Hello everyone

okeydokey

still hanging on

hi just thought I would give an update on my remarkable hubby.He is I guess doing well for the shape he is in.He is still driving though not as much.He is sleeping more and more though--could be the meds or the cancer--hard to tell.He is still taking keytruda every 3 wks--no scan to see if it's helping yet-dont know why--maybe they know its not going to help alot.no side effects from it at all--he has done really well with all his treatments--chemo radiation and keytruda.It is such a shame they didnt cure it,Heis getting really tired I have noticed--though he struggles daily  he still does some things (all he can).I am so afraid his time is short now--I can just tell somehow.He has still not given up yet--He never will.will update as time goes along--please remember us in your prayers--thanks

okeydokey

update

hubby's keytruda was stopped Friday because his blood pressure dropped to 60/40--was sent to ER where it was discovered he had pneumonia--wanted him to stay in hospital but he didnt want to--so they ran a bag of doxycycline throug veins.He was sent home with oral version.Today he is having a pet scan to see if the cancer has progressed more--dr seems to think so,and if it has he doesnt want to do more treatments.He told him he doesnt think keytruda was working--and maybe he could go back to chem0.It all depends what the scan shows.They wee suggesting hospice.He wants to do more chemo,but dr has told him sometimes when your body is so compromised it does more harm than good.He has lost so so much weight.The dr ask me if he was ever up and about.I told him yes he is still up and doing things--he was very surprised.I am very worried about this pet scan and how it will affect him mentally if the news is bad.I have a feeling it isnt going to be good.

swopoe

okeydokey said:

update

hubby's keytruda was stopped Friday because his blood pressure dropped to 60/40--was sent to ER where it was discovered he had pneumonia--wanted him to stay in hospital but he didnt want to--so they ran a bag of doxycycline throug veins.He was sent home with oral version.Today he is having a pet scan to see if the cancer has progressed more--dr seems to think so,and if it has he doesnt want to do more treatments.He told him he doesnt think keytruda was working--and maybe he could go back to chem0.It all depends what the scan shows.They wee suggesting hospice.He wants to do more chemo,but dr has told him sometimes when your body is so compromised it does more harm than good.He has lost so so much weight.The dr ask me if he was ever up and about.I told him yes he is still up and doing things--he was very surprised.I am very worried about this pet scan and how it will affect him mentally if the news is bad.I have a feeling it isnt going to be good.

Sending prayers that you get

Sending prayers that you get good results from the scan.

johnsonbl

Sending positive vibes...

Hope you get some good news...sounds like you're due.

Brandon

wbcgaruss

Thinking on the Positive

Praying for your next news to be good and on the positive side-God Bless

accordiongirl

okeydokey said:

update

hubby's keytruda was stopped Friday because his blood pressure dropped to 60/40--was sent to ER where it was discovered he had pneumonia--wanted him to stay in hospital but he didnt want to--so they ran a bag of doxycycline throug veins.He was sent home with oral version.Today he is having a pet scan to see if the cancer has progressed more--dr seems to think so,and if it has he doesnt want to do more treatments.He told him he doesnt think keytruda was working--and maybe he could go back to chem0.It all depends what the scan shows.They wee suggesting hospice.He wants to do more chemo,but dr has told him sometimes when your body is so compromised it does more harm than good.He has lost so so much weight.The dr ask me if he was ever up and about.I told him yes he is still up and doing things--he was very surprised.I am very worried about this pet scan and how it will affect him mentally if the news is bad.I have a feeling it isnt going to be good.

Hoping for the best

but please know that IF the doctor suggests hospice, it doesn't necessarily mean "the end is near".  My mom has been on hospice for over 6 months and though she went on it because she opted to NOT get treatment, there are many stories from her hospice team of people who have gotten BETTER while on hospice care.....to the point of going OFF of hospice.  i think the value that hospice gives to a patient is mostly unknown simply because we tend to view hospice as "days from dying" when in fact, hospice is a great resource and support that allows folks to LIVE.    Let's hope your husband has actually been responding to the therapy, but if not, it's always possible that his body will heal and recover quite a bit under the wondrful care of hospice.  i know that if my mom had not signed up for hospice as soon as she decided to not seek treatment, she would not be here today.  i FIRMLY believe that the care she's received from hospice has allowed her to do well long past the point she would have otherwise.

Sending good wishes and blessings yoru way.  Please keep us updated.

~ accordiongirl

 

big G

wbcgaruss said:

Thinking on the Positive

Praying for your next news to be good and on the positive side-God Bless

prayers your way

Praying that you receive good news.

