D iane

Tomorrow is 3 years.  Still get a little emotional at times.  Don't like being alone.  I do have lots of family and friends around which keeps me social and helps with the loneliness. The cottage still isn't finished.  I'm taking the day off tomorrow to go down and do some work to keep myself busy.  Hope you guys are doing OK, I haven't been around in quite a while.

Erin good luck on your surgery.  Once you get the pathology back from surgery and a treatment plan in place, I trust things will settle down for you. It's not usual that uterine cancer would spread to your lungs, but it can. It would most likely show up somewhere else first.   It's also unusual that there is only 1 nodule. So, I trust what your GYN-O has told you.  It would also be very unusual to have 2 primary cancers at the same time (uterine + lung) highly unlikely. Hope that helps ease your mind a bit.  

Erin good luck on your surgery.  Once you get the pathology back from surgery and a treatment plan in place, I trust things will settle down for you. It's not usual that uterine cancer would spread to your lungs, but it can. It would most likely show up somewhere else first.   It's also unusual that there is only 1 nodule. So, I trust what your GYN-O has told you.  It would also be very unusual to have 2 primary cancers at the same time (uterine + lung) highly unlikely. Hope that helps ease your mind a bit.  

Hi. 
I still lurk around here once in awhile even though it's 2 years later.  We still miss him greatly.  So sad to hear about Lexie.  I didn't know what to post, so I didn't post anything.  I mainly read.  Hope you don't mind me bumping up this old thread, but around his anniversary it is like an honor to him, and to all of you who were here for me with support.
Trying to finish a 450 sq. ft. cottage down on the Chesapeake that he built.  It had 4 walls, a roof, windows and doors and one of the last times we were there together he was underneath running water pipe.  We hope to have some more done by his birthday in July.  I'll see if I can post some pics.
He actually built two.  First shot is the before.  he demolished the old ones.  Ours will be the one on the left side.  It's under a nice shade tree!  

Hi. 
I still lurk around here once in awhile even though it's 2 years later.  We still miss him greatly.  So sad to hear about Lexie.  I didn't know what to post, so I didn't post anything.  I mainly read.  Hope you don't mind me bumping up this old thread, but around his anniversary it is like an honor to him, and to all of you who were here for me with support.
Trying to finish a 450 sq. ft. cottage down on the Chesapeake that he built.  It had 4 walls, a roof, windows and doors and one of the last times we were there together he was underneath running water pipe.  We hope to have some more done by his birthday in July.  I'll see if I can post some pics.
He actually built two.  First shot is the before.  he demolished the old ones.  Ours will be the one on the left side.  It's under a nice shade tree!  

Hi. 
I still lurk around here once in awhile even though it's 2 years later.  We still miss him greatly.  So sad to hear about Lexie.  I didn't know what to post, so I didn't post anything.  I mainly read.  Hope you don't mind me bumping up this old thread, but around his anniversary it is like an honor to him, and to all of you who were here for me with support.
Trying to finish a 450 sq. ft. cottage down on the Chesapeake that he built.  It had 4 walls, a roof, windows and doors and one of the last times we were there together he was underneath running water pipe.  We hope to have some more done by his birthday in July.  I'll see if I can post some pics.
He actually built two.  First shot is the before.  he demolished the old ones.  Ours will be the one on the left side.  It's under a nice shade tree!  

Hi. 
I still lurk around here once in awhile even though it's 2 years later.  We still miss him greatly.  So sad to hear about Lexie.  I didn't know what to post, so I didn't post anything.  I mainly read.  Hope you don't mind me bumping up this old thread, but around his anniversary it is like an honor to him, and to all of you who were here for me with support.
Trying to finish a 450 sq. ft. cottage down on the Chesapeake that he built.  It had 4 walls, a roof, windows and doors and one of the last times we were there together he was underneath running water pipe.  We hope to have some more done by his birthday in July.  I'll see if I can post some pics.
He actually built two.  First shot is the before.  he demolished the old ones.  Ours will be the one on the left side.  It's under a nice shade tree!  

