that had the same type of cancer.  You might start with reading the Superthread.  I think that there is a section on radiation side effects.  We are all different but we have all gotten through this.  Do you have family, friends or church family that can help you out?

thank you

I relocated when we married. I am new to this area. He has grown children. I lost my Mother and my child to cancer so I am no stranger to dealing with cancer. My Mother and Son had a different cancer and every cancer brings it's unique challenges.I'm hoping talking to people here will help. I can't find very much information and wonder if this is uncommon in USA. 

debbiejeanne

i'm sorry you are going thru

i'm sorry you are going thru this.  i'm sure someone who is familiar with that type of cancer will chime in to help you.  you may want to consider a second opinion since you can't get straight answers from your doc.  if i were you, i'd want straight answers and i'd want them now.  cancer is scary enuf w/o having to guess what to expect.  a second opinion is something to think about.  wishing you the best and praying for a good outcome for your husband.

God bless you,

dj

longtermsurvivor

Hi Susy

Sounds like you need straight answers from an expert.  If you cannot get them from the oncology  team you are seeing, then it is appropriate to seek a second opinion.  As complex as his situation is, that should be from a major referral center.   You also have to have a set of priorities.  If he has metastatic disease and is entering chemotherapy for a second series of treatments, the swallowing/PEG tube thing is not the top priority right now.  The extent of the disease and its present and future treatment is.   You should table some of this, as the big picture is completely overwhelming at the moment.   It is true that NPC is not really common, but there are others at the site who have it, I am sure given time they will show up to help advise you.

To specifically answer the treatment of over radiation, no he wasn't over radiated.  These are difficult cancers.  The amount of radiation required to cure a substantial portion of people who have the cancer is high enough that the compication rate is pretty darn high.  There are many others who are in the same boat as he is with esophageal strictures.

best to both of you

 

pat

 

 

CivilMatt

plan

Susy,

Welcome to the H&N forum, I am sorry for your family.

If you can’t get your doctor to speak clear, simple English, then find someone that does.  It is hard enough dealing with the known, let alone the unknown. 

I hope they apply a plan which works for your husband.

Best,

Matt

wmc

Sorry to hear this.

Did you get treated local or go to a major center that has tumor boards? If you went the local Dr. you might get a second opnion at a major center. There are others here that have had that type of cancer or at least have more knokedge then I do. Mine was larynx cancer. Welcome to the group and the best suport group I have found.

wmc

susyq7

debbiejeanne said:

i'm sorry you are going thru

i'm sorry you are going thru this.  i'm sure someone who is familiar with that type of cancer will chime in to help you.  you may want to consider a second opinion since you can't get straight answers from your doc.  if i were you, i'd want straight answers and i'd want them now.  cancer is scary enuf w/o having to guess what to expect.  a second opinion is something to think about.  wishing you the best and praying for a good outcome for your husband.

God bless you,

dj

thank you so much

I got your kind email this morning and I sent you an answer back. You gave me good advice and a shoulder to lean on I needed.Thank you again.

susyq7

longtermsurvivor said:

Hi Susy

Sounds like you need straight answers from an expert.  If you cannot get them from the oncology  team you are seeing, then it is appropriate to seek a second opinion.  As complex as his situation is, that should be from a major referral center.   You also have to have a set of priorities.  If he has metastatic disease and is entering chemotherapy for a second series of treatments, the swallowing/PEG tube thing is not the top priority right now.  The extent of the disease and its present and future treatment is.   You should table some of this, as the big picture is completely overwhelming at the moment.   It is true that NPC is not really common, but there are others at the site who have it, I am sure given time they will show up to help advise you.

To specifically answer the treatment of over radiation, no he wasn't over radiated.  These are difficult cancers.  The amount of radiation required to cure a substantial portion of people who have the cancer is high enough that the compication rate is pretty darn high.  There are many others who are in the same boat as he is with esophageal strictures.

best to both of you

 

pat

 

 

longtermsurvivor

Your name alone gives hope to us. Without and feedback from Drs it was easy to assume they had given too much radiation. You are right. The peg tube and swallowing isn't number one on our list of priorities right now. When we ask about future options Dr just says there are many options and wait till that time gets here. I know I don't know the names of all the chemo drugs and all I want is for him to sit down and talk with us, not at us. Hmo's have limited circle of Drs but I am going to try. My husband is tired and I just need someone to point me in right direction. Thank you and it is good to know we are not alone.

 

 

 

 

hwt

wmc said:

Sorry to hear this.

