I'm off to Chicago tomorrow!

[Longhorn]

I was afraid I wasn't going to be able to make the trip because of this radiation proctitis that I am currently suffering -- and I mean suffering! But with some changes in my meds, I seem to be doing better. I'm taking Imodium to slow things down and I'll wear adult diapers on the plane if I have to but I'm going to the Cancer Treatment Center of America in Zion, Illinois, and find out their opinion!!!

I'll update this thread when I have any news and to let you know what the place is like. I found some old DU threads on the subject in this forum but none of us had actually been, though some had friends and family who had gone. So I'll be the official DU Cancer Support Group reporter. :)

I'm not expecting miracles but I am hopeful that their approach will work better for me. For example, if my Austin oncologist had taken my side effects seriously, I could have started treatment for the proctitis weeks ago and it wouldn't have developed to the ulcer stage. All of this misery could have been avoided. But it wasn't cancer so she wasn't interested, and in fact, she jumped to the conclusion that it was cancer when she finally felt something inside. Fortunately, I just knew she was wrong and didn't suffer needlessly while we awaited the biopsy results. There was no reason she had to bring up lesions since we were going to find out the next day anyway. That's just typical of her "bedside manners."

If I don't find what I'm looking for at CTCA, I'll keep looking. All I want is a doctor who is willing to believe that I can beat this or at least extend my time and who cares about my quality of life as I go through this. I don't think that's too much to ask.

:hi:

[elleng]

1. BRAVO,

and BON VOYAGE!

I will be thinking about you.

[Longhorn]

3. Thanks, elleng!

I don't know why I'm looking forward to a trip where I'll be stuck and poked and prodded but I am. :hi:

[elleng]

54. delete

.

[Tracer]

2. It's unfortunate that you had (have) a dismissive oncologist.

It's hard to say why they get that way. Perhaps they've heard the same old complaints too many times -- even though the patient's complaints are new to them.

Anyway -- best of luck in Illinois!!

[Longhorn]

4. I don't understand it either.

I know plenty of people who really like their doctors. I've asked around and haven't found any recommendations for a local gyn-onc with a better disposition. The doctor I'm going to see at CTCA is a breast cancer survivor so I'm expecting better understanding.

Thanks! :hi:

[JohnnyLib2]

5. Go! With prayers and best wishes and hopes.

Well, maybe some warm clothes, too. :hug: :thumbsup:

[Longhorn]

6. I just realized I'll have to pay a luggage charge if we don't get everything into two carry-ons.

That could be interesting, as cold as it's going to be. But we don't have to pay the airfare so we can't really complain if we pay a little for the luggage.

Thanks! :hug:

[Tab]

7. Wishing the best for you!!

Get well!

- t

[Longhorn]

8. Thanks, Tab!

And the same to you, too! Please let us know how your surgery goes! :hug:

[Tab]

9. Well, if we make it to April and I haven't posted

assume the worst.

However, I'm going to Dartmouth-Hitchcock, which is a world-class hospital, absolutely top-notch, and I trust them implicitly. I'd love to work there myself - it's a damn nice hospital. But the best to you.

Hopefully none of us will die from this stuff.

[auntAgonist]

10. I'll be keeping my fingers crossed for you Longhorn!

Have a safe trip. I hope you get all the help you need and want at CTCA.

Someone who cares about your quality of life is NOT , no NEVER too much to ask for. I just know that 'someone' is out there just waiting for you.

:loveya:

aA
kesha

[Longhorn]

17. Thanks, kesha!

I'll post an update in a minute but things are going well so far! :hug:

[Uben]

11. Good luck, Longhorn!

You'll be in my thoughts tomorrow. I hope they find you new options and get this thing turned around!

[Longhorn]

18. Thanks, Uben!

The oncologist has already mentioned some possibilities but it's early. So far, so good! :hug:

[Ocracoker16]

12. You are in my prayers

I hope that you receive all the attention you deserve. How nice to have a doctor who is a cancer survivor. I told my mom who has Stage IV breast cancer about you. She told me that a friend from the infusion clinic went to CTCA and was very happy with her care there.