Bumping this up as I just re-read this whole thread.  Coming up on a year, things are so different.  We are doing fairly well with adjusting.  I did start on a low dose anti-depressant after 9 months of thinking I could do it without.  It is a help.  We miss him.  I still stop in from time to time and post if I feel it will be a contribution to the conversation, and maybe it will help someone.
The SCLC section is not very active, and we all know why.  It is a bit encouraging that there are some new studies (like identifying sub types) underway.  It is such an aggressive disease.
https://medicalxpress.com/news/2021-04-genomic-treatment-approaches-advanced-small-cell.html#:~:text=A%20new%20study%20of%20advanced%20small-cell%20lung%20cancer,linked%20to%20patients%20developing%20resistance%20to%20certain%20therapies.
https://www.eurekalert.org/pub_releases/2021-01/uotm-sds012121.php
 
Take care everyone, I thank you for all your support.

Bumping this up as I just re-read this whole thread.  Coming up on a year, things are so different.  We are doing fairly well with adjusting.  I did start on a low dose anti-depressant after 9 months of thinking I could do it without.  It is a help.  We miss him.  I still stop in from time to time and post if I feel it will be a contribution to the conversation, and maybe it will help someone.
The SCLC section is not very active, and we all know why.  It is a bit encouraging that there are some new studies (like identifying sub types) underway.  It is such an aggressive disease.
https://medicalxpress.com/news/2021-04-genomic-treatment-approaches-advanced-small-cell.html#:~:text=A%20new%20study%20of%20advanced%20small-cell%20lung%20cancer,linked%20to%20patients%20developing%20resistance%20to%20certain%20therapies.
https://www.eurekalert.org/pub_releases/2021-01/uotm-sds012121.php
 
Take care everyone, I thank you for all your support.

Bumping this up as I just re-read this whole thread.  Coming up on a year, things are so different.  We are doing fairly well with adjusting.  I did start on a low dose anti-depressant after 9 months of thinking I could do it without.  It is a help.  We miss him.  I still stop in from time to time and post if I feel it will be a contribution to the conversation, and maybe it will help someone.
The SCLC section is not very active, and we all know why.  It is a bit encouraging that there are some new studies (like identifying sub types) underway.  It is such an aggressive disease.
https://medicalxpress.com/news/2021-04-genomic-treatment-approaches-advanced-small-cell.html#:~:text=A%20new%20study%20of%20advanced%20small-cell%20lung%20cancer,linked%20to%20patients%20developing%20resistance%20to%20certain%20therapies.
https://www.eurekalert.org/pub_releases/2021-01/uotm-sds012121.php
 
Take care everyone, I thank you for all your support.

Bumping this up as I just re-read this whole thread.  Coming up on a year, things are so different.  We are doing fairly well with adjusting.  I did start on a low dose anti-depressant after 9 months of thinking I could do it without.  It is a help.  We miss him.  I still stop in from time to time and post if I feel it will be a contribution to the conversation, and maybe it will help someone.
The SCLC section is not very active, and we all know why.  It is a bit encouraging that there are some new studies (like identifying sub types) underway.  It is such an aggressive disease.
https://medicalxpress.com/news/2021-04-genomic-treatment-approaches-advanced-small-cell.html#:~:text=A%20new%20study%20of%20advanced%20small-cell%20lung%20cancer,linked%20to%20patients%20developing%20resistance%20to%20certain%20therapies.
https://www.eurekalert.org/pub_releases/2021-01/uotm-sds012121.php
 
Take care everyone, I thank you for all your support.

Silver lining was covid-19.  Working from home we got to spend more time with him.  Towards the end though, I couldn't do anything right.  He would shoo me away.  I know that I did good, he was just starting to decline and suffer.  After the brain radiation was complete, he started to get really bad.  I did everything I could to keep him out of a hospital setting. He had an appointment with the MO on Thursday and as soon as he saw him, checked his blood oxygen, and breathing,  he called an ambulance.  It was 78 or 79%, he was in afib,  yet I had him standing in the shower before the appt. rinsing him off.   I wonder if the Doc thought -What is she thinking?  He was so weak but aware and I believe still fighting.  We thought that visit would have been "the talk" visit.  We were not set up with hospice or any type of home care yet. 
So, we could not go into the ER.  Once he was admitted I was allowed to visit him on the critical care unit.  They said for an hour or two, but the nurses were great and Friday and Saturday I was there for more like 4-5- or 6 hours those days.  He gave up sometime Sat. night.  I tried to get the night nurse on the phone before the end of her shift and was told she was in the room with him, to call back after shift change.  They then told me it was OK to bring our children in as they saw it was time.  So glad they let us in for the special circumstances and we were by his side when he passed.  He died from respiratory failure, had pneumonia in the left lung.  That was the good lung, go figure.  As we well know, lots of people die more so from the complications of the treatments trying to fight the cancer.  To me, that's a little encouraging.  We need better and safer treatments!   Perhaps maybe in my lifetime there will be a cure to all cancers.

My husband lost his battle last Sunday, May 24th.  
 

Hi Steve.  If my husband would have responded better to the 1st line treatment for a time, he could have had the preventative radiation (you got the technical term!) which they say helps greatly with NOT developing brain mets.  I hope this will be the case with your wife.  He started last week and we have this week to go.  He is very weak, sleeping a lot and he does not want me taking care of him.  It makes him feel like an invalid he says.  Yet, I have to.  I have to make sure he is taking meds on time, and that I can ease his suffering a bit.  When I read the brain CT he has 15 mets.  I don't know if that's considered a lot but it seems like it is so.  I saw him cough up a little blood this morning.  I am a nervous nelly despite so far no cognitive dysfunction from this treatment.  He has to take memantime at different doses over 4 weeks.  Plus the steroid 2x.s a day.  Dexamethodone 4mg ea. Can only hope he can get thru it and we can go from there.  Going to be a very trying couple of weeks.

Thank you, all.
Just returned from the hospital for his radiation set up.  He will have 10 treatments starting Monday.  I do think this will push back his next chemo, I am going to ask.  Feel so bad I cannot go in the medical bldg. or hospital with him.  At least as long as he doesn't require assistance, which right now he doesn't.  Hopeful this treatment will at least kill the mets and give us a little more time, like months!!!  We'll see.

Husband had MRI yesterday.  We were only home for a little over an hour when the phone rang.  Primary Doc says it's showing what they believe is brain mets.  We already had the steroids here from treatment last week, he instructed us to take these daily as it will help with any brain swelling.  The MO also called and we should hear from the radiation oncologist today for an appointment.  I am assuming if multiple spots on both sides he will be getting whole head radiated.  At least he took the news OK -the steroids already have him up and moving and non stop talking (LOL) so it appears to me he will keep going until they tell him there is nothing else they can do for him.  Hopefully this buys us a couple more months?
As just me said, there is a positive from being under stay at home orders is that we do get to spend all this time together.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6976368/
 
https://ascopubs.org/doi/full/10.1200/JOP.18.00278
Thank you Steve.  I did a little more searching since you mentioned Paclitaxel.  I can always ask the Doc next week, but it seems the topotecan wins out with best supportive care although not always the best response rate.  Irinotecan is also in the study linked above.
Anyway, I can't read anymore.  It's grim from here.  He's within the 3 months and all these stats are bad no matter the drug.  I thank you again for the info.  I do not think he would be up to a clinical trail.  Maybe if we had gone longer.  He told me this morning, he thinking he's got 3 months.  At least he spoke to me. 

No need to apologize.  It's just grim I think anyway we go.  I do wish to speak up to the Doc informed as it never hurts to mention these other chemo's and challenge them a bit.  Get the full benefit/risk assessment from their perspective and past experience.
Our daughter has just gone over every report.  She is very analytical.  The only comparison to this scan was with the Jan one.  I assume because that's how they do it therapy wise as he is not being treated as curative of course.  It's all just sinking in right now.  We're deflated since everyone (medical staff included) was optimistic he would have a good response and could have had 2 months or maybe longer on just maintenance immunotherapy before progression.  As we know, the survival rates are better the longer a patient goes between progressions.  It is what it is.  We will be dealing with this as best we can.  He's pretty somber.  We shall see how it goes and I will let you know.
Blessings to you and your dear wife.

I've updated my signature with the results.  I read it last night.  He definitely has some stuff going on.  After his last treatment I think we knew something was up as he had almost ZERO pain.  The prior cycles he experienced a lot of pelvic area pain which I am now thinking was disease dying.  No pain may have meant nothing was being killed!  It's hard to differentiate between the two.  Now, he does have some pain in his right side, but not enough that he's eating pain pills.  Just Advil or Tylenol.
Must remain hopeful that this next chemo will let him live a few more months.  He is still really strong, and one never knows.  