Did you get treated local or go to a major center that has tumor boards? If you went the local Dr. you might get a second opnion at a major center. There are others here that have had that type of cancer or at least have more knokedge then I do. Mine was larynx cancer. Welcome to the group and the best suport group I have found.

wmc

Susy

Are they sure this is mets and not more than one primary? Recently, the guy doing my scan was telling me how far they had come with treating pancreatic cancer then I noticed when I went for my weekly chemo sessions, the large number of people with pancreatic cancer. One very elderly man had been coming 8 years for tx. with success. I was told that there were so many people there with that cancer because it was that particular doctor's clinic day along with the head and neck ONC. That was at Barnes West County in St Louis.  I met one lady that had the same surgical procedure John Skiffin just had and was NED for several years. She was just there visiting. Sorry, I can't recall the name of surgical  procedure. It began with "w". PM John, he will be helpful.

Personally, I had recurrences around carotid artery and sought resolution at Mayo Clinic in Rochester with success. Second and third opinions are not uncommon.

I always tell of my cousin who had mets melonoma to liver and lungs and was told to get his affairs in order. He found a clinical trial and just celebrated 10 years cancer free! My brother was told he had stage 4 kidney cancer mets to his lung. He went to Mayo and biopsy showed two primary cancers both stage one, he has been cancer free 3 years. There are many success stories. It is important to search out every option,find the right facility and doctor and most importantly have faith and hope.

Sending prayers your husband's way.

Candi

 

 

susyq7

CivilMatt said:

plan

Susy,

Welcome to the H&N forum, I am sorry for your family.

If you can’t get your doctor to speak clear, simple English, then find someone that does.  It is hard enough dealing with the known, let alone the unknown. 

I hope they apply a plan which works for your husband.

Best,

Matt

plan

They had a plan and success was anticipated by Dr. We were full of hope and joy. It gave hubby a goal and the push to get through the grueling radiation. On his first check up after chemo/radiation they found small spot on original site(behind soft palate). CT scan found spread to nodes on head of pancreas and several spots in liver. We haven't had any positive news and I can see the doubtful look in my husbands eyes and I want him to have hope again.  Now plans have changed and maybe Dr isn't sure what plans are. I have notes but Dr has no answers for us. I am going to recharge my efforts and try again to talk to Dr with a different approach. Thank you Matt

susyq7

hwt said:

Susy

Are they sure this is mets and not more than one primary? Recently, the guy doing my scan was telling me how far they had come with treating pancreatic cancer then I noticed when I went for my weekly chemo sessions, the large number of people with pancreatic cancer. One very elderly man had been coming 8 years for tx. with success. I was told that there were so many people there with that cancer because it was that particular doctor's clinic day along with the head and neck ONC. That was at Barnes West County in St Louis.  I met one lady that had the same surgical procedure John Skiffin just had and was NED for several years. She was just there visiting. Sorry, I can't recall the name of surgical  procedure. It began with "w". PM John, he will be helpful.

Personally, I had recurrences around carotid artery and sought resolution at Mayo Clinic in Rochester with success. Second and third opinions are not uncommon.

I always tell of my cousin who had mets melonoma to liver and lungs and was told to get his affairs in order. He found a clinical trial and just celebrated 10 years cancer free! My brother was told he had stage 4 kidney cancer mets to his lung. He went to Mayo and biopsy showed two primary cancers both stage one, he has been cancer free 3 years. There are many success stories. It is important to search out every option,find the right facility and doctor and most importantly have faith and hope.

Sending prayers your husband's way.

Candi

 

 

primary

When Dr found cancer on pancreas they said that my husband had pancreatic cancer too. a Ct scan showed numeruos spots in his liver. A liver biospy showed that the nasopharynal cancer had spread to pancreas by lymph nodes to pancreas. So Dr said he didn't have pancreatic cancer. It has met to nodes and liver. He doesn't have much pain and it is hard to believe that it has spread. We live in Tn. How do we get appt with Mayo? Hmo doesn't approve most of his meds.They are difficult to work with, to say the least. We recently were out $300 because the meds could not be crushed and used in peg tube. Dr didn't say to be used in peg tube on prescription so it isnt pharmacies fault and the burden fell on us. Of course the Dr will not take the responsibility. It was a time release drug and I didn't notice the pill couldn't be used until we got it home. I don't want the pressure on my husband cause he doesn't need it. Sometimes I feel over whelmed but the only way is onward and upward. Thank you for your answer hwt.

susyq7

wmc said:

Sorry to hear this.

