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

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

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

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

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 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 

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

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

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