New with questions

avisemi

Hi,

In Sept my husband was diagnosed with nasopharyngeal squamous cell carcinoma.

After induction chemo with cisplatin, FU5 and taxotere (3 rounds), yesterday he started radition (he will have 38 sessions).

I am so thankful for the discussion boards. I have read many posts and gotten lots of good ideas. Though, I have two questions:

Most of the posts are about radiation. Am I to assume that radiation is worse than chemo? This scares me because chemo was pretty horrible (ended in the hospital after each cycle).

The radonc told us the side effects would start to show up by week 3. Though, since after the 1st treatment, Dmitri has had dry mouth and is drinking water non-stop. Did things start to show up so fast for others?

thanks and happy holidays.

 

 

eulerphi

Side effects

Hi, my husband is currently in his 2nd week of radiation treatment. He also started having dry mouth immediately. 

Week 1: dry mouth, lack of appetite

Week 2: mouth sores, fatigue and lack of appetite.

wmc

Welcome to the H&N Group

Welcome to the H&N group, and i'm sorry you need to be here. As your husbands caregiver it is often harder on the caregiver than the patient. The patient will get all the attention and the caregiver justs gets the worry. You feel his pain but can't do anything to help. You are his first line of support and he will appreciate you more than you know. I was one of the few that never had Chemo or Radiation so I will let outhers exlpain and help. Remember there is guide lines but we all respond differant to treatment. Some get all the side effects and others get almost none. There is a supperthread at the top of the H&N page that can answer many questions.  http://csn.cancer.org/node/261072

It can be a bumpy road he will be going down and some days worse then other's. If he, or you have a bad day just come here and put your feelings in writing, it does help. There is almost someone here 24/7 and you will get some wonderful support. You are never alone in this. The people on this are caregivers and the ones that have it as well, and really do understand how you do feel. So again welcome and we'll add you to my prayer list.

Bill

 

Duggie88

Third day

I statred feeling the effects after the third day. But by week three I was pretty much use to the side effects and pushed on just to prove to myself that I could do it. I had some of the worst mouth sores they ever saw. They kept telling me to take more pain medication but that is a whole different story. Many will tell you that we are all different with how our bodies react to treatment whether it is chemo or radiation. He wiill need to keep drinking plenty of fluids, stay positive, and stay focused on completing the mission. Tell him if Jeff can do so can he. You will play a key part in all of this with a good example being he is the athlete and you would be his trainer . Every now and then you may have to give him a kick in the butt. Trust me when I say the end result is well worth the battle.

      Jeff

CivilMatt

start

avisemi,

I can not speak for your chemo as I had Erbitux, but I can speak (for myself) about rads.  They may make you NOT want to swallow, but pay no attention and drink, swallow, drink, swallow (it is important).  Get use to taste mystery as your taste buds temporarily check out (they hate rads).  Pain, never had much of it, but throat, tongue and mouth discomfort I had in spades.

At week 3 my hamburger tasted stale.

I started drinking lots of water on day y1 and have not stopped at 2y9m.

Cross your fingers and hope for the best.

Matt

phrannie51

Hello....and welcome

to our little home away from home.

The one thing I've seen in the nearly 3 years of being on this board is....everybody is different.  Tho treatments are similar, and effects are similar....timelines and degrees of being affected vary from person to person. 

I also had NPC (like your husband).....my treatment was similar in drugs used, and the amount of radiation I had....I had 3 cisplatin treatments with the radiation....THEN I had the 5FU and cisplatin after rads were over.  5FU is very hard chemo to do....rads are different....the side effects we all seem to suffer are dry mouth and loss of taste.  There are other side effects that some people get, and others don't and the degree to which they get them also vary. 

The more water he drinks, the better....so that is good news.  He needs every drop and more.

p

avisemi

Thank you all! Your posts

Thank you all! Your posts gave me much needed encouragement. We have had 4 weeks off since the last day of chemo to the point that the last 2 weeks felt almost normal. It was hard to start again. I guess we just feel tired and dread what is to come. 

