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Tue, Feb 26 11:04pm · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Friend has started his 2nd clinical study and had his first treatment of Chemo (Docetaxel) combined with the Pemnrolizumab (Keruda) (which he has been on since Dec. 2017 every three weeks) plus a dose of steroid to ward off and of the side effects

The 1st clinical study was: Pemnrolizumab (Keruda))/Carboplatin/Abraxane week1 and then Abraxane week 2 &3 for total of 12 weeks Dec-Apr and then in April was only the Pemnrolizumab (Keruda) every 3 weeks – like said he had little no side effects – – thus far he has no side effects to the new chemo hoping he will do same as he did on the 12 week regimen not sure how long this will continue – will be depending upon if any side effects the drug as is a little more wicked than the other 2 and will be taken off if it causes other complications.

The Supraclavicular lymph node shows measures partially necrotic ( death of cells) 4.6 by 6.1 cm; there are 3 others 1 morphologically 1.1 cm.; 1 partially necrotic ( death of cells) at 1.6 cm. and the other necrotic at 1.1 cm He had his biopsy of the Supraclavicular lymph node for the clincial study its basiccally for their study purposes unless it turns something more up that what is now known
on Thursday 21st and goes back for treatment on March 18th and scans on April 4th and treatment again on April 8th.

Options if this does not work or show progress is first radiation, and then possibly surgery if the radiation does not work.

The main tumor/mass and all the chest lymph nodes and the Left Axillary lymph nodes have shrank not changed and have remained stable. the upper lung mass has been described as "fungating" in the CT scans

He is Stage IVB NSCLC into his second year being diagnosed in Oct 2017

Its been a very rough 2 years on all of us his father died Jun 28 2018 after a near 2+ year battle onf not making read blood cells, & his mother on Dec. 26th 2018 after being in nursing home for 14 years from full right side stroke – he has a massive Acute MI near 100% blockage with many other health issues was "comfort care" for 8 days before dying I stayed with her 24/7 tho he never has said I know their deaths has taken a toll on him.

There has been never given a time frame of survival given only what I have researched…. he is determine and rides his bicycle almost every day 10+ miles one way to a country store to have coffee be with local people.

He has not had any colds, flu etc. which is a plus… God is good and he will take care and provide what is needed…

Tue, Feb 12 8:42pm · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

The port is a semi-permanent IV in which blood can be drawn from each time blood tests are needed and they also use it for your chemo/immunology it avoids having to be stuck by needles constantly – also if you have "difficult veins" such as those which have a tendency to roll and seemingly always avid the needle resulting sometimes in several misses or manuring to get a needle inserted properly for either a blood draw or infusion; or if you have fragile veins or veins that tend to "blow" just after a needle or IV is set-up its your choice to have one or not – many choose to have one as it simplifies everything besides the constant being stuck constantly. the "if needed" was probably written in case you change your mind that there is a standing order for it to be done – or in case it becomes impossible to draw blood or insert an IV with out great difficulty the motto is "Due no harm" I at least commend him in that it seems to be a standing order that "if needed" you do not need to await getting the approval which could take only minutes or hours depending on how busy he is with other patients. It can also be used in other emergency situations etc by other health officials for blood draws, administering medications etc.

Fri, Feb 8 7:22pm · Loss and Grief: How are you doing? in Just Want to Talk

Thank you – its been a rough 2+ years – already lost his dad on June 28th and his mother on Dec 26th – she was in nursing home since Dec 3 2014 with right side stroke – a myriad of other problems left or right cartriod artery completely blocked with the one in the back of neck she had one Carotid artery surgery which ever side to save her right side as she was right handed, she was having seizures which the dr she had & Hospital ER was not diagnosing till to late – then badgered her into the surgery – the last she went in with a mild seizure & Acute Myocardial infraction with STEMI near 100 percent blockage, sepsis, c-diff, Stage 3 Acute onset Kidney disease her the heart dr on call and her regular hear dr said heart catheterization would either do more damage than good or he would die during it – plus she had DNR and directive for not advance life support to maintain life – recommendation was "comfort care" she never was fully alert or conscious the whole 8 days (I sat with her 24/7 those 8 days except maybe 3 hours) – for one brief period in ER she did tell the daughter she loved her. His father was diagnosed the not making enough red-blood cells .also tested JAK2 V617 positive – was not to have been cancer – had blood transfusion every 2 weeks – was on arasnep for 8 months but had 90-95 % of the side effects. so when medicare refused to pay for it found out fully he done a almost 100% turn around he had a — for a doctor – talked in analogies – would not talk side effects of medications – the small good outweighed all the side effects…

