Pegi

Jane, Going thru this battle myself right now with my husband. It is scary and a whole list of other emotions. First and foremost QUESTION EVERYTHING! Write it down when you think of it and keep that notebook with you for all appointments. No question is considered dumb or stupid. Hugs & prayers. This is not an easy road to go down.
 
Peg

Update on Lee: When we started this journey we were told he only had 3-6 weeks to live without chemo. Chemo gave us the time to get all of our ducks in a row. Lee's condition continues to deteriorate on a daily basis. The game plan is to finish chemo. 2 more rounds takes us to the end of October. A ct scan will be done again 7 days after last treatment the 1st week of November. The chemo is holding this beast at bay and once that stops this fast aggressive beast will take over. There is no cure and nothing more to be done. If he gets to weak to go out the door for treatment it will all be stopped.
This is not an easy journey that he is on. I do not wish it on anyone. The hardest thing I will have to do in my life is to let "MY PARTNER IN CRIME" go free.

There are no stupid questions. How do we learn what we are up against if we do not ask. I do recommend writing all your questions down. It helped me initially and even if the question seemed dumb I still needed the answer. The elephant in the room which no one wanted to ask was how long? My husband and son were kinda shocked when I did ask but I needed to know all of our options. So please ask away!
Hugs / Prayers,
Peg

Here's the latest update on my cancer.
Went to the VA clinic this past Wednesday and saw both primary and pulmonary doctors.
The cat scan showed that both the larger and smaller cancers had shrunk by 1/3. Hip hip hurray!!!
Next week, will be seeing the radiation and chemo doctors and they will make a determination as to what the next step will be.
So that was great news in itself and now just waiting what the next step to fight this cancer will be is most encouraging. It's all good.
And it's due to the wonderful support of those of you and you know who your are, that prayed and sent healing energy to me. All positive energy helps to heal the mind, body and soul and it has done lots for me and mywife too.
Thank you all from the bottom of our hearts. Oh and the doctors all helped to expedite the treatments too, gotta give them some credit.

Thanks Tom?

Michele,
OBTW, you can private message using functions on this site.  Go to the envelope next to the bell icon at the top of the page. Select "Compose New" at the top right hand part of the window. Type the name of the person on the site you want to message, and type your subject and message in the annotated areas.
Stay the course.
Tom

Peg I'm so sorry u had a rough weekend with his family. But u did the right thing! I pray his scan shows good results.I like to give u my phone number in private somehow so if u ever need to talk or anything just let me know. Hopefully u guys will have a peaceful weekend coming up. I will have u both in my prayers.  Sincerely Michele

Hey Michele, Finally have a small window to slow down and try and catch up. we never get that peaceful weekend because they just have to visit. This last Monday was the last straw. I am done being nice to his family. They showed up 1 hr early and I was not even dressed yet. Lee of course was ready. They do not get it at all. I blew up and they chalked it up to me being stressed. They were only to be here an hour. After an hour & 45 minutes I told them all to get out. I am done. I am no longer answering their calls or reporting in. Not my problem. They can call Lee and the chances of him having his phone on are slim to none. After they left I had to give him a breathing treatment and his pain level was at about 8 for the rest of the day. Not fair to him or me. One of his buddies stopped by yesterday and stayed over 2 hours. Way past his lunch time. After he left he asked me why I did not ask him to go earlier. Told him he had lips and since no one gets the clue from me it has to come from him.
It would be different if they came in to help with housework or meal prep. They do not understand that after they leave I have to disinfect everything. This cancer sucks and I watch Lee just exist. There is no quality of life. It hurts and you just do what you can to try and help them get the rest they need and be pain free.
Lee completed Round 3 last Friday. This week Tuesday he had a port put in which I am hoping will help. Today we went for a CT Scan to see what is actually happening with the tumors. Dr visit on Monday to discuss that one. I should be able to get the test results online before that. I am off to bed and hoping for a full night of sleep for both of us.
Take care.
Hugs & prayers, 
Peg

