Check in time again Sept 28 2021 - Starting new thread for this

Posted by reibur1951 @reibur1951, Sep 28, 2021

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.
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Treatment History:
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.

reibur1951 | @reibur1951 | Oct 4, 2021

Not sure if saw or not
@merpreb
@hopeful33250

Teresa, Volunteer Mentor | @hopeful33250 | Oct 4, 2021

Hello @reibur1951

I appreciate the update. I'm sorry for the late reply. It looks as if your friend will start with radiation tomorrow. You mentioned "simulation" is that something that is done prior to the radiation starting?

I'm glad that some progress has been made on your property. I'm sure that you had hoped to be further along, but nonetheless, progress is being made.

How many weeks will there be between the 10 radiation treatments?

reibur1951 | @reibur1951 | Oct 4, 2021

During a pre-treatment session called a simulation, your treatment team will fully plan your therapy. A simulation session is essentially a “walk through” .. https://moffitt.org/cancers/lung-cancer/faqs/what-should-i-expect-during-radiation-therapy-for-lung-cancer/ an d I think something was said about another set of CT scans It is 10 days straight except for Saturdays and Sundays - so its goign to be an every day thing from tomorrow on - unless they delay for a day or to or start next Monday but I look for them to start immediately

The 5.3 acres has presented surprises buried in trees, brush and shrubs and things keep popping up out of ground - the Bobcat went down Sept 14 and had to had heads heii-coiled and ground down and then so good it caused blow-by and lost power - had to finally give in and got new engine on Sep 30 (my furniture money down the drain) - then a cylinder hose got cut in have because of wrong clip in the variable drive shaft it had to be ordered and friend is going back to Indy tomorrow so it will be sitting till he decides to sit until he deciders to come back if ever - i can't blame him if he does not. SO it looks like i will be back to wheel-burrowing stuff again.

I know I will not be able to do much till after friends treatments are over with - my bed ordered but will not be here will around Dec 1st do h ave the mattress got a Nectar so I guess I can unbox it if it gets to cold out here - I got copper wire, scrape metal to gather up by hand - do h ave lawn tractor and a wagon to do that with.

I am about to where I can totally give up on everything.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 2021

In reply to @reibur1951 "During a pre-treatment session called a simulation, your treatment team will fully plan your therapy. A..." + (show)

@reibur1951 As I have never had radiation, I appreciate you explaining about the pre-treatment appointment. You will have a very tight schedule if the radiation treatments are daily. As I recall, the drive to Indy where your friend gets his treatment is several hours. I hope that goes well for you as well as for your friend.

I can't imagine the difficulty you are having in clearing the land on your own. I hope that it can go a bit smoother in the future.

I appreciate the updates. When your friend begins his daily radiation, will you let me know how he (and you) are doing with that process?

reibur1951 | @reibur1951 | Oct 5, 2021

Have done it 5 times before - vs the cost of a motel, boarding the animals (which would be weekends too 12-14 days), tank of gas, and meals on top the Gas spent was cheaper than going and staying the 5 days coming home weekends

simulation was to day - and radiation treatments start on the 12th

Have a straight shot into Indy/IU Simon Cancer unless run into road work detours which has happened - Every one keeps telling me to go over to 31 (20 miles from house) and down to Indy and it swings clear out past Kokomo and Westfield and then have to come all the way back across town to IU Simon Cancer. Door to door (Barnhill Valet) was 100 miles one way or little under but with covid the closed valet and we have to do our own parking in the Vermont Parking garage - I can not wait for Valet to re-open if it ever does

Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 2021

In reply to @reibur1951 "Have done it 5 times before - vs the cost of a motel, boarding the animals..." + (show)

You certainly have this well planned and know the best route to take. You are a very good friend, @reibur1951. My thoughts go with you on the 12th. Will these treatments be done on the weekend as well?

reibur1951 | @reibur1951 | Oct 6, 2021

No if like the last times - its Mon-Friday so will be 12-15, 18-22, 25 Its a so-called country route - 2 lane highway with very little traffic - as a kid it was the rout my mom used to got into Indy to shop at L S Ayres, Block ect. of course the Indy section has changed tremendously as the city has grown , I65 went trough claiming a lot of neighbor hoods, 421 becomes Michigan Rd then Martin Luther King St and IUPU Campus borders Martin Luther King St. you just turn west off and go down 3-4 blocks and your at the center. By 2026 IU Methodist & University (on IU campus attached to the Simon Cancer Center will be come in a new 10 story building just southeast of IU Methodist - and the IU Medical center/School of medicine spans spans that area also from 10th street up to 16th (IU Methodist location between Senate - Capital & 22nd & 16th with I65 running through the area (just to the west and along Senate). I am not sure if Simon Center will take over University hospital (built 1968-1970) area or not

reibur1951 | @reibur1951 | Dec 11, 2021

Its another check in time - and not good - I have had no time to do but minimal things to get Culver house ready - still awaiting my bed being built by the Amish to be completed - trying to find some reasonable bookcases and furniture - I got all the collectible/antiques furniture cleaned and/or refinished by doing it myself. So still not into new house