He is getting the best of care at IU Medical/Simon Cancer center – and what ever happens I know its God's will and I have survived and will I know I have done my best and am doing my best I have genealogy I do and I have a wesbsite on the history of the town i lived in and will go back to http://www.maxinkuckee.history.pasttracker.com/ I am trying to restore my 100+ year old home there which as been put on hold since 2017 ( http://www.maxinkuckee.history.pasttracker.com/lots_419_s_main/419_s_main.htm ) – but I will some how succeed at that –

Over the years I have lost loved ones – I know we are given only a limited time on earth – and when its our time God will take us Maybe this sounds insensitive but I have always believe our time on this earth was limited to God's will and that he will provide and take care of us.

Fri, Feb 8 1:56pm · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

The main tumor in lung and the rest of the lymph nodes one in the left arm pit and chest are are all stable and not growing… just that with the Supraclavicular lymph node acting up for now kicks him out of the original clinical study – he was done to the he went through the 1st 12 weeks week 1 was carboplatin, nab-Paclitaxel/abraxane (both chemos) & Pemrolizumab (immunology) and weeks 2 & 3 nab-Paclitaxel/abraxane (chemo) only with flying colors so to speak no adverse reactions to the drugs, very little hair loss (in fact grew back thicker), and only a little neuropathy in his feet reaching only to about the base of ankles in other words one who others would be very envious of or would like to "punch his lights out" did not have to take any of the 3 bottles of extra medication for nausea & vomiting prescribed; no diarrhea, loss of appetite etc. At least he gets to be in what the call Phase II

Yes we had much the same type weather… I had a nice warm water bed and that where I stayed most of the time in front f the bedroom tv, laptop and smartphone by my side… was diagnosed in Oct 2017 in fact we know before he was out of the biopsy of the lung that he had cancer there was PET scan etc and by Dec 15th he started his treatment… think we were in Indy every week or every other week in between Oct-Dec before we started the 12 week trips till nid April – only missing 3 sessions (delays) one we landed in the ditch on Jan 12th it was a rain/sleet weather with probably 2-3" or more on the highways before the snowplows was out – after getting out we headed home – the other 2 was because his immune count was down and they would not do the treatments (the "Do no harm") … besides that we have made it through the death of his father on June 29th 2018 (he was not making enough red blood cells & having transfusions every 2 weeks) & his mother who died Dec 28th – of Acute Myocardial Infraction, near 100% blockage, sepsis, c-diff, Stage 3 Acute Onset Kidney disease beside her full right side stroke which she had been in nursing home since Dec 3, 2004 I sat with her and watched her die slowly from Dec 19-26 24/7 all but for about 3 hours she was comfort care only as was DNR no advance life sustaining support and if the did surgery to alivate blockage she would of possible not made it or done more damage than good

Just have to hope for the best and he does as well as he did on the first round but with only one chemo he should and it is to be similar to the nab-Paclitaxel/abraxane

How are you coming along @olgamarie ?

Fri, Feb 8 12:04pm · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Update – Friend back on Dr. visit Jan 7th before 6 week ct-scan (Jan 24th) told dr that the lymph node was hurting and was somewhat swollen the ct showed nothing we missed the Jan 28 dr/immunology I started out but got only mile from home turned around – road was snow packed – could not see but very little of the yellow line occasionally and it was drifting across the road from west to east on North/South road… was rescheduled for Feb 1 but water was still frozen and was single digit temps with negative wind chill so cancelled out (guess I am a total chicken) – but as have a dachshund & a newly acquired Siamese kitten who would be home alone and house temp was in the mid to low 40's with the wood stove (only heat) and the wind seems to go right through this 1975 mobile home being a PIA so cancelled out and weather was to be iffy also

