Husband diagnosed with SCC head and neck

MMDowns

Anyone ever randomly get sick

Anyone ever randomly get sick without feeling nauseated? That happened to my husband today. After he received fluids from the Clinic. Wondering if his dry mouth gagged him. His gag reflex is so sensitive now.  Little worried since he hasn't vomited for two weeks And has been eating.  He told me that he wasn't nauseous in the slightest when this happened.  

MMDowns

Just checking in. We are

Just checking in. We are enjoying our last day before the second dose of chemo tomorrow. Still nervous about his labs they took on Friday. Still don't know if chemo will be given tomorrow or his creatine levels will still be too low. My husband tols me that he was talking to another patient last week and he told my husband "cancer teaches you to be very patient". If that's not the truth.  Last time they gave him 250mg of Cisplatin. His oncologist told us that she will most likely have to adjust the dosage. My concern is she doesn't and his kidneys will be hit again. I keep telling myself surely she will take that all into consideration. I'm gettkng nervous about the next few weeks ahead of us. Tomorrow is the beginning of the 4th week. Which is incredible to type because I feel that we just started and by the middle of this week we will have less treatment time. But I know this is when it starts to get tough. His throat is starting to hurt now. His taste buds are shot. Ice cream and smoothies are the only things that taste good to him. He does try and eat other items but after awhile it just starts to be too much. We will have to start using the PEG very soon, I think.   I think as his wife and caretaker I Am scared because of the unknown.  What can I do? How can I help? What happens when I am not there? I still have to work.  my incredible parents have already told us that they will be here everyday while I am at work. Thank God for that. My husband still plans on working this week and possibly next week. we did agree that if he makes it to the fifth week while teaching that after that he was done. No teaching after that. resting and getting through the last 2 weeks of treatment and beginningthe healing process (which I have read is equally hard) is his job.   I have to just keep telling myself that we have come this far. Day by day. So we can keep moving on. The end sight is getting closer and closer. 

swopoe

Keep your eyes on the prize.

Keep your eyes on the prize. He will be ok...you are getting close to the end. Your parents will be such a blessing and take good care of him when you can't be home to do so. I am so happy to hear they will be there. I am sorry the ride has been rough, but it is all worth it. Use the PEG. He will feel better if he gets more nutrition in him...it will give him more energy to get through the day. Trust me. Keeping you in my thoughts...you have this!

MMDowns

swopoe said:

Keep your eyes on the prize.

Keep your eyes on the prize. He will be ok...you are getting close to the end. Your parents will be such a blessing and take good care of him when you can't be home to do so. I am so happy to hear they will be there. I am sorry the ride has been rough, but it is all worth it. Use the PEG. He will feel better if he gets more nutrition in him...it will give him more energy to get through the day. Trust me. Keeping you in my thoughts...you have this!

Thank you! You don't know how

Thank you! You don't know how much your comment meant to me.  It's been a pretty tough day for both of us, more emotionally than anything.  After the meeting, which the oncologist basically said that my husband will be given the same amount of chemo knowing what it does to the kidneys, with an extra day of fluids, which I totally disagree on.  But, I am not the dr.   We found out that my husband couldn't even do the chemo or rads today because the white cell count was down.  So he has to get another sub for  school tomorrow and we have to start all over again.  Which prolongs the treatment schedule.  We just want to be done with it all.  I am so over the chemo and the oncologist.  I know it's necessary.  I do.   But I loathe it.   I need a quick attitude adjustment.  It's just been a day.  Hard to be positive all the time.  Reading your comment has helped.  We are lucky that my parents are close and are so amazingly helpful.  We're using the PEG and hoping we can get this show on the road tomorrow.  We are close to the end! 

swopoe

MMDowns said:

Thank you! You don't know how

Thank you! You don't know how much your comment meant to me.  It's been a pretty tough day for both of us, more emotionally than anything.  After the meeting, which the oncologist basically said that my husband will be given the same amount of chemo knowing what it does to the kidneys, with an extra day of fluids, which I totally disagree on.  But, I am not the dr.   We found out that my husband couldn't even do the chemo or rads today because the white cell count was down.  So he has to get another sub for  school tomorrow and we have to start all over again.  Which prolongs the treatment schedule.  We just want to be done with it all.  I am so over the chemo and the oncologist.  I know it's necessary.  I do.   But I loathe it.   I need a quick attitude adjustment.  It's just been a day.  Hard to be positive all the time.  Reading your comment has helped.  We are lucky that my parents are close and are so amazingly helpful.  We're using the PEG and hoping we can get this show on the road tomorrow.  We are close to the end! 

