Damn, My hubby's kidney cancer is back again!!... It's now in his lungs.

[Auntie Bush]

It's deep in the center in the lymph nodes. He just got a pet scan and they discovered two more. It's inoperable and he'll either do Chemo or radiation. He'll make the decision with his oncologist this Thursday.
What a way to start out the new year! Neither option is good. He'll be on Chemo until it stops working (which is about 4 mos. to a year if it works at all) It also can have severe side effects and some people go off and just succumb to the cancer. He's really, really not looking forward to that. If he goes the radiation route it will damage his lungs and they said he'd probably be on oxygen and steroids. Very discouraging prognosis!
It's even worse than I have stated but I can't think about that now.
I wish I could sound more upbeat and positive, but it's hard right now...maybe later. Prayers would be very much appreciated...as we both need them.
Thanks, Auntie

[Redbear]

1. Many prayers for your both.

I will pray it gets more positive and for strength for you both.

[Auntie Bush]

2. Thanks Redbear...we could use that.

[flamingyouth]

3. I'm so sorry.

I'm adding him to my prayer list. Please keep us posted when you can because we all care here and want to know how he's doing and how you're doing as well. :hug:

[LeighAnn]

4. Have you been to CancerGuide.org?

You might have already seen this, it's a good site:

http://cancerguide.org/

It was built by a fellow who survived stage IV kidney cancer.

Praying for you both and hoping for better days!

[noiretextatique]

5. i'm so sorry, Auntie Bush

both of you are in my thoughts and prayers.

[JohnnyLib2]

6. I'm very sorry to hear that.

Many prayers for him, for you, and the family.

And damn, damn, damn, cancer.

[seemunkee]

7. I'm so sorry Aunti Bush

You have my positive vibes on your husbands treatments. I showed my wife your email and she sent this back to me:
Please suggest they look into sunitinib, sorafenib, temsirolimus http://www.cancer.gov/cancertopics/druginfo/fda-temsirolimus preferably on a clinical trial. Have her look at all treatment options on the www.cancer.gov website.
She's a clinical trial manager for NCI and because of my having renal cancer this last summer she has been keeping up to date on the latest treatments.

[Auntie Bush]

8. Hi, I think you're the one who emailed me. I just answered.

He will be on the sunifenib (Suten). I haven't heard of temsirolimus...but maybe I don't know its generic name...I'll look into that. I think that's the one that was just approved by the FDA last May. His Dr. mentioned that as an alternative if the Sutent didn't work or the side effects were too harsh on his body. I certainly hope you never have to take it and wish you all the luck in the world.

Thanks for the websites. I've looked and read so many I don't know which ones I've seen yet. You can count on the fact that I'll check them all out. I'll post some forums here later. It's good to discuss this with people who are in the same boat and tell you things from their first hand experience. One thing I've learned is the fact that it effects people very differently... even from month to month, day to day and even hour to hour.

You're so lucky to have such a knowledgeable wife! Good luck to you both.

[Auntie Bush]

11. Here's some informative websites.

This one is a forum with people on Sutent discuss their experiences...some uplifting..mostly sad. Makes you appreciate small blessings.
Doctors have found that Sutent can help other patients with liver or lung etc. cancer. So other cancer patients should research this medication also.

Here's a good forum on the topic. kcalist.org I'd skip over to around page
13 for more recent data and posts.

[Auntie Bush]

9. Hi everyone...sorry I didn't get back to you sooner but

my husbands appointment was canceled and we just had it on Friday.

There isn't much new except we've decided to go the Chemo (Sutent or sunitinib )route and will get started in a couple weeks. First they have to fine a source for the medication at a discount since it costs $4,000 per month. In and out of the donut hole in a hurry! :( I've spent a lot of time this weekend researching and studying up on Sutent and it's side effects which aren't any picnic. When I get time later I'll post some more information and some forums where people on Sutent discuss their progress and side effects. There's lots of information and hours of reading material.
Thanks all for posting information and sending much welcomed and needed prayers and good positive wishes. I'll try to change my attitude...because that's important and think and sound more optimistic. Wish me luck!

[JohnnyLib2]

10. Strength, peace, hope, courage--wish I could package them all

up. Onward.....

[noiretextatique]

12. claiming the best outcome for your husband and you

your attitude is just fine, btw. i am learning to let my feelings manifest and learn from what they teach me. on the other hand, embracing optimism is a very good thing too. :hug:
holding you and your husband up in my prayers.

[Auntie Bush]

13. We were denied coverage of Sutent till this past Wed. (11/30)

We were so discouraged...both our Health Insurance and the VA refused to cover the cost of Sutent which is now around $8,000 (more or less) per month. :cry:

After going to the main State VA hospital in White River Junction...with his "book" of medical records...they finally decided to pay for his Sutent. :)
(I don't know yet what our co-payment will be, but I'm assuming it will be affordable...I hope) You don't know what a relief that was! No way could we afford that and with this housing glut we couldn't even sell our house. Now that was a scary situation! :scared:

Sutent is taken by mouth at home but the side effects are horrendous according to comments from those who are using it. Please pray for us and that I can handle caring for him. I'm really, really scared. I don't know how long it will take for the VA to fill the prescription. Maybe it will be in the mail tomorrow morning. I can't say I hope so. Will keep you updated.

Auntie

[seemunkee]

14. Glad the insurance finally went through

Hope the side affects aren't too bad for him.

I had my 6 month CT and they saw a very tiny spot in my lung. Hoping its just some scarring and not a recurrance. I'll get another scan in 3 months to see if there is a change.

