It's time I said Howdy!

[Longhorn]

Some of you may have read my posts in the Lounge. Besides the wonderful support I've received, I also found out about this group, so I'm very glad I posted there!

I've been diagnosed with a uterine sarcoma that has spread to my lungs. They're still working on the diagnosis of the subtype. I've had four radiation treatments this week and will repeat in two weeks. If there's still bleeding, I'll do one more round. I'm waiting to hear about an appointment at MD Anderson in Houston (I live outside of Austin.) My doctors would like me to see a specialist there to design the overall treatment plan but I will likely begin chemo next.

The gynecological oncologist is rather blunt and said it is incurable. The radiological oncologist said incurable doesn't mean uncontrollable and yesterday he told me he thinks it's curable. It will depend on how it responds to the chemo. The good news is that it does not show up in my brain, lymph nodes, or other organs. My insurance -- Blue Cross Blue Shield of Texas -- has been cooperative so far except they denied the PET scan.

Turns out the not knowing phase was easier than the knowing -- who knew? :) But I'm learning that there is always something to wait for -- the latest test results or reaction to treatment or seeing the next doctor. I didn't use to think of myself as a patient person but I guess I am now.

I appreciate this group because I know I'll have a million questions as things come up. I'm still getting used to the jargon at this point! How long does it take before we get our medical degree? ;)

Take care, y'all!

[ulysses]

1. hey, glad you made it down here.

:hi:

Keep us looped. Questions are good. :)

[Longhorn]

2. Right now, I'd like to know how to stop the itching

at the radiation site! :(

Thanks for the welcome! :hi:

[flamingyouth]

3. Glad to see you found us down here.

I hadn't read your post in the Lounge, so I'm sorry to hear about your diagnosis but we're all in the same boat in one way or the other here. I hope you'll continue to keep us posted about your progress and ask questions when they arise. I have gotten so much support here when I've needed it. Keeping you in my thoughts. :hug:

[Longhorn]

4. Thanks!

I'm learning more each day how to control my emotions about all of this. It looks like a lot of this is a waiting game so I need to get used to it. :) :hug:

[Imalittleteapot]

5. Damn Blue Cross!

When I was diagnosed with breast cancer the surgeon told me that some insurance companies would not cover the PET scan she wanted me to have. Fortunately, mine did. I would have thought that a reputable (?) company like Blue Cross would cover a PET. I was more terrified of the PET results than anything else during my journey through this cancer thing because I was told that it reveals small spots of cancer that can't be seen otherwise. I was lucky that time.

I know of 2 people that have undergone radiation and chemo for lung cancer and both are CLEAR of cancer today. So, stay strong!

My heartfelt wishes are coming your way from Ft. Worth.

[Longhorn]

6. Thanks for the encouragement!

I think I'm most afraid of how the chemo will affect me, whether I'll be able to keep working. As an adjunct, I don't get medical leave. I don't have to teach during the summer in order to still be hired in the fall but I'm afraid that since I'm never guaranteed a job, the college could just decide to drop me. Fortunately, I belong to the union and have a pattern of being assigned at least two (usually three or four) classes per semester and one to two classes in the summer so we could make a pretty good case for discrimination. I just hope it doesn't come to that. The people in my department seem to be good people and the chair is a cancer survivor so I'm probably just worrying too much. :)

[pecwae]

7. I'm glad you found us

but sorry about the reason. I have BCBS federal and have never had a problem with coverage. I get PETs twice a year to follow breast cancer and thymoma. The bad part is that they're so sensitive other things show up and it gets a bit worrisome.

I went through radiation and 9 chemo infusions. I felt worse from the radiation if you can believe that!

I know some 'incurables' who are still very much with us and doing well, so please take heart. All of us are here for you, so never hesitate in asking questions.

:hug:

[Longhorn]

8. I hope that's the case with the chemo for me.

The radiation hasn't been that bad except I'm just so tired! I'm also tired of waiting on an appointment at MD Anderson but apparently there's a big conference going on this week which my doctor is attending and so are many of the MDA doctors. The nurse said my doctor may be conferring on my case while she's there. I hope so!

