Check in time

Posted by reibur1951 @reibur1951, Oct 17, 2020

Sorry been busy cleaning the 5.3A, cutting up & stacking the maple trunks from the Culver house, trying to keep atop of the re-build which is at a slow pace; got the 64A up for sale to cover the cost of the rebuild & hoping it sells before the end of year; trips to Indy every 2 weeks now

The radiation treatments (11 this round, the 3rd) helped the ones on his back BUT the tumor or blisters traveled under the left armpit to the front left chest and on on his very upper left arm just above the armpit ares.

Sad news is no new clinical studies for now and also down to the last treatment option has had all the recomended

Opdivo/Nuikynmab & Yervoy/Ipilimumab He gets both one week and just one of the 2 the second week He has had 2 infusions 2 weeks ago the 2 together and yesterday just the one; the have switched days starting on the 26th to Wednesdays not Fridays.

So far he is doing good on the them.

He had a CT scan when he started 2 weeks ago – its a very different format and does not c over all in wording the previous ct's of the last 3 years did… Dr. did not confer with me yesterday so do not know what was actually said and not said – the jest of the CT report is things are "stable"

Left yesterday with no appointment times so have to go in see if they set up the appointments for labs/dr/infusion for the 36th or when – its either Monday or Wednesday the nurse assigned him is not like our "Maggie" we had when we started this all Oct 25, 2017… three years down starting on the 4th….

The re-build is 2-3 months behind – have a basement – temporary electric in; the floor system has arrived and told the truses will not be there till mid-November.

Beginning to think I should of not started the house rebuild – I will either make it or loose everything unless the loan officer adds an extension or the 54A sells I am hoping for the latter as I am very unhappy over the loan officers lack of communication dragging his feet from April 28 to June 24 (the construction company was ready to start in May & June) If started by/in June was called to be 6 months was a move in by/before Christmas now I am not looking for early or late spring now; alos building materials have doubled and tripled putting doubt on the estimate given which was not full covered by my savings and the loan so it is a sink or swm situation right now – have had many sleepless nights over this.

Dr. has stopped all chemo / immunology as he has exhausted all that's avaiable to date; there are no new clinical studies. He saw radiation dr. Thursday (20th) was concerned for nerves in the area but but only other option would of been surgery radiation dr. opted for radiation – it is starting to show on outside – and he is constantly scratching at the area. Scheduled for the simulation or whatever tomorrow The list provided and not checked what ct-scan dr. has listed

radiation dr.
Metastatic primary lung cancer (also cancer dr.)
Axillary lymphadenopathy (also cancer dr.)
Secondary cancer of skin
Malignant neoplasm of upper lobe, right bronchus or lung
Secondary malignant neoplasm of skin
Localized enlarged lymph nodes

Mediastinal lymphadenopathy
Primary cancer of right upper lobe of lung

gets confusing when all do not use the same terms –

I keep a printed copy of current visits so when traveling back forth in case anything happens or an accident….

Git storage shed about emptied out – 2 maybe 3 loads and the contractor will help put piano back into house that will be final load – may be a bad idea needs work and good cleaning but bought it for my daughter back in the late 1970's early 1980's when she said she wanted to learn and whined to daddy for one 🙁 did not last long but i do play but its been years now as been inaccessible since 1994

REPLY

I am sorting, taking boxes to house, got all but 3 sets of curtains with rods installed – they are my old curtains from the old house the except for the bathroom – there was not enough for it – the 2 bedrooms were from stuff we got from a thrigft shop they were to long so I measured and just whacked off "hillybilly style for now" they are a very loose open weave so really does not look bad

The living room & master bedroom are a combo from the dinning/living room and bedroom of old house a little short but long enough hem i can let out and use hemming tape on them maybe – the dining/kitcehn area are the cafe curtains from the kitchen & laundry room of old house – heck at my age soon to be 70 I may just make due with them Got small kitchen applainces new – working on it got my bed ordered (no matress yet but looking at them) st cleaning and or stripping down my collectable/antique furniture as it is done its goign to house. EMptied out the china hutch of antique collectabiles and the boxes at house yesterday – it needs to be cleaned down not going to attempt to re-do it

Another round on radiation done and set of scans done on Sept 15 – been several months since the neck was done – Stage IV NSCLC with dermal cutaneous metastases

10/25/2017 showed a fungating right upper lobe mass and a biopsy was done showing poorly-differentiated squamous cell carcinoma both in the mass and in his 4R and 2R lymph nodes. PET/CT showed there was also involvement of the bilateral supraclav and also left axillary and left level V adenopathy

The right supraclavical lymp node has basically disaapeared and not visible any longer on the scans – the main lung tumor has remained stable

left axillary mass (Opened up) it barely or no no longer shows on the scans; left upper back (2 times, Feb 2020 & Sep 2020); L axilla a subcutaneous mass in very inferior L axilla, and one in R axilla that seems deeper and more central – May/Jun 2021

