Check in time again Sept 28 2021 - Starting new thread for this
He will be going for simulation for his 6th set of 10 radiation treatments on Oct 5th
He has been helping more the last 3-4 weeks on clean up of the 5.3A tho I have had to go back over the dirt piles to get all the copper wire & metal out of them.
He will be starting 5th year on Oct 25th
metastatic SqCC of the Lung (Stage IVB i have seen one some reports) His weigh is bouncing between 6468 Kg. but 64kg seems to be the consistent figure for the year. In the face he is getting to look like his dad did in his last months of his life/diastase of not making Red Blood Cells.
Carboplatin/Abraxane/Pembro x 4, followed by Pembro maintenance (HCRN 13-175 trial)- PD
Docetaxel/Pembro x 2 (HCRN 15-029 trial)- PD
Palliative XRT to right neck- completed 5/2019
Pembrolizumab alone- PD
PD-1 inhibition Plus IDO Inhibitor (JZCA phase I clinical trial)- PD
Palliative XRT to left axilla
Pembrolizumab alone- PD
Gemcitabine alone x 3, then combined Carbo/Gem x 2- PD
Palliative XRT to lesions over left upper back
Nivolumab/Ipilimumab x 3 cycles- PD and pneumonitis
Additional palliative XRT to left upper back/left flank/left chest wall
Palliative XRT left axilla
By Ct's on 9/23/2021 All the lymph nodes seemed to have enlarged since 7/15/2021.
CT Chest IMPRESSION:
There is thoracic spine endplate degenerative change
1. Increased conspicuity of suspected soft tissue lesions within the left anterior chest wall on image 42 and right shoulder musculature on image 23, concerning for metastatic deposits.
2. Redemonstration of bilateral axillary lymph nodes and/or lesions. Right axillary findings are stable to slightly increased. Left axillary lesion is decreased in size.
3. Stable 8 mm left lower lobe nodule.
4. Slightly increased size of an 11 mm prevascular lymph node on image 28. Similar 13 mm subcarinal lymph node. Recommend attention on follow-up imaging.
5. Emphysema with scattered bilateral parenchymal scarring and bronchial mucus inspissation.
6. Coronary artery plaque.
7. Supraclavicular adenopathy. CT neck and nasopharynx dictated separately.
CT Neck and Nasopharynx MPRESSION:
1. Enlarging metastatic deposits within the left lower neck and posterior paraspinal muscles are consistent with progressive disease.
2. Right axillary adenopathy is not fully included in the field-of-view. Please refer to the dedicated CT chest for additional details.
3. Additional findings include atherosclerosis, mandibular periodontal disease and cervical spine degenerative changes.
Clean up is at a stand still for now as the Bobcat motor all but died friend been helping me the last 2-3 years has pulled the motor out of it trying to find a refurbished one or good used one but wonder if its worth the $$ there is some left to do but I am discouraged at this point since the bobcat is all that we have had to work with to scrape, lift, pull and clean with Beginning to wonder if it is worth it
Before it completely went down friend with lung cancer was helping going through the dirt piles for metal & copper but I had to go over the last 2-3 weeks- he was mowing the yard more than he had been the last couple of months -Not sure what got into him and whether he continues to mow it like he has been this fall will be debatable – but i got a mower I can use/run and mow with
After his radiation treatments are over I will see about hand loading all the metal we have piled up and hauling in my truck – unless can find someone to help
I had hoped for a consignment auction but 1 never answered the 2 wanted to come pick what they wanted so I have a mess of just not wrapping back down properly – so repacking and stacking boxes against wall in trailer – so I will probably end up going back through and re-sorting and decide what I want to keep for yard/ garage sale or eBay – I actually have enough for a collectible store – but not confident enough and Culver really needs another specialty store
Have been cleaning my collectible/antique furniture and about done with that – been taking to house as i get it done – the heaviest stuff is out of here and awaiting my arrival
Ordered my bed Jun 27 – but it won't be here till around Dec 1st could be later – had to be difficult and order an Amish handmade Bow Sheaf bed for Shipshewana furniture – ordered my mattress (Nectar) a few days and it already arrived today – took it up and left it in the box for now says 2 more boxes – sheets & bedding items that were to be free.
I scrubbed/sanded down and old Tell City rocker did not refinish it – bought a cushion for it – have a glider rocker goign to wash down & get a cushion for it – I bought a chair from a firend over 3 years ago – so that will be all the furniture I will have – I got to get up and finish stripping down the piano and get it out of middle of living room. – Its box heaven at the house and will be living out of boxes for a very long time – no book cases or shelving – I stripped down some desk drawers of 2 desk wings i had plywood over for my computer desk here – my friend who been helping me made a new top for it and I poured and acrylic bar top finish on it – I got a new computer/desk chair Saturday from my Classmates for all my hard work on our reunion we had our 50th/51st reunion from High School and I done all the work of invitation and a booklet for that
My friend alspo during that very hot humid weather in late July-August decided I had to have the black dirt hauled in and done – so had a culver neighbor haul th bobcat up there and we done that – had to scrape out over 4 inches of sand in order to laid down 4 inches of good black dirt then he dug down in where the former carport area was and buried the sand that we could not give away, layered the dirt he dug out over it and then put a thin layer of good black dirt over it. So that s done – but not got the bill for the 3 loads of good black soil as yet. Over did but it got done and took while to recover from that.