The hydration will help. My

The hydration will help. My husband had 2L of hydration in the chemo ward twice a week and then he had to be sure to get something like 64 oz of water in his PEG each day. The hydration is so important with cisplatin. And also, we were told it was rare to never have to skip a chemo day. My husband never had to skip and his docs were seriously impressed. Tomorrow is a new day. Get some good sleep and be thankful for tomorrow!

MMDowns

swopoe said:

The hydration will help. My

The hydration will help. My husband had 2L of hydration in the chemo ward twice a week and then he had to be sure to get something like 64 oz of water in his PEG each day. The hydration is so important with cisplatin. And also, we were told it was rare to never have to skip a chemo day. My husband never had to skip and his docs were seriously impressed. Tomorrow is a new day. Get some good sleep and be thankful for tomorrow!

So he's back at the clinic

So he's back at the clinic and just finished labs.  We are thinking positive thoughts and hoping he can get back on track with his treatments today.  His creatine level was high after they took labs and we have been pushing fluids like mad via mouth and PEG.  I'm not sure what to think about that.  I am so hopeful that we can still do chemo, even at a lower dosage (If that's an option).  He's had fluids every day last week, and three days the week before via IV.  I don't know if the Cisplatin was just too strong.  The oncologist was initially going to give him the same dosage yesterday because the fluids helped but then read the labs from yesterday morning and said the white blood count is down.  Then had her nurse call later that day to tell us his creatine levels were elevated.  It's such a roller coaster.  We just want to keep on with the treatments and be done.  So here's to a new day today!

MMDowns

No treatment again.  We are

No treatment again.  We are frustrated and concerned.  They told us his white cell count is still low, that he's dehydrated, and his creatine levels are the same as yesterday.  So he has today and tomorrow to up the white cell count so he can at least do the rads.  No chemo at all this week, they have already determined.  The radiation oncologist told my husband that this is a balancing game and that it is OK.  That he feels that he should be able to get the rads on Thursday.  Someone please tell me that this is not totally uncommon.  

donfoo

MMDowns said:

No treatment again.  We are

No treatment again.  We are frustrated and concerned.  They told us his white cell count is still low, that he's dehydrated, and his creatine levels are the same as yesterday.  So he has today and tomorrow to up the white cell count so he can at least do the rads.  No chemo at all this week, they have already determined.  The radiation oncologist told my husband that this is a balancing game and that it is OK.  That he feels that he should be able to get the rads on Thursday.  Someone please tell me that this is not totally uncommon.  

one day at a time

"Someone please tell me that this is not totally uncommon."  

Hi, Just catching up on your story. Hang in there, you may be in a short holding pattern, it happens. Not sure if you've heard the comments that there is no common, every patient brings a unique set of factors, each cancer is unique, each treatment plan is unique, every experience is unique, and every recovery is unique. There are common treatments and conditions and general expectations but no doctor will ever offer any guarantees. 

So much hurry and wait. It does test ones patience like nothing else. And the unknown, accept what each day offers and do your best telling yourself each day means one day closer to end of treatment and one day closer to feeling better and back to good health and of course the "new normal". Good luck

MMDowns

donfoo said:

one day at a time

"Someone please tell me that this is not totally uncommon."  

Hi, Just catching up on your story. Hang in there, you may be in a short holding pattern, it happens. Not sure if you've heard the comments that there is no common, every patient brings a unique set of factors, each cancer is unique, each treatment plan is unique, every experience is unique, and every recovery is unique. There are common treatments and conditions and general expectations but no doctor will ever offer any guarantees. 

