J-tube, now my dad is too sick!

LivingFaith

I pretty much defeated in my efforts to help my dad. He finally agreed to the j-tube and was suppose to get it tomorrow. Not anymore.

It has been a week, quoting my dad here "where I feel I've been kicked in the $#%*". Monday was suppose to be chemo day, didn't happen, dad is too sick way too anemic. Dr orders a CAT scan for Tuesday as he thinks the chemo wasn't working anyway. My dad's tumor has grown like crazy in the 4 weeks. He now has mets to the lungs and 2 more hot spots on his liver. That was kick #1

The options aren't good. Do nothing and go home and die in 3 months or wait to see if your blood count goes up and try another chemo but that will probably not work and kill you because of your weakend state. Kick #2

Okay, we can accept some of that but we still wanted the J-tube because my dad is so dehydrated and has been vomitting violently 4-5 times a day. Surgeon can't do the j-tube because he can't fit the scope down because of the tumor. Opening him up is not really an option and not worth the risk any way. Kick #3.

We found out the vomitting is from the cancer bleeding. He throws up huge amounts of brown nasty liquid over and over even if he has not had anything by mouth all day. All the zofran in the world isn't going to stop it. It seems the beast is now tangled up and wrecking havoc with anything it's way. Kick #4

We are going to look into some radiation to see if it may help stop some of the bleeding and then stop some of the violient painful throwing up. It will not cure him or maybe not even give him more time. We are all about making dad as comfortable as possible and wretching your guts up 5 times a day is not quality of life.

Where do we go from here? No matter how fast you run, EC seems to always catch up. Damn the Beast!

Deb

dwhite0002

some ideas
can they place the tube through radiology? If not, the surgery to put it in is very small....in and out....

I'd say get the tube in any way you can and do it soon.

By the way, I have had multiple tubes off and on for 4 years.

I will pray for you and your Dad!

-david
Hillsboro, OH

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Pghmomma

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Deb
I am so sorry to hear this. This beast does in deed suck. It always feel like no matter how hard you try something always goes wrong. Your family is in my thoughts. I hope he can get some relief soon.

Tina

stepmj

Been there
Hi Deb -
My heart goes out to you - reading your post was like reading a page from my experience with my Dad.

My Dad was kicked by the same 4 things. Dad became too weak for chemo about the time it quit working and he was (in his words) weak as water. He tried IV nutrition since a j-tube was not an option but the TPN (iv nutrition) made him so sick he requested it be removed after 10 days - he did not gain any weight on it. You could check your doctor’s opinion is on TPN- may be an option for your Dad and his experience might be good (everyone reacts differently!)

The vomiting ended up stopping on its own for my Dad after about 2 weeks - who knows why. He was eventually able to eat and drink again and Zofran became effective again - we were so thankful - he actually regained a little strength and felt as good as could be expected. He didn't eat big meals but was able to put down apple sauce, pudding, macaroni salad, and, of all things, Taco Bell soft tacos. I got him the flavored vitamin waters and he really like them - at one point was drinking 3 a day - quite an accomplishment. However until your Dad can drink again I recommend getting IV hydration - he will feel so much better.

You're right - it is very difficult to stay ahead of EC but thanks to this board more folks can stay ahead longer.
I hope the radiation works to relieve the vomiting - keep us posted.

MaryJo

LivingFaith

stepmj said:

Been there
Hi Deb -
My heart goes out to you - reading your post was like reading a page from my experience with my Dad.

My Dad was kicked by the same 4 things. Dad became too weak for chemo about the time it quit working and he was (in his words) weak as water. He tried IV nutrition since a j-tube was not an option but the TPN (iv nutrition) made him so sick he requested it be removed after 10 days - he did not gain any weight on it. You could check your doctor’s opinion is on TPN- may be an option for your Dad and his experience might be good (everyone reacts differently!)

The vomiting ended up stopping on its own for my Dad after about 2 weeks - who knows why. He was eventually able to eat and drink again and Zofran became effective again - we were so thankful - he actually regained a little strength and felt as good as could be expected. He didn't eat big meals but was able to put down apple sauce, pudding, macaroni salad, and, of all things, Taco Bell soft tacos. I got him the flavored vitamin waters and he really like them - at one point was drinking 3 a day - quite an accomplishment. However until your Dad can drink again I recommend getting IV hydration - he will feel so much better.

You're right - it is very difficult to stay ahead of EC but thanks to this board more folks can stay ahead longer.
I hope the radiation works to relieve the vomiting - keep us posted.

MaryJo

Thanks
Thanks for the ideas and support. I am making a list of questions for his doctors.

sal314

So Sorry Deb
It so SUCKS! Just no other way to put it! I will be praying for you and your family and that the doctors will figure out (fast) how to help your dad get and keep liquids down, stop the bleeding and get him stable.

I also agree with calling Hospice. Like Sherri said, it doesn't mean you're giving up! The number one mistake people make with Hopsice care is that they don't call sooner!! They are so knowledgeable and know so many little "tricks" to help make people more comfortable.

Hang in there!!

Sally

stepmj

sal314 said:

So Sorry Deb
It so SUCKS! Just no other way to put it! I will be praying for you and your family and that the doctors will figure out (fast) how to help your dad get and keep liquids down, stop the bleeding and get him stable.

I also agree with calling Hospice. Like Sherri said, it doesn't mean you're giving up! The number one mistake people make with Hopsice care is that they don't call sooner!! They are so knowledgeable and know so many little "tricks" to help make people more comfortable.

Hang in there!!

Sally

Home Nurses
Another good thing about hospice is the nurses come to your home - this was perhaps the best benefit for my Dad. While he was so sick and weak - getting out and going TO the doctor was a task that was nearly impossible.

MaryJo