Husband diagnosed with SCC head and neck

CivilMatt

MMDowns said:

He has a feeding tube already

He has a feeding tube already. The dr. Wanted to put one in before treatment even started. I'm really glad that he insisted. Today was a good day.  He tried a berry smoothie with protein and said it tasted good. That pleased me to no end. This evening he had about 3 bites of Mac and cheese and also said that was Ok. I'll take these small miracles. He's still bummed that food isn't fun anymore and I know that mentally that makes this hard for him. I will do whatever it make whatever he wants at this point.  Day to day is how we are living. 

one meal at a time

MMD,

Let him know; just do whatever works for food, eating, drinking, calories and nourishment.   It may get much worse and there is no need to get seriously bummed about it. I could not get over the awful feel and taste, no taste for 7 months.  But, things turned around and I am happy to say eating and enjoying food has returned to a good place.

Matt

MMDowns

CivilMatt said:

one meal at a time

MMD,

Let him know; just do whatever works for food, eating, drinking, calories and nourishment.   It may get much worse and there is no need to get seriously bummed about it. I could not get over the awful feel and taste, no taste for 7 months.  But, things turned around and I am happy to say eating and enjoying food has returned to a good place.

Matt

It's been a rough start to

It's been a rough start to today. He vomited in the car in the way back from church. And he said it hit him out of nowhere. Hr wasn't feeling nauseous before, he sipped water and then a few minutes later he was vomiting. I don't know what to do. I put a call in to the on call dr because he's not eating enough to lose any nourishment from the Vomiting.  I'm getting scared now.  It's been a week and all of the side effects that they said could happen have happened. Is this a delayed response to the chemo? He's been taking Zofran on a regular basis. But the Emend and Aloxi are probably out of his system by now. His last day of the steroid was Friday.  Any suggestions would help. I'm scared. We have 6 more weeks. Six.  Has anyone stopped the chemo and just did the radiation? Help please. 

Noellesmom

Nothing by mouth

Until the vomiting stops. Wait a few hours and then try ice chips. continue the Zofran.

Don't panic. Doing without hydration or food will be okay temporarily. If one has a stomach virus it might be a couple of days before food is resumed. Your husband will be ok. 

CivilMatt

Noellesmom said:

Nothing by mouth

Until the vomiting stops. Wait a few hours and then try ice chips. continue the Zofran.

Don't panic. Doing without hydration or food will be okay temporarily. If one has a stomach virus it might be a couple of days before food is resumed. Your husband will be ok. 

stress

MMD,

There are many nausea meds.  Let you team know of his condition.  You normally have to be very proactive if nausea has a habit of striking.  Once you get that under control I can’t stress enough how important hydration and nutrition are.  Of course if he is vomiting that throws a wrench in the works, but missing out on food and water can be a problem. As Noellesmom said "your husband will be ok".

Don’t get scared, just apply what you have learned and this will likely be under control soon.

Matt

MMDowns

CivilMatt said:

stress

MMD,

There are many nausea meds.  Let you team know of his condition.  You normally have to be very proactive if nausea has a habit of striking.  Once you get that under control I can’t stress enough how important hydration and nutrition are.  Of course if he is vomiting that throws a wrench in the works, but missing out on food and water can be a problem. As Noellesmom said "your husband will be ok".

Don’t get scared, just apply what you have learned and this will likely be under control soon.

Matt

He's better. I talked to the

He's better. I talked to the on call dr and he said to start the steroid again. He told me that he tells his patients to take the steroid in days 4,5,6 because there is a delayed reaction from the Cisplatin. So we did that and Zofran and the long named other anti nausea drug. He slept the better part of the day. But did have 1/2 bottle of Ensure (small sips) and water. He says he wants to eat desperately but now is gun shy to eat and also not sure what sounds good.  so we wait and try foods and pray. A lot of praying. And trusting the dr.'S and nurses. He goes in tomorrow for IV fluids and some IV anti nausea meds. I'm sure he'll feel better after that. He is bound and determined to go on the school retreat tomorrow. I'm nervous about that too. I've turned into a large worry wart. I'm trying to just let go and trust. That's essier said than done. But again. Thanks so much for your kind words and advice. 

BlacksuitDC

Fluids and the scent of orange blossoms

Tell him one can't 'power through' radiation and chemo. It is very humbling. Rest even if you cannot sleep. Very, very important to keep the weight up.  He must eat.  Sip Ensure Plus in place of water.  Get as many calories as you can into him. It doesn't matter if it doesn't sound good. Eat anyway. Request fluids a day or two after each chemo treatment. Then request fluids again a day or two before the next round of chemo. Demand them if you need to.  Important: get fluids 2xs a week if you can. You hopefully won't get 'really sick' until about the end of week 4.  He will get though this.  