So much hurry and wait. It does test ones patience like nothing else. And the unknown, accept what each day offers and do your best telling yourself each day means one day closer to end of treatment and one day closer to feeling better and back to good health and of course the "new normal". Good luck

You are right.  There is no

You are right.  There is no "common" with cancer, is there?  This journey challenges control freaks like me in ways that I will NEVER forget.  I immediately panic and go to the dark side.  It's only been two days and he is eating and drinking and drinking and drinking.  I have high hopes and will pray that at least rads treatments begin again on Thursday.   That's all I can control.  Holding onto hope and prayer.  I will continue to take it day by day.  Thank you for your words of encouragement. 

Joy123

Hello.  I just finished

Hello.  I just finished radiation and cisplatin chemo 3 weeks ago for scc of tongue and lymph node. I have a peg tube and a port. My mouth is tore up from the radiation so I'm not able to swallow anything yet. The mucous is finally slowing down. It feels like I have a big lump in my throat. The ringing in my ears started a couple of weeks ago. They gave me anti nausea meds with chemo so that wasn't a problem. I happened to find a swollen lump under my jaw then they discovered the cancer on my tongue. It's been rough but I'm getting through this and so will you. They said by May I should be able to go back to work. Hopefully I'll be eating and drinking by then. The chemo didn't bother me as much as the radiation. I'm using baking soda rinses and magic mouthwash for my sore mouth. If anyone has any more suggestions for healing the mouth that would be most helpful. God Bless you all. 

MMDowns

Joy123 said:

Hello.  I just finished

Hello.  I just finished radiation and cisplatin chemo 3 weeks ago for scc of tongue and lymph node. I have a peg tube and a port. My mouth is tore up from the radiation so I'm not able to swallow anything yet. The mucous is finally slowing down. It feels like I have a big lump in my throat. The ringing in my ears started a couple of weeks ago. They gave me anti nausea meds with chemo so that wasn't a problem. I happened to find a swollen lump under my jaw then they discovered the cancer on my tongue. It's been rough but I'm getting through this and so will you. They said by May I should be able to go back to work. Hopefully I'll be eating and drinking by then. The chemo didn't bother me as much as the radiation. I'm using baking soda rinses and magic mouthwash for my sore mouth. If anyone has any more suggestions for healing the mouth that would be most helpful. God Bless you all. 

Congratulations on fininshing

Congratulations on fininshing the treatment!  That's quite an accomplishment.   I am also glad that you didn't have issues with the chemo.  I know that a lot others, including my husband, have not been so fortunate.   His nausea wasn't so bad, he did get sick a few times, but it could've been worse.  Right now we are hoping that he can get radiation treatment today.  He hasn't been able to do treatments this week because of low white cell count and his creatinine levels were elevated.  So we keep pushing fluids and boost and ensure and he is still able to eat some soft foods.  We are about three weeks away from the end of treatments.  It's so amazing to even type that!  I know the next 3 weeks are going to be tough but 3 weeks is 3 weeks!  We are ready to start the healing process.  I hope that every day you start feeling better & better.  Good luck!

MMDowns

Today is the day! Positive

Today is the day! Positive thoughts that my husband can at least get back on schedule with the rads treatment!  We will find out this afternoon!  It will happen. I have faith. 

MMDowns

So we are back on track with

So we are back on track with the radiation!  Never did I think that I would be happy about a cancer treatment.  But, I am!  However, his creatinin levels are still wonky and all over the place.   So much so, that his oncologist nurse called me to talk to me about fluids everyday for my husband and how concerned they were.  Chemo is really not looking like a viable option at this point.  We have been assured by both the radiation oncologist and the oncologist that if my husband cannot get chemo that his chances of achieving NED are still very good.  We are going to try one last time on Monday and after that we need to meet with the oncologist to discuss what needs to happen next.  One day at a time.  Right now we are enjoying our son being home on spring break (he's been amazing this week) and my aunt is also in town.  She's a nurse so I have been yammering her ear off about all of this.  Her husband also had cancer and she took care of him until his passing two years ago.  We are blessed and lucky to have an amazing family.  And it's Friday!  I plan on enjoying every second of this weekend with my family.  I hope you all have a great weekend as well!

