Thursday, June 18, 2009

Definitely Having Chemo

Lou and I went to the Duke sarcoma specialty clinic for a second opinion about the proposed chemotherapy. We were both hoping to hear that chemo would not be necessary. Dr. Reidel at Duke was excellent. In fact, the whole experience of being there in Clinic 1B/1C was excellent.

Here are some of the things we learned:

Is chemo necessary for me right now? Yes, because the cancer has come back in multiple places. Chemo is the system-wide method of attacking the cancer. That is, you take the chemo, and it can attack any cancer anywhere. (In contrast, radiation and surgeon only attack the specific cancer you focus on.)

Is chemo effective on leiomyosarcoma? Yes. For leiomyosarcoma, 40% of patients receiving the Gem/Tax combo have a reduction in the size of their tumor. Now, reduction is a fabulous result; you're supposed to be happy if the tumor just stops growing. (Dr. Reidel confirmed what I saw on the web, that if there were no sign of cancer, then it is controversial whether chemo is effective as a preventative for future leiomyosarcoma. But alas that is not my situation.)

How rare is leiomyosarcoma? About 12,000 people every year are diagnosed with some kind of sarcoma, and about 2000 to 3000 of them are leiomyosarcoma. So, it is rare but not the most rare.

Why isn't surgery a good idea when the cancer has come back in multiple places? This is still hard for me to grasp intellectually, but the explanation we got today was that the surgery and recovery afterward wastes time before the chemo can start, and the chemo is more effective when the cancer is in multiple places because it is effective system-wide.

Oh! In case you haven't noticed, the visit was very pro chemo, which makes sense because Dr. Reidel is a chemo doctor! (A medical oncologist.)

Anyway, since chemo is defintely going to occur, I am planning on getting a cute short haircut at my earliest convenience. I can almost make a pony tail! I am so close!

I have saved the not-so-good news for last. Maybe some of you have already quit reading.

One of the things that Dr. Reidel did before he saw us was review all the scans that have been done recently. He told us that the MRI from May 27 mentions a 3 cm mass in my pancreas. Lou and I were floored. No one mentioned my pancreas to us!

So I had some homework today, to call my oncologist and my thorasic surgeon and find out what they know. I was hoping that they had already looked at it closely, determined that it is nothing to worry about, and just forgot to mention it to me...

I was scheduled for the lung surgery next Wednesday, but now that I have brought my pancreas to everyone's attention, that surgery is on hold. Turns out, there was no mention of the mass in the preliminary MRI report, only in the final report. Plus, this mass does NOT glow on the PET scan. Not all sarcomas glow, but my other spots glow "bright as light bulbs" (except for the two tiny ones, which do not glow). So it kind of got missed. Everyone is looking at it now however. No one knows what it is.

The thorasic surgeon will not perform the lung surgery unless I have a biopsy that shows this new mass is definitely not cancer. Someone is determining now if the mass CAN be biopsied. But we will have to decide if it SHOULD be biopsied.

Lou and I are leaning toward just going ahead with the chemo, forgetting about the lung surgery at least for now.


Karen said...

Wanted to thank Delpfine for pointing out a typo. Must protect my professional pride here with a tidy blog free of spelling errors!

Anonymous said...

Dear Karen, IMarie and I are so sorry to hear about the spread of your cancer. I don't imagine the is a heel of a lot we can do but if there is, let us know. Good luch.
Andy and Marie

Anonymous said...

speaking of typos!

Anonymous said...

Hi Karen,

I'm so glad you got your second opinion. Sounds like the new doc really is good since he found what the others had not. The downside of course being that he found something more in the first place and that you're going to have to go through chemo again.

Just know that I'm sending lots and lots of love and good wishes your way.

Carol Q.

Patti Gibbons said...

Karen; my daughter has LMS of the stomach and rectum. After chemo (gem/tax)and radiation (*they could not and would not do surgery per Sloan Kettering*) she has been NED for almost 2 years - there is hope.
Thinking of healing for you. :) patti said...

Hi Karen,
I am sorry to hear that you are going through so much right now. It sounds overwhelming. I am glad you have good doctors and lots of support from your family and friends. You are such a positive person and very much loved and I know that will help you get through this.
I keep you and Lou in my prayers and am sending you lots of good wishes.
Hang in there and please let me know if you need anything.
Mary Beth H.

Ned said...
This comment has been removed by the author.
Ned said...

Hi Karen :)

I am Praying for you, I Hope the treatments Heal you.

Ned C.

Beth said...

Hey Karen,
I was just thinking about you..sorry to hear about the new one in your pancrease. In my experience surgery and chemo sometimes don't mix to well cuz the healing from the surgery has to be complete..if you start chemo soon after surgery it's harder for your body to handle. I'll be praying for you...please let me know if you need anything.
Sending you much love,
Beth N.

Anonymous said...


I'm sure learning of the new spot on the pancreas was a blow. Still I'm so grateful that you decided to get that second opinion!! The universe is looking out for you for sure.

I know we're all ready and willing to support you through whatever it takes to make you all better.


Brian said...

Hi Karen,

You and Lou have a great time on your weekend getaway. Our thoughts are with you and call when you need me... You know the boys and I love you two - that of course includes Ginger.... Love, Cindy

Hey Karen!

It looks like I am number two on our double post attack! I am really sorry to hear about the latest news. I want you to know that I think of you and wish for your wellness everyday, and just to escape the generic message, I want to add that there is some good news, the new Harry Potter book is coming out, and a new movie is coming too, so there is something good to look forward to. Stay healthy, and stay awesome (though the ladder probably won't be hard for you). And if you need anything, just give me a ring- I will MAKE my professors understand!