 

 VIP: during radiation - certain smells can help keep you from being nauseous.  I had my treatment at MD Anderson.  The scent of Orange blossoms helped me.  The little RN who helped me liked lemon when she received the radiation treatment.  She said she would drive holding a cut lemon to her nose. She said she carried a lemon everywhere to smell.  Test smells out. If he gets really sick, the doctors will cut the dose of cisplatin but he needs to get thought these 6 weeks on the dose prescribed. He needs the cisplatin. 

MMDowns

BlacksuitDC said:

Fluids and the scent of orange blossoms

Tell him one can't 'power through' radiation and chemo. It is very humbling. Rest even if you cannot sleep. Very, very important to keep the weight up.  He must eat.  Sip Ensure Plus in place of water.  Get as many calories as you can into him. It doesn't matter if it doesn't sound good. Eat anyway. Request fluids a day or two after each chemo treatment. Then request fluids again a day or two before the next round of chemo. Demand them if you need to.  Important: get fluids 2xs a week if you can. You hopefully won't get 'really sick' until about the end of week 4.  He will get though this.  

 

 VIP: during radiation - certain smells can help keep you from being nauseous.  I had my treatment at MD Anderson.  The scent of Orange blossoms helped me.  The little RN who helped me liked lemon when she received the radiation treatment.  She said she would drive holding a cut lemon to her nose. She said she carried a lemon everywhere to smell.  Test smells out. If he gets really sick, the doctors will cut the dose of cisplatin but he needs to get thought these 6 weeks on the dose prescribed. He needs the cisplatin. 

I think we both thought we

I think we both thought we would have a little more time to get used to the side effects from the chemo. It just hit us so quickly. Overnight, really.  It's a mind reset for us. Not so much to power through just a new way of life for us.  I also think that this week was an eye opener to both of us how quickly your body is affected. He went in today for IV fluids and anti nausea meds. He walked out feeling so much better. He was able to drink Ensure which pleased both of us to no end.  We are monitoring the ringing in his ears which he has had since day one. Our oncologist and nurse are a bit concerned that the ringing isn't going away. So they may have to lower the dose of Cisplatin because of the potential damage to his hearing.  He is also scheduled now to receive fluids 2x a week and if we need more we will absolutely push for it.  he will get through this. The end result is what we are working towards. 

MMDowns

Ringing inears

Hello all,

Second day of the second week and it's been a good day.  My husband ate a small sandwich and so far it's staying in!  He's at the retreat and it's been so hard to surrender and let him take care of the meds and all that.  Which is silly, he's a grown man.  Anyway, I know that tinnitus is a symtpom of the Cisplat, however, when we meet for our intital consulation with our oncologist she stressed how serious this could be and wanted us to let her know if he experiences this ringing.  Well, that started on the day after chemo and has not gone away.  I have talked to our oncology nurse and she said to monitor it and she would tell the Dr.  That was last week.  So when my husband had to go in for fluids yesterday my mom went with.  (I had a job interview that I could not reschedule).  She told the infusion nurse and the nurse even seeemed worried.  So when is too long for the ringing?  Deb, our nurse said the Dr. might decrease the dosage of the Cisplat or worse case scenario, he can't do the chemo at all.  Which I can't imagine is a good thing.  But, I do not want my husband to have irreversible hearing damage among the myriad of long lasting side effects from the rads.  Anyone else face this dilemna?  As always, advice is welcome and needed.

BlacksuitDC

MMDowns said:

I think we both thought we

I think we both thought we would have a little more time to get used to the side effects from the chemo. It just hit us so quickly. Overnight, really.  It's a mind reset for us. Not so much to power through just a new way of life for us.  I also think that this week was an eye opener to both of us how quickly your body is affected. He went in today for IV fluids and anti nausea meds. He walked out feeling so much better. He was able to drink Ensure which pleased both of us to no end.  We are monitoring the ringing in his ears which he has had since day one. Our oncologist and nurse are a bit concerned that the ringing isn't going away. So they may have to lower the dose of Cisplatin because of the potential damage to his hearing.  He is also scheduled now to receive fluids 2x a week and if we need more we will absolutely push for it.  he will get through this. The end result is what we are working towards. 

So glad...

What great news!  IV Fluids are very important. They make you feel so much better. It is hard to drink that much water. The anti-nausea meds they add to the IV drip work very well. Better than the pill, I thought.  Turn his Ensure Plus into a smoothie.  Add canned peaches in heavy syrup. Add the syrup, too. A banana.   Maybe if his throat isn’t hurting, try fresh or frozen strawberries, etc.  Add Noosa yogurt.  I prefer the Noose Honey. Heavy with calories. A Chicago Northwestern Children’s Hosp pediatrician prescribed Noosa Honey yogurt for my grandchild eat to gain weight. I eat a tub each day with an Ensure Plus mixed like a smoothie with a ton of fresh strawberries, fz pineapple. I have eaten 4-5 tubs with 3-5 Ensure Plus’s a day. So hard but I did it!  