I also told her about the New York Times article you linked me to that was about how metastatic cancer has become a chronic condition which can be managed over time. I immediately recognized the article, because my mom shared it with me when it was first published. My mom likes the hitchhiker theory in which a patient does one type of treatment until it fails and then finds another treatment to replace it knowing that there will be yet another treatment available. She did an interview with a local affiliate from NPR and one thing she talked about was the importance of quality of life for those with chronic incurable cancer. It is wonderful that you have a good grasp on the importance of maintaining an acceptable quality of life while being treated, because doctors tend to neglect that issue. There is more to cancer treatment than how the scans look and if the numbers are good. Quality of life can't be measured so it is important to have a doctor who is a good listener.

I don't think you are asking too much. Many people do not accept their illness and demand a cure when there is no such thing. It sounds like you have had a lot of different treatments and want to keep going as long as it is tolerable. I look forward to your next posts.

[Longhorn]

15. The kindness of strangers never ceases to amaze me.

What a wonderful person you are to take the time to share your thoughts and send good wishes my way! Your mom is so lucky to have you in her life! :loveya:

I'll update this thread in just a minute but in the meantime, thanks so much for caring! :hug:

[seemunkee]

13. Safe journey

Hope you get some good news.
Any chance you can switch your oncologist?

[Longhorn]

16. Thanks, seemunkee!

I've asked around but haven't found a gyn-onc in Austin who would be an improvement on my current doctor. But I'll keep looking if I have to. :hi:

[emilyg]

14. My prayers go with you.

Fight like hell.

[Longhorn]

19. Your prayers are greatly appreciated, emilyg!

I'm giving it all I've got! Thanks! :hug:

[Longhorn]

20. UPDATE: Travel and first day.

Our flight went well and I'm so thrilled to be able to say that because I was very nervous about having a "gastric incident" due to my radiation proctitis -- so worried, in fact, that I wore adult diapers! :blush: Better safe than sorry! We were met by a driver who took us out to a limo -- my first limo ride! However, there was a couple inside who had already been waiting two hours and we ended up waiting another two hours for a third couple whose flight was delayed. Add the 40-minute drive to the hotel and I wasn't very happy but my body amazingly cooperated. And the limo driver was kind enough to call the Raddison and order us dinner to go just before the kitchen closed for the night. He didn't have to do that.

Today we took the shuttle to the center, got checked in, and had lunch (all meals are free if less than the meal allowance.) The food was good but not exactly gourmet, as the limo driver had bragged.

I was examined by my new doctor, who spent quite a lot of time asking me questions about my experiences so far and actually listening and caring about my answers. I also had an EKG and blood draws. I have appointments all week for scans (head to toe) and consultations with the nutritionist, naturopath, and physical therapist. I'm also supposed to see a GI doctor but he can't see me until late in the week, which means I have to stay until Monday to see the oncologist again for my suggested treatment. I'm going to see if we can cancel the GI consult since I have a doctor in Austin and then we won't have to stay so long.

Everyone was friendly and helpful and seemed competent. The oncologist said that she agrees with the treatment I've received so far so that's encouraging. If I switch to her, it may be because of her encouraging attitude more than anything else, though she hasn't promised me anything yet.

It's very cold here and has started snowing. Highs are supposed to be in the SINGLE DIGITS by mid-week! :scared: But we're well-prepared and may even go for a walk tomorrow. So far, I'm glad we came! :hi:

[JohnnyLib2]

21. It's wonderful to hear about the reception and running start.

Also, the comprehensive approach. Many prayers for a good week and some good news along the way......

:pals:

[emilyg]

22. Sounds good so far. Thanks for update.

:hug:

[elleng]

23. Its great to hear from you,

and good to hear about your reception; SO nice of the limo driver!

Good luck with everything, including your walk! I lived in Chicago for 10+ years, and bought great boots and coat there at the time!

Thinking of you!

[auntAgonist]

24. You're only 4 hours from me right now but so far away..

I'm glad you're settled in and seeing all the Dr's you need to see. Things are sounding promising!

Looking forward to some positive outcomes for you.

:loveya:

kesha

[seemunkee]

25. Sounds encouraging

Attitude of your doctor is important. My mother switched oncologists for that reason and was very happy she did. Getting confirmation that your treatment was on the right track must have been good news. Keep positive.

[Uben]

26. It was cold here today, too, Longhorn

We had a wind chill here of 15 degrees this morning (I'm about 85 miles north of your home). It was chilly, but nice and sunny today! I'm glad you are seeing some promise at CTCA. As a person who is all too familiar with cancer, i am so glad you have chosen to take part in your treatment. Too many just assume their doctors are doing everything possible for them. You obviously know there are all kinds of treatments and approaches to cancer and the next doc might just be the one you have been looking for! Good luck and hurry home. Texas needs you!