[Auntie Bush]

15. John's medicine finally arrived around Valentine's day.

We waited so looong, but I guess it takes time to file all the paper work, especially because they don't cover this medicine anymore. I suppose they have to get around many rules!

We were relieved it finally arrived...but dreaded it at the same time. We were actually getting worried that they decided not to cover it after all. Talk about mixed emotions! You have no idea how upset we were to have to start this medication. We felt like that was the last day he'd ever feel good again. (Like the end of our lives as we know it.)

We had been waiting for a phone call regarding the results of his latest pet-scan. He had just received a base line scan since it took 2 months to get the medicine. Then a miracle happened! The phone rang about an hour after the arrival of the medicine. The Dr's. assistant called to tell us the scan revealed No new growths and No increase in size of the his tumors! That was truly a miracle as it isn't the nature of Kidney cancer to go into remission on it's own. You can't imagine the joy in our household and family upon hearing that news.

Hubby decided not to take the medicine, but family members suggested maybe the Dr. would still want him to take it to prevent new growth and spreading to other areas. It took another week to finally get permission from his Oncologist and the VA's Dr's to NOT take the medicine. They said that was all the medicine would do anyway and he did it on his own! What a relief! Now we could really celebrate!

We're not kidding ourselves and know this probably won't be permanent. But, we feel our and your prayers were answered and hubby has several more months to enjoy. Ahhh, Spring! Now I pray he'll enjoy this summer and working in his garden. Wish us luck and don't forget to keep the prayers and good vibes coming as they are working! A miracle has really happened. Thank God!

[Longhorn]

18. That's great news!

I'm glad you're enjoying it rather than waiting for the other shoe to drop. Wouldn't that be a waste to live expecting the worst and then find out it didn't come? Better to do the opposite! :hug:

[Auntie Bush]

16. Hi seemunkee,

I was sorry to hear they detected some sort of spot on your lung. I wish you the best of luck and hope all will be OK. I wouldn't want anyone else to go through persistent illness. I hope they caught yours in the early stages.

You and my husband will be getting your next c-scans about the same time.
I pray you will both receive good news.

[seemunkee]

17. That is great news about your husband being in remisson

May it continue to be so.
I am optimistic about my spot only being a scar. I've got others and the radiologist even thought it was.

[Dinger]

19. My Stepdad Was Just Diagnosed With Prostate Cancer

My mom said that it's treatable. She also said they took 12 biopsies,a nd most or all were positive. Please pray for him. My mom (a new DUer) has been through much in her life.

[Auntie Bush]

20. I'll be sending him lots of prayers and your Mom too as she'll need them too.

I belong to a healing group...in fact I'm a certified healer and we keep healing books with names of people who need healing. We all send them healing energy so he'll get lots of prayers...whether the person is a believer or not. It works...I know from many personal experiences. Keep thinking positive...although it's damn hard sometimes or even most the time....keep trying.

LOTS of people recover completely from prostrate cancer...it's very curable if you get it early. Do you know what stage your step Dad's in? Do some research on the internet for your Mother so you can filter out some of the depressing stuff and give her the necessary information and encouragement. I do that for my husband...he can do it but prefers not to. Too hard to stay positive if you know too much. I hope she hasn't already done that...but if she participates on DU she's probably pretty internet savoy.

I know you'll take good care of them and I'll send lots of healing prayers. :hi: and :hug: Auntie

[noiretextatique]

21. hi auntie bush

i am holding you both and your husband up in thought and prayer. i perused this thread for an update and didn't see one since march, so i hope things are going well. :hug:

[Auntie Bush]

22. Things are not going well. Hubby is in the process of crossing over now.

He has stopped eating and drinking and doesn't have much time. :cry:
At least he will get to know that Obama won tomorrow! :) Too bad Obama's Grandma didn't live a few more days to see history being made. :cry:
Sorry, I can't write now.

[JohnnyLib2]

24. Thinking of you.

:hug:

[Longhorn]

25. I'm so sorry!

There is nothing I can say to make this easier for you or your husband. But I do wish this time to be peaceful and full of love for both of you. :hug:

[emilyg]

23. Prayers for both of you.

:hug:

[Auntie Bush]

26. y poor husband died yesterday

after a 9 year battle against Kidney cancer. The first four years were do able. The next 5 were on and off nightmares. His long struggle is over! We'll be burying him on Monday.

It's my granddaughter's birthday today and they just walked in...so goodbye for now. AB

[Longhorn]

27. I'm so very sorry, Auntie Bush!

:hug:

[JohnnyLib2]

28. May the good memories begin to outshine the tough ones....

My sympathy to you and the family. :hug:

[Uben]

29. I am sorry for your loss

May God bless.

[LeighAnn]

30. So, so sorry

[SalmonChantedEvening]

31. Vibes and hugs Auntie Bush

Blessings upon his memory, and condolences and love to you and your family.

:hug: :cry: :loveya:

[Wetzelbill]

32. my condolences

:hug:

[emilyg]

33. My condolences.

[Forkboy]

36. I'm sorry Auntie Bush.

:hug:

[auntAgonist]

37. Auntie Bush, I'm so very sorry to read your news.

Please accept my heartfelt condolences on the loss of your loving husband.

:hug:

aA
kesha

[noiretextatique]

38. i'm so sorry, Auntie Bush

i wasn't around much the last two months, so i just saw this post. :cry: i'm so sorry :hug:

[Tracer]

34. I'm very sorry to hear this.

My sincere condolences.

[latebloomer]

35. I'm very sorry, Auntie Bush!

Sending love and light.

:hug: