hello everybody

[Wetzelbill]

glad to see this group started. Just wanted to say hi. :)

[pecwae]

1. Hi back!

:hi: I'm glad DU now has this place for us.

[Lerkfish]

2. hiya, are cancer survivors allowed?

had testicular cancer in 1985.

[Marnieworld]

3. I'm pretty sure survivors are allowed

The group doesn't have a charter but in the thread organizing it there were many survivors checking in. I do not and have not had cancer but my mother is currently undergoing treatment and it would be nice to hear survivor stories to cheer she and I up a bit I'm sure.

Congrats about your remission! Yay! :toast:

[Wetzelbill]

4. yes, I had lots of relatives and a friend

die of cancer. Known some survivors, both friends and relatives too. I am at an extremely high risk for prostate cancer as well, family history and I am a DES son. I also was part of a short story collection that contributed all proceeds to cancer research, so I have all sorts of interest in a support group etc. :)

[Wetzelbill]

5. I'm sure they are

good to see you're in remission. :)

[Lerkfish]

6. thanks!

I had a testicle removed, and all my lymph nodes in my abdomen.
Been doing pretty good since then, though I don't recommend the surgery (ugh!).

[Auntie Bush]

7. No,,,only the ones that didn't make it are allowed. LOL

[KitchenWitch]

37. Ahhh, a little gallows humor I see!

I can appreciate that!

:rofl:

[pecwae]

19. Don't see why not

Surviving is what it's all about. A 20+ year survivor like yourself provides hope for us all.:hug:

[ulysses]

8. checking in.

:hi:

[rambler_american]

9. Wonderful Idea!

Cancer has hit mine and my wife's families pretty hard. Most recently our daughter had ovarian cancer (about 4 years ago) but with the ovary she had left she gave us a beautiful grandson in April of this year. We are pretty active in raising money for cancer research including this bracelet which our daughter designed and my wife makes for the Norris Cotton Cancer Research Center in Lebanon, NH

http://theprouty.kintera.org/faf/home/default.asp?ievent=159736#

Click on Hope Bracelet on the left side of the page.

[katinmn]

10. Timing for this couldn't be better. Just learned this morning

that my mom has cancer of the urethra.

The diagnosis was long in coming. She's scheduled for surgery in just three weeks.

I'm going to need you guys!

[Auntie Bush]

11. Timing couldn't be better for me too.

We heard recently that my husband's kidney cancer has returned for the third time. Damn! He had his left kidney removed in 2001. Then in Fall of 2004 they found a huge tumor where his kidney was in his abdomen on his spine. While testing for that they found he also had colon cancer. Soooo in Dec.'04 they operated and successfully pealed the tumor off his spine but had to remove his colon except for about a foot. The operation almost killed him...

He was in intensive care for 6 weeks of the two months he was hospitalized and he lost 40 pounds. Long story!

But he survived and was doing fine till last month when they found two more kidney cancer tumors (metastasized)in the lymph nodes on the right side of his abdomen on his spine. He was told they were inoperable and were going to start him on a new Chemo (when we could find a way to pay for it) which was just approved by the FDA a couple months ago. Before this there was no Chemo for kidney cancer so we felt pretty lucky. That was until we found out even with Medicare Prescription drug coverage it would cost us $2600.00 the first month and them about $1500.00 the second month. Then about $300.00 per month after that till December. Then we start all over again at $3600. How depressing!

To make a long story shorter...we checked out the VA last week for a second opinion and they said they would try to pull strings and get his surgeon to operate. Turns out the chemo only prolongs life for about 4 months. So you can see...we are really hoping for an operation. Kidney Cancer usually keeps coming back and readily spreads to other organs. He had a PET-Scan two weeks ago and it showed that the cancer had NOT spread anywhere else...thank God!

Sooooo as it stands now...the surgeons and Kidney Oncologists are having a conference to see if they can operate. Hubby was scheduled today for a day of tests on Monday and an MRI next Monday...then a conference that afternoon to go over all the tests and determine if they can operate...if it hasn't spread. So please all...say a prayer...we need it!

By the way...we found out the VA can get him the Chemo when and if he needs it for $8.00 a month. Can you believe it???!!!! So if you or someone you know has ever been in the military...don't forget the VA!
And let's hope bush* doesn't cut any more funding.

[katinmn]

14. Prayers are being sent this minute.

Glad the VA is still there for you and your husband. No more funding cuts is right!

People should not have to worry about money when their health is at stake, but we know that this is the top domestic issue for our nation right now.

Your husband is a fighter and so are you. I will check in to hear the results of the test and doctor conflab. Got my fingers crossed for you and yours, Auntie Bush. :hug:

[Auntie Bush]

42. You're right about "People should not have to worry about money

when their health is at stake." When he got the news that it was inoperable and the Chemo was thousands of dollars...He actually said,
"Oh my God...I can't afford to live!!!!!" I really don't know what he would have done. To be honest...I think he might have refused to take it as it would totally wiped out all our funds. He felt it would have been selfish of him to have done that. What an awful position to place someone in..only in America!

