Big Ears (part one), and (somewhat) Bigger Lesions

It strikes me that I promised this blog would be something about me, and also something about my cancer.  I’ve lagged behind on the ‘me’ part and only been filling you on on the cancer trenches.  So in this post I’ll let you know about my new cancer news, and then some not-about-cancer news.   Yay!

First, the April 1st, non-foolish info.  Bloodwork, radiation oncologist, medical oncologist, therapist, and home nurse, April 1 was everything but the kitchen sink for medical appointments.  As usual, I went loaded with questions.

The size of the right iliac lytic metastasis has increased, by about 5mm.  (the numbers are teeny-tiny on the measurement page of the computerized CT scan.  Even the rad onc had a hard time with it).  It’s a small numeric increase, but the big six-week difference between January 29 and March 13 is that there’s now NO bone there.  Just a hole.  Which probably explains why it hurts a whole bunch more.

All the docs were ‘unsure’ whether it would continue to increase (eat through neighbouring bone and soft tissue) at the same rate.  Lytic lesions do grow quickly, and it’s too soon to tell if the Sutent and/or radiation have/will slow this one down any.  One two-week round of Sutent may not tell the whole tale. A full CT scan with contrast dye may help with this question.

The lung lesions, from the March 13 scan, have not grown in size, but are all stable, even the new ones.  Again, we wait to see if Sutent is going to work again on those dudes.

Dr Canil will ask the orthopaedic people if it is possible, since radiation has not been effective in reducing pain, nor in stopping the lytic lesion in its tracks, to pursue cryoablation to the right iliac metastasis followed by cementoplasty.  (Kudos to Linda for this treatment suggestion).  I’ll stay on Sutent for now.  She’ll take a look at my medical journal article from 2014 that says that patients on Sutent showed little benefit, and had a whopping 29% risk of osteonecrotic jaw, on biphospanate drugs (usually given to help bones regrow, with a usual 5% risk of that scary side effect. Really, do yourselves a favour, don’t Google image that one).

My restrictions, given that the bone has already broken all the way through, are just to do what I can ‘as tolerated’. Meaning, if it causes me too much pain, don’t repeat.   Yeah, with full medical authority behind me.  There’s no ongoing or current concern about risk of fracture to the right lower back hip, because it’s already fractured.  So, that’s our take-home ‘good’ news.

I suppose also good news; when I asked again, whether the outside survival for patients with visceral as well as bone metastases was 15 months; my oncologist said, it’s hard to cap it there.  We have to see if Sutent will again work for me, as it worked really well before.  She said, she’d likely put my survival time now at anywhere from 18-24 months.

It’s kind of nice, but also kind of not-nice, when you finally have a medical person who gives you your survival time in numbers.  I’m feel that I am going to mull this awhile.  Not right now.

More cancer news:  I had my first day/visit at the May Court Hospice on Thursday.  Was not sure what to expect.  I had a good time.  A volunteer driver picked me and another patient up and drove us there.  Was greeted by many more volunteers, and given a tea and a walker, and had nice intro visits and chats.  Then into the art room, where the art teacher got me drawing with charcoal.  Kept at this for a couple of hours’ time.  It is nice to really get outside your head and your illness and just be creative.  Harder to get distracted by things need doing, like I can do at home.

There is a ‘happy hour’, where people stop and have a drink before lunch.  A really good young pianist came and played, people sang along, and we had a nice conversation about favourite musicians and composers.  Everyone sits down to a light lunch; and then another pianist came for the afternoon.   [I was worn out and nearly fell asleep in the sun listening to her, I have to confess].  I’m really looking forward to going back next Thursday.

I operate the uranium refinery at Oak Ridge

I operate the uranium refinery at Oak Ridge

OK, now for the non-cancer portion of our program.  It turned out that the young pianist’s favourite current performer is Sam Amidon.  He was thrilled to hear that I was recently returned from a festival where Sam Amidon had performed.  Regis and I travelled last weekend to Knoxville, TN, for the Big Ears festival.  http://bigearsfestival.com/.

I was excited to see some favourite performers, and to find new favourites.  Prior to the start of the festival, we enjoyed a quick visit to the ‘Secret City’; the town of Oak Ridge, on the outskirts of Knoxville, the site of the 75,000 strong workforce which built the atomic bomb.   Regrettably, our GPS provided us with less-than-accurate advice; suffice to say that a lowlight of the trip was initially improperly entering the ‘live’ US Nuclear Agency site, and having ‘Don’t come back’ hollered at us as we beat a hasty retreat.

On to the festival, which opened at the Knoxville Art Gallery.  A fine afternoon at Knoxville capped off with a visit to the modernist collection, followed by the first notes of the festival.

Knoxville Gallery.

Knoxville Gallery.

The only difficulty we had with the festival was our inability to clone ourselves in order to be more than place at once, and see everyone and do everything there was to do.  We did our best, though!  Further reports and more, in my next blog post.

Bu-Bye for now!

Bu-Bye for now!

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One Response to Big Ears (part one), and (somewhat) Bigger Lesions

  1. Linda says:

    Mary, so good to hear you had a wonderful trip to Knoxville! I think everyone wants to know…..how long, but please remember those often are only really “guestimates” based on median survival records as opposed to averages…those numbers do make a difference. Everyone is so different in how they respond, or don’t, and with the plethora of new immunotherapy drugs and some wonderful clinical trials using these and combos of treatments, there is still so much hope for many more years. Never give up hope…….

    After Ken had the initial cryo/cement, he still had a bit of pain in one spot so was able to go back and have just more cement done…that really did the trick. I’m hoping that this treatment is an option for you and wishing you much success with it.

    Linda.

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