My cancer is showing progression.

[Longhorn]

I've had nine cycles of chemotherapy (cisplatin and topotecan) and all prior scans had shown shrinkage. But this time, three cycles after the last scans, the tumors are bigger in my pelvic lymph nodes and lungs. So I meet with the doctor tomorrow to discuss switching to Taxol.

It's hard to remain optimistic at this point but I'm going to try. Have any of you or your loved ones successfully changed treatments like this?

Any experiences with Taxol?

Thanks! :hi:

[JohnnyLib2]

1. No experience,

but I'm sure thinking about you and wishing you well.

P.S. The saying around here is damn-the-bad-cells.:hug:

[Longhorn]

3. Thanks, Johnny!

I start the taxol on Friday. My doctor said it is generally 20 percent effective as a second-line treatment. She's had one patient early in her career who had a complete cure and says she's due for another. All I can do is hope! :hug:

[Tracer]

2. Oh Longhorn!

That sucks! Stay positive!

I had Taxol in the first round of chemo. Don't know what to say about it other than it (and the Carbo) wasn't too bad. No nausea, just tiredness.

I had a CT scan yesterday (a follow up from the one in August) and will find out the results on Thursday.

[Longhorn]

4. I hope you have good news!

They're telling me that taxol can be easier on me than what I've been getting, if I'm able to tolerate it okay. Guess I'll find out on Friday. I'll be getting it weekly and new scans in three months. Take care! :hug:

[madmax]

5. I'm thinking about you

you're in my prayers. Stay postive Longhorn. :hug:

[Longhorn]

8. Thanks, madmax!

It really does help! :hug:

[LeighAnn]

6. Talcum for metastatic lung tumors

I don't know if I ever showed you this article, of if it would apply, but it's about the use of talcum for stopping metastatic lung tumors

http://www.sciencedaily.com/releases/2007/06/070606235323.htm

I wonder if this would be useful to you. It's the University of Florida that's doing it.

Many prayers and best wishes

[Longhorn]

9. I have read that before.

My doctors believe I need the systemic approach right now because getting rid of individual tumors won't help as long as others are in my system. But it's good to remember that approach if the tumors start causing me breathing problems.

Thanks! :hug:

[mwdem]

7. Damn, Longhorn, I'm sorry to hear about this.

I've been away, and was just checking back in. I hope this round of treatment works out for you. I've got no experience with Taxol. Take care of your bad self, and you are in my thoughts and prayers. Try to stay optimistic, no matter how hard. It really matters.:hug:

[Longhorn]

10. Thanks, mwdem!

I'm feeling more optimistic today after meeting with the radiological oncologist. He went through all of my scans with me and reassured me that the course I'm taking right now is the best one. My gynecological oncologist doesn't spend this kind of time with me and usually leaves me feeling less hopeful. :(

I'm investigating alternatives just in case but I'm just going to have to start kicking this cancer's ass again beginning tomorrow! :hug:

[madmax]

11. You go Cowgirl!

I picked up a book yesterday 'Crazy Sexy Cancer Survivor' by Chris Karr. She has your attitude. Kick canSer's ass. Count me in your posse. We'll get those smurfs. If all this sounds wierd it's kind of the way she writes. Since I'm new in the club I need to start with a plan and face my fears. This came out of nowhere so I'm still walking around stunned. This book gives me hope to face what's coming.

So far all they know is that I've got cancer but, where? CT and Pet Scans good, mamogram good, CA125 good, and sonogram good. Monday Enoscopy and then on the 19th Colonoscopy. What a roller coaster.

You're in my thoughts and prayers always girl. You're special to me - you were the first to answer my first post about cancer. I love you. :hug: Think good thoughts, be positive and fight back.

[Longhorn]

12. I've heard of that book.

I should get it! Thanks for reminding me!

It sounds like you're already learning to live with this new wrinkle in your life. Good for you! I think it's good news that they haven't found it yet. Maybe the fact that it's hard to find means that it's not that pronounced. Have you had a colonoscopy before? I had one last summer and thought it was very easy. Even the prep wasn't that big a deal.