We made it today (Feb 4th) – CT scan showed no major changes – but he was still complaining of the lymph node and its more swollen – not sure why it did not show on the CT unless not high enough was able to have the immunology – after checking all angles with the clinical study they were able to have immunology and also was able to schedule a neck ct- and was able to get it done today after immunology across town at I U Methodist was half hour late but they took him anyway immunology you get there at your appointed time and wait 1-2 hours for the mediation to arrive we took out of I U Med/Simon Cancer at the appointed time of the CT appointment across town.. left Indy at rush hour 5 p.m and it was misting rain and foggy…

He was scheduled to see ENT Dr. (Feb 7th) – had a Fiberoptic laryngoscopy (nasolaryngoscopy) it showed no complications /tumors on the inside of the throat & neck area. The swelling/ growth is a part of the lung cancer being treated this lymph node had shrunk but started to show symptoms again so its a step backwards – was taken off the the original clinical study he was on (Dec 2017-Feb 4th) BUT he got put into another – there will be chemo & Immunology together as before but only i chemo drug – Docetaxel (Taxotere) and Pemrolizumab which he has been getting 1st in combo with 2 chemo drugs and then since April alone – all other areas are stabilized or its just the Supraclavicular lymph node acting up for now The neck ct showed nothing new – have not seen the report as yet Blood test were done to get the stud under way – will have to go back for a biopsy of the lymph node which as asked but do not have to have really but suggested trying to stay positive and hope he does as well as he did on the other chemo – no real side effects except losing a little hair and some neuropathy in the feet…

Love IU SImon Cancer center they don't drag their feet ad they are up front….

Thu, Feb 7 6:52pm · Loss and Grief: How are you doing? in Just Want to Talk

He was scheduled to see ENT Dr. today – had a Fiberoptic laryngoscopy (nasolaryngoscopy) it showed no complications /tumors on the inside of the throat & neck area. The swelling/ growth is a part of the lung cancer being treated this lymph node had shrunk but started to show symptoms again so its a step backwards – was taken off the the clinical study he was on BUT he got put into another – there will be chemo & Immunology together as before but only i chemo drug – Docetaxel (Taxotere) and Pemrolizumab which he has been getting 1st in combo with 2 chemo drugs and then since April alone – all other areas are stabilized or its just the Supraclavicular lymph node acting up for now The neck ct showed nothing new – have not seen the report as yet Blood test were done to get the stud under way – will have to go back for a biopsy of the lymph node which as asked but do not have to have really but suggested trying to stay positive and hope he does as well as he did on the other chemo – no real side effects except losing a little hair and some neuropathy in the feet…

Bracing for a cold night it went from the high 40's low 50's to 32 and to be lower… It rains most of the day. Time will tell… God will be with us and guide us… Nothing has been easy but so far have survived it a…..

Right now my mind is going around in circles.. while waiting for other things to come though hoping they don't go astray… just wishing for warmer weather so i can get things done in between trips to Indy… The syaing the "Best laid plans of mice and men…."

Mon, Feb 4 9:07pm · Loss and Grief: How are you doing? in Just Want to Talk

Just to touch base think hanging in.. on by thread… have survived the "Polar Vortex" heat only by wood and its been a _ to keep going and burning was down to 28 have got it up to 52

It was 52 when when got home at 8 p.m. today – but on chilly side when arrived home from Indy was fine at 4 a.m. and iffy at 6 a.m. but i said _ and went back to bed and was completely out at 8 a.m. nothing to start it with and no time to mess with it – – wood has been frozen, wet etc

the hot/cold water in kitchen froze for almost 2 days – the cold had earlier in week then un-thawed and by Thursday both froze but that's normal in very cold weather – had both hot/cold in bathroom so was not without The washer that's in the
furnace room will not run now was running the day the "Polar Vortex" struck lucky the pressure tank did not freeze… the joys of country living….

Friend back on Dr. visit Jan 7th before 6 week ct-scan (Jan 24th) told dr that the lymph node was hurting and was somewhat swollen the ct showed nothing we missed the Jan 28 dr/immunology I started out but got only mile from home turned around – road was snow packed – could not see but very little of the yellow line occasionally and it was drifting across the road from west to east on North/South road… was rescheduled for Feb 1 but water wast still frozen and was single digit temps with negative wind chill so cancelled out – as have a dachshund & a newly acquired Siamese kitten and house temp was in the mid to low 40's with the wood stove (only heat) being a PIA so cancelled out and weather was to be iffy also

Have set my alarm in the smartphone for 2 hour interval's the rooster "crows" and I get up to check the wood furnace at least I am able to get some sleep in between wake up calls….