I hope you're doing well! Thanks! :hug:

[Uben]

9. Hi Longhorn!

I'm a fellow Texan! I live north of Dallas. Sorry to hear about your diagnosis, but they are making graet strides in treatments. MD Anderson is the best, so you'll be in great hands there. My wife is a 5 yr survivor of breast cancer. I am not familiar with your particular cancer, but I say never give up. Sounds like you have the right attitude! If there is anything I can help you look up or research, just ask. I've had quite a bit of experience now. WHen my wife was diagnosed, I studied her particular type of cancer day and night (so did she}, to keep my mind from wandering. I know you understand that. It sure helps you make choices when you actually know what the doc is saying when he/she starts rattling off those long words. Understanding what you have and what can be done, and what has been done, can give you something to look forward to. The best of luck to you, and keep us informed how things are going!


Uben

[Longhorn]

10. Thanks, Uben!

I don't know if you saw my post in the Lounge (also in my journal) but I finally have an appointment at MD Anderson on April 1 and they now believe it's a carcinoma rather than a sarcoma. I still don't know my prognosis but should have a better idea soon.

I'm so glad your wife is doing well and certainly hope for the same success! Thanks so much for your offer of help. I will certainly be back with questions once I know what to ask! ;)

:hug:

[JohnnyLib2]

11. Thanks for the update in the Lounge.

Best wishes over here, too. :pals:

[Longhorn]

12. Thanks!

The support means a lot, as you know! :hug:

[Redbear]

13. Prayers for you Longhorn.

Keep us updated.

Is your MD Anderson doc a sarcoma doctor?

[Longhorn]

14. Since I first posted,

the diagnosis was changed to a cervical carcinoma, according to the MD Anderson pathologist. However, the Austin pathologist believes it is a mixed tumor (sarcoma and carcinoma.) Due to the MDA diagnosis, I saw the gynecological oncologist instead of the sarcoma doctor. I start chemotherapy tomorrow -- cisplatin all day tomorrow and then topotecan on Friday and Saturday, about an hour each day. I go back for a shot to help my white blood count on Saturday. I'm getting a chest x-ray tomorrow and every three weeks when I have chemo. If the tumors in my lungs have grown, they will switch me to cisplatin and taxol, which my doctor believes could be more effective if it is a mixed tumor.

I'm also finishing up radiation this week and at the examination today, my Austin doctor said that the tumor had noticeably shrunk, so I am encouraged. Now we'll see what happens with the chemo.

Thanks for thinking of me! :hi:

[JohnnyLib2]

15. Shrink that sucker!

Every best wish.

[Longhorn]

17. Doing my best!

Thanks! :hug:

[flamingyouth]

16. Thinking of you!!!

Holding all good thoughts for you while you do chemo. Wonderful news about the tumor shrinking! :woohoo:

Be good to yourself. :hug:

[Longhorn]

18. Thanks!

I promise I'm not reading too much into this but I will enjoy every small victory I encounter! :hug:

[Tracer]

19. Hi Longhorn ...

... I read your post in the Lounge regarding controlling nausea with marijuana!

I can't help you with that, but I might suggest that expecting to get sick might be a self-fulfilling prophesy.

Not everyone who is having chemo gets nauseated, myself included. I've had many rounds of chemo - two years apart - and never even felt queasy - Carboplatin, Taxoll, Gemzar, and Taxotere (they are throwing everything they can at it!)

My final chemo is tomorrow.

[Longhorn]

20. Thanks!

I really have made up my mind not to have side effects ;) but do want to be prepared so that I can keep teaching. The meds they prescribed apparently can knock me out -- not a great way to teach! :D But I'm probably "borrowing trouble" here and should just wait and see what happens.

We'll both be getting chemo tomorrow! Mine is the last of the first session. I hope yours is the last that you'll ever need because you're through with cancer! :hug:

[pecwae]

21. Continued best wishes

and good vibes. Great news about the shrinkage!

[Hawkeye-X]

22. As we Jewish people say.

We wish you a Refuah Shelemah. :hi:

[Longhorn]

23. Thanks!

I'll do my best! :) :hug:

[Longhorn]

24. Update.

I've occasionally updated in the Lounge but upon rereading this thread, I realized I haven't updated here.

Yesterday, I finished my fourth three-day round of chemotherapy: cisplatin and topotecan. After my next round on July 1, 2, and 3, I'll have more CT-scans of my pelvis and lungs. The last scans done after my second round showed no sign of the tumor in my pelvis and much-reduced tumors in my lungs. A lymph node next to my uterus in which they suspected a tumor was half its previous size. Also, my cervix, which was horribly covered by the tumor before treatment (I've seen the photo!) is now pink and normal. So the obvious good news is that the cancer is responding to the treatment. If this continues, I could end with six rounds but we'll have to see.

