Update on Faith and Hope - 1249178

blue skies
Posts:69

Our dear sister, Jing, continues to suffer from extreme fatigue following a series of whole brain radiation. She is still taking pain medication as the bone mets in her spine also heal from radiation treatments. She expected today would be a hard day for her -- she left home out on Long Island to travel to NYC @ 7am to have a brain MRI, then see her radiation oncologist, get a chest x-ray, and then see the lung doctor who put a drainage tube in when she was hospitalized for extreme shortness of breath last Thursday/Friday.

In an email to me, Jing said, “It will be a whole day event. I will be tired, in pain and have swollen feet. I have to do what I have to do.”

Tonight, she reports what sounds like a successful day. The lung doctor suggested that the drain be left in one more week. If the fluid is less than 50ml, he will take the tube out the following week.

The scans of her spine and brain MRI came back good. No sign of cancer. But she still has bad back pain and the doctor thinks the bone cement did not do as expected. He is now suggesting that they insert rods to stabilize the area.

Jing told the doctors that she was scared by this idea (by the way, not much scares our girl, Jing, but she has been in tremendous pain and feeling exceptionally tired and weak for maybe two months now). Tomorrow the medical team (at MSKCC) will have a routine meeting and the three consulting doctors will be there to present her case.

Jing says that she will ask her friends and coworkers to search for more information on the spinal rod procedure option for her. .What better place to start to ask for insight than right here at GRACE!

Please continue to keep Jing in your thoughts…as I know you do every day. You are all certainly in hers.

And, Laya, know that you and your mother and entire family continue to be in my thoughts as well. Hopng for good results to come...you just never know!

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Reply # - October 17, 2012, 07:16 PM

Dr West
Posts: 4735

I'm so sorry to hear of her ongoing problems. We miss her presence here.

In these situations, I typically defer to the surgeons on what is advisable, and I would not hesitate to pursue placement of the rods for stability if it is felt likely to be helpful.

I've had patients who did this, and I put it in the category of "you do what you need to do."

-Dr. West

Reply # - October 17, 2012, 07:22 PM

njliu
Posts: 142

Hi Blue Skies, thanks for the update on Jing. I am sorry to hear about the challenges she has to deal with now. She has impressed me as courageous and knowledgeable in dealing with this dreadful disease. Please convey our best wishes. We look forward to her feeling well enough to post at GRACE again.
NJ

Reply # - October 17, 2012, 09:34 PM

laya d.
Posts: 714

Hi blue skies:

Thank you so much for the update and please let jing know that I think of her often and am wishing her calm and comfort.

Also, thank you so much for your kindness and well-wishes for my Mother. I am so grateful for the likes of you.

xoxo,
Laya

Reply # - October 17, 2012, 10:56 PM

ssflxl
Posts: 204

dear blue skies

thanks for the update. I am so sorry to hear about Jing's difficulties, but glad to get some news on her. Please send her our best. I am sure that if she gets the rod to stabilize her spine, she will do just fine. we look forward to her posting on this site again.

ssflxl

Reply # - October 18, 2012, 01:40 AM

certain spring
Posts: 762

Blue Skies, thanks so much for the update. I sympathise so much with the fatigue Jing is struggling with. I used to sleep for hours in the daytime, to the point where the day vanished. But it did get better.
I'd like an update on you too, please, when you feel like it?

Reply # - October 18, 2012, 02:53 AM

blue skies
Posts: 69

I am on the early bus from Dc to Sloan kettering in nyc to try and enroll in MEK or antiPD 1 trial. Will know more later today

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