Thanks Tom.  Easier said then done.  I'm basically flying by the seat of my pants here.  I've got the knowledge in my head but to ask and try to help him is something else.  I went and got him a laxative last night.  Not sure if it helped yet.  He describes the pain as nausea and wanting to vomit.  I'm sure he will let the Doc know on Thurs. how he's feeling. If not, I certainly will.
He is also obsessing over his diet with the upcoming PET on Friday.  I will give him plenty of protein and veggies.  They ask you to restrict  sugar a few days preceding the test. (As you already know)  Afterwards,  I will do my best to get the big gun calories into him before treatment starts.  

We are onto 2nd line treatment with topotecan.  I don't have the CT scan reports yet, but mass in right helium is larger and liver lesions are larger and there is more of them.
Blood work next week and a tele visit with the MO is set up the following day.  If labs are good and insurance gets authorized he will start the 20th.  It's a 30 min. infusion for 5 days every 3 weeks.  More pictures if he manages 2 cycles of this.
I do not see anything on this in the Chemo section, nor does anything come up using search?!   If anyone has any input on this please chime in.  So far I am only able to find a study from 2005 listing a 57% overall survival of 6 months and 27% for 1 yr.  There is a current study (Phase II)  going on comparing Topotecan to Keytruda.  I wonder if there is a 3rd line treatment?  Not good news, but there isn't much ever with this particular type of lung cancer.   He is very quiet.  Waiting to read the scans when they come, we are at least grateful they didn't mention anything "new" showing up.  Also think this would be considered re-factory and not a relapse since it's within 6 months?  Trying to understand that terminology as well.  /Sigh

Well after the Neulasta shot and treatment last week, husband seems to be doing well.  He's not taking many meds, he's tired of course and in some pain but he is handling it with Tylenol/Advil.   He seems to be coughing a bit more with more mucus yet not enough that he's out of breath or anything.  It could just be me worrying!
CT scans of chest and lower abdomen are scheduled for 6-Apr with our next appointment later that week.  This is week #3 for me WFH (working from home).  We're laying low in the meantime.  Will update you all after his scans.   Everyone stay safe and well!!!🙂

Hi everyone.   Hope you are all doing as well as can be in this mess!   Husband was cleared today to start cycle #7 tomorrow.  His platelet count was 56K 2 weeks ago,  86 last Thursday and has recovered to 196K this morning.   Can't tell you how terrified I am of him being so vulnerable thru the steroids, chemicals, and then the dreaded after effects that will last at least through the following week.  We will do our best to stay totally isolated from the world.  I am able to work from home and have been since last Monday.  I am NOT allowed to be in the treatment room with him.  The lab next door is only being used right now for the oncology patients.
I'll update throughout.  We are hopeful to reach a goal of getting through this cycle, then scan, and IF by the grace of God his disease is stable enough, he will be able to receive the immunotherapy infusion only for awhile.  I guess until next scan?  I can't go that far ahead.  Going one day at a time.  He is doing well and seems up and ready to go with more chemo.
Best wishes to all, stay well.

Hello.
Saw both the NP and the MO this morning.  His lab work is good so we are set up for cycle #6 to begin on Monday.  We discussed  him having some severe abdominal pain and we have concluded it is a side effect, which is actually good news.  I guess.  Came up with a few more ideas of knowing how he going to feel (it being predictable) will start during treatment days and keep the meds flowing until the side effects subside.  I am fearful but hopeful that husband will be a bit more proactive this cycle and can avoid this pain and not be in bed for 4 days.
The plan is to do #6 and a #7 then scan.  If this beast is knocked backed enough it's quite possible he can get a break from the chemo and just do the immunotherapy every 3 weeks.  This gives us something to strive for.  So we're staying the course.  Please wish him well for 2 more cycles!!!!  I hope he can get through them!!

Wishing you the best Tom.  It's so much in the beginning, you feel like your head might explode!!!  
I do hope once you get a few answers you are looking for, rule out any brain mets, and get underway, you will feel a whole lot better.  That combo is going to send any cancer cells into oblivion!  
My husband has extensive disease and his combo is working.  He is thankfully feeling better this morning!  I will still search for a way to better understand the process of treatment and the after effects.  For him, at least, there is a battle going on in his belly.  Trusting that it's the meds ridding him of the disease.