Thread: Just a quick word about the Brain Hospice timeline
Just a quick word about the Brain Hospice timeline
So, I’ve recommended the brainhospice dot com symptom timeline as a reference point to others in the past. I’m not finding it very accurate as we wind down.
At this time it is about six weeks since my sister fulfilled the timeline’s descriptors for 2 to 5 days left, and for roughly two weeks she’s fulfilled the descriptors for just hours .
I knew the top of that timeline was kind of iffy but now I’m finding the bottom is too.
Thank you all for your good thoughts and kind wishes. I send ’em back atcha.
Top User Join Date Jan 2013 Location Central Wyoming Posts 720
This process must just be so heartbreaking for you. God bless you, pal. God bless your sister.
64 yrs old
March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
3 rounds of CHOP unsuccessful.
Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
Autologous bone marrow transplant in November of 2012.
17 radiation treatments for consolidation purposes between Dec. 26 and Jan.17.
100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
One year post transplant check-up: Still fine; NED.
18month post-translant scans, etc. All fine, save a bit of arthritis.
11/14/14: 24 month post transplant check-up–still NED. Scanziety still sucks.
5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
Relapse confirmed/ started every 3 week brentuximab
Allo transplant in Feb 2016.
100 day post transplant scans in June 2016 fine.
Sib we are going through the same thing here. I’ve been searching for a better lung cancer death timeline. Jody
May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
December 2011 CT scan shows all clear.
April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
October didn’t work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, I�m going for door #2 and will continue to live well and enjoy myself until I don�t. I�ll keep you posted. Live it up everyone!
7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldn�t but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!
I’ve taken a couple of nasty falls this last week. (first of mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!
There is another node swelling on the other side of my neck. Still small.
April51’s (Jody) daughter posted that her Mother’s journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!
Senior User Join Date Feb 2013 Posts 291
dear sibling maybe its yours sisters age and young heart that keeps her alive. i havent read the timeline (out of fear ) and i cant imagine what she is feeling these moments. do you think she can hear you if you whisper something? i suppose it can relief her in some way
Moderator Top User Join Date May 2011 Location Illinois Posts 717
Sorry you are going through this (yet again). She sure is lucky to have you in her corner.