Though it is easier than the first time because the follow up pet scan showed that the tumor is gone.

avisemi

Thank you all! Your posts

Can't figure out why it is cutting my post. This is the rest: the doctors say there are probably microscopic cells that the scan doesn't catch So they need to sterilize the area. this is a miracle because the tumor was pretty advanced (to the bone, brain and neck lymph nodes). So we are going day by day, praying daily and giving thanks for all our blessings. 

avisemi

wmc said:

Welcome to the H&N Group

Welcome to the H&N group, and i'm sorry you need to be here. As your husbands caregiver it is often harder on the caregiver than the patient. The patient will get all the attention and the caregiver justs gets the worry. You feel his pain but can't do anything to help. You are his first line of support and he will appreciate you more than you know. I was one of the few that never had Chemo or Radiation so I will let outhers exlpain and help. Remember there is guide lines but we all respond differant to treatment. Some get all the side effects and others get almost none. There is a supperthread at the top of the H&N page that can answer many questions.  http://csn.cancer.org/node/261072

It can be a bumpy road he will be going down and some days worse then other's. If he, or you have a bad day just come here and put your feelings in writing, it does help. There is almost someone here 24/7 and you will get some wonderful support. You are never alone in this. The people on this are caregivers and the ones that have it as well, and really do understand how you do feel. So again welcome and we'll add you to my prayer list.

Bill

 

Bill, One of the things that

Bill, One of the things that surprised me the most about all this, is the amount of logistical stuff and chores (Schedules, insurance stuff, actually getting to all the appointments, etc, etc). As if the pain and emotional burden wasn't enough. We have a 3 year old and an 8 month old. So between taking care of all of Dima's treatment stuff, the girls and work, I still find it amazing that we are somewhat managing everything somehow. In part it is because we are blessed to have lots of help. 

avisemi

Duggie88 said:

Third day

I statred feeling the effects after the third day. But by week three I was pretty much use to the side effects and pushed on just to prove to myself that I could do it. I had some of the worst mouth sores they ever saw. They kept telling me to take more pain medication but that is a whole different story. Many will tell you that we are all different with how our bodies react to treatment whether it is chemo or radiation. He wiill need to keep drinking plenty of fluids, stay positive, and stay focused on completing the mission. Tell him if Jeff can do so can he. You will play a key part in all of this with a good example being he is the athlete and you would be his trainer . Every now and then you may have to give him a kick in the butt. Trust me when I say the end result is well worth the battle.

      Jeff

Jeff, will do! One of the

Jeff, will do! One of the things that have helped Dima the most is to quote the li "what one man can do, another can do" from the movie The Edge. Now I'll tell him : what Jeff can do, you can do

avisemi

phrannie51 said:

Hello....and welcome

to our little home away from home.

The one thing I've seen in the nearly 3 years of being on this board is....everybody is different.  Tho treatments are similar, and effects are similar....timelines and degrees of being affected vary from person to person. 

I also had NPC (like your husband).....my treatment was similar in drugs used, and the amount of radiation I had....I had 3 cisplatin treatments with the radiation....THEN I had the 5FU and cisplatin after rads were over.  5FU is very hard chemo to do....rads are different....the side effects we all seem to suffer are dry mouth and loss of taste.  There are other side effects that some people get, and others don't and the degree to which they get them also vary. 

The more water he drinks, the better....so that is good news.  He needs every drop and more.

p

Phrannie, FU5 was horrible.

Phrannie, FU5 was horrible. We both did not like the sound the pump would make every time it realized a dose. By day 4 we were ready to get that off him. I saw your post about the clear scan. Congratulations!  

avisemi

CivilMatt said:

start

avisemi,

I can not speak for your chemo as I had Erbitux, but I can speak (for myself) about rads.  They may make you NOT want to swallow, but pay no attention and drink, swallow, drink, swallow (it is important).  Get use to taste mystery as your taste buds temporarily check out (they hate rads).  Pain, never had much of it, but throat, tongue and mouth discomfort I had in spades.

At week 3 my hamburger tasted stale.

I started drinking lots of water on day y1 and have not stopped at 2y9m.

Cross your fingers and hope for the best.

Matt

Matt,
I read about erbitux

Matt,

I read about erbitux and asked onc about it a while back. 

