About ready to scream, been bad month

@reibur1951 So sorry to hear all of that together- not exactly a hot dogs & lemonade month! Sending a hug & a prayer from here.

Thanks life is a bowl of cherries.... f you do not buckle under you do survive it could be worse Alive and still kicking 🙂

Sending good thoughts and prayers your way. At least you are doing what you can. God bless you.

I think everyone here can relate to needing to vent. Being the caregiver is hard!! When you are responsible to keep the life raft afloat, and things start to run amok it can be overwhelming. I know you said you are hanging by a thread, but tie knot in that thread and hang on. I know it seems trite, but it is heartfelt to say, when you look back, you will be glad you did. Thinking of you.

Hello @reibur1951

As it has been about a month since you last posted, I was thinking about you and wondering how you are doing. How are the property and vehicle matters coming along? I hope that you made it through the anniversary of Russ' death OK, anniversary's like that can be difficult.

I was glad to hear that your son's friend had some good news but sorry to hear of some of the lymph node enlargement. How is he doing now?

I'm looking forward to hearing from you again.

Update Synopsis as Not sure what posted this summer… friends neck lymph node started growing in Jan. by March really bothering him tried a clinical study of chemo for a few weeks but was still growing by late April when decided to do radiation & genomic testing 10 radiation treatments in May and nothing came of the genomic testing for markers what ever was off the Keytruda during radiation and then went back on it Oct 2nd CT scans brought bad news on the 7th that the lymph node in armpit started growing and one in the chest area these were original old ones – the neck lymph node remained same as the July Ct scans and under control the main tumor has not changed thus far since the end of the 1st clinical study in April 2018 when he began the Keytruda only all other lymph nodes remain stable and unchanged… on the 7th the Keytruda could not be given because of the CT results was told a harsh treatment & possibly keytruda too or that a clinical study was available ( Ant-IDO-1 Agent maybe combined with Anti-PDL-1) it’s a Pahse 1a/1b and last resort would be radiation… Chose the clinical study Eli Lilly it is 10 weeks with on Thursdays and then there are 3 times we have to go back on Friday for blood testing ekg and the 3rd Friday a biopsy... signed papers on the 7th today (18th) we went back for the labs tests, biopsy and ct scan of the abdomen and pelvis ... .

Thursday 24th we start in oral dosing with infusion, 8 hour post blood draw and go back of Friday 25th for blood draw oral dosing and ekg then next to weeks only the labs and oral .....

Been while since posted... summer went way to fast... been cleaning up 5.3 acres a long .ways to go... things finally settled the daughter & husband got her 5A but had to get a variance so could keep farm land frontage nothing ever has been simple bu t went through without question... sale of 40A cent through on Sep 11 and went got new vehicle 2019 GMC Sierra 1500 Elevation series a 4by4 did not have it but 4 days someone keyed/scratched the drivers side from drivers door to taillight .had to totally repaint that side... thus can not be Ziebarted till late December. its paid for in full going to stick it out here another winter if can and put money into restoring my house... me i am hanging in sometimes by a thread i think turned another year older on Sunday trucker friend came in helped us get dyer out of garage/barn not attached to trailer into laundry/furnace room so will provide extra heat when ran and another problem solved that's been on going for 3 years but his family would not help solve... God will provide and guide

UPDATE into and ending 2nd month of the clinical study - seems to have of side effects - yesterday was our last "long day" they were the Oct 24th, Nov 7th, & Nov 21st Labs/ekg upon arrival, 2 hr, 4 hr and 8 hr, after Infusion/Oral dosing. The Fridays 24, 8, & 22 were labs/Ekg/vitals with labs/vitals only -

The Fridays were basically walk-in and walk-out not even a half hour - more time on the road...

There is 5 trips in dec - 3 of the oral dosing & infusion; one trip for labs only & other will be for CT Scan which she messed with the radiation follow-up appointment from the May radiation treatment with christmas week off then in January will be down to every 2 weeks -

This is the Clinical study: https://clinicaltrials.gov/ct2/show/record/NCT03343613

Participants must not have previously received an indoleamine- 2,3-dioxygenase (IDO) inhibitor

STUDY PURPOSE: The purpose of this study is to evaluate the safety of the study drug LY3381916 administered alone or in combination with anti-programmed cell death ligand 1 (PD-L1) checkpoint antibody (LY3300054).

