Back From M.D. Anderson

The visit to M.D. Anderson last week was full of pluses and minuses. It is never all good or all bad.  First, the scan results: Lungs showed some progression, but it appeared to be small – from 0.7 cm to 0.9 cm. Liver appeared stable.  So did the bone metastases on the CT scan, but the bone scan showed some progression – so we’ll say the CT scan is right! The primary growth is in the right adrenal gland and right ovary.  The ovary has grown from 5 cm. to 7 cm., or from about 2″ to 2.8″ for those of us who are metrically challenged.

Doc’s main concern is the ovary and the possibility of problems since it fills almost all of my right pelvic area. So I’m meeting with an oncologic gynecologist – or is it gynecologic oncologist? – on Tuesday back in Houston. This is to discuss whether he thinks surgery is a good idea. I think the MDA onc thought so, and the more I think about it, so do I. Let’s just say I’m beginning to think some of those possible problems he mentioned are already surfacing.

We then met with the Integrative Medicine doc (we really like this guy), who, among other things, suggested considering radiation on the right hip since I’m having so much pain with it. As long as I’m off chemo for surgery, this would be a good time.

So here’s the plan (assuming the doctor Tuesday agrees): surgery as soon as they can schedule it for removal of right ovary. Then some time during recovery, 10 radiation treatments on the right hip. My local onc said as long as you can get up on the table, you can do radiation while recovering from surgery. I guess that’s reassuring. Once that’s done, I start on a new drug called Stivarga, which is a pill. Yay, no infusion and no pump!

Finally, they have started the screening process for clinical trials. This is pretty cool the way they do it. They request tissue from my initial cancer surgery (that part’s not so cool), and test for genetic biomarkers that correspond to those identified in studies that are underway.  The latest thinking in cancer treatment is to genetically match treatment to cancer cells. I’m not sure what all that means, but it sounds good. 🙂 So, hopefully, they will discover some studies I qualify for, and if/when the Stivarga stops working, try those.

Whew! That turned out to be much wordier than I planned. But let me just tack on a couple of positive/humorous moments – there are always some. First, at breakfast in the motel, a young woman came over to me, and said, “I don’t want to be too forward and tell me if this is offensive, but you’re a cancer patient?” I was wearing my headscarf, so it was pretty obvious. Anyway, she was really sweet and supportive, a breast cancer survivor herself.  She assured me everything would be fine – I only wish I could share her total optimism. I also had several positive talks with other patients at the clinic – one a young woman who couldn’t have been over 30 with Stage IV colon cancer. (That’s just wrong!) She was very matter of fact about it all, even though she’d been through more drugs that I had, and at one time was on 15 different prescription drugs to control chemo side effects. (That’s wrong too!)

Humorous note – I was determined, based on the insistence of all of you, that I would use the wheelchair if/when needed. It turned out not to be needed. The long walk between buildings I was dreading was covered by a mini-shuttle that made it all easier on me and the husband.  However, there was still an entry in the Forget Your Foolish Pride Department – can you say barium enema?!

Then a couple of downer notes once I get home.  While at the local oncologist’s office, I stopped into the infusion room.  All of my nurse friends wanted to know  the latest and when I told them – basically what I just wrote above – you would have thought I was near death.  They all hugged me and gave me these sad faces.  I’d like to think that they just didn’t understand, but they’re oncology nurses.  Do they know something I don’t?

Second, I checked the patient notes from the visit Monday. The physician’s assistant posts them online within a day or two.  She commented that “we have very limited options at this point for treatment.” She also said re: clinical trials that “her options may be a bit more limited because of the KRAS mutant status.” Maybe not a big deal, but it brought up the possibility that none of the clinical trials will match.  Then what?

Well, got to stay positive, right? …Sigh… Bring out the Armitage files!!!


7 thoughts on “Back From M.D. Anderson

  1. Servetus

    Thanks loads for the update. Yeah, if you think you can stand the postop and they don’t think the radiation will affect the wound closure, get that ovary OUT OF THERE. That’s a fairly big growth.

    This is a totally anecdotal anecdote (obviously), but our experiences with the “how much chemo / radiation / infusion” suggest that a lot of time the therapies seem to involve relative overdoses of some kind because they simply do not know what or how much will kill it. (It has helped me to know that the professionals also often feel helpless.) So they say, standard of care is so many doses of X but maybe that’s 40 percent more than *you* really need so it works out if you don’t have quite all the doses. I sometimes wondered during mom’s last phase of chemo for ovarian cancer whether if they intentionally set the bar higher so people were more likely to push themselves through 80 percent of the required treatment.

    Hugging you virtually and so is fantasy Richard Armitage!

  2. katie70

    Thinking of you, and thank you for the update. Prayers and ((hugs)). Keep looking at those lovely pictures of Richard!

  3. Christine (msgigglepants)

    I don’t understand the medical terms except that it sounds difficult and exhausting and worrisome, so I am sending you massive quantities of hugs and love and cups of tea (or booze, lol) and delicious cookies, and walks or sitting (or laying in a hammock or whatever) on your favorite beaches, and puppies and kittens and everything that makes you smile. (sigh) I’ll even wish you the real Richard. THAT is how much I am sending you all good things. lol xoxoxoxoxoxoxoxoxoxooxoxoxoxoxox

  4. marieastra

    Thanks for the update. I am praying for you. As long as you have a plan, follow it. None of us can predict what will happen tomorrow. Sending positive energy and lots of hugs! On to the Richarding! 😀

  5. Bollyknickers

    Thank you for posting an update – I think we’ve all been concerned but conscious it is your story to tell ( or not) in your own time. you have had a lot to take in and, as usual with this thing called life, nothing seems clear cut or certain. If it was me I hope I would be channelling cautious optimism- because it sounds like there are options and it also sounds like you have medical professionals who are at the top of their field and are therefore well placed to get the latest treatments. But I might also fall into a heap every so often and want to lie on the floor kicking and screaming “it’s not fair!” Which I think is a perfectly fine reaction too.

    It’s a privilege to be part of your cheer squad. Thank you for sharing.

  6. Joanna

    Do you know what my sister in law used to say? “In general,nurses are stupid”..and she is a nurse;) Take care :*


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