Pclark21st

My thoughts are with your

My thoughts are with your whole family.  I hope that whatever news they give him that he fights to the end.  Dont give up. Never give up.

okeydokey

thank you all

for the good wishes--they are truly appreciated.Accordiangirl--I know hospice is wonderful--I work in home care and have been at homes where hospice came in and they truly are just wonderful.I think he is afraid because he knows this is the last thing--I think he believes if he doesnt get any more treatments he is not actively fighting the cancer,but as I know sometimes there is just no reason to have more.I believe when he gets the news of this pet scan yesterday he may change his mind.I hope so.I could tell the dr thinks it is going to show a progression of the cancer.I can tell myself he is doing worse ever day.It doesnt take a scan to see that.I am so sad about this,but there is nothing I can do ,if there was I surely would.I dont know how he even keeps going,but he does--what a fighter he has been and still is.I will keep updating as time goes on-- again thank you all for the prayers and good wishes

Rita

whoisjohngalt

okeydokey said:

thank you all

for the good wishes--they are truly appreciated.Accordiangirl--I know hospice is wonderful--I work in home care and have been at homes where hospice came in and they truly are just wonderful.I think he is afraid because he knows this is the last thing--I think he believes if he doesnt get any more treatments he is not actively fighting the cancer,but as I know sometimes there is just no reason to have more.I believe when he gets the news of this pet scan yesterday he may change his mind.I hope so.I could tell the dr thinks it is going to show a progression of the cancer.I can tell myself he is doing worse ever day.It doesnt take a scan to see that.I am so sad about this,but there is nothing I can do ,if there was I surely would.I dont know how he even keeps going,but he does--what a fighter he has been and still is.I will keep updating as time goes on-- again thank you all for the prayers and good wishes

Rita

So sad to hear, just know

So sad to hear, just know there are many, many people on this board will be saying a prayer for you and your husband.

whoisjohngalt

okeydokey said:

thank you all

for the good wishes--they are truly appreciated.Accordiangirl--I know hospice is wonderful--I work in home care and have been at homes where hospice came in and they truly are just wonderful.I think he is afraid because he knows this is the last thing--I think he believes if he doesnt get any more treatments he is not actively fighting the cancer,but as I know sometimes there is just no reason to have more.I believe when he gets the news of this pet scan yesterday he may change his mind.I hope so.I could tell the dr thinks it is going to show a progression of the cancer.I can tell myself he is doing worse ever day.It doesnt take a scan to see that.I am so sad about this,but there is nothing I can do ,if there was I surely would.I dont know how he even keeps going,but he does--what a fighter he has been and still is.I will keep updating as time goes on-- again thank you all for the prayers and good wishes

Rita

So sad to hear, just know

So sad to hear, just know there are many, many people on this board will be saying a prayer for you and your husband.

whoisjohngalt

okeydokey said:

thank you all

for the good wishes--they are truly appreciated.Accordiangirl--I know hospice is wonderful--I work in home care and have been at homes where hospice came in and they truly are just wonderful.I think he is afraid because he knows this is the last thing--I think he believes if he doesnt get any more treatments he is not actively fighting the cancer,but as I know sometimes there is just no reason to have more.I believe when he gets the news of this pet scan yesterday he may change his mind.I hope so.I could tell the dr thinks it is going to show a progression of the cancer.I can tell myself he is doing worse ever day.It doesnt take a scan to see that.I am so sad about this,but there is nothing I can do ,if there was I surely would.I dont know how he even keeps going,but he does--what a fighter he has been and still is.I will keep updating as time goes on-- again thank you all for the prayers and good wishes

Rita

So sad to hear, just know

So sad to hear, just know there are many, many people on this board will be saying a prayer for you and your husband.

okeydokey

whoisjohngalt said:

So sad to hear, just know

So sad to hear, just know there are many, many people on this board will be saying a prayer for you and your husband.

thank you

so very much--I really appreciate it

Rita

okeydokey

scan back--not good news

Hubby's scan came back--cancer is in jaw bone--colarbone--spread considerably--He called the cancer dr and persuaded him to give him more chemo--so he agreed--but said at the first sign of it making him sick it would be discontinued.Also he was perscribed some appitetite increasing meds--megestrol--it works wonderfully--He has eaten more in 4 days than he had for a month.He feels pretty well also.His strength is returning since he has been eating.They still think hospice is the way to go--but he said he wanted to do everything possible to fight it--and the dr understood that.I am worried.hopefully the chemo wont be bad for him.He has fought so very hard--He is still doing everything he can do--hasnt slowed down much.I so admire his outlook and his strength.I myself dont seem to have much.will keep this updated--thanks for listening

Rita

 