TIME COMMITMENT: Your participation in this trial could last up to 24 months, depending on your cancer type and how you and your tumor respond.

Hopefully this will help - guess the CT on Dec 18th will tell.

Weather has co-operated - no snow on the days we have gone down - misted rain last night when we came home - got out at 8 p.m. and got home after 10 and turned around and went back at 7 a.m. this morning - we could of had hotel but with wood stove only heat and the animals its not been bad.

Well the 3rd clinical study down the drain... The lymph node in the left armpit is continuing to grow went Tuesday for radiation evaluation - 1st time in seen it up close it s beet red, yellowish gray with crust - he has been itching, rubbing it since just after the 3rd week of December -

Go for the simulation planning on Wednesday the 22nd. will be like for the neck lymph node in May 10 treatments 5 days off the weekends. plans are to go back on the Keytruda on Feb 14th since it has helped to keep the main tumor and other lymph nodes in Chest from growing.

The neck tumor alas went down and is stabilized for now last CT scan sets were Dec. 18th - not sure when next will be was to be in February - had christmas week off - the last Clinical infusion was on the 3rd and the capsules last night.... W

ill see if radiation helps this time around. He had official started his 3rd year as of Oct 25, 2019 seems like eons ago with all that has went down since the diagnosis.

Still toughing it our here been fighting for firewood loads since wood heat is all we got ran out this morning before we left been arguing for this load for a week I bite my tongue I got two who were to help me stock up but have not I have had to go to local grocery or lowes on way home and buy the bundle packs to survive till the loads arrive.. st times i want to scream and give up but i know i can't.

Was being cautious as rent for month was $1000=2000 and could not take the animals (dog a soon to be 10 year old dachshund that stayed by his fathers side the 2 1/2 years he was sick & now two inside cats lavender seal point Siamese & he found one in ditch around Oct 13th its a male and from what I can learn is a "Snowshoe" https://cattime.com/cat-breeds/snowshoe-cats#/slide/1 he is dutiful and ornery Not in mood to give them up - thought of buying a house but they run $125,000 (for a fix-upper) to well over $250,000 - my house needs a lot of TLC been in my deceased husbands family since 1940-1944 well over 114 years old and was in the process of starting he restore then all hell broke loose with his dad first cataract surgery followed by the not making red blood cells and the the sons diagnoses on Oct 25, 2017 He today had regular blood test, dr. and no infusion since kicked out of the clinical since accepted for radiation treatment.

Getting the new dependable vehicle was more important - have made over 20 trips to Indy since got it it had a little over 2,000 miles on it and now will turn over 7,500 on Wednesday.

he is back in radiation day 3 yesterday he had to have new scans and be re-assessed on radiation dosage it had tripled in size besides fully being open... was 2nd time I have seen it directly and fully... it looks as big as a soft ball resembles an erupted volcano and has 2-3 round pencil sized deep holes where it is seeping/draining... today the gave us A supply of non stick gauze pads syringes of saline solution to wash it down, and a stretch tube of gauze to keep it covered to keep shirt from irritating it and draining all over but its not working the tube remains but the gauze pads drop so tomorrow they are going to have to come up with another ,method. While re-bandaging tonight I found a dime size beet red lump on the lower left shoulder blade he passed it off as falling on the ice the other day there is no bruising etc. told him he is to tell them of its presences not sure it its another lymph node swelling or not nut does not have to be ignored and let go.... got 7 more treatments unless they increased them but not said as yet Hoping i am just paranoid and its nothing.

Looks like its is shrinking but it still looks "ugly" and still has a sinking volcano crater look. They are goign to keep any eye on the shoulder bump and it is assumed it is cancerous as of now since it is within the area and a result of the original lymph node of (Oct 2017) under the left armpit. It is just outside of the area being radiated so if it grows or they decide it should be radiated means a reassessment on Tuesday/Wednesday and extended radiation now or later another series of radiation treatments in store one can only second guess - He was not happy I turned it it in but I would rather be safe than sorry since he does not complain til its to late or it causes to much pain but he can not see it himself unless maybe he looks in a mirror and I doubt that - I am also keeping eye on it as i wash out the "volcano" with saline solution and putting the non-stick gauze on it and wrapping it - I got Koban yesterday afternoon when got home and made a sling around it (over the the round stretch wrap in order to keep the pads in the stretch wrap and on it - again becasue he will not tell when the pads drop out - and thus back to square one with irritation of clothing