We'll hang in there together, Hon! Thanks so much for your kind words and thoughts! :hug:

[Forkboy]

13. No experience with that at all.

But I certainly hope that whatever you do it works. :hug:

[Longhorn]

15. Thanks, Forkboy!

I had my first round of Taxol Friday and it wasn't too bad. It will be three months before we take another scan to see if it's working and I can't live in constant fear for three months so I've decided I just have to continue with the expectation that I'm going to beat this. :hug:

[auntAgonist]

14. I have no experience at all I just hope to encourage

you with my continued prayers and good thoughts.

Hang in there Longhorn!!!!

You have lots of us rootin' for you.

:hug:

kesha

[Longhorn]

16. I appreciate it, Kesha!

I'm trying not to succumb to the mental games and staying positive. The good thoughts from near and far really help! :hug:

[madmax]

17. self delete .... ooops

[seemunkee]

18. I'm sorry. Hope the Taxol works for you

[JohnnyLib2]

19. Hi Longhorn

How about an update? Been wondering about you.

[Longhorn]

20. I had to miss chemo last week due to an eye infection.

It took a little longer to respond to antibiotics but it's clearing up. So I'm feeling fine but anxious, of course. I've been looking into clinical trials and getting another opinion from Cancer Treatment Centers of America in Zion, Illinois. I've heard good things about them, including an old thread in this forum. They say 75 percent of their patients are Stage III or Stage IV and many have been told by their doctors that there is nothing else that can be done, yet some do survive. I just want to feel like we're doing everything we can and I'm not limited to one person's knowledge on this complex subject.

Thanks for asking! :hi:

[JohnnyLib2]

21. Hope the eye is better.

On with battle......

[latebloomer]

22. I'm sorry to hear that, Longhorn!

But I know with your fabulous attitude you will kick some cancer ass.

Visualize yourself suffused with white healing light. See yourself totally healed.

But also, when you need to, cry, scream, rage, rant. Let all the feelings out.

Eighteen months after my dx, I am finally in therapy. I think I have a mild case of PTSD because this is so scary and we need to keep pushing down feelings in order to go on. Try to stay positive, but allow yourself to be negative if you damn well feel like it. Even cowgirls get the blues.

Just hold on to that fighting spirit. We are all rooting for you!

:yourock:

[Longhorn]

23. Thanks, latebloomer!

I just had a checkup today that left me in good spirits because I still seem normal in all respects. I'll have my infusion tomorrow, a little early due to Thanksgiving. It leaves me a little wiped out but nothing serious. Just two more weeks of school until after MLK Day so it should get a little easier.

Thanks for the help with visualizations! I'm starting yoga next week and I'm trying hard to stay as healthy as I can. I'm so pleased that you are doing well! :hug:

[noiretextatique]

24. update...how are you doing Longhorn?

i'm late to this thread, but i have been holding you up in thought and affirmative prayer. any news?

[latebloomer]

25. I'm also wondering

How are you doing, Longhorn?

Vibes for much healing in the New Year!!

[Longhorn]

26. I'm doing okay, thanks!

Today I was diagnosed with radiation proctitis. I've been suffering for several weeks and my oncologist pretty much ignored my complaints. But yesterday she saw "real blood" and thought she felt a lesion so she arranged for me to have a sigmoid colonoscopy this morning. The biopsy was negative (I knew it would be, even though her comment could have left me devastated!) and I got a prescription for suppositories that are already helping. (The prescription reads: "Insert one suppository per rectum twice a day." :rofl:)

On January 11, my husband and I fly to Chicago to go to the Cancer Treatment Center of America. I don't know if they'll have better treatment for my cancer but I guarantee they'll have better treatment for my side effects and offer me more hope, only because it can't be worse than what I'm getting now. :mad:

But I do feel good about the new year and I truly appreciate your caring! :hug:

[latebloomer]

27. I've heard good things about CTA

I like their approach of combining Western and alternative medicine. Let us know how it goes. Will you be an inpatient?

I like your directions for the suppositories. All my pills say to "Take by mouth". I always think, "Where else am I gonna shove them"

[Longhorn]

31. There's a lot up in the air about my future treatment.

They tend to think outside the box so they could come up with something that would require me to stay up there or they could decide that I can continue my treatment in Austin and go there for checkups and tests. We'll be there three to five days the week of January 12 and that's when we'll find out what they recommend and we can make our decision.

I agree that the holistic approach is key for me, especially after this latest radiation proctitis ordeal that could have been treated much sooner if my oncologist had a different attitude.