5.3A clean up been at a stand still as bobcat has been down & not working since Sept 23 to late October and now again but parts to arrive for the new motor under warranty Monday.

now on to the bad news -

my truck while sitting unoccupied at a grocery store in Culver was front-ended as a result of a police chase on Nov 28th- they shot the driver I am told at least 4 times so he was probably dead when he hit it - They let me sit in my truck and warm up for while & put my groceries into it - then told me I could not be in it so I sat in parking lot in a police car for 2 hours - till they could decide if they could take me home or not and if could have groceries - they did take me home but could not have groceries - finally got the truck 4 hours later at 8 p.m. they told me i could drive it home - but the bumper on the drivers side was up against and rubbing the brand new passenger side tire insurance agent was not impressed but was going to allow me to drive it to repair shop that way - friend got permission to pull the bumper out so would not rub

a total of $6004 damages rounded up not including the rental my insurance has taken care of it had to pay the $400 deductible original estimate was only &3800 so rest has hidden damage adjuster did not look at 🙁 - got it in for repair on the 30th and got it back on Dec. 8th Yes it is a nightmare it is still under investigation by the Indiana State Police. So many different stories as to why the chase and its routes and speeds.

Now to friend - its not looking good I can home and he was complaining of the left arm swelling (which it has been since after the very 1st radiation and the big lymph node tumor busted open over a year ago - any way I saw the huge lump just above the elbow - - then in radiologist office Dec 30th he took off shirt - and he had a line of differing sizes of small lymph node tumors from armpit to armpit and one size of golf ball in left armpit near the original one had already busted open - Dec 1 was oncologist & Ct scans not good news -

Had simulation for next round of radiation treatment on Dec. 8th with an MRI on here is synopsis of CTs & MRI

IMPRESSION:
1. Findings consistent with disease progression including worsening lymphadenopathy, chest wall nodules/masses, and pleural-based nodularity.
2. There is associated osseous erosion of the sternum, the costal cartilage (), and the left first and second ribs

IMPRESSION:
1. An enhancing lesion within the posterior right temporal lobe measures approximately 0.8 cm with associated surrounding edema, likely metastasis.

Questionable enhancing lesions along the right sylvian fissure and within the left cerebellum. Recommend dedicated MRI the brain for more detailed assessment and evaluation for additional presumed metastases.

2. Interval development of a cystic and/or necrotic left level II lymph node measuring approximately 0.7 x 1 cm, concerning for progression of nodal disease.

3. Additional new metastatic disease is present within the anterior right chest wall. Please see separately reported chest CT for findings below the thoracic inlet.

4. Post treatment related changes of the left lower neck with interval significant decrease in left lower cervical and supraclavicular adenopathy from 09/23/2021.

A small residual metastatic deposit overlying paraspinal soft tissues of the upper back measures approximately 0.9 cm. Recommend attention on follow-up.

4. Additional chronic and involutional findings as detailed above.

MRI
There is a peripherally enhancing, multilobular lesion seen within
the inferior right temporal lobe measuring 10 x 10 x 10 mm. More
superiorly within the right temporal lobe adjacent to the sylvian
fissure and right frontal operculum there is an additional
peripherally enhancing lesion measuring 15 x 11 x 14 mm (transverse
by AP by craniocaudal). Both of these lesions demonstrate surrounding
vasogenic edema.

IMPRESSION:
Peripherally enhancing right temporal and front temporal metastatic
lesions as described above with mild surrounding vasogenic edema

There is to be a consult with another radiologist for the brain lesions - to put him on a steroid for the swelling Oncologist is leaning toward Focal radiation for the brain lesions which said will be higher intense and shorter treatment span - not sure if will be worked in with the radiation that will be going on with in the next 2-3 weeks or not will start the 7th round of radiation on Dec 15th with films & actual radiation starting the 16th to Jan 7th

SO its not going to be a very happy holiday here.

Teresa, Volunteer Mentor | @hopeful33250 | Dec 12, 2021

In reply to @reibur1951 "Its another check in time - and not good - I have had no time to..." + (show)

@reibur1951