[OzarkDem]

46. I've known women who made that choice

Last year two of the breast cancer survivors our group works with chose not to have treatment when their breast cancer returned. Both had no health insurance and didn't want to burden their families with the high medical cost and certain bankruptcy. They chose palliative care instead, it was more affordable.

Its a shame, no one should be forced to make that kind of choice.

[pecwae]

18. Glad to hear the VA is helping.

I have a VA appointment myself Wednesday to see if they can assist me in some way. Will the chemo the VA provides be the same that was recommended previously?

You and hubby will be in my thoughts. The testing part isn't so hard, but the wait for results is high stress! Hopefully, there is something you can both do to take the edge off the wait. Thankfully the prior PET showed no mets!

:hug:

[merci_me]

27. Oh my gosh, Auntie Bush..........

I'm so sorry to read this. Please think about cross posting this on the Wes Clark forum. You have a whole lot of friends there who were praying for you and your husband last year and will want to know and be there for you. (((hugs)))

[Auntie Bush]

43. We have good news...Our prayers were answered and

they are going to operate! In spite of the seriousness of the operation...they feel it's his best option. They said the chemo for kidney cancer was never tested on the kind he has which is rare. They have no idea how or if it would even help...so they are going to plan an operation and try to get the damn thing out. He said they would plan on the operation in about 2 weeks to a month. More time to enjoy summer!
I'll keep you informed.

More good news...he won't have to be on Chemo after the operation. They will just check him out monthly and keep watching to see if it spreads to some other area. Maybe all your prayers helped. Thanks everyone!

[OzarkDem]

47. Great news!

We'll keep praying for a quick recovery.

[LeighAnn]

44. VA seems pretty state of the art

Seems like they keep their surgeons and doctors up to date through regular training, unlike physicians in the private sector who may or may not read medical journals, attend conferences, etc. I'm in the midwest, and a lot of the hospitals around here are owned by HCA, and their doctors want to practice medicine the way they learned it 20 years ago. I wish I had a nickel for every medical professional that has scoffed at me for bringing up something I read on the internet.

I'm saying a prayer for y'all.

