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.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@reibur1951

YERVOY® (ipilimumab) & OPDIVO® (nivolumab) immunology was stopped in March; here are no new clinical studies and he has exhausted all the chemo & immunology drugs used to treat Lung cancer - put him on 60 mg prednisone for cough & what was possible infection shown on the ct scan of March 17, for a month and then graduated him off of it The Ct scan of May 12 Described as ", history of poorly differentiated stage IVb squamous cell carcinoma of the right upper lobe with nodal spread to the left cervical and axillary lymph nodes." and has 3 new - not yet showing above the skin : "Growth of the bilateral axillary centrally-necrotic lymph
nodes measuring 4.0 x 2.3 cm on the right and 1.9 x 2.2 cm on the left. New 1 cm right subcutaneous nodule in the superficial back soft tissues, concerning for metastatic spread."

He has a nagging cough - seeing radiologist for the lumps/growths this coming Thursday 20th - more than likely will be another session of 10 treatments

He does not want to do anything- just sit watch tv - tell him to do something most likely forgets or does what he wants - since March he has destroyed the Ford truck that used on property to haul scrap metal to the dumpster near road side - in March he slammed into something while trying to get some wood for the night that show/cold spell we had - took him all day to get not even enough to last the night then got it stuck up in front of trailer - ran into at scrape pile and just left it there 🙁 Last was told not to reve it up but did and blew the timing chain I had just spent $80+ on a cylnoid & modular - so we cut bed off mounted it on a small wagon and cut the rest up and its goign in the dumpster

Think his memory is going.... know his common sense is gone - I was out fron cleaning up a pile of old sweepers on to truck before it bit the dust and he walked right past me - knew I was in between him and the truck and started throwing them towards me - one hit me jsut at behind my right ear all i could do was bite my tongue walk off crying to a friend who was cutting steel it hurt worse hat when feel against the dumpster a year ago... about 2 weeks earlier I cut my knew wide open and was applying pressure ot stop the bleeding =he did not see the extent of it or blood but held up one of his fingers and said " you are not the only one bleeding" I saw not blood, not cut/puncture and I blew a cork - walked out of trailer and said I had to go back to work picking up scrape - my knee still bothers me and I can not bend over for every long periods of times but I keep on trucking...

The 64A is sold - I took the bank appraisal was well below the selling price - but after the knee episode and the year of fear of losing every thing, no good sleep etc. The bank loan is paid off and I made the final payment on the house - of course I do not know where i really stand until next April - but at least if i get tired of cleaning up the 5.3a I can walk away and sell it as is - which is better than when started - he could give a dam about anything and has helped very little if any - there has been 12 dumpsters of metal out of here ( roughly 78 ton) and 8 dumpsters of trash - which he helped create over the years - he will not even sweep the floors or keep coffee made. He has this irritating snicker laugh after just about every comment he makes as if everything is funny.

House is done and i am moving boxes in kitchen & laundry appliance bought but no furniture - I am not sure if can afford but I am out of here come mid / late fall of a night and will sleep on floor in sleeping bag....

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Hello @reibur1951

I think that Merry, @merpreb, is providing some good feedback on the problems you are experiencing right now. You have been a faithful friend to this family for some time now. It does sound as if the time has come for him to be in a care facility. His illness is certainly causing you both problems with safety. It is important for both of you to be safe.

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Not sure about assisted living as i think you have to care to clean up some after your self but have been thinking on nursing home only problem is our area one will not take him to Indy for his appointments. He has to have radiation had evaluation on 20th - goes back tuesday 25th - and assume will start soon after 10 treatments. He is looking much like his dad did in his final months of life so not sure whats fully going on - he does not say much even to dr. I just do not ask for his help its easier for me to do it myself than to keep repeating what I want done or waste my breath and he do nothing. Trying to hang in for while longer AT least I have friend here who is helping doing part of what he should be doing in cleaning up the 5.3A or I would of never made it at all this far in the clean-up stage - its looks almost 100 percent different and still ways to go. Been unloading storage shed dropping things off at house bring rest here to sort through - most going into a stack for yard sale/auction been a challenge as do not remember what all I packed up in late summer & fall in 2018 hoping to bet out of here before that winter.

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@reibur1951

Not sure about assisted living as i think you have to care to clean up some after your self but have been thinking on nursing home only problem is our area one will not take him to Indy for his appointments. He has to have radiation had evaluation on 20th - goes back tuesday 25th - and assume will start soon after 10 treatments. He is looking much like his dad did in his final months of life so not sure whats fully going on - he does not say much even to dr. I just do not ask for his help its easier for me to do it myself than to keep repeating what I want done or waste my breath and he do nothing. Trying to hang in for while longer AT least I have friend here who is helping doing part of what he should be doing in cleaning up the 5.3A or I would of never made it at all this far in the clean-up stage - its looks almost 100 percent different and still ways to go. Been unloading storage shed dropping things off at house bring rest here to sort through - most going into a stack for yard sale/auction been a challenge as do not remember what all I packed up in late summer & fall in 2018 hoping to bet out of here before that winter.

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Good morning- You are correct, what was I thinking? Assisted living wouldn't be the place, although some offer graduated help according to the needs of the patient. Does he want to continue treatments at this time or are they to control pain? I can't beleive the amount of work that you have been doing.

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@reibur1951

Not sure about assisted living as i think you have to care to clean up some after your self but have been thinking on nursing home only problem is our area one will not take him to Indy for his appointments. He has to have radiation had evaluation on 20th - goes back tuesday 25th - and assume will start soon after 10 treatments. He is looking much like his dad did in his final months of life so not sure whats fully going on - he does not say much even to dr. I just do not ask for his help its easier for me to do it myself than to keep repeating what I want done or waste my breath and he do nothing. Trying to hang in for while longer AT least I have friend here who is helping doing part of what he should be doing in cleaning up the 5.3A or I would of never made it at all this far in the clean-up stage - its looks almost 100 percent different and still ways to go. Been unloading storage shed dropping things off at house bring rest here to sort through - most going into a stack for yard sale/auction been a challenge as do not remember what all I packed up in late summer & fall in 2018 hoping to bet out of here before that winter.

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Hello @reibur1951

It sounds like you are doing the best you can under the circumstances. If he still wants to work on cancer treatment then he does need transportation to Indianapolis.

I am glad to hear that you have some help getting the acreage cleared. It is important to take care of yourself when you are caring for someone else.

Do his doctors indicate that there has been any metastasis beyond the lung? Are you familiar with palliative care? It is different than hospice care in that he can still continue with treatment, but the patient has specialized help with some of the side effects of treatment, including pain.

Here is a link to some information about palliative care, https://www.mayoclinic.org/departments-centers/general-internal-medicine/palliative-care-minnesota/overviewe,

If you think that this might be something that would be helpful to your friend (and you) and relieve you of some of the burden of caregiving you might talk to his doctor in Indianapolis to see if they can make a referral to Palliative Care.

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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

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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

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@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

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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?

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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.....

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