how to help my husband through this ?

larrydsparks

hi everyone, i have been reading a lot of the posts. IT sure does help hearing how others are dealing with this ugly thing Cancer!!! My husband was diagnosed with oral squamous cell carcinoma HPV positive N16 i think, its all so confusing. Anyways they said no surgery and 7 weeks radiaition and 3 big bad boy doses of cisplatin at every 3 weeks. He started his treatment on June 28th and had his first round of chemo, he didnt start rad until July 5th bacause he was sick 6 days strait and couldnt keep anything down really. he lost 19lbs in this time. He was taking 4 different anti nausea meds and this seemed to make him worse not better. Doc finally called in a sapository and after he took that he was hungry and had his first meal in 6 days. He has been better since and is on the 10th rad treatment and has the next round of chemo tomorrow. Rad is now causing a soar throat and no taste at all. He is still eating , surly thats likely to change with chemo tomorrow , we anticipate nausea and vomiting again. He is getting down in the dumps a bit and im not sure what to say or do to help. I want to help him in any way i can , but he is ready for this to be over. Im scared that at the end of this i will not get the same man i married back. Please help with any advice you can share. I have heard of the magic mouth wash and was going to try to get a script for that. doctor gave him another wash that helps with soars in the mouth, but that hasnt begun yet, just a white lining in the mouth. Thanks for any advice.

Clare

soonermom

Hang In There

Sadly, there are no magic easy answers.  It is just heartbreaking as a caregiver.  All I can tell you is we did make it through.  We are 12 weeks post treatment,  He is working full-time, taking 2 mile hikes, talking, having fun, we have been out to a few restaurants and he is trying to learn to eat again.  No, I don't have the same man as before cancer but I have a great man to love and enjoy.  We don't have all of our life back but we have a good life and I see it getting better.  When I was where you are, all I could do was present an accurate picture to the treatment team of how my husband was really tolerating treatment.  He tended to minimize his side effects at the clinic but at home we were both aware of the real struggles.  Please ask them to check to see if he has thrush. My husband had a very difficult road but we made it through.  I would put up a calendar and cross off how many days to the weekend when he had no treatments.  We were struggling just to make it day to day.  If meds are not working keep asking until you get help.  Does he have a PEG tube?  

CivilMatt

tough spot

Hi Clare,

Hopefully, his nausea will be his worst side effect, but maybe not.  It is disheartening to hear they haven’t controlled the nausea yet, but I am hoping on this next go-a-round he does better.  There are so many choices, they should land on a winner.

I used magic  mouth wash very successfully for throat, tongue and mouth discomfort.  I had a very good mixture and sipped, swished and swallowed (every drop) of 6 bottles.

I am sorry, but he needs to try anything to feel better and to keep a  positive outlook.  I know it is difficult, but it is one day at a time.  Try to stay hydrated and fully nourished, this is very important.  Don’t give up, it does get much better.

Matt

Andy13460

Nausea

Im wondering are they giving him the anti nausea medication before they administer the Cisplatin? I was given a capsule (Emend) that was good for 3 days and steroids (Dexamethasone) 1 hour before I then had to take steroids Dexamethasone  for 3 days after the Cisplatin?

rebelbert

Don't Give Up!

I had the very same diagnosis...squamous cell carcinoma, HPV positive.  The tumor was at the base of my tongue.

I lost a lot of weight early in my treatments, just like your husband.  So much so that they put me in the hospital for 3 days to stabilize me.  My throat was so "burned" that eating real food was out of the question.  If that is the case with your husband, I highly recommend getting a feeding tube. It was the only source of nourishment for me while I completed my treatments.  I lost about 20 pounds in the first 2 weeks, but only 5 more after the feeding tube was installed.

Because your husband's tumor is HPV positive, the likelihood of the treatments being successful is above average.  He has a good chance of surviving. But he will not be the same...I call it my "new normal".  But your husband's "new normal" is likely to be much different than mine. My point is, you learn to deal with it.

My last bit of advice is surround your husband with a great support group, pray for him, and don't look too far ahead.  Win the day as I used to say. As best your husband can, win each day and before you know these brutal treatments will be over.

