Just need a place to vent...apologies in advance-UPDATE

jcortney

Well, after the reoccurrence, radical neck dissection, thyroid gone, numerous "things" in the lungs, three rounds of Carbo/Taxol/Eributux, tomorrow is finally the scan day.  Head to bowels and I must say, I'm more frightened than any time in the past 2 1/2 years.  Intellectually, I know that the "cocktail" probably did what it was supposed to do, but damn, it's going to be a long two days.

This regimen of chemo, while advertised by my MedOnc as 60% more tolerable than the previous (Cisplatin/5FU/Eributux), has been a nightmare.  The Eributux has produced continuous rashes and pustules, I have a low grade fever every night (which no one can figure out), had a bad bought with Thrush last week and Saturday night woke with chills that could have been mistaken for seizures that four blankets couldn't get to stop for almost an hour.  Add to all of this that the Endocrinologist can't seem to get my meds quite right, I'm eating at least 2500 calories a day and have lost 10 lbs and you can get a clue why I need to put this down somewhere.

So, thanks in advance for the well wishes and prayers, but I just really need to get this out.

Thanks for listening.

Joe

debbiejeanne

Joe, first of all you NEVER

Joe, first of all you NEVER have to apologize for venting or just "needing to get it out" here.  now, I'm so sorry for all the trouble you are having.  sometime it just seems like it never lets up.  i had a bout with the chills once that you describe and the med team really thought i may be have seziures b/c i was shaking so badly.  i had about 5 heated blankets on me at the time too and it took at least an hour to stop.  that is no joke to be that cold/chilled.  i'm glad it finally came under control.  sometimes it just takes a long time to get the meds right.  i hope they get them right before you lose any more weight.  i've heard thrush is no fun for sure.  add that to the other problems and you've really been thru it.  i'm so sorry for you.  we all understand the fear.  i hope you can keep busy so your mind has less time to wonder.  that's the hard part, staying busy while waiting for answers.  please know that we are here for you and we're all praying for very good results and that you feel much, much better soon. I hope all these extra problems leave you alone now and let you get back to living!  hang in there Joe, we're praying.

God bless you

dj

KB56

Scan

joe, I can only imagine how tough the past few weeks have been and I'm sure second time through is even tougher than the first.   I hope your scan comes out fantastic and you can start to heal again and get rid of the side effects.   

Sending all the positive energy I can muster your way.  When you need to vent or put it down in words, you do it here anytime you want.  Never an issue.  

Keith

 

wmc

Wow......

Do understand the need to get it out. You have been to hell and back. Now just where else can you go to just let it out and everyone really understands what you are saying and most have been there in one way or another. You might want to add milkshakes if you can tolerate them. They do add calories I think McDonalds Med. 16oz is 580 and the large is 770cal. I had to use them to get weight back. I also eat 5 cans of cream of chicken soup 300 cal each can and took in between 2800 ~ 3200 cal to stop the loss and start gaining back. I dropped down to 126lb. at time of surgery, was around 150 the six months before. 

Will keep sending good vibs and prayers always Joe. May your tomorrow be better than today.

Bill

donfoo

the wait...

Hey Joe,

Always a pain to sit and wait but it is really close and you been in this spot enough to know the drill. Sorry to hear about the side effects but Erbitux is known to cause the skin issues. Wish you well on the scan. If I may ask, it is not clear when you finished the chemo? Is the scan being done as you just finished or still doing chemo?

Take care,

Don

CivilMatt

Mighty Joe

Joe,

They made that cocktail special for you.  It sounds like it packs quite a punch, I am sorry about that.

I ran a a104 fever once and was freezing so I went outside on a 106deg day and shivered.

The Erbitux can be nasty stuff, I hope it runs its course soon.

T&P,

Matt

Guzzle

CivilMatt said:

Mighty Joe

Joe,

They made that cocktail special for you.  It sounds like it packs quite a punch, I am sorry about that.

I ran a a104 fever once and was freezing so I went outside on a 106deg day and shivered.