His sister and brother-in-law has not even called to see how he is doing or check on us during this cold snap – at least if there is a question of maintenance of the van the brother-in-law does come if called – but I am not one to call and ask (beg) for help – I feel that they should be at least a little bit concerned –

Got the mother's funeral paid for and the crematory house monument from them, Paul and his brother, now just for spring to arrive so foundation can be poured… I got the sister a glass heart for her dad remembrance with cremains, she said no for the half sister & sister but I went a head and got glass flames I thought it was only right – the 2 grand daughters getting acrylic necklaces wood/resin/cremains for the grandfather and wild flowers /resin/cremains for the grandmother of her cremains and the 2 daughters a glass rose/gold paperweight – the step-daughter nothing as she did not even bother to come to the family viewing for Mariea… I have recovered from the 8 day 24/7 vigil and getting back intot he swing or so i thought till the "Polar Vortex" struck… I shall overcome….

We made it today – CT scan showed no major changes – but he was still complaining of the lymph node and its more swollen – not sure why it did not show on the CT unless not high enough was able to have the immunology – after checking all angles with the clinical study they were able to have immunology and also was able to schedule a neck ct- and was able to get it done today after immunology across town at I U Methodist was half hour late but they took him anyway immunology you get there at your appointed time and wait 1-2 hours for the mediation to arrive we took out of I U Med/Simon Cancer at the appointed time of the CT appointment across town.. left Indy at rush hour 5 p.m and it was misting rain and foggy…

So not sure what's going on and what will happen I know will be some big changes before next fall/winter… Said 2019 had to eb a better year beginning to wonder…. God will provide and take care… Nothing is impossible through God as impossible is "I'm Possible"

Thu, Jan 31 1:47pm · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

@olgamarie Prayers put your faith in God… take one day at a time is all i can tell you… I have cared for an 84 yr old man not making red blood cells who died Jun 28th and then on dec 26th his wife who has been in nursing home for 14 years died of an Acute Myocardial Infraction near if not 100% blockage doing catherization was out because of multiple health issues she was put on comfort care soon after her trip into ER on Dec 19th ended on medical floor for couple of hours transferred same day to hospice for pain management only stayed there till Sat but in my opinion should of never been moved back to the nursing home – the hour+ trip was total misery for her I rode with her and listen to her moan and basically scream she was still in misery for 4-6 hours after arriving back wand was full of morphine… their son was diagnosed with Stage 4b lung cancer – his father & I knew the results before he was even out of the biopsy & I Had to go tell he mother who was full right side stroke – how much she comprehended I do not know because a week earlier she asked me what was exactly wrong with Russ and I had been explaining telling her everything for 2 years! he is in clinical study at IU Medical/Simon Cancer center – 12 weeks of chemo 2 chemo's first week with immunology, abraxane (Sp) the next 2 weeks – ct-scan every 3 weeks (DEc-April) I even landed in a ditch ass backwards on Jan 12th last year leaving out of here in rain/slet with roads slush and Ice – the Ices storm of 2018 that went as far down into Tennessee or further that day…. the son is doing great no reactions or adverse effects for the chemo & immunology, some nausea, vomiting, etc. very little hair loss in fact it came back in thicker, some nuropathoy (sp) only to up to basically base of where foot meets ankle, He thinks is is "Super man" he has taken out on he bicycle to ride to delong and back roughly 10 miles one way it is -1 with wind chill of -15 he has tired the last 2 days and not gotten far…. I cancelled out his immunology on Monday because roads were snow covered and drifting from west to east and we would be coming home after dark was scheduled for tomorrow but i canceled out I am exhausted trying to keep our only heat going – wood stove – which he packed so tight it could not burn and blamed it on the wood; kitchen water both hot/cold froze so far bathroom is not …. we are in Northern Indiana and it has been brutal…. but i think we have survived it… there has to be better days ahead and I know God will provide….