For now, I'm going to conveniently forget to mention about the stale burger!

avisemi

eulerphi said:

Side effects

Hi, my husband is currently in his 2nd week of radiation treatment. He also started having dry mouth immediately. 

Week 1: dry mouth, lack of appetite

Week 2: mouth sores, fatigue and lack of appetite.

Eulerphi,  
how many

Eulerphi,  

how many treatments will he have?

I hope it all goes well and you are getting support from loved ones. 

yensid683

Been there, done that.....

My treatment plan was very similar, I had induction chemo to start, same meds but as an in patient, 5 days on continuous high dose chemo and I have to say that I've never felt quite so bad in my entire life. 

I has SCC, base of tongue, the primary tumor was 3cm, and the largest of the lymph nodes was 6cm, so it put me at stage IVa.  Treatment was to be three sessions of induction chemo, and after recovery, start on chemo/radiation.

The first round of chemo compromised my kidney function so the next two sessions were abandoned.  I started Rads just a few weeks later and at first it was very easy, though withing just a few days side effects started to pile up.  Saliva started to disappear in just a couple of days, by the start of the second week the sore throat started, though not severe enough to need prescription pain meds.  By the end of the second week I started taking them and they helped but I have to say that it was the worst sore thoat I've ever had.  Saliva eventuall disappeared completely, swallowing anything but liquids became almost impossible, I used my PEG tube for my nutrition but kept working my swallower as I was told at radiation training that if I didn't my body could 'forget' how to swallow.  No way I was going to stand for that.

the last week of rads and the first two weeks of recovery were the worst, sore throat, mucus as 'thick as peanut butter' to quote Yukon Corneilius, but one day I woke up and I didn't feel quite so bad. 

I was close to 3 months before I was back to being able to eat normally, and it wasn't all that spectacular, but now close to three years since diagnosis, I'm back to normal, though sour tastes are tough to do.

As so many have said, everyone is different and everyone has a different response and recovery.  I'm hoping your husband has the easier time of it!

 

nnoodle

Hi,
I'm new to this as well.

Hi,

I'm new to this as well. I am 4.5 months post radiation (7 weeks) and chemo (cisplatin) for HPV+ unknown primary.  As the others have said, everyone responds differently.  One thing that kept me going was to take it one day at a time, which seems rather simple but it is easy to get caught up in hearing "at week 2 you will feel this, at week 3 you will experience this.....etc".  I didn't have a sore throat til week 6 and my doctor said I'd have a sore throat by week 2.  Tell your husband to try to keep a positive attitude and remember you will get through this.  Some days there seems no end in sight but before you know it you will be a month post radiation and then a year, etc.  Your husband is lucky to have you!!!  Keep strong and pray, pray, pray!!  

I also had thyroid cancer and am 3 months post treatment for that and the side effects of that intensified the dry mouth and taste bud issues from the radiation.  But now I am slowly feeling almost normal....whatever normal is!!  

Drink plenty of water.  I've always been a big water drinker so this was easy for me even though sometimes it wasn't comfortable.....I just told myself my body needs it and my throat needs to keep swallowing and visualized the water cleansing my liver and getting all the toxins out that they were putting in.   At some point I quit using ice because the cold hurt.  

I noticed a difference in my mouth the first week....dryness and taste and just a weird feeling.  The salt and baking soda rinses help.  

Good luck to ya'll!! 

Happy Holidays!!

 

avisemi

yensid683 said:

Been there, done that.....

My treatment plan was very similar, I had induction chemo to start, same meds but as an in patient, 5 days on continuous high dose chemo and I have to say that I've never felt quite so bad in my entire life. 

I has SCC, base of tongue, the primary tumor was 3cm, and the largest of the lymph nodes was 6cm, so it put me at stage IVa.  Treatment was to be three sessions of induction chemo, and after recovery, start on chemo/radiation.