The Erbitux can be nasty stuff, I hope it runs its course soon.

T&P,

Matt

Good Luck

Vent away. Sorry your going through this Joe. Good luck mate.

jcortney

donfoo said:

the wait...

Hey Joe,

Always a pain to sit and wait but it is really close and you been in this spot enough to know the drill. Sorry to hear about the side effects but Erbitux is known to cause the skin issues. Wish you well on the scan. If I may ask, it is not clear when you finished the chemo? Is the scan being done as you just finished or still doing chemo?

Take care,

Don

The three drug cocktail was

The three drug cocktail was finished a week ago.  We will now, for the next 10 weeks, continue with Eributux/Taxol weekly.  No rest for the weary

J.

Duggie88

Joe

I don't see it as venting. I see it as a stopping by to refuel allowing you to push forward. I haven't been on much lately but there are many on here that can sit in the driver seat and help you get down the road.

Fight on JOE.............we are all in your corner

      Jeff

TracyLynn72

Let it out!

This is a family.  Come here and vent, cry, scream, shout or anything else that you need to! ( and never, ever apologize!!)   My prayers are with you.  I'm so sorry for all that you've had to go through.

cureitall66

Fever and chills....

Hi Joe,

Hope you get to feeling better soon. Although the "cocktail" in itself is probably hard on you and may be contributing to the fever/chills, I'm wondering about the thrush. Since thrush is an infection and as we know infections can cause fever and chills because our body's immune system is trying to fight the infection. I'm no doctor, but that sounds likely to me. WHERE'S PAT???

 

I know it's got to be tough waiting these couple days for this scan, but nothing I saw will speed that time up for you. I pray that you have some peace from anxiety while waiting. Keeping our minds busy on other physical things can sometimes help from those crazy mental thoughts. Keep us posted.

Take Care,

~C

hwt

cureitall66 said:

Fever and chills....

Hi Joe,

Hope you get to feeling better soon. Although the "cocktail" in itself is probably hard on you and may be contributing to the fever/chills, I'm wondering about the thrush. Since thrush is an infection and as we know infections can cause fever and chills because our body's immune system is trying to fight the infection. I'm no doctor, but that sounds likely to me. WHERE'S PAT???

 

I know it's got to be tough waiting these couple days for this scan, but nothing I saw will speed that time up for you. I pray that you have some peace from anxiety while waiting. Keeping our minds busy on other physical things can sometimes help from those crazy mental thoughts. Keep us posted.

Take Care,

~C

Joe

Been thinking of you so was happy to see your post, just wish the first course had not been so hard on you. In 2012 Cisplatin was horrible on me. in 2014, I had the taxol/erbitux...no carbo. I found the taxol/erbitux much easier than the the Cispaltin so my hope is now that they are narrowing you down to just the taxol/erbitux, things will get better. My PET following was clear with another scheduled in September. Know that you have done everything the experts have recommended and the handwritting is on the wall as far as results, all the worry will not change them. I know easier said than done. Am hoping a couple of tabs of diflucan has cleared your thrush, that can be very painful. Hated to hear what a rough go of it this has been for you. Keep up with the nutrition and hydration, they can be key.

Keeping you in prayer.

Candi 

wolfen

cureitall66 said:

Fever and chills....

Hi Joe,

Hope you get to feeling better soon. Although the "cocktail" in itself is probably hard on you and may be contributing to the fever/chills, I'm wondering about the thrush. Since thrush is an infection and as we know infections can cause fever and chills because our body's immune system is trying to fight the infection. I'm no doctor, but that sounds likely to me. WHERE'S PAT???

 

I know it's got to be tough waiting these couple days for this scan, but nothing I saw will speed that time up for you. I pray that you have some peace from anxiety while waiting. Keeping our minds busy on other physical things can sometimes help from those crazy mental thoughts. Keep us posted.

Take Care,

~C

Joe

What better place to vent & even have a good cry. I can no way compare my problems to yours or our friends here, but don't you just get tired of Krap happening.