God Bless you and God bless your husband.

 

Chopster

Dont give up

A Huge Amen to that advice!!! rebelbert is exactly right. You have to embrace it, learn all you can about it, have questions ready for the Doctor at each visit if you have any. I was on erbitux due to already having hearing loss so they stayed away from the drug your husband is on. I had no nausea so I cant speak to that but instead a severe measle like acne rash which was controlled with a topical antibiotic. I fibbed a bit and told them my throat was more sore than it was and had the stomach tube placed even before i could no longer swallow. I was 278 lbs and dropped to 203 in about 6 weeks. Crazy it probably saved my life in just the weight loss. I did experience short term diabetes but it was reveresed. If your husband does employ a feeding tube then make sure he is on something like glucerna which is for diabetics. The jevity 1.5 pushed my blood sugar so high that I had to stop work at week 3 and was hospitalized for a week. I guess there are standard side affects and maybe some peculiar to each individual. I was a late stage 3. Cancer I think takes something away you never get back however I my sense of humor is intact. 7 years later I can say Im glad I didnt throw in the towel and quit. If you do then you quit on your family and friends. Your husband will still be your husband. His food choices may change, his taste for some foods will change due to lack of saliva. Mine has returned to about 90 % of what it once was. I didnt consume any alcohol for 3 to 4 years due to sensitive linings in the mouth and throat. that hopefully will pass. use the swish and swallow religiously and check your insurance for a two part product that cleans the yucky film that mouth rinse doesnt take care of, thats if he has a problem with it. Like I said, he may not.  My Doctor told me that I was one of the most severe cases he had as regards to side issues and your husband may well fair better. Hydration as reblbert said is very important. If he does need a tube then there pain meds in liquid form he can use. Some meds are pill form only and can be crushed and taken in warm water thru the tube. It can be rough but after its over it will seem like a distant bad dream. Focus not on any perceived change in your husband but keeping the good man you have. Roll with the flow, if he doesnt want to talk then he just doesnt feel like it, if he wants to sleep then let him but keep his nutrition and hydration up.

 

In our prayers and I know these survivors are here for you.

Gods Peace.  Chopster

 

larrydsparks

update on Larry

He had his second round of chemo on wednesday and has been sick since. He went in Thursday and Friday for fluids and got a diiferent nausea med that dissolves. He is doing beeter today and is drinking fluids and has been going to the restroom like normal whcih is what the doctor told us to make sure of over the weekend , and if he wasnt going to the restroom every 4-6 hours then he would need to go to the hospital becasue they worry about the kidneys. So far we are ok. He is trying to eat today , so hopefully he will be able to and will keep it down. Some asked about the feeding tube , he doesnt have one and is going to try to make it through this without it. He is given meds with the chemo and the one they gave this time was emend. I feel like even though its been bad , it wasnt near as bad as the first round. We do have a mouthwash for the mucosis or saors but so far he hasnt used it but the lining is shedding and i think he needs to start. We also got the magic mouth wash script ready to go when he needs that. He was unable to do thursday and friday radiation treatment , but hopefully Monday he will. They are planning on checking his blood counts on Monday so we will see where we stand. As for weightloss he had gained back 9 lbs but then on wednesday before chemo he was down 4 lbs. so this coming monday im sure he will be down even more after not eating. Im trying to stay strong ,its been tough. i know its just one day at a time. Thanks for all the advice , its one thing that helps a lot.

Clare

Klingels

same boat

I am right there with you. My husband just finished his chemo and radiation treatment a week ago. Every chemo week was a new journey with nausea and the inability to eat. We are indeed taking this journey one day at a time. Currently, my husband is down 30 pounds. He had to get a feeding tube, but was unable to get enough calories. Now he has TPN, nutrients being infused intravenously.

Andy13460

Chemo

They should have given him an infusion of a drug called mannitol with  chemotherapy. Cisplatin can affect the kidneys, and giving saline and mannitol can help prevent any damage. Mannitol is an osmotic diuretic that increases urine output. It may be used before cisplatin to reduce the nephrotoxic effects of cisplatin.

