bunny
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Hi everyone. I hope your holiday preparations are joyful. I'm not feeling the Christmas spirit today but hope to have regained it by tomorrow.
We spent a 9 hour day at Sloan yesterday, meeting with mom's oncologist and new radiation oncologist. At the early appointment, Dr. Kris thought she might have a blood clot in her leg and sent her for a doppler (negative) which is is why the day turned into a marathon.
To recap, she has a cluster of small lesions on her cerebellum and one 'spot' on her spine. New information she recieved yesterday is that there is another area of concern on her spine and a another small lesion near her right temple.
The plan is 14 treatments of whole brain radiation over a 3 week period starting next week. They will do SRS on any remaining lesions after the WBR is complete, and will decide what, if anything, to do for the lesions on her spine as her treatment proceeds because right now they can't tell if her left-side weakness is part of her post-op deficits or related to the lesions on her thoracic spine. Some of the treatment plan regarding her spine is also contingent on what they find in a lung CT scheduled for January 12. Assuming she has no disease in other parts of her body, the doctors seem confident that the WBR will serve her well.
In order to make decisions about treatment, Suki pressed for a prognosis. I know how many of us feel about that here, but for her it was important to get an answer to the question, as she puts it, "what will this get me?" In other words, she wanted to know what they hoped to achieve with this treatment plan. I think we were all a little surprised to hear that 6 months to a year of survival is their best hope for her, based on the average response they observe. We all expected something more like 1-2 years. I'm sorry if my posting this upsets anyone here, but I have never kept anything from you guys. Anyway, we know it's just an average and we have every expectation that Suki will, as usual, surprise everyone. So she's going ahead with the WBR and will make additional decisions as they come. Still, it's not an easy thing to hear.
So today I am sad and grumpy. And tired. And weak. Tomorrow I will have a great day doing my very last minute Christmas shopping and giving Suki a beautiful Christmas. We're all bouyed by Levi -- he is joy in a little living, breathing, talking, running and Christmas-tree worshipping package and easily the best thing that ever happened to any of us. Whatever ultimately happens, I derive immeasurable gratitude from the fact that my mother has survived this disease long enough to meet her first grandson.
But today I hate everything, especially lung cancer. I do love all of you, though, and know that your prayers and thoughs have sustained us all these years and continue to do so.
Amie
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12/3 UPDATE - True to form, Suki came through brain surgery like a walk in the park. She was passing mental acuity exams an hour after they woke her up and wiggling all extremities. She had a fever that needed to be watched closely but never went dangerously high, and is now gone. She feels pretty good, but for a headache (I'll say!) and her spirits are high. We all note the difference between how we feel after this surgery than we did after her lung surgery: we know this is only the beginning of this leg of the race, it's not quite as satisfying. Still, we're thrilled she came through so well, the biggest tumor is gone and she's healing well. She should go home Friday. Then, in two weeks, they will start stereotactic and whole-brain radiation.
Thanks for the prayers, they did the trick I am sure.
We'll keep in touch. I am trying to work as much as I can now while she's in the hospital so I have days to take when she's home and feeling bad from rad. or chemo. Because this is a new job for me, I am not yet eligible for FMLA so I have to use sick and vacation. Love to all of you.
xoxo
bunny
I would like nothing more than to give you good news this Thanksgiving, but I can't. The final tally is one large tumor in her right lateral ventricle, 3 small lesions on her cerebellum and 1 lesion on her spine. We're devastated but looking forward, if only in small increments. After much soul searching, Suki has opted for surgery on the large tumor this Tuesday. The recommended course of action will then be gamma knife to the lesions on her cerebellum, followed by whole brain radiation and chemotherapy. She's making decisions in stages; right now, she is committed only to Tuesday's surgery. Her spirits are pretty good and she feels better than she has in 6 weeks thanks to Decadron bringing down the swelling in her brain. She came home in time for Thanksgiving dinner with her kids, our spouses and her grandbaby Levi. As lost as I am in this new world of brains, the time I've spent here seems to have given me enough of the lingo to at least follow the discussion. So thanks. And thanks for your prayers. We still need them, tenfold.