Thrush is not your friend! After we buried my Debbie on Aug. 2, I planned to return to Arizona on Aug. 13. Instead I sit in the hospital in Kentucky with viral pneumonia with Thrush as a bonus. I know it is a common side effect of chemo, steroids, & antibiotics. YUCH!

Hope all goes well with the scan & meds can get straightened out. You need a break!

Luv,

Wolfen

longtermsurvivor

cureitall66 said:

Fever and chills....

Hi Joe,

Hope you get to feeling better soon. Although the "cocktail" in itself is probably hard on you and may be contributing to the fever/chills, I'm wondering about the thrush. Since thrush is an infection and as we know infections can cause fever and chills because our body's immune system is trying to fight the infection. I'm no doctor, but that sounds likely to me. WHERE'S PAT???

 

I know it's got to be tough waiting these couple days for this scan, but nothing I saw will speed that time up for you. I pray that you have some peace from anxiety while waiting. Keeping our minds busy on other physical things can sometimes help from those crazy mental thoughts. Keep us posted.

Take Care,

~C

Pat's here, but doesn't have a constructive thing

to say:)  I'm kind of in the same boat as Joe, just further down the river.  I was started on Taxotere/Carboplatin/Erbitux with my recurrance, but on a three week cycle.  Of course, I'm allergic  to the Erbitux, so even this exposure about tore my face clear off.   My three month scan showed dramatic reduction, but my sixth cycle scan showed progression, and new stuff in the lungs, of course.

So I was in the chair all day yesterday, getting my first cycle of cisplatin, and am on a 5FU pump for the next four days.  Just sitting here in the hotel not feeling the best, lol.  My circumstances don't permit a lot of choice for chemo, because most of the backup protocals still rely on erbitux, and I'm done with that drug.

Anyway, fevers in us guys can be very elusive.   Lots of things can cause them.  Some of them are serious, some are not.  Best we can do is just keep plugging along, being good patients which includes carefully watching ourselves for new, important symptoms.  And find something good about every day.  Yesterday I finished a good book.  Today, I don't know yet, still looking.

 

 

best to you all

 

pat

Goyca

Joe I'm sorry u r going

Joe I'm sorry u r going through this. Please let it out whenever u feel like it. Hope the scans come back good.

 

prayers sent ur way.

Goyca.

Jeff2159

Same Boat Here Joe

Was on Carbo/5-FU with rads Dec-Jan 2013 and now have been Erbitux every tues, since late Jan2014 and now today I have a pump for  my 3rd dose of carbo/5-FU. May have a fourth but will do PET scan most likely in 2 weeks to see if I'm stable for mets to lung and bones. I have my thyroid but rads did a number on me so I take a daily pill. Go ahead and vent but don't be consumed as there is not much you can do at this point until you get results. Go about your life and make sure you have fun. Not sure on low grade fever and chills. Yes the erbitux does produce a bad acne rash, never did i have so many "zits" in my younger days. I have ruined many a shirt and pillow case. I now only where darker colored shirts as they hide the blood stains. Someone mentioned milkshakes-- not sure where you are but in southern cal we have in and out burger and jack-in the box. Both have killer shakes and I usually get one a day and sometimes I say screw it and get another later instead of having ensure. Well good luck as I'm going to have one of my last meals as the carbo and 5-fu lose my appetite and I get nauseous too.

 

Jeff

Grandmax4

Praying for you~~

Joe, stay strong!!

 

jcortney

UPDATE

Ok folks, here's the data... and as always, some good some bad and some just weird.

 

First, head and neck clear-that was expected

Next, the abdomen was also clear.

Next, the lungs.  All nodules are smaller.  Some only slightly, some dramatic.  The ones that were only slightly smaller (4-6 mm) were call "most likely infections.  Two, that were of the most concern to the "Tumor Board" that were 2 cm plus have resolved completely.

