Hello Malbers,
I'm so sorry your Dad is going thru this. I expect that the cough is due to the mets in his lung. With me not being a doctor, but being prior medical, I can say that since the doctor had prescribed codeine before - that perhaps some cough syrup with dextropomorphan like Robitussin DM, would be good. For sure he needs to drink a LOT of water to help keep the coug 'moist' and easier on him when he does cough. Perhaps even a humidifier would be comforting.
I'm hoping he has someone there with him that can make sure he's eating ok. If he doesn't want full meals, at least if he eats a little bit at a time, a few times a day - it would be very good for him. For sleeping - ask him to try putting a pillow between his knees - I have a bad back and notice that when I do that it also takes pressure off of my kidney area. Maybe that would give him a little relief and some much needed sleep. Best wishes and hugzz ~Sandy~

Thank you Sandy, My dad lives with my brother who is not in the greatest of health either. Its really hard being so far and not seeing him often enough. If i was more pushy and made him go to the doc last year maybe there would be more options. The weight loss doesnt isnt helping him any as he is so bony and the tumor is so large any way he lays its pushing on it. He has been drinking ensure with extra calories and I bought him a milkshake maker. He is trying hard to eat small high calorie meals often.

How often does one go for CT scans?? How long before an improvement on sutent??

I'll have to let others answer about Sutent treatment and all that it entails. My RCC was small and I only needed a partial kidney removal and then follow-up therafter for 5 years.

As far as you thinking that you should have perhaps been more "pushy" last year, I'd like to say that from studies going on, the results are that the tumors only grow about 0.5cm-1.2cm as results from worldwide studies. Even at the fastest growth rate, you pushing him last year probably wouldn't have made a lot of difference. Kidney cancer is considered a 'silent cancer' because there are no noticible symptoms for so long and it is normally advanced before any symptoms start. Most of the tumors that are caught early were by coincidence, like doing an ultrasound or CT for something else and spotting it. Your Dad may not have been concerned about his weight loss and if he didn't have any other symptoms, didn't think a doctor's appt was necessary. Odds are that his tumor (s) started years ago. Just wanted you to know that. There are members of this group who are familiar with Sutent and I hope they can answer your questions. There is also another wonderful group with about 1,400 members at http://cancerguide.org/kofaq/
Take care! ~Sandy~

Oops..sorry...those growth rates I listed are per YEAR.
~Sandy~

Hi Malbers,

I don't really have any advice but did just want to say how sorry I am that your dad is going thru this. Your family is in my thoughts and prayers.

Nicki

Thank you for the info and the kind words Sandy...I just feel that something should have been done sooner. Like I could have done more, guilty almost.....the mom in me I guess..

Many thanks Nicki =)

you may want to go to this site which is heavily into discussions of RCC treatment
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=KIDNEY-ONC
and here http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=PAPILLARY-RCC
which is specifically for papillary RCC but also has heavy intrerchange on treatments like Sutent. You can subscribe for free and roam the entries. I prefer the papillary site because that is what my tumor was (as in they "got it all" - I hope). The NIH in Bethesda MD is considered the gold standard of RCC treatment although many other "name" centers are suggested. As to pallative treatment the first line is your doc and to continue asking questions and for referrals for second and third opinions. Every case is different. keep at it and be well, Rich

I tried the web site suggested......signed up and still can get on to do any reading.......ugh!!!

tricky site, sometimes not too user friendly. If you have subscribed and you access the site you will see a link on the right side of the screen "LISTSERV Archives" clicking that brings you to an alphabetical list
[2~COA] [COL~MA] [MD~SC][STE]. If you joined Kidney Onc, that would be under [COL~MA] and Papillary RCC at [MD~SC} clicking on the appropriate link brings you to the message list sorted by month and then each month sorted by topics. It pays to read through the interchanges because the details go beyond the subject heading and you will get a world of information on test, trials and what works and what may be coming next. Good Luck, Be well, Rich

Thanks a million!!!

*CHEERS*

Hi Malbers,

I, also, am so sorry you and your Dad are going through this. My husband also has Stage 4 RCC and the cough has been from the start, one of the largest problems for my husband. His oncologist told us early on that as the cough was cancer related, nothing would help it. He did prescribe about 10 different syrups and pills on the off chance anything would help, but it didn't. My husband is now on morphine tablets which help considerably for the pain. My husband's treatment also began with Sutent which seems to be the 1st line of attack and for many people has been successful in slowing the progression and/or shrinking the tumors. It did cause his taste to "go south" and he lost some weight when he was on it. The Ensure is absolutely correct...along with lots of smoothies, etc. Ice cream is great if he likes it. It takes awhile for results to show with any type of chemo and most doctors will wait 6 to 8 weeks or more in between scans. The pillow idea for sleeping is great....my husband sleeps on his side with a stack of pillows against it and he sleeps half-way comfortably that way. So sorry you are going through this....wouldn't wish it on my worst enemy...whoever that might be!

Papazona thanks for the advice, I passed it on to him. We got the results of his second CT scan and the was some issues on measurements kidney mass is between 12-14cm and the mets in the lungs are severe. Some of the tumors doubled in size in 2 months. from 6mm to1.2 cm, the largest in the right lung is 4cm. The cough comes and goes getting better and worse but always there. His weight has held steady @ 147lbs since julys start. The scan results are after his first 14 days of cycle one on sutent. He have another Ct at the end of cycle 2.
The doc was pleased that he hasnt many side effects and is still up and at 'em.
My thoughts and prayers are with all the good people here!!

Dear Malbers,
I am so very sorry that your sweet dad is dealing with this. I will be praying that the Sutent will shrink those nasty tumors. Sorry that I don't have any advice regarding the cough. As others here have said, there are many excellent pain meds available today. I hope the doctor will find the right one to make your dad comfortable.
God bless you and your dad.
Love,
Ingrid

Adding my 2 cents to what Terrafire wrote. They've been tracking my lung growths for 8 months, and in that time they've grown to 1.2cm.