 

If his throat becomes sore, switch to bottled Fiji water.  Fiji water is a very kind on sore throats. Healthy people don't understand but tap water can really burn. Tap water has fluoride and chlorine. Spring Water is the next best but avoid Purified and tap.  Hopefully water will not be an issue but if it is – Fiji Water is the answer.   

blueskiestx

It's been two weeks since our

It's been two weeks since our last treatment.  My husband has about 50% of his hearing.  It's one of those nasty side effects of Cisplatin.  Everyone I have talked to is different.  Some people get their hearing back, some don't.  

My husband's hobbies rely on his hearing.  So it's really frustrating.  We will just wait it out and hope for the best.  As long as the cancer is gone we can deal with the hearing loss.

Just keep getting his hearing checked, not by the cancer doctors.  Get checked by an ENT.

 

Sprint Car Dude

Ringing

I am 4 months post treatment. I still have ringing to my ears. Some days less than others. My hearing seems to be fine, just the constant ring. Just waiting on time to pass and the body to due its amazing healing routine. . On a good note I started back to the gym this week. Fight On.

JKELLY0409

Hi there. I also have

Hi there. I also have nasopharyngeal carcinoma,  stage III.  I got diagnosed last may and started chemo and radiation in June. finished chemo in November.  I also had 35 radiation  treatments. I am 43, mother of two kids 15 and 17 years old. I work in a hospital so I was unable to work due to infectious environment concerns. Anyway,  I started on cisplatin, but they switched me to carboplatin after 2 doses because of ringing and permanent hearing loss in both ears! The carboplatin was so much better! Less side effects including nausea.I also received 5fu and home infusion chemo at the end. I had to sleep with biotene by my bed because dry mouth was so severe and used majic mouthwash daily for sores in my mouth for 6 months. I never had a feeding tube placed and I lost 62 lbs and lived on ensure. Hang in there, it will get better! I had my chemo port out today! I am eating better now and some saliva and taste buds are slowly returning. I went back to work last week and it felt good doing something  normal again! Good luck!!

MMDowns

blueskiestx said:

It's been two weeks since our

It's been two weeks since our last treatment.  My husband has about 50% of his hearing.  It's one of those nasty side effects of Cisplatin.  Everyone I have talked to is different.  Some people get their hearing back, some don't.  

My husband's hobbies rely on his hearing.  So it's really frustrating.  We will just wait it out and hope for the best.  As long as the cancer is gone we can deal with the hearing loss.

Just keep getting his hearing checked, not by the cancer doctors.  Get checked by an ENT.

 

I do hope that your husband's

I do hope that your husband's hearing come back.  I know chemo is so very helpful, but it's also a pain in the a**.   We met with his oncologist this morning & it went well.  She and the radiation dr. are concerned about his kidney function. It really took a hit from the Cisplat and with him being so dehydrated. He has to go in for fluids today, tomorrow, and at least three days next week.  Thanks goodness he is on Spring Break next week.  She told us that there is a potential that if his kidney levels do not imorove he may not be able to do chemo at all.  Which is not what we want to here.  She is also 99% sure she will have to adjust his doasge for next time (if his kidneys can handle a next time).  We will definitely be pushing fluids as much as we can over the weekend.   He met with the radiation dr. on Wednesday and the tumor has shrunk and the the dr. says it is responding well to the treatment.   That was so good to hear.  He is feeling good this week.  He's been eating and drinking and the nausea is being taken care of with the Zofran.  I will take as many good days as I can.  I know he feels the same way.  We just keep telling ourselves that every day is a "new normal" and to expect the unexpected.   

 

   How is your husband doing with the recovery process?  I am sure you are both glad to be done with the treatments! Take care!

MMDowns

JKELLY0409 said:

Hi there. I also have

Hi there. I also have nasopharyngeal carcinoma,  stage III.  I got diagnosed last may and started chemo and radiation in June. finished chemo in November.  I also had 35 radiation  treatments. I am 43, mother of two kids 15 and 17 years old. I work in a hospital so I was unable to work due to infectious environment concerns. Anyway,  I started on cisplatin, but they switched me to carboplatin after 2 doses because of ringing and permanent hearing loss in both ears! The carboplatin was so much better! Less side effects including nausea.I also received 5fu and home infusion chemo at the end. I had to sleep with biotene by my bed because dry mouth was so severe and used majic mouthwash daily for sores in my mouth for 6 months. I never had a feeding tube placed and I lost 62 lbs and lived on ensure. Hang in there, it will get better! I had my chemo port out today! I am eating better now and some saliva and taste buds are slowly returning. I went back to work last week and it felt good doing something  normal again! Good luck!!