AnotherSurvivor

If you have not started it

If you have not started it yet, consider daily saline drip infusions.  Many of us ended up there.  The infusion center became the daily destination; a rad hit at nine, the infusion center at ten.  That continued for several weeks after treatment ended.  Depending on your insurance, you can also get home health support and do saline at home, that got us thru the weekends.  Besides the extra hydration, it gives the nursing staff extra eyes-on time.  Mine were very attentive, and it helped catch problems at the beginning.

larrydsparks

Klingels said:

same boat

I am right there with you. My husband just finished his chemo and radiation treatment a week ago. Every chemo week was a new journey with nausea and the inability to eat. We are indeed taking this journey one day at a time. Currently, my husband is down 30 pounds. He had to get a feeding tube, but was unable to get enough calories. Now he has TPN, nutrients being infused intravenously.

update

wow, thats somthing i didnt know about , TPN. I will have to ask about that. He doesnt want a pet tube nad ENT would prefer him not. He was sick as a dog for so many days after chemo on the 19th that we went in to the hospital and were there for 6 days. He ended up having his gall bladder removed on saturday. It has been a roller coater, but he is getting better now since we know the route of his nausea and vomiting. Also he had ensophoghitis which helped contribute. He is now going to be getting an anti body onfusion instead of chemo. doc said he just cant tolorate cisplatin. So we will see how this goes.

Klingels

larrydsparks said:

update

wow, thats somthing i didnt know about , TPN. I will have to ask about that. He doesnt want a pet tube nad ENT would prefer him not. He was sick as a dog for so many days after chemo on the 19th that we went in to the hospital and were there for 6 days. He ended up having his gall bladder removed on saturday. It has been a roller coater, but he is getting better now since we know the route of his nausea and vomiting. Also he had ensophoghitis which helped contribute. He is now going to be getting an anti body onfusion instead of chemo. doc said he just cant tolorate cisplatin. So we will see how this goes.

TPN and feeding tube

My husband is now 2 weeks post treatment and still has both the feeding tube and the TPN. He had a rough time with the Cisplatin and nausea which also wrecked havoc with his desire and ability to eat. Before the TPN, he was on saline hydrations fed intravenously at home. Once he got the TPN, the hydration stopped. We are hoping the TPN will be done in 1-2 weeks. In order to get off the TPN, he has to ingest 2500 calories through his feeding tube. He has managed to achieve half that this week. I hope you and your husband figure out a way to get the nutrition he needs while he battles this disease.

robswife87

He will not be

He will not be the man you married. His world changed the day he was told he had cancer. His world changed again with the start of treatment and will continue to change the farther into treatment he goes. It is still changed for several weeks when treatment stops. 

He will come back a little at a time but never the same. 

We the caregivers do have a hard time but we do not experience their pain and the sickness and the fact that the strenght and stamina they have is just gone.

My husband is 4 years out of treatment and NED. Thank the Lord, but he will never get the muscle and stamina back. You don't recover at the age of 50 like when you were 20. He can no longer be the one who works the hardest or latest in the day. It changed him. 

He has a different outlook in life. He found out his real friends and the people he thought were friends. He no longer looks at things the same. He was a workaholic, now he refuses to be at work late. 

He is much more synical and he no longer volunteers himself to people like before. 

Yet, he is my husband and I love him. He decided life at home is more importnat than the money you make. We have a lot more time together now, but  a lot of it is him relaxing to be ready to tackle the next day and I am okay with that. He listens more to me and he is more loving to me as I with him. 

You will have to get used to his "new normal" because this is the life cancer gave him. You will start to realize what is really important in life. If the grass does not get cut, or he doesn't want to go to the family reunion or doesn't want to eat what you cooked for dinner, so be it. 