Has an appt today at radiation--had what he thought was an abcess--turned out it was the cancer coming out on jaw. the other dr said radiologost may give him a couple of radiations on it,but it is doubtfull because it may damage jaw more--will find out today

swopoe

okeydokey said:

scan back--not good news

Hubby's scan came back--cancer is in jaw bone--colarbone--spread considerably--He called the cancer dr and persuaded him to give him more chemo--so he agreed--but said at the first sign of it making him sick it would be discontinued.Also he was perscribed some appitetite increasing meds--megestrol--it works wonderfully--He has eaten more in 4 days than he had for a month.He feels pretty well also.His strength is returning since he has been eating.They still think hospice is the way to go--but he said he wanted to do everything possible to fight it--and the dr understood that.I am worried.hopefully the chemo wont be bad for him.He has fought so very hard--He is still doing everything he can do--hasnt slowed down much.I so admire his outlook and his strength.I myself dont seem to have much.will keep this updated--thanks for listening

Rita

 

Has an appt today at radiation--had what he thought was an abcess--turned out it was the cancer coming out on jaw. the other dr said radiologost may give him a couple of radiations on it,but it is doubtfull because it may damage jaw more--will find out today

I am sorry you didn’t get

I am sorry you didn’t get better news. I admire your hubby’s will and strength to keep fighting, and I am glad he is eating and feeling better. Sending my love and prayers To both of you.

wbcgaruss

Scans Not What You Would

Like them to be. Don't give up hope though and since your husband has such a fighter attitude just go all in with him and support him and do the best you can each day. The docs are watching him closely so you can be sure they will be of great help to you guys. Glad he's eating better that can be a huge help. You could still get hospice involved, the way I hear people discuss it they offer a lot of help at different stages and you are prepared no matter what happens. Stay strong-trust in God-keep us posted and the folks on here will help any way they can. Prayers your way, wishing you and your husband the best and God Bless.

Sabrina23

Well Differentiated Squamous Cell Carcinoma

I was diagnosed with tongue cancer well differentiated squamous cell tongue cancer carcinoma - how long do I have to live?  Can anyone tell me the survival rate in years - could this be curable?  I am scheduled for glossectomy and neck dissection  - will I need radiation? I am 57 years old female never have been sick in my life this came out of the blue I don't know how or why?  I am scared beyond what I am deal with and I feel hopelessness.  Please if anyone can help me I would be forever grateful

big G

Sabrina23 said:

Well Differentiated Squamous Cell Carcinoma

I was diagnosed with tongue cancer well differentiated squamous cell tongue cancer carcinoma - how long do I have to live?  Can anyone tell me the survival rate in years - could this be curable?  I am scheduled for glossectomy and neck dissection  - will I need radiation? I am 57 years old female never have been sick in my life this came out of the blue I don't know how or why?  I am scared beyond what I am deal with and I feel hopelessness.  Please if anyone can help me I would be forever grateful

new thread

Hey Sabrina start a new thread with your post I'm sure you will get plenty of responses.

okeydokey

update

My husband is dying now.He has fought such a couregous fight,Hospice is coming in evry day.his cancer has eaten through his jaw.and when he has anything to eat it is comimg through a hole in face.He,believe it or not is still getting out of bed,and coming to the table though he is so weak.He has fallen a couple of times,though luckily hasnt been hurt.He wants to live so bad and I am so devasted by this terrible disease.and feel so bad for him.I hadnt done an update for awhile so I will also post this with my original post.Hospice says his time is nearly up--I live in fear because they say the cancer is eating on main artery on neck and it could explode and he will bleed to death in minutes.I pray death comes in another way.They want him to come to stay at hospice house instead of home.He doesnt want to,so I am not going to ask him to do that.the nurse ask me if I was prepared for what could happen.I told her no but if it does happen I would deal with it someway for him to get to be home.anyway pray for him and also for me

Thanks

Rita

wbcgaruss

okeydokey said:

update

My husband is dying now.He has fought such a couregous fight,Hospice is coming in evry day.his cancer has eaten through his jaw.and when he has anything to eat it is comimg through a hole in face.He,believe it or not is still getting out of bed,and coming to the table though he is so weak.He has fallen a couple of times,though luckily hasnt been hurt.He wants to live so bad and I am so devasted by this terrible disease.and feel so bad for him.I hadnt done an update for awhile so I will also post this with my original post.Hospice says his time is nearly up--I live in fear because they say the cancer is eating on main artery on neck and it could explode and he will bleed to death in minutes.I pray death comes in another way.They want him to come to stay at hospice house instead of home.He doesnt want to,so I am not going to ask him to do that.the nurse ask me if I was prepared for what could happen.I told her no but if it does happen I would deal with it someway for him to get to be home.anyway pray for him and also for me

Thanks

Rita

Rita Such

Difficult Days you and your husband are going through my heart goes out to you and I will be praying for you and have you on my prayer list. Trust in the Lord and stay strong and you can and lean on the hospice folks they will be there for whatever you need. It is hard to come up with the right words at a time like this but know we are praying and thinking of your family. God Bless-Stay Strong-Praying for you.

 

https://www.whatchristianswanttoknow.com/17-inspirational-bible-verses-for-cancer-patients/