All radiated area oif lymph nodes have remained stable – excepting the new ones which pop up

now there is Multilevel degenerative changes in cervical spine, & . Multilevel moderate spinal canal stenosis. but has increased with each scan seems to be getting worse with each scan

Now there is 3 new – Enlarging or new left levator scapulae ; subclavicular mass abuts the brachial plexus anterior inferior margin mass along the posterior medial aspect of the levator scapulae is also concerning for metastatic disease are consistent with progressive disease

Just trying to hang in as long as i can with my promise still not sure how it will work out. Oct 25 will start year 5 of this saga

REPLY
@reibur1951

I am sorting, taking boxes to house, got all but 3 sets of curtains with rods installed – they are my old curtains from the old house the except for the bathroom – there was not enough for it – the 2 bedrooms were from stuff we got from a thrigft shop they were to long so I measured and just whacked off "hillybilly style for now" they are a very loose open weave so really does not look bad

The living room & master bedroom are a combo from the dinning/living room and bedroom of old house a little short but long enough hem i can let out and use hemming tape on them maybe – the dining/kitcehn area are the cafe curtains from the kitchen & laundry room of old house – heck at my age soon to be 70 I may just make due with them Got small kitchen applainces new – working on it got my bed ordered (no matress yet but looking at them) st cleaning and or stripping down my collectable/antique furniture as it is done its goign to house. EMptied out the china hutch of antique collectabiles and the boxes at house yesterday – it needs to be cleaned down not going to attempt to re-do it

Another round on radiation done and set of scans done on Sept 15 – been several months since the neck was done – Stage IV NSCLC with dermal cutaneous metastases

10/25/2017 showed a fungating right upper lobe mass and a biopsy was done showing poorly-differentiated squamous cell carcinoma both in the mass and in his 4R and 2R lymph nodes. PET/CT showed there was also involvement of the bilateral supraclav and also left axillary and left level V adenopathy

The right supraclavical lymp node has basically disaapeared and not visible any longer on the scans – the main lung tumor has remained stable

left axillary mass (Opened up) it barely or no no longer shows on the scans; left upper back (2 times, Feb 2020 & Sep 2020); L axilla a subcutaneous mass in very inferior L axilla, and one in R axilla that seems deeper and more central – May/Jun 2021

All radiated area oif lymph nodes have remained stable – excepting the new ones which pop up

now there is Multilevel degenerative changes in cervical spine, & . Multilevel moderate spinal canal stenosis. but has increased with each scan seems to be getting worse with each scan

Now there is 3 new – Enlarging or new left levator scapulae ; subclavicular mass abuts the brachial plexus anterior inferior margin mass along the posterior medial aspect of the levator scapulae is also concerning for metastatic disease are consistent with progressive disease

Just trying to hang in as long as i can with my promise still not sure how it will work out. Oct 25 will start year 5 of this saga

Jump to this post

Hello @reibur1951

I so appreciate your checking in again with an update. I'm pleased to hear that your move is beginning to come about and you are getting situated in your new home! You must be very happy about that!

I admire your tenacity as you think about October 25, being the five-year mark of helping your friend's son with his cancer treatment. I admire your tenacity and loyalty.

It sounds as if there is some suspicion of metastasis. Is that correct? How is he feeling? Is he in much pain?

REPLY

The armpit lymph node (left axillary mass) & supraclavical lymph nodes wrer there from day one – they showed up on the PET scan & the surgeon said surgery was out of the question – they started at the on The armpit lymph node (left axillary mass) for biopsy saying it would be less painful than the supraclavical lymph node & if it tested negative they would move up to the supraclavical lymph node but lymph node (left axillary mass) tested positive back in October 2017 which did not really begin to grow larger until sometime in 2019 which he never complained about until to late it really began to grow larger in Dec while he was on his last clinical study and the nurses doing the study began to notice upon radiation it was was baseball and withing few days when radiation treatment assessment & treatment it went from baseball to softball to very large goose egg and opened up & the left upper back on shoulder blade was tested after the Jan 2020 radiation treatment – as it was growing and it tested positive and so it was back to radiation – so the metastasis has been there really since day one – and before – he had had the nagging cough for almost a year and when to primary doctor would never would cough – Finally his Sep appointment I pressed for a chest x-ray – I was thinking bad bronchitis, pneumonia and possibly another acute Myocardial infraction in the works and I did not know how I was goign to hand him myself – as his dad was no making blood and not strong enough to pick him up off floor again & i could not leave his dad here alone so I had 2 of them to deal with in a emergency run of Paul Reever as we had done in 07. If i had not pressed the issue in Sept 2017…..

REPLY
Please sign in or register to post a reply.
  Request Appointment