Congratulations on going back

Congratulations on going back to work!  I bet it felt good to just do something that felt normal.   My husband's oncologist did't seem too worried about the ringing.  She seems to think it will be OK.  Me? I am not too sure.   She also doesn't seem to be a big fan of switching meds, but if it comes to that I will push for something else.  I have noticed a lot of people mention Carboplatin so I will ask about that.   Right now his kidney's are an issue and trumps the ringing in the ears.  They are concerned that his kidney function was hit so hard and fast.  Not sure if that is also because he is a diabetic?  However, if his levels do not go up enough chemo may not even be an option at all.  We really do not want that.  The tumor has already shrunk and we want to continue this positive path to healing.   We just have to keep hydrating and praying.  That's our plan of attack for now.  Thank you for your kind words and again congrats on the end of treatments and going back to work!!

MMDowns

Sprint Car Dude said:

Ringing

I am 4 months post treatment. I still have ringing to my ears. Some days less than others. My hearing seems to be fine, just the constant ring. Just waiting on time to pass and the body to due its amazing healing routine. . On a good note I started back to the gym this week. Fight On.

We are fighting the fight!

We are fighting the fight!  Tumor has already shrunk in one week!  So glad that you are able to resume your activities!

Crazymom

Side effects

I think you have gotten a lot of good advice.  Water water water....you will get horribly constipated from the pain pills.  Do not get behind on the water.  I had nausea medicine and never had a problem with the chemo for 6 weeks.  I had six weeks of radiation.  I was ok until the fifth week and in lots of pain the next month.  I did not have to get a feeding tube but lost a lot of weight.  I have just had my 5 year checkup and have been cancer free for 5 years.  This is tough but you have a good chance of making it and living a wonderful life.  I am feeling well and only have to take Syntroid for struggling thyroid.  Beside that I feel really good.  Hang in there ...it will get worse before it gets better...but it will get better!

 

Lorikat

I had a full round of

I had a full round of Cisplatin when I had Anal cancer.  5 years and still here!

KlammsBride19

RusticWindmill said:

Sounds like I may just be a bit ahead in my treatment..had I had

My diagnose sounds very similar to your husbands.   Squamous Cell Carcinoma Stage 4a HPV+.

I had my PEG and powerport placed last week Thursday during the same procedure.   Between the anesthesia and pain meds my bowels took a long time to kick back in and caused my BP to drop and me to pass out.   Stool softener remedies this quickly.     The PEG.   Got good info on cleaning the tube and surgical site but not how to mitigate the extra air in the tube which caused lots of pain from injecting the air.   Found a great video online that showed how to back fill to syringe and then do a great flush with out filling stomach with air.   PEG is still in the clean 3 x day standby state.     There is a steroid given for the cisplatin.   My first side effect was the chemo hiccups from this.  They are very annoying.   Was told to use my lorazepam and have some ginger tea to help.   It helps but still get the hiccups for about 10 minutes or so every couple hours.    

Get a small pillow for him to hook to his belt.   Looks funny but if you have to cough, sneeze or hiccup holding the pillow over the peg with light pressure helps so much while healing.    

If his counts go down, all people are different, I think a school would be the last place I would want to be with a weakened immune system.    Maybe my medical team is being ultra cautious but they warned me as flu in this area has really broken out.

just wanted to wish you and your husband the best as you begin the journey.

 

Your peg tube

Hello!! You mentioned that you watched a video for your peg tube. Where can I find it to watch? My husband had his peg tube put in 2 weeks ago and I can use all the help I can get when it comes to caring for it.

MMDowns

KlammsBride19 said:

Your peg tube

Hello!! You mentioned that you watched a video for your peg tube. Where can I find it to watch? My husband had his peg tube put in 2 weeks ago and I can use all the help I can get when it comes to caring for it.

Did a home care nurse come

Did a home care nurse come out to your home to give instructions? We had one the next day come over and give us the run down on caring and cleaning, what to put in it and what to avoid. 

MMDowns

Beginning of the third week.

Beginning of the third week. my husband is definitely starting to feel some side effects from the radiation. Nothing too bad, dry mouth and his tongue, at the base, is starting to feel sore.  Also, the taste buds are all over the place. One day something tastes so good and then the next day it's either bland or doesn't taste good at all. but we are so grateful that he can still eat and swallow. He's been getting fluids daily since last Wednesday. They are really concerned about the kidney function.  He had blood work done yesterday afternoon and meets with the radiation oncologist today. So we will see what he says about his kidneys today.  If they aren't improving then chemo may not be an option. We shall see. He's pushing water like crazy!