Did you get treated local or go to a major center that has tumor boards? If you went the local Dr. you might get a second opnion at a major center. There are others here that have had that type of cancer or at least have more knokedge then I do. Mine was larynx cancer. Welcome to the group and the best suport group I have found.

wmc

treatment

He is getting treatment at an onocology cancer center. A local Dr thought it was suspicious that "strep throat" didn't respond to treatment after 2 months of antibiotics. The nodes on both sides of his neck were huge. He operated and found cancer and promptly referred him to cancer specialist. Thank you for taking time to give me an answer wmc. Yes this group seems to be a caring helpful support team and that is exactly what we need.

corleone

NPC survivor

I am another NPC survivor, 1 year 6 month post treatment. My experience is different, so far I don’t have any reoccurrences or distant metastases, so please take my comments with a grain of salt, especially because I make a lot of assumptions, not knowing exactly the diagnosis and treatment.

First, I assume that he had a complete checkup before treatment (including here, any kind of imagistic for H&N, chest, abdomen/pelvis). If that’s the case, it might be that at the time of diagnosis the distant mets where already there, but not detectable at that time (below the resolution of CT or whatever technique used). If the distant mets where visible at that time, the concurrent chemo/radiation would have been undoubtedly followed by adjuvant chemo, (or preceded by neoadjuvant chemo) at the time they planed the treatment the very first time. Otherwise, I would think the treatment was suboptimal.

The radiation has many side effects, one is that you lose the capacity to swallow, if you don’t “practice” regularly during treatment (keep swallowing, even if just for seeping water). Having that bad strictures/fibrosis, makes me think that they had to blast that area with a higher dose to cover the regional lymph nodes (again, assumptions: that IMRT has been used, with the “usual” dose anywhere between 68-72 Gys).

As others mentioned, it is best if you get a second opinion at a large oncology center, experienced with H&N cancers (including NPC). The reasons are 1) more expertise with newer treatment modalities, including handling side effects and 2) chance to participate in a clinical trial (important, but you need a bit of luck, to get the best one available). Can’t give much of an advice here either, because I was treated in Canada.

 

Kent Cass

LARGE C CENTER

 Susyq7

  So sorry to hear of your husband's journey. As a 5+-year survivor of NPC, unknown Primary, several things kinda stand out as noteworthy to me. 

  I rejected my first ENT Dr because he said the first thing he would do is put in a trachea, which I was very familiar with from my youth. The second ENT Dr agreed with me, and I never did get a trachea tube installed. I have recently burnt the bridge between my Rad Dr and me, because she refuses to accept that rads damage teeth- I think the rads did a number on my protective enamel on my teeth, which has led to over $13K in Dental bills for me, post-tx. I tell you these two things to highlight that just cause they are Drs with medical degrees, they can be very wrong.

  I think it's safe to say your Primary Dr fumbled the ball right from the get-go. Strep throat? My two nodes became enlarged, and within a week after I showed my Dr I was at the ENT Drs. Two weeks later came the surgical biopsy with my 2nd ENT Dr, and it came back Positive for NPC. 5 weeks later, with Port and Peg installed, I started tx. And your Dr was treating him with antibiotics for two months? I know this is hindsight blame game, but it is for your understanding of why your husband finds himself where he is.

   Concurrent chemo and rads is the best way to attack NPC, and I did not see you tell if that was done. Some start with just chemo for a couple months, then rads and less chemo. I got the full dose of both right from the start.

   Going forward Susyq7: you have to get him to the nearest large C Center. For me, in the midwest, I would go to the U of Iowa or maybe Northwestern or the U of Chicago in Chicago. MD Anderson is #1, but Mayo's isn't far behind. Google it, and you will find the place best for you, or tell us where you are and someone will give you the answer on where to go. Stay with us, and keep us informed.

kcass 

   

 

susyq7

Kent Cass said:

LARGE C CENTER

 Susyq7

  So sorry to hear of your husband's journey. As a 5+-year survivor of NPC, unknown Primary, several things kinda stand out as noteworthy to me. 

  I rejected my first ENT Dr because he said the first thing he would do is put in a trachea, which I was very familiar with from my youth. The second ENT Dr agreed with me, and I never did get a trachea tube installed. I have recently burnt the bridge between my Rad Dr and me, because she refuses to accept that rads damage teeth- I think the rads did a number on my protective enamel on my teeth, which has led to over $13K in Dental bills for me, post-tx. I tell you these two things to highlight that just cause they are Drs with medical degrees, they can be very wrong.

  I think it's safe to say your Primary Dr fumbled the ball right from the get-go. Strep throat? My two nodes became enlarged, and within a week after I showed my Dr I was at the ENT Drs. Two weeks later came the surgical biopsy with my 2nd ENT Dr, and it came back Positive for NPC. 5 weeks later, with Port and Peg installed, I started tx. And your Dr was treating him with antibiotics for two months? I know this is hindsight blame game, but it is for your understanding of why your husband finds himself where he is.

   Concurrent chemo and rads is the best way to attack NPC, and I did not see you tell if that was done. Some start with just chemo for a couple months, then rads and less chemo. I got the full dose of both right from the start.