[Longhorn]

27. UPDATE: Second day

We woke up to temps in the single digits but it doesn't really matter because we only spend seconds outdoors going from the hotel to the shuttle to the center to the shuttle to the hotel. :)

The only event scheduled for today was an orientation on the various services the hospital provides. However, I was also able to drop off prescriptions for refill at the center's pharmacy and get an appointment changed so that we can return Saturday instead of next Monday. Tomorrow, I spend the morning getting CT scans. The big news -- whatever it is -- comes Friday when the doctor presents her suggested treatment plan. I may also get a round of chemo on Friday, if it's in the plan, since I'll miss my appointment in Austin.

So far, my husband hasn't gone crazy with the inactivity. We were thinking of trying to take a train into Chicago tomorrow after my scans are done.

Thanks for all the supportive and positive comments! They mean a lot to me! :hi:

[JohnnyLib2]

28. Sounding good, hope the week continues like this.

Well, a few degree of warmth would be good, LOL. Thanks for the report.

[Ocracoker16]

29. Hope you can go to Chicago

It must be exhausting going around getting scans, having tests, and meeting with different health professionals. Sounds like you are handling it just fine. I'm sure that you are really looking forward to Friday when the doctor will bring it all together and make suggestions for a treatment plan. I don't mean looking forward as thinking oh this will be fun. I mean more that after doing everything you will be ready to get to look at the big picture. Whatever the outcome, I hope you can have some time for yourself when you return home on Saturday. You have had a busy week with travel, shuttling back and forth between hotel and hospital, doing all the tests, and talking with all the professionals about your cancer, your treatments, and unpleasant side effects. Do what you need to do for yourself. We are all interested in what you feel like sharing about your journey.

[noiretextatique]

30. i'm pulling for you, Longhorn

claiming all the best for you :hug:

[Longhorn]

31. UPDATE: Third day

I had a horrible afternoon and night yesterday due to pain from the radiation proctitis. So after my very early appointments for CT-scans of my brain, neck, chest, and pelvis, I sought out my doctor's nurse for advice. She had someone from the pain management department meet us after my physical therapy appointment (information about how to get started exercising at home.) The pain management person was wonderful and immediately got me prescriptions for a pain patch and oxycodone. I've never had such a quick response to a medical situation before!

Friday is still the big day for news. In the meantime, I'll meet with the dietitian, naturopath, and "mind over body" specialist (acupuncture, yoga, etc.) We'll head home on Saturday.

So far, I am impressed with the center. In some ways, it is very similar to M.D. Anderson and Texas Oncology, where I currently go in Austin. The biggest difference is having all the services under one roof and, more importantly, having a staff that is constantly making sure that my needs are being met, from the cafeteria to the doctor's office. The bottom line for me, though, will be the doctor's recommendation. It's possible that I could transfer my care to her and come up every few weeks or months for check-ups but get my treatment in Austin. We'll just have to see what she recommends.

Thanks again for caring about me! :hi:

[JohnnyLib2]

32. Here's hoping those meds give you a lot more control of pain.

I'm sorry to hear about the bad period & hope it's the last. Hoping, hoping here for some good plans. :pals:

[mwdem]

33. I hope you do get the pain under control.

I go to T.O. here in the DFW area (6 month checkups and bloodwork), and I've been very happy with my breast cancer dr., not so much with my gyno. oncologist, even though he's one of the best in his field. His attitude is that cancer will get me sooner or later. My breast dr. is a female, and she's so positive about my situation. I'm always having tests done, and I still feel like the other shoe is going to drop. I need to stay positive, and enjoy my life as much as possible. I hope this works out well for you.:hi:

[Longhorn]

34. UPDATE: Fourth day

Today I met with the nutritionist, naturopath, and "mind and body" specialist.

The nutritionist had the results of my blood tests showing I need more protein and Vitamin D. She also gave me materials on foods to eat, foods to avoid, etc. It was interesting but nothing groundbreaking, though I don't think anyone has ever tested me for nutrient deficiency before.