The first round of chemo compromised my kidney function so the next two sessions were abandoned.  I started Rads just a few weeks later and at first it was very easy, though withing just a few days side effects started to pile up.  Saliva started to disappear in just a couple of days, by the start of the second week the sore throat started, though not severe enough to need prescription pain meds.  By the end of the second week I started taking them and they helped but I have to say that it was the worst sore thoat I've ever had.  Saliva eventuall disappeared completely, swallowing anything but liquids became almost impossible, I used my PEG tube for my nutrition but kept working my swallower as I was told at radiation training that if I didn't my body could 'forget' how to swallow.  No way I was going to stand for that.

the last week of rads and the first two weeks of recovery were the worst, sore throat, mucus as 'thick as peanut butter' to quote Yukon Corneilius, but one day I woke up and I didn't feel quite so bad. 

I was close to 3 months before I was back to being able to eat normally, and it wasn't all that spectacular, but now close to three years since diagnosis, I'm back to normal, though sour tastes are tough to do.

As so many have said, everyone is different and everyone has a different response and recovery.  I'm hoping your husband has the easier time of it!

 

Thanks for sharing! So glad

Thanks for sharing! So glad you are doing well 3 years later. Today is day 5 and Dima woke up feeling quite horrible. Though I remind both of us that while the fight is hard, we know what is on the other side.

avisemi

nnoodle said:

Hi,
I'm new to this as well.

Hi,

I'm new to this as well. I am 4.5 months post radiation (7 weeks) and chemo (cisplatin) for HPV+ unknown primary.  As the others have said, everyone responds differently.  One thing that kept me going was to take it one day at a time, which seems rather simple but it is easy to get caught up in hearing "at week 2 you will feel this, at week 3 you will experience this.....etc".  I didn't have a sore throat til week 6 and my doctor said I'd have a sore throat by week 2.  Tell your husband to try to keep a positive attitude and remember you will get through this.  Some days there seems no end in sight but before you know it you will be a month post radiation and then a year, etc.  Your husband is lucky to have you!!!  Keep strong and pray, pray, pray!!  

I also had thyroid cancer and am 3 months post treatment for that and the side effects of that intensified the dry mouth and taste bud issues from the radiation.  But now I am slowly feeling almost normal....whatever normal is!!  

Drink plenty of water.  I've always been a big water drinker so this was easy for me even though sometimes it wasn't comfortable.....I just told myself my body needs it and my throat needs to keep swallowing and visualized the water cleansing my liver and getting all the toxins out that they were putting in.   At some point I quit using ice because the cold hurt.  

I noticed a difference in my mouth the first week....dryness and taste and just a weird feeling.  The salt and baking soda rinses help.  

Good luck to ya'll!! 

Happy Holidays!!

 

at week 6! I hope Dima is

at week 6! I hope Dima is luck like that. I try to think one day at a time but then the mind plays games with you and wonders. but thanks for the reminder, i can barely handle what today brings as to have time to worry about what tomorrow has in store. Happy Holidays to you too.

wmc

avisemi said:

at week 6! I hope Dima is

at week 6! I hope Dima is luck like that. I try to think one day at a time but then the mind plays games with you and wonders. but thanks for the reminder, i can barely handle what today brings as to have time to worry about what tomorrow has in store. Happy Holidays to you too.

Wow, week six already.

Just one day at a time, and for now only today matters. Soon, you and your husband will be through this stage, and on the road to recovery. It too has a few bumps in the beginning, but smooths out soon. At that point is when you can see and think about your tomorrows together. Keep strong and you get some rest as well. This next year will be differant but so much better for you both. You both our in my prayers and you will always get support from everyone here. This can be a hard time of year on the ones fighting the beast, but just think how special next year is going to be.

Bill

eulerphi

avisemi said:

Eulerphi,  
how many

Eulerphi,  

how many treatments will he have?

I hope it all goes well and you are getting support from loved ones. 

16 sessions of neutron radiation

Hi, sorry for the delay. I just saw your question. He is getting 16 sessions with 4 sessions per week. He is also getting neutron radiation as opposed to standard gamma based radiation, so his side effects may be more intense.

debbiejeanne

avisemi, i'm sorry you need

avisemi, i'm sorry you need to be here but happy that you found us.  its been 5 yrs since my rads so i don't remember how quickly effects started but wanted to say welcome to the family and i will be praying for you and your hubby.  it is a rough road he is on but he will make it through.  we will be here to encourage both of you and help you along the way.  please keep us posted on his progress.

God bless you,

dj