MMDowns

Hey All. any help would be

Hey All. any help would be appreciated.  Tomorrow my husband goes back to the clinic to see if he can receive the second dose of Cisplatin. This was supposed to happen last week.  I know I've mentioned severa times that his kidneys are really taking a beating from the chemo. He's been pushing fluids like crazy at home and even went in on Friday for 2L of fluids. The oncology nurse called me on Thursday to discuss how concerned they were about his creatinine levels. They keep fluctuating even with fluids given via IV. So we are at a crossroads. When do we say that chemo isn't in the cards for us? The nurse even said "you don't want to end up with kidney dialysis In your future". Has ANYONE in this forum had to forgo the chemo due to  health issues and still achieved NED? I need some help. We need some help.  we want the best outcome with out irreversible damage to his kidneys. 

corleone

MMDowns said:

Hey All. any help would be

Hey All. any help would be appreciated.  Tomorrow my husband goes back to the clinic to see if he can receive the second dose of Cisplatin. This was supposed to happen last week.  I know I've mentioned severa times that his kidneys are really taking a beating from the chemo. He's been pushing fluids like crazy at home and even went in on Friday for 2L of fluids. The oncology nurse called me on Thursday to discuss how concerned they were about his creatinine levels. They keep fluctuating even with fluids given via IV. So we are at a crossroads. When do we say that chemo isn't in the cards for us? The nurse even said "you don't want to end up with kidney dialysis In your future". Has ANYONE in this forum had to forgo the chemo due to  health issues and still achieved NED? I need some help. We need some help.  we want the best outcome with out irreversible damage to his kidneys. 

Carboplatin

It causes less kidney damage, hearing loss, nausea and vomiting and peripheral nerve damage (manifested by muscle weakness and numbness or tingling). Unfortunately, it does have more bone marrow toxicity than cisplatin.

I had to switch from cis to carboplatin due to hearing loss. It has been 4.5 years since the last treatment.

MMDowns

corleone said:

Carboplatin

It causes less kidney damage, hearing loss, nausea and vomiting and peripheral nerve damage (manifested by muscle weakness and numbness or tingling). Unfortunately, it does have more bone marrow toxicity than cisplatin.

I had to switch from cis to carboplatin due to hearing loss. It has been 4.5 years since the last treatment.

I have heard of carboplatin.

I have heard of carboplatin.  I feel like our oncologist only deals with cisplatin.  She's never mentioned carboplatin and told us on our first meeting that she really only uses cisplat.  She did mention that she has on occasion used Erbitux (sp?) but she was not as comfortable using it.  I'm scared, bottom line.  There are two sides to our decision.  We have been told that if we cannot do the chemo that his chances are still very good at achieving remission.  But, at the same time we have also been told that the chemo aids the radiation.  He meets with the dr in 30 min.  They'll run labs before they do anything.  I just want us to make the best decision for my husband.   

MMDowns

So... he's getting chemo and

So... he's getting chemo and I am not sure how I feel about it.  Yes, I want the cancer to be gone. Absolutely. But, I am so terrified that it's ruining his kidneys. Of course the dr. said that won't happen and "we will monitor him closely" and all that jazz... but I have never felt so unsure about a decision in my life.  And ultimately it's not my decision.  It's his. He made the decision to go ahead this morning and do it.  I pray that it was the right one.  I have all of these emotions and a lot of what I feel is distrust in the oncoclogist.  I know they won't intentionally harm my husband but at the same time I do sometimes feel that their agenda is so very medical and they miss the human side.  I don't know, I'm not a dr.   I am sure some of this is exhaustion.  He was up choking on the wonderful mucus that is now accumulating for about 10-15 min.  I'm feeling really down today.  Desperate for the end of this.  Scared of the unknown for the next month or so.  I'm tired .  Not a good day today.

MMDowns

Just an update; My husband is

Just an update; My husband is doing alright.  We both goofed up royally and that caused my husband to run to the bathroom. Whoops!  Note to self;  he MUST eat something before he takes the Dexamethasone.  DUH!! This is not our first rodeo with the chemo treatments.  He had a great day yesterday and was even able to join the tennis team for a big rivarly match (we won!) but was utterly exhausted by the time he came home.  Had not had anything to "eat" (drink) since 5.  Not good.  So now we know better.  He is OK today.  In for fluids and a creatinine check.  Yesterday we were told that his tumor is still shrinking and the dr was very pleased at the condition of his throat and mouth.  Little bit of thrush but there are meds for that, of course  Another day in the books and this one is halfway over.  Blessed and lucky...and tired.