The naturopath made recommendations for supplements (some of which I'm already taking) to help me with my side-effects. I was expecting a pushy sales job (the center sells its own supplements) but it wasn't like that at all. We'll meet with her again Friday after the doctor presents her treatment plan because the naturopath will then recommend supplements based on my treatment.

The "mind and body" person was a little annoying. She was very nice but she just kept talking and talking. However, what I learned is that there is no one way for a person to find ways to relax and ease stress. She basically validated some of the things I've already been doing such as continuing to teach and recording episodes of The Andy Griffith Show because watching it makes me feel good. :)

They offer all kinds of classes -- acupuncture, Quigong, massage, laugh therapy, etc. -- that I might enjoy if I start coming here regularly for treatment. However, I now have an idea how I can put together my own activities at home.

At first, I felt like today was a day of fluff but then it occurred to me that subtlety isn't fluff -- in fact, I would have been very turned off it they had come on with a hard sale. But as I've said before, the bottom line will be what the doctor finds and recommends. I'm not sure these other services are worth the 1000-mile trip on their own since they are available to me locally. But this week still provided a good overview and introduction.

We're going to take the hotel shuttle to see Gran Torino. It's minus 4 outside and that's probably the high for the day! :scared: The pain meds are working! I slept great last night and feel much better today. :hi:

[Ocracoker16]

35. I hope you sleep well tonight

Tomorrow is kind of the day you have been waiting for. It will be interesting to see what ideas the doctor has about treatment having done a thorough work-up on you this week. I know that my mom's friend who went to CTCA was told that the CTCA agreed with her current treatment as well as past treatments. She felt more confident about the treatment she was getting after she got this second opinion. Have a good day.

[Longhorn]

38. I slept pretty well,

especially for sleeping away from home. Thanks! :hug:

[JohnnyLib2]

36. Huzzahs for the meds.

and many good thoughts for tomorrow.

[Longhorn]

39. Yes, the meds are really making a difference!

As a nurse told me yesterday, pain is very fatiguing!

Thanks! :hi:

[mwdem]

37. Let me know how you liked Gran Torino.

I want to see it. Have you looked into the center in Tulsa? It is a lot closer. It sounds like you're getting quite an education! Try to stay warm, and I'm glad the pain meds are working. Stay rested and positive!:hug:

[Longhorn]

40. We liked Gran Torino.

I thought it would be more of a Dirty Harry type movie but it actually focuses more on the relationships with very little violence. The R rating comes from the language but even the language is necessary to the plot. I don't know that it will win a lot of nominations or awards but Mr. Longhorn and I both enjoyed it.

The reason I'm going to the Zion center instead of Tulsa is that they accept Blue Cross Blue Shield of Texas at Zion and not at Tulsa. They accept me as an out-of-network patient but CTCA will bill at the in-network prices. We met several patients who also came to Zion because of the insurance situation.

Thanks! :hug:

[Longhorn]

41. UPDATE: Fifth and Sixth Days

I'm sorry for the delay. We didn't get back to our hotel until about 11 p.m. last night and had to be back at the center at 8 a.m. this morning.

I met with Dr. Williams yesterday and got my scan results. My brain and head/neck scans remain clear of cancer. Some of the tumors in my lungs are smaller and others are bigger. This seems to confirm the original Austin diagnosis that I have a mixed cancer made up of a carcinoma and sarcoma. The Taxol I've been getting since November may only be working on one kind of tumor. Dr. Williams recommended that I switch to a combination chemotherapy of Gemzar and Taxotere, both of which are commonly used for cervical cancer. The Taxotere is a newer version of Taxol. I will have the infusions over three days every 28 days and will have new scans after two rounds to see how it is working. This time, I probably really will lose all of my hair, something I've been prepared for since April! :)

So yesterday at 3 p.m., I had the first infusion plus a blood transfusion because my blood count was only 8.2, which is pretty low. This morning, my blood count had increased to 9.5. I had the second infusion this morning and will have the third infusion tomorrow morning. Then we will fly back to Austin.

I'm very pleased overall with my doctor and this cancer center. I got some information on diet, supplements, and exercise, which should help me to remain strong and feel good. The treatment schedule should fit in nicely with my teaching schedule and I've been assigned a care management nurse who is available to me 24/7 if I have any questions or problems. The center will pay for my airfare and transfers and a reduced rate hotel room. We will just have to pay for my husband's airfare. They even pay for our meals at the center, which are quite good. We feel very good about our decision to transfer my care here.