[Ocracoker16]

28. Glad to hear about going to Cancer Treatment Center of America

I am new here, but I wanted to offer you my best wishes. My mother has Stage IV cancer. She is currently in a clinical trial which has been somewhat effective. However, like you the side effects of treatment are really bothering her. She has found that her doctors are not very responsive to her complaints. I am glad that you are going to Cancer Treatment Center of America, because I believe that you will get several additional opinions on your cancer which could lead to more effective treatment. I also think that they will evaluate you as a whole person and try to help you find alternative treatments that might deal with your side effects. It sounds like you already do some of those activities so maybe you can try others. You will be in my thoughts.

[Longhorn]

32. Welcome to DU!

I certainly appreciate your comments! First, I want to wish your mother the best! What kind of cancer does she have? I'm so glad the treatment has been effective but I'm sorry she's not comfortable. I do think oncologists should be better trained in keeping patients comfortable and offering hope. Have you seen this article in the New York Times? http://www.nytimes.com/2008/06/17/health/17brody.html?_r=2&ref=science&oref=slogin&oref=slogin I think some oncologists expect certain patients to die and kind of write us off. They need to change their attitudes!

Thanks for your kind words and support! I'm feeling very hopeful about visiting CTCA and hearing what they have to say from the perspective that they believe I can beat this thing! I wish your mother the best, too! I may have a clinical trial in my future, too. I hope she is getting some good medicine that will keep her with you! :hug:

[auntAgonist]

29. I hope they offer you relief from the side effects!

I will keep you in my thoughts as you travel to Chicago and consult with specialists there. I wish there was something more concrete that I could offer. "keeping you in my thoughts" sounds so lame some days.

I do care though :)

:hug: :loveya: :hug:

All the very best for 2009 dear lady.


aA
kesha

[Longhorn]

33. Thanks, Kesha!

Your positive thoughts help more than you think! :hug:

The medicine for my radiation proctitis is working and I'm feeling much better! It's just too bad I had to suffer as long as I did. I'll be interested to hear how CTCA would have me handle side effects. Even if all they offer is a plan on which local doctor to call, it would be more guidance than I've received from my oncologist. :(

But the world sure looks different when I'm feeling better! I head up to Chicago just one week from tomorrow! I'm so excited! I'll have internet access so I'll try to post an update when there's news.

Thanks for thinking of me, Sweetie! :hug:

[emilyg]

36. Glad you're going. Many hugs to you.

I'll keep you in my prayers.

[Longhorn]

38. Thanks!

I'll let y'all know how the trip goes.

[mwdem]

37. Longhorn, good luck on your trip to Chicago next week.

I know you'll be getting better treatment. So sorry about your side effects, but you are staying positive and taking charge, and that's what really counts in the long run. :hug:

[Longhorn]

39. Thanks!

I had a rough weekend but I'm hoping I have things under control now.

[Tab]

30. Sorry to hear that

sounds like it's hopped on the bus and is traveling around your body.

I really don't know anything about Taxol. Thinking of you, though. Take care.

- t

[Longhorn]

34. Fortunately, it hasn't shown signs of traveling,

just getting bigger in its current location. We'll find out in a couple of weeks if the Taxol is working. I haven't had any symptoms that make me think it's any bigger so I'm feeling very positive that we'll get good news.

Thanks for thinking of me, as I am of you! :hug:

[JohnnyLib2]

35. I'm sending healing thoughts toward Chicago to greet you.

Maybe a few tumor-kicking thoughts, too. All best wishes with the trip, the treatment, the future. :thumbsup:

[Longhorn]

40. I appreciate it!

I was afraid this newly-diagnosed radiation proctitis was going to delay the trip but I'm getting better now. :hug:

[Upfront]

41. Pulling for you Long Horn

EASY TO SAY BUT NEVER QUIT. I know you won't. Hugs, good vibes, and prayers to you.

[elleng]

42. Upfront, LongHorn passed on after her Chicago treatments.

Her family wrote to us about it, months ago.

[Tab]

43. No experience w/Taxol, but wishing you the best

I was stage III and locked mine down. I can't imagine what it's like to be stage IV and have that stuff going uncontrolled. I'd be a mess.

[Uben]

44. It felt good to give Longhorn a heart!

It's like she's still here! RIP sweet one!

[Forkboy]

45. ....

:hug:

Classy move.