I've been doing pretty well with the chemo. I generally have it all day on Thursday and a couple of hours on Friday and Saturday. I get a substitute teacher for Thursday and I don't teach the other days so I have time to rest. The anti-nausea medicine (Emend and Campazine) are working pretty well. I only experience some nausea after the first round and learned to take the Campazine earlier. In fact, this time, I started taking it on Friday because I was beginning to feel a little queasy. I'm pretty weak and tired until the following Wednesday but have been able to go back to work on Monday or Tuesday. This time, I decided to have a sub tomorrow because the last time, I returned the day after Memorial Day and was still feeling a little puny.

My side effects have been relatively mild but I did have an outbreak of folliculitis, an infection of the hair follicles, last weekend on my upper legs and went to the ER because I was afraid it was shingles. I've been on antibiotics and saw a dermatologist who confirmed the diagnosis. It appears to be clearing up.

I didn't lose my hair but it thinned quite a bit so I got it cut very short. Most of the thinning occurred about three to four weeks after my first round and it hasn't seemed to get much thinner. One benefit is that I no longer have to shave my legs! ;)

My doctor, who wasn't particularly encouraging in the beginning, is now very excited and even emotional about my progress. She's even making comments that maybe I'll be one of the women who beats this thing. However, I realize that it is likely to come back and that each recurrence can get tougher. I'm optimistic that I can hang around until they come up with a cure!

Thanks for letting me share. :hug:

[mwdem]

25. Hey, Longhorn!

I haven't been around too much lately and just read your post. It sounds like you're doing great with the chemo (maybe not great, but you're handling it well), and congratulations on the shrinkage and disappearance of the tumors. I'm going in for my mammo. this afternoon (I have one booby left!), and I can't wait to get it over with. Keep on kicking and stomping!:hi:

[Longhorn]

26. I hope you get good news!

To me, every good scan is like renewing the lease. ;)

[mwdem]

27. I'm back.

Everything's looking fine, thanks!

[noiretextatique]

28. hi longhorn

this is not a club that anyone wants to join, but welcome anyway. glad to hear you are doing well with the chemo and defying the predictions. hang in there, and keep us posted. :loveya:

[Longhorn]

29. Thanks, noiretblu!

You're right but it sure helps to share with others who know what this is like. :hug:

[Longhorn]

30. Anyone have a PET scan?

My doctor wanted me to get one when I was first diagnosed but my insurance company denied it. Now that I've completed six rounds (18 infusions) of chemotherapy, she wants me to get a PET scan to see if the spots showing up on the CT-scan of my lungs are cancer or just scar tissue. It will also help us see how much active cancer is still in my pelvis. So far, the insurance company has approved it.

The CT-scan and MRI showed a great reduction in the tumors: "Excellent response to treatment," is how the radiologist put it. So I'll have the PET scan in two weeks and then see the doctor the next week to see what to do next.

In the meantime, we're going on vacation! And I'm excited about getting a break from chemo! :hi:

[Tracer]

31. Hi Longhorn ...

I've had a PET scan (actually a CT/PET scan).

It was last October, just prior to the operation to remove the tumor that had wrapped itself around my left ureter.

It takes about a half an hour to complete. Rather than the CT "doughnut" setup, it is a long tube. I was sent through the tube backwards and then sent feet first through it in stages, about 6" at a time --- each pause taking about 4 minutes to complete.

Since I was outside the tube for the bulk of the procedure, there was no claustrophobia. The only discomfort was having my arms way up over my head for the entire time. It's a bit noisy. Think jet engines revving up.

Actually, just last Monday, I had a CT scan to check on my progress after my last chemo in April. Unfortunately, I'm kind of left hanging again. The radiologist claimed that he saw two 1 millimeter "spots" in my abdomen (the size of a pinhead!).

But my oncologist examined the scans and said that he honestly couldn't see anything, and thought that the radiologist was overanalyzing the scans.

So. I either have 2 "spots" or 0 "spots".

[Longhorn]

32. Thanks for sharing your experience!

I certainly hope your oncologist is right but I'm sure they'll do a follow-up. Congratulations on completing chemo! I hope I can say that soon!

I haven't found myself feeling claustrophobic in those machines in the past. I heard the PET could take up to 90 minutes so that didn't sound so appealing. Maybe they're including the prep time.

Let's keep on keepin' on, okay? :hug:

[Tracer]

33. Prep Time.

I forgot about that!

They inject you with radioactive glucose and then make you wait for an hour for it to distribute around (I guess).

I took a nap while waiting.

So --- yes, the whole procedure takes 90 minutes.