Friend covered all the windows with heavy plastic and goign to try to stay here as long as possible till I get things sorted out again and moved to basement. There is just to much to walk off with – and Figure out how to secure things down and drain the plumbing so it will not freeze
Of course his sisters could give a rats-ass in hell – 2 have never called all these 4 years – and the youngest only calls when she want some information but have gotten use to that tho it still sticks in my craw that they could care less about their brother.
I keep praying for a miracle of some sort – Things just have to work out somehow
Interested in more discussions like this? Go to the Lung Cancer Support Group.
He complains of a 10 at Dr office but does not take anything – does not complain at home He sits around mostly and watch TV – does a little but not much – so its just one day at a time
Dr did not continue the Capecitabine (Xeloda) But was considering him for another clinical study "NP-G2–044 as Monotherapy and Combination Therapy in Patients with Advanced or Metastatic Solid Tumor Malignancies" he consented – Verbally on Mar 28th but new Ct's of chest, abdominal etc had to be done – finally got testing set up for yesterday (April 15th) but from the last appointment on Mar 21st he has went down hill rapidly – by time the clinical nurse confirmed the testing appointments he was to the point where i thought and believed that the study would not be beneficial to him – more harm and a waste of time, money etc for the study and would benefit to another – I asked that he be seen by his oncology Dr. before testing done – this week he went don rapidly refusing to eat – he would take the food but pass it off to the dog or outside cats. – Sleeping 16-18 hours or more and not moving around only to go to bathroom or to go get coffee or milk.
The radiology department called to confirm we were coming for cts. etc. which were on hold – wires crossed and oncology nurse had put them on hold – so I called to let her know that she should re-contact them and make sure they were still on hold just in case – I explained what was going on and told her that I wanted him admitted yesterday –
Dr confirmed and went along with my conclusions and views – he is now in IU University Hospital I came home at least for today to wrap up some things that need to be done – his heart rae on o2 was good but bp 70/57 and weight down to 107 – So
He is " admit him to the hospital for IVF (Intravenous Fluid) and likely placement to a nursing
home. If he declines rapidly, he may even become a candidate for inpatient hospice. Of note, I also discussed code status, and he is in agreement with being DNR/DNI"
SO today this is where we stand – a called a couple hours ago talked to nurse – said he was hard to understand and a riddle – – so it does mot sound good – sounds in my mind he will not be leaving University hospital but I could be wrong –
It sounds as if your journey with him is coming to an end. You have been incredible to have stayed by his side all of these years with no help from his family at all. You really deserve an award. I can imagine very opposite feelings going through your mind after all this time.
Please give yourself time to heal after this is all over as you were as much a patient/victim of his family as he was.
I do not think eiter as morning blood test were not good – besides the ones several weeks ago taken fot the chemo to keep track
As soon as I finish some things here at home I am headed back feel guilty for coming home but was not sure what was going to go down and I got one meet with local funeral home to make arrangement for when that comes around yeah that's on my shoulders to as it was with his mom and dad
They will all pay for it wone day – – the youngest sister just recently divorced her husband – the oldest sisters h usban has prostrate cancer from what i was told
He has come to the end of his journey 4y 7m 11d after the x-ray that discovered his lung tumor and lead us to Simon Cancer Center 4y 5 m 30 d after the biopsy on Oct 25, 2017 He died about 11 p.m. last night.
I went down on 23rd to sign papers for hospice care as they transferred him late Wed 20th to Nursing home and they said all paper work was done and I had to sign nothing I did ask – I was tired no sleep as I slept on a sofa in his room from Sat 16th till Wed 20th and very little rest as he was up demanding to go to bathroom every hour-2 hours trying to get out of bed
There were 3 new enlarged tumor that I seen Sat
that was not there on Wednesday The hospice nurse said what was on the outside was mild to what was on the inside
He is at peace and without pain now and has joined his grandmother, father and mother.
All that's left is to make final arrangements when body gets to funeral home no family viewing, no visitation or services per his wishes,
I will comply since i am paying and funeral director will deal with youngest sister if she throws a fit – I can not she came over Wed night to see pictures did not say much – only if I was going to sell his bicycle and it I was going to pay for her other brothers funeral who has not lived her since 2005 that she had committed to 4-county & a half-way house I called the half sister and she did not even seem to care it will be up to her to tell her sister and brother as I have no phone numbers for them.
I have kept my promise to his mom and dad and all is well… Now just to finish getting this place cleaned up and get the hell out of here before late fall.
What an incredible friend you've been for him! He was blessed by your caring and stewardship.
My friend, you have more than fulfilled your promise to your friends. What an incredible person you are. We have been honored to be a part of his journey on Mayo Connect. And now it is finished and you can rest knowing that you have done your best.
Thank you for your kindness to your friend's son., despite his family and their problems.
I hope that you take some time to rest up and enjoy your life now. It's been wonderful knowing you.
Thank you – theres a lot more to be done here – hoping to be out by early fall late fall at latest
All i have done is sleep some yard work –
Thank you for all the support, my ear bending and I wish all who are continuing on their journey's the best of luck