In the end of this, you both change into different people, but you are doing it together and with each other

 

Andy13460

New Normal not me I'm old normal nearly. It's a state of mind

I get a bit sick of this new normal term  Im 57 years of age  40 days post treatment today, running 35 miles a week, back to work, not using pain medication, eating normal food ( taste is about 90% back Saliva 80% back)  I will find out if the 3 Cisplatin & 35 doses of radiation worked some time in September  if it has good if it hasnt nothing I can do to change that. I refuse 100% to let cancer make me a victim or a different person. I was T2:N1:M0 SCC base of tongue HPV16+

OKCnative

Andy13460 said:

New Normal not me I'm old normal nearly. It's a state of mind

I get a bit sick of this new normal term  Im 57 years of age  40 days post treatment today, running 35 miles a week, back to work, not using pain medication, eating normal food ( taste is about 90% back Saliva 80% back)  I will find out if the 3 Cisplatin & 35 doses of radiation worked some time in September  if it has good if it hasnt nothing I can do to change that. I refuse 100% to let cancer make me a victim or a different person. I was T2:N1:M0 SCC base of tongue HPV16+

Andy, exactly why I follow

Andy, exactly why I follow your posts with the most interest.

I truly believe that how you come out of this is a direct refelction to what you put into it. I've met many people now that are going through exactly what we've all experienced (as either a patient or a caregiver). Some people go through this angry. Others full of pity. Some give up. Some give in. And, some look at it as a speed bump and simply look forward to being exactly the person they were before their diagnosis. I certainly think it can change one's perspective. I already have plans i didn't even consider prior to my diagnosis. My diagnosis has caused me to refocus, not 'change' in any way that is not positive.

We literally celebrated my diagnosis - we had a 'Happy Cancer Cake' and everything. I made a list of all the restaurants I wanted to try before my taste buds checked out. We joked about how my Amazon order history went from cool electronic gadgets to vomit bags and a Squatty Potty. It's all simply part of the journey.

larrydsparks

Andy13460 said:

New Normal not me I'm old normal nearly. It's a state of mind

I get a bit sick of this new normal term  Im 57 years of age  40 days post treatment today, running 35 miles a week, back to work, not using pain medication, eating normal food ( taste is about 90% back Saliva 80% back)  I will find out if the 3 Cisplatin & 35 doses of radiation worked some time in September  if it has good if it hasnt nothing I can do to change that. I refuse 100% to let cancer make me a victim or a different person. I was T2:N1:M0 SCC base of tongue HPV16+

update

I think that is my husbands exact diagnosis. He couldnt tolerate Cisplatin. We were in the hospital for 1 week and he ended up having gall baldder removed. He is now starting an Erbotux antibody infusion weekly for the rest of his treatments which after today is 22 more radiation. I pray this works. So far no side effects like the chemo. So thats good. We will be done about second week in September. Good news is he is looking at things differently and talking about vacations he wants to take after all this is over. We own a business and all though it is important for it to be successfull becuase it is our lively hood, he says he wont just work all the time after this. He will plan family vacations and do more date nights. I'm looking forward to all of that for sure.

Selway2017

rebelbert said:

Don't Give Up!

I had the very same diagnosis...squamous cell carcinoma, HPV positive.  The tumor was at the base of my tongue.

I lost a lot of weight early in my treatments, just like your husband.  So much so that they put me in the hospital for 3 days to stabilize me.  My throat was so "burned" that eating real food was out of the question.  If that is the case with your husband, I highly recommend getting a feeding tube. It was the only source of nourishment for me while I completed my treatments.  I lost about 20 pounds in the first 2 weeks, but only 5 more after the feeding tube was installed.

Because your husband's tumor is HPV positive, the likelihood of the treatments being successful is above average.  He has a good chance of surviving. But he will not be the same...I call it my "new normal".  But your husband's "new normal" is likely to be much different than mine. My point is, you learn to deal with it.

My last bit of advice is surround your husband with a great support group, pray for him, and don't look too far ahead.  Win the day as I used to say. As best your husband can, win each day and before you know these brutal treatments will be over.

God Bless you and God bless your husband.

 

thanks

you have exactly what my husband has....

SuzJ

Honestly..

Cisplatin didnt do the Gall Bladder in. The Gall Bladder was bad, maybe Cisplatin emphasized that, but it didn't cause it. two unrelated structures.