The bad news is I"ve developed four blood clots in the lungs and they immediately put me on blood thinners.  Not good news at all.  They either came from the legs (I've been a couch potato for the last two months) or from the neck surgery is up for debate, but really who cares?  I get to have a time bomb in my chest.

The weird is I've developed a very slight pericardial effusion (fluid around the heart).  

So, the Doc is backing off on the dosage of the Taxol to eliminate some of the side effects (neuropathy, lethargy and generally feeling like crap) and we'll take a look again in three months.

Thanks for all the support.

Joe

debbiejeanne

jcortney said:

UPDATE

Ok folks, here's the data... and as always, some good some bad and some just weird.

 

First, head and neck clear-that was expected

Next, the abdomen was also clear.

Next, the lungs.  All nodules are smaller.  Some only slightly, some dramatic.  The ones that were only slightly smaller (4-6 mm) were call "most likely infections.  Two, that were of the most concern to the "Tumor Board" that were 2 cm plus have resolved completely.

The bad news is I"ve developed four blood clots in the lungs and they immediately put me on blood thinners.  Not good news at all.  They either came from the legs (I've been a couch potato for the last two months) or from the neck surgery is up for debate, but really who cares?  I get to have a time bomb in my chest.

The weird is I've developed a very slight pericardial effusion (fluid around the heart).  

So, the Doc is backing off on the dosage of the Taxol to eliminate some of the side effects (neuropathy, lethargy and generally feeling like crap) and we'll take a look again in three months.

Thanks for all the support.

Joe

well, very happy about the

well, very happy about the good news but the bad certainly puts a damper on it.  i don't even know what to say, Joe, except i'm sorry you and your wife are facing all of this.  it just breaks my heart.  i will keep you both in my thoughts and prayes and definitely be praying that the blood thinners do thier job.

stay strong, friend,

dj

donfoo

jcortney said:

UPDATE

Ok folks, here's the data... and as always, some good some bad and some just weird.

 

First, head and neck clear-that was expected

Next, the abdomen was also clear.

Next, the lungs.  All nodules are smaller.  Some only slightly, some dramatic.  The ones that were only slightly smaller (4-6 mm) were call "most likely infections.  Two, that were of the most concern to the "Tumor Board" that were 2 cm plus have resolved completely.

The bad news is I"ve developed four blood clots in the lungs and they immediately put me on blood thinners.  Not good news at all.  They either came from the legs (I've been a couch potato for the last two months) or from the neck surgery is up for debate, but really who cares?  I get to have a time bomb in my chest.

The weird is I've developed a very slight pericardial effusion (fluid around the heart).  

So, the Doc is backing off on the dosage of the Taxol to eliminate some of the side effects (neuropathy, lethargy and generally feeling like crap) and we'll take a look again in three months.

Thanks for all the support.

Joe

uggg...

Hey Joe,

I appreciate you keeping us updated as many here do think about our fellow survivors and the various continued skirmishes and battles some encounter down the road.

Great news the chemo worked on this cancer as it offers good news about a way to control the beast. Clots?? A well known and treated problem like this should be uplifiting I hope. There is a lot of experience and therapies and treatments to knock this down. Bummer now but hopefully there are solid plans to beat this one too.

Wishing you the best outcomes. don

jcortney

donfoo said:

uggg...

Hey Joe,

I appreciate you keeping us updated as many here do think about our fellow survivors and the various continued skirmishes and battles some encounter down the road.

Great news the chemo worked on this cancer as it offers good news about a way to control the beast. Clots?? A well known and treated problem like this should be uplifiting I hope. There is a lot of experience and therapies and treatments to knock this down. Bummer now but hopefully there are solid plans to beat this one too.

Wishing you the best outcomes. don

Thanks Don

My Doc decided to not to give me the Taxol last Wednesday and the difference in how I feel is astounding.  Fever that I had daily is gone, lack of energy and desire MUCH improved, appetite greatly enhanced.  He's dropping me back to 50% dosage this week so we'll see what happens.

Hope you are well,

Joe