[elleng]

42. Glad to hear all the news,

all of which sounds good! Thinking of you along your excusion, and happy such a facility exists.

Have a good trip home!

[JohnnyLib2]

43. What a heartening report.

So glad to hear this news. Hope your trip back goes well. :hi:

[auntAgonist]

44. Thanks so much for this heartwarming update

I feel so hopeful for you. What a wonderful place the center seems to be! I will keep sending good vibes your way for a complete remission.

Have a safe trip home.

you are loved :)

aA
kesha

[Tracer]

45. Hi Longhorn ...

I had Taxotere on the "third" attempt to give me chemo (after the bad reaction I had to Carboplatin during the "second" round of chemo).

It seemed to me that Taxotere was a whole lot easier on my system than Carbo/Taxol. In fact, I can only think of ONE bad reaction -- and that one was pretty miserable:

-- I completely lost my sense of taste! Not only lost the sense of taste, but everything tasted awful!! And I mean really disgusting. I could only eat "white things" -- foods that didn't have much taste to begin with: Cream of Wheat, milk, plain yogurt.

Lost quite a few pounds on this diet :-(

Luckily, after about 2 weeks, my sense of taste gradually came back.

[Longhorn]

46. Thanks for the heads up, Tracer!

I'll watch for that reaction and it will help to be prepared for it.

I just finished the third round and I'm waiting for the limo to take us to O'Hare. Our flight doesn't leave until after 5 so we've got a long day of waiting but that's okay. It's nice to know I can feel like a "normal" person for the next 28 days -- no appointments except for weekly labs. :bounce: I took an Ativan a little while ago just in case I started feeling nauseas (I left my
Compazine in Austin.) I've already dozed off once and I feel another nap coming. :)

Thanks for the advice! :hi:

[seemunkee]

47. Best of luck with the new treatment

Sounds like you got out of the trip what you wanted and hopefully this new treatment will help.

[Ocracoker16]

48. Hope you are home now relaxing

How did the first round of the new chemo go? Chemo can be rough on the body. My mom had a lot of problems with nausea. She now takes 3 different drugs for it and that helps. I saw that you said that you would be losing all your hair. That sucks but atleast you have known for awhile that at some point in treatment you might shed your hair. I am just checking in. I will keep you in my thoughts and prayers. I am just so happy that you went to CTCA and found out that this chemo combination might work better than Taxol for your cancer.

[Longhorn]

49. I am resting, thanks.

I'm not feeling as well as I would like but it could be worse. My hands have turned red and swollen. Apparently, that's not unusual with this chemo. I'm also pretty tired but I got some work done today in preparation for classes beginning on Wednesday.

I'm trying to remain optimistic but it's harder when I don't feel that great. But I know I'll feel better each day and I'll have four weeks before another round! :)

It means a lot to me to know you're out there sharing this with me. I hope your mother is doing well, too. I've been lucky that nausea hasn't been an issue but I do have good drugs for it if it comes up. Thanks! :grouphug:

[JohnnyLib2]

50. Thinkin' about you.

"Feel better each day" -- nice thought. :hi:

[Uben]

51. Welcome home, Longhorn!

I bet it's nice getting outta that deep freeze, huh? You're gonna see warm days Wed. and Thurs. so you can thaw! LOL

Good luck on the new treatments and we all have our fingers crossed for you.

Uben

[JohnnyLib2]

52. Hello there--

How about an update from Texas? Hope you are doing well. :hi:

[Tracer]

53. Taxotere does cause redness.

At the very first infusion, my face turned bright red --- and stayed that way for a week or 10 days.

It looked like I'd just come back from a tropical vacation!

Take it easy --- we're thinking of you.

[elleng]

55. We were with you all the way.

Rest in Peace.

[Forkboy]

56. R.I.P. Kendra.

:cry:

[bicentennial_baby]

58. ...

:hug:

[noiretextatique]

62. ...

:cry:

[racaulk]

57. Rest in peace, Kendra.

:cry:

[auntAgonist]

59. so long to a beautiful soul.. You were loved Kendra. RIP

:cry:

I will miss you so much.

kesha

[mwdem]

60. Cowgirl up, sweetie.

This makes me so sad.....

[auntAgonist]

61. me too ... I can't stop reading these threads, thinking,

maybe it's a mistake.

:hug: :cry: :hug:


I really miss her already.


kesha