Love always,
bunny and family
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I am signing on from my new job -- a big no-no -- because we just learned that Suki the One Lung Wonder has a mass in her brain. She is on her way to Sloan Kettering now. The mass came after a month of headaches, nausea, leg weakness and blurred vision that her GP attributed to "viruses", but her pain in the you-know-what daughter insisted requried a scan. She had the MRI on Friday and these are the disappointing results. We're praying it is something other than mets, and something easily treatable. All we know is that it is one mass in the center of her brain, and that her brain is swollen. I know I am absent from here, but I also know the love and power of this place is unconditional. So, for Suki, if you could add her to your prayers, we would deeply appreciate it. Of course, I will come back and post when I have more information.
Thanks.
bunny and family
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Hello, beautiful soul. I just learned of Alan's death moments ago and my heart aches -- for your loss, and for all of ours. I know what a light he was in your world and others. For once, I am at a loss for words. I know we aren't in touch as we once were but you've never been far from my thoughts. I am comforted by your description of his passing and wish continued peace for you, Deb.
xo
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you are like a rubber ball, you've bounced back so often and so well. admiration, as always.
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ha, wow, she really does!
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beautiful tribute, terrible loss.
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hi all. I've been reading but not posting and you all continue to amaze, inspire and move me. I wanted to update you on Suki's health because I know how helpful it was for me to read of others' experience.
first and foremost, she remains NED. at her last scan in December, her onc. noted some "wear and tear" on her lung and referred her to a pulmonologist. the new doc seems great and very thorough. he found her SOB marked - part of the downside of being as tough as Suki is is that she sometimes bullies through things she could get help with - and did a walking test. well, after only 6 minutes of walking on the treadmill her O2 sats went down to 82!!
so he recommended supplemental O2 24/7. we, especially Suki, were all dismayed at first. I think we all felt like we had really "gotten away with it". then, she spent her first day on O2 and felt so much better than she has in so long! so now she's using it - not quite 24/7 but definitely when she exerts (including walking) or goes into a respiratorily (is that a word?) challenging environment, like a construction area (which she doesn frequently for her work).
so I think she's adjusting to the idea. it's still a pretty remarkable outcome for a 7+ year survivor of stage IIIb NSCLC, and we remain proud as ever.
Irish eyes were laughing hysterically on Monday:
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so glad you're on the mend, Jackie. xo
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we had a very nice Christmas. small, quiet as usual...with the major addition of baby Levi, of course. he was the star of the show.
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I truly, truly hope he gets some pain relief ASAP. stay strong. you're both in my thoughts.
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another great update for Suki - no evidence of disease. there was "something" on her CT that initially sounded scary but the doctor explained that it was likely inflammation or scar tissue from an infection or "wear and tear" as he put it. he said in no way did it resemble cancer, but that it certainly explains my mom's increased SOB over the last few months. he thinks she may have had a bronchitis she thought was just a cold. so she'll need some therapy with a pulmonologist for that, but still no sign of the beast returning.
as Dr. West said, Suki's onc. confirmed that taking her off Tarceva is intended to 'save it up' in case she ever needs it in the future. he is keeping her on the 6-month plan to monitor the inflammation (he had said last time that she'd go to a year if this scan was clear) but we're all happy about that.
all is well, otherwise, though busy with work/motherhood/wife-ness/moving, etc. I haven't upload our Christmas pictures yet, but here's what I get to come home to every night...what could be better!? Happy new year, everyone. Peace and health to all of you.
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I am so sorry to read this update, I had hoped he'd get out in time for the holiday. stay strong, both of you, and let us support you along the way. prayers and positive energy continues.