   Going forward Susyq7: you have to get him to the nearest large C Center. For me, in the midwest, I would go to the U of Iowa or maybe Northwestern or the U of Chicago in Chicago. MD Anderson is #1, but Mayo's isn't far behind. Google it, and you will find the place best for you, or tell us where you are and someone will give you the answer on where to go. Stay with us, and keep us informed.

kcass 

   

 

Fumble fumble

Hindsight is 20/20 for us. The first signs of trouble started in mid Nov of 2012. When anitbiotics didn't work the primary did surgery and the c word appeared around mid Jan.  So it was around 7 weeks from strep to c.Pet scan and the first chemo was in late Feb. Peg and port were put in and chemo first and then chemo and radiation.  Yes they started him on chemo and then added radiation. We thought the swelling was from a cold he had recently battled. When Dr said strep throat it seemed logical.   When second round of meds didn't work we knew something was wrong. More neck nodes were swelling. He had no pain but we knew something was wrong. We never dreamed it would be c. I would advise anyone to see dr as soon as nodes swell and don't respond within a week to meds. We signed with a HMO and they won't pay for his meds half the time.  He has to take all his meds through tube,crushed and liquified, and a recent mistake cost us $300 out of pocket. The time release meds couldn't be broken or crushed and I didn't discover this until we got meds home. Pharmacy isn't at fault cause Dr didn't put that meds were to be taken peg. Fumble again and I know you can guess who got the penalty!! Ins has to preapprove every move we make and they don't get in any hurry. I get frantic just telling this. I've not talked about any of this to anyone and reading what I have written terrifies me because this is just half the nightmare...Thank you . I will Google for best place in area and try again. Thank you again

hwt

susyq7 said:

Fumble fumble

Hindsight is 20/20 for us. The first signs of trouble started in mid Nov of 2012. When anitbiotics didn't work the primary did surgery and the c word appeared around mid Jan.  So it was around 7 weeks from strep to c.Pet scan and the first chemo was in late Feb. Peg and port were put in and chemo first and then chemo and radiation.  Yes they started him on chemo and then added radiation. We thought the swelling was from a cold he had recently battled. When Dr said strep throat it seemed logical.   When second round of meds didn't work we knew something was wrong. More neck nodes were swelling. He had no pain but we knew something was wrong. We never dreamed it would be c. I would advise anyone to see dr as soon as nodes swell and don't respond within a week to meds. We signed with a HMO and they won't pay for his meds half the time.  He has to take all his meds through tube,crushed and liquified, and a recent mistake cost us $300 out of pocket. The time release meds couldn't be broken or crushed and I didn't discover this until we got meds home. Pharmacy isn't at fault cause Dr didn't put that meds were to be taken peg. Fumble again and I know you can guess who got the penalty!! Ins has to preapprove every move we make and they don't get in any hurry. I get frantic just telling this. I've not talked about any of this to anyone and reading what I have written terrifies me because this is just half the nightmare...Thank you . I will Google for best place in area and try again. Thank you again

Susy

Without a map, not sure what major cancer center is near you in TN. John Skiffin checked in and the name of the procedure he had was the "Whipple", I couldn't think of it in my earlier post. Not sure if it is even a consideration for your husband's situation. I consulted both Mayo in Rochester MN and MD Anderson in Houston. If you go to the websites just look for the "appointment phone number". Actually, all of my records were sent to both Mayo & MDA and, while I never traveled to MDA, they consulted with Mayo to determine who could best tackle my issue. Mayo had all of my records and told me they could help before I traveled. I think there is also a Mayo in northen Florida. Are these tumors something that can be tackled with percise radiation? My brother was treated at Mayo and when he told his doctor about me, he replied "don't let anyone tell her she can't be radiated more than once". I had SBRT but considered proton therapy as well. Sorry you got burned with the time release drugs issue.  I would try an appeal since HMO would have been aware of PEG. Worth a try. Ask your HMO which major cancer centers are part of their system. 

jim and i

I can't offer too much

I can't offer too much information for you as m husband had Base of tongue cancer, but I wanted you to know I am praying for you both.

Debbie

Hondo

NPC

There are many of us here who have had the same type of C and some more than once. The best advice I can give you is what Kent already said, Get Him to one of the Major Cancer Institution. Do not waste your time and his life at some local city cancer place where they know nothing about NPC cancer. I am right at 12 years passed my first treatment for NPC and 10 years passed my second, I live with a lot of side effects but I still live. Right now worry about getting him to the right place for treatment, is you can do Proton treatment it will have the lease side effects.

 

Wishing you both the best and Welcome to the family here on CSN H&N

Hondo