On Edit: I read your second post, and I'm so very glad to hear that. Below is what I wrote before I read that, but I'm leaving it here in case somebody else can use that information. So glad!

~~~~~~
If for some reason you can't get the surgery from the VA, call these people

1-800-433-0464

That's the Bloch Foundation (as in H & R Block) and they seem to have a line on all kinds of resources for getting the proper care.

Oh also, if you know any good Kidney Cancer resources online, please post a thread about them here.

~*Peace and Blessings to you*~

[pecwae]

16. Hugs to you and mom.

Please continue to keep us posted here. Sending positive and healing thoughts your way.:hug:

[katinmn]

17. Thanks!

Back at you. :hug:

[Auntie Bush]

38. Sending healing prayers her way every day!.

[MissHoneychurch]

12. Hi

:hi:

I lost my dad to a brain tumor almost 5 years ago. I still can't believe how fast he went. The tumor killed him within half a year.

My grandfather also died because of cancer (starting with prostate cancer), it just took him longer. Not sure which is better.

[pecwae]

22. I'm so sorry for your losses.

My father died of mets from prostate cancer. He had never had a prostate exam until it was too late.

[MissHoneychurch]

24. Thank you

my grandfather went through the whole treatment except chemo.

In the end he became morphin against the pain but of course that messed up his brain.

But with all the pain we have sweet and even funny memories. Not only of them as persons but also during their illness and last days. For example I did some arm wrestling with my dad when he wasn't even able to speak anymore. He was laying in bed. We wrestled a bit and he won. That smile he had on his face was just heartbreaking. You could tell he still understood that he beat me (not that I ever had a chance).

I am sorry for your loss as well.

[OzarkDem]

29. What a sweet story

Its great you were able to make your dad feel good even in his last days.

[Auntie Bush]

39. Oh my gosh...this is so funny.

Make your screen show only the upper half of your sig.line...above the cats tail. Then look at the first two sections. What do you see? Hint...look at the negitive space. Dirty picture or is my mind in the gutter? Perfect Raushock (sp?) test.

[Skidmore]

13. I'm a survivor

of thyroid cancer. Will have my first followup scan in a month or two. The chances are pretty high that it is gone, but it is scary nonetheless. My mother, father, and my brother all died of cancer. That and the fact that an oncology nurse once told me that remission means that the cancer just hasn't found a way around the treatment makes me nervous.

[katinmn]

15. Hey Skidmore

I think the nurse was a little out-of-bounds to make that statement to you. :crazy: It's the kind of thing that hangs with you and there is really no basis for it. None of us knows what will happen with the cancer.

My boyfriend is a cancer survivor, too. He had a rather large tumor removed from his neck about 2.5 years ago and then a few months after that had a bit more removed. We just started dating after the new year and hit it off marvelously. I went with him for his last check-up which is about every 4-6 months. It's nerve-wracking just before the check-up. His next one is in August.

BTW, do you find any comfort in poetry? My SO is a fantastic poet in addition to being a building contractor. He has written numerous poems from a cancer patient's perspective. The American Cancer Society is considering publishing a book. :-) I could email you some. I'm not kidding about him being good. He just returned from a week-long program at Sarah Lawrence for writers focusing on medicine and he's going to Bread Loaf, a long-standing writer's workshop in Maine in August, right after his next check-up. He also writes some kick-ass political poems.

Sending warm thoughts to you, Skidmore!

[pecwae]

20. What an ass that onc nurse is!

Of course you're scared and nervous about recurrence and that idiotic nurse's statement didn't help.

I've recurred once and had (I always say "had") an aggressive form of BC. There's a possibility that I might recur, but there's also the possibility that I won't.

I really wish we could find another term other than remission. Remission just sounds like we're counting the days until it comes back and that takes away hope and quality of life. I won't let this disease do that to me.

Please let us know how your scans go, Skidmore. We're in this together and are here for you. :grouphug:

[ulysses]

32. I like the word "cure"

25 years in remission, here.

[pecwae]

35. An awesome milestone!!

:toast: Here's to 25 more.

[ulysses]

36. thanks!

:)

[Maestro]

26. I'm a thyroid cancer survivor as well.

Which kind did you have? Depending on which kind it is your chances of leading a completely normal life are very high.

[Auntie Bush]

40. Ignore negative thoughts like that...you'll be fine. I just know it!

[Tracer]

21. Hello.

I'm seven months past my last chemo for ovarian cancer. I think my prognosis is pretty good, since I was diagnosed at Stage 1 -- unusual for ovarian. Had a CT scan 2 months ago and all was clear. So I'm very hopeful.

Did anyone see the PBS show (on the last two nights) called "A Lion in the House"? It was an extremely affecting documentary chronicling the parents of children with cancer. I had to wipe away tears at many points. I truly didn't know that the treatment for kids with Leukemia and Lymphoma were so drastic. It made my 5 chemos look like a walk in the park.

[pecwae]

23. You have reason for hope.

From all I've read Stage I ovarian is pretty rare because the symptoms are so vague and usually attributed to something else.

Extremely good news about your clear scan! May they continue to be so!

I didn't see the PBS show, but now that you've mentioned it I'll look for the repeat even though I know it will be hard to watch.

[ulysses]

33. I've heard of it.

I want to watch it, but I don't. I was diagnosed with Hodgkin's lymphoma when I was 11 and didn't really start dealing with a lot of those emotions until I was in my early twenties.

[Maestro]

25. Checking in as well.

Cancer survivor since 2004.

[OzarkDem]

28. Mammary challenged survivor checking in..

Eight year survivor of Stage 3, aggressive breast cancer. Bilateral mastectomy, 4 cycles ACF, 4 cycles docetaxel, 6 wks radiation.
Reconstruction didn't work too well (who needs boobs, anyway?), and have some lymphedema now, but otherwise doing great.

[alarcojon]

30. Currentlly fighting AML

Acute Myelogenous leukemia. First round of chemo went well, putting me on the edge of remission. Still, I am waiting to get into an experimental programm at the U of Minnesota. I have to get rid of a stomach bug and have an infiltrate surgically removed from my lung. The road has been rough, but blessed with wonderful moments, as I have my wife and my mother as caregivers and have had a lot of support from friends.

Glad to read the survivor stories and I am sorry for those who are suffering and/or have suffered losses.

[ulysses]

31. all strength to you.

You can do this. :thumbsup:

[OzarkDem]

34. Hope you're getting better soon

Glad the first round of chemo went well! U of Minn sounds like a good program. Let us know how its going!

[Auntie Bush]

41. I'm sorry you had to go through so much and I hope

and pray you'll be better soon. Thank God for caregivers. They deserve a special place in heaven.

[BeeBee]

45. I come from a family with absolutely no history of cancer...

until last October when my mom was diagnosed with gallbladder cancer. She died 3 months later in January of this year.

I'm glad that the mods added this group. I wish it would have been here a few months ago when I was dealing with my mom's illness.

I come to this group now because I am still dealing with my mom's cancer and death. I come here also because I hope I can help others going through the same things I went through and maybe others can help me with issues I am still working on.

If anyone has any questions or would just like to talk, PLEASE don't hesitate to contact me.

BB.

[Auntie Bush]

48. Thanks BeeBee...Unfortunately I may have to take you up on that.

offer...but I hope not! I'm sorry for you and your Mother and I hope you'll soon feel better as it must have been an awful experience.