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I hate, hate, hate to read this. I am so sorry Alan has to fight some more. I hope and pray that the treatment won't be too terrible for him and, above all else, that it works.
xoxo
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Wendy, they've actually already stopped the Tarceva. her last Rx finished in Sept. and they told her not to refill. So this week we'll get to ask more questions, but she's already off it - which may be why I feel a little squirrely-er than usual going into this appointment.
Thanks, everyone, for responses. In a nutshell, Dr. West said the concept behind stopping Tarceva is to avoid having the cancer become resistant to it. I guess, in theory, if she has growth they could start her on it again. She has had no sign of disease since her first post-surgery scan in 2005 (surgery in June, scan in Sept.) so we're essentially talking about proving a negative here.
Ack. My head hurts. LOL
I will keep you all posted, for sure.
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Of COURSE you're finding it difficult. It's terrible, having to bear all of this bad news. Prayers and meditations continue to come your way. I am so sorry for this latest hurdle. My mom had pneumonia within a couple months of losing her lung, I know how scary it is.
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How terrible. It's a horror when any of us lose a loved one to this terrible disease but...that poor little boy
. Prayers for the family. -
I just want to concur with what Ned said, that it sounds like a pleural effusion. Fluid *in* the lung would be a pneumonia, which my mom had after surgery. I encourage you to ask the doctor, though. Sometimes they forget that it's a foreign language to us when our family members are newly diagnosed.
I remember when my mom was being treated emergently for a blood clot in her lung, I was horrified to hear the nurses say that she had a pulmonary embolism. I was like, oh no, not that, too!? It's the same thing, turns out.
Good luck with the rest of it, and I know what a relief it is to feel like a plan is in place.
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thanks. I reposted on onctalk before I saw this, but what you say makes sense. I'll head back over there and see what Dr. West has to say. it struck me as a 'if ain't broke don't fix it' scenario. thanks again for your responses, all.
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So Suki's onc has stopped her Tarceva for no other reason than she has been on it for 2 years and they
'have no data' for patients on it longer than that. I asked the question on onctalk but didn't get a response (or I don't know how to find it!
). Has anyone else heard of this? We're seeing the doc for her 6-month check next week so I will ask him, too, but I wondered whether anyone else has heard of this. She's been NED since her surgery in June 2005 and Tarceva is the only drug she's recieved. -
sounds like your dad is making good decisions and has lots of support from you. my mom couldn't have chemo at all due to complications from surgery but has did well on Tarceva for 2 years.
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prayers and best wishes for the PET scan. and I share your frustration with the short shrift LC often recieves. it's not right.
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I remember mine so well, more for the first response I got...
I was out of my head with fear and questions, and Patkid told me to 'come in and rest a spell'.
it was like coming home.
. Prayers for the family.
). Has anyone else heard of this? We're seeing the doc for her 6-month check next week so I will ask him, too, but I wondered whether anyone else has heard of this. She's been NED since her surgery in June 2005 and Tarceva is the only drug she's recieved.
Two questions about WBR and radiation in general
in NSCLC GROUP
Posted
Despite having been diagnosed an amazing 8 years ago, this is my mother's first experience with radiation. We have a couple questions for the Wise Ones here:
1. We learned today that they suspect some of her leg weakness is being caused by the lesion(s) on her spine, and so they plan to radiate there as well as her brain. We are desperate to get them to do it on days she is already going in for WBR - 14 days/treatments in a row, with weekends off. Is this a reasonable thing to push for? Is there any reason any of you have experienced that they won't agree to do her WBR and spine radiation concurrently?
2. The neurologist we saw today (Dr. Posner at MSKCC, who is making the recommendation that she receive RT to her spine) said that NSCLC "doesn't respond that well to radiation." What did he mean by that? Mom's neuro surgeon, oncologist and radiation oncologist seem confident that radiation will accomplish something. Seems like a mixed message, albeit from different specialists' points of view.
Thanks for any information.
Amie