 

Im with Andy, you get out what you put in. - altho I am totally jealous of his 90% tastebuds!

Maybe after surgery.... *fingers crossed*

larrydsparks

mucositis

well we only have 10 maybe 11 more rad treatments and 2 more infusions. It is starting to get bad, Larrys throat is soar and now its becoming more challenging to eat. I made a protein smoothie for him this moring and he said it upset his stomach a little. Im not sure what to do to make sure he gets nutrients. I bought almond milk because he said regular milk tastes bad. I put a really good protein powder and strawberries and half a banana. I bought hot tea to try to see if this will help, also mucinex. Also ran humidifier last night. He has the magic mouth wash but it seems to only hlep a little. He has liquid pain killer but dowsnt seem to want to take it. He is spitting stuff out every other minute, and not sleeping well. He doesnt have a feeding tube and nor does he want one. Does anyone have any other ideas????

AnotherSurvivor

In my experience, the same

In my experience, the same way that the effects of treatment tend to be cumulative (bad things accumulating), the recovery tends to be cumulative (good things lead to more good things).  It is depressingly slow, for some people literally depressing, but salt and soda rinses eventually heal the throat sores, calories eventually heal the body.  The activity that all generates leads to activity, and increasing activity leads to increasing activity.  

Getting to the end is a painful march in which all you can do is put one foot in front of the other and keep going.  It does end.  The magic bullets are either complete fiction or very, very basic techniques.  Most of us lose the desire to eat, most of us lose a great deal of weight.  At the end I lived on chicken broth/egg drop soup augmented with Benecals for every meal every day for at least two months. Every day from week 3 on was 2L infusion of saline.  700 calories was a very good day for a while.  In that I know I was not alone here.  It's just ugly.  It was only in month 7 post that I finally packed up my mucus suction pump.  But it does end.

My normal is now a blend of old and new, and some of the new will probably drop off in time, but that has always been part of life.  Overall my old diet war is over, I am so far under my old target weight that I now fight a maintenance battle not to avoid obesity, but to stay at [BMI] ideal; AND I'M WINNING and have 40 lbs of  lee-way.  My diet is so healthy it disturbs me, no alcohol at all this year; what's the point of life without ale and a fine Cali Zin?  Next month I start sailing again; for the anniversary of my cancer diagnosis in October: Fencing school (with Sabers!).  If I die at the helm with my sword in one hand and my brandy glass in the other it will be a good death, and certainly more pleasant than death by chemo.

Klingels

AnotherSurvivor said:

In my experience, the same

In my experience, the same way that the effects of treatment tend to be cumulative (bad things accumulating), the recovery tends to be cumulative (good things lead to more good things).  It is depressingly slow, for some people literally depressing, but salt and soda rinses eventually heal the throat sores, calories eventually heal the body.  The activity that all generates leads to activity, and increasing activity leads to increasing activity.  

Getting to the end is a painful march in which all you can do is put one foot in front of the other and keep going.  It does end.  The magic bullets are either complete fiction or very, very basic techniques.  Most of us lose the desire to eat, most of us lose a great deal of weight.  At the end I lived on chicken broth/egg drop soup augmented with Benecals for every meal every day for at least two months. Every day from week 3 on was 2L infusion of saline.  700 calories was a very good day for a while.  In that I know I was not alone here.  It's just ugly.  It was only in month 7 post that I finally packed up my mucus suction pump.  But it does end.

My normal is now a blend of old and new, and some of the new will probably drop off in time, but that has always been part of life.  Overall my old diet war is over, I am so far under my old target weight that I now fight a maintenance battle not to avoid obesity, but to stay at [BMI] ideal; AND I'M WINNING and have 40 lbs of  lee-way.  My diet is so healthy it disturbs me, no alcohol at all this year; what's the point of life without ale and a fine Cali Zin?  Next month I start sailing again; for the anniversary of my cancer diagnosis in October: Fencing school (with Sabers!).  If I die at the helm with my sword in one hand and my brandy glass in the other it will be a good death, and certainly more pleasant than death by chemo.

Here, here!

Well said!