New plan for me, my dad and I planned for me and my family to go visit after his whole brain radiation this week. He's been putting off my visiting for a long time now. It's either that he doesn't want to plan too far ahead or he says his blood count is too low (he canceled twice before because of this). In my mind, he doesn't seem to want visitors. I think he doesn't want it to feel like people are saying goodbye (I may have said this before). Anyway, he just canceled again. Said his blood count is low, even though even he has said, in the past,  when  he gets a shot to help, he bounces back within a day or so, and we weren't going to be there until Saturday, we were going to stay at a hotel and would only stay an hour or whatever he could handle. We'd wear masks if he wanted as well. 
But it is clear to me he isn't into having us. He said his radiation oncologist thinks he can blast his brain mets away for at least a year. He's getting his chemo for recurrent SCLC but "feels great." And his wife won't talk to me or let me know anything. I'm going to just leave it in his hands. I can't force or make him want to see me. Only the good Lord knows what he's thinking. I'm just glad I saw him when I did and that I made peace with our tumultuous relationship and forgave us both years ago. 
Thanks to all of you for supporting me and being there for me to learn what I have. It meant the world to me. I certainly won't give up hope for my dad, I'm so glad for him that there are still options that I wouldn't have known about had I not come here. I'm sure I'll keep coming back to learn, and see if I could pass things on to him. You all deserve the very best care and health. <3

Daughter,
I am so very sorry to hear of your dad's recurrence.  That is what it is called when cancer returns -- a recurrence.  And unfortunately, recurrence with lung cancer is common.  I have non small cell squamous cell lung cancer and experienced four recurrences after treatment that showed me to exhibit no evidence of disease or NED.  Because lung cancer and in fact all cancer for that matter recurs so frequently, the treatment community has moved away from the word cure.  Remission is still used but the definition has narrowed to cancer that stops growing either as a result of treatment or not.  Here is a good summary of lung cancer that will acquaint you with basic terms.
What is the recurrence timeframe?  Mine were 6 to 8 months after last treatment.  It is not unusual that the duration is shorter or longer.  Everyone's cancer is somewhat different.  How effective will his second line treatment be?  The Lord only knows.  Cancer is a disease of one's genes.  Everyone's genetic structure is different thus on reason for the variability in treatment outcomes.  But, chemotherapy kept me alive for 2 years till a new treatment emerged from research to cause me to achieve NED.  In fact, I've lived nearly 14 years after diagnosis and many in fact on this site are long term survivors of lung cancer.  Those with small cell lung cancer are following emerging research in targeted therapy and immunotherapy.  These new methods are promising advances for small cell treatment.  Read about these here at the Clinical Research Study down arrow.
You may point your dad to this site as a place where he can understand and ask questions about his treatment and interact with survivors. Questions?  This would be the place for those.
Stay the course.
Tom

Hi, I am Mary Lou, I am glad to have found a support group for people living with Lung cancer; with prayers and love, Mary Lou

Hello again, its been a while since I have been here. Just wanted to let the great folks here on Lungevity know I am recovering about as normal as possible after the removal of my upper right lobe surgery on May 18th. Hey! exactly 3 months to the day. The pain in the chest and back are pretty much healed, still have the daily zingers, which I understand are normal, but other than that life is good.  For those who might be having some  of the normal worries and concerns facing a lung surgery, I will be honest its not a walk in the park, but it is very much doable. Mine was open surgery and I was blessed with clear margins and no other sign of Mets at all, and with the Lords grace no chemo or radiation needed at this time. My first 3 month doctors visit is coming up the first of September and I CAN NOT tell  a lie I am pretty nervous. But praying that all will go well, and NED will be my new motto. I will keep everyone here in my thoughts and prayers as well, and those who feel as though this might be to much to bare, don't try to take on this trial on your own, ask the Lord for his help. Understanding Grace is the key. We do all we can with adversity, we do our part, and he will make up the difference. Wish you all well, I will let you know the out come of my up coming procedure.
 JWH... 
 
 
 
 
 
 
 
 
 
 
 
 
 

Hi there,
I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 
I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions
When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.
I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care
 

There are no stupid questions. How do we learn what we are up against if we do not ask. I do recommend writing all your questions down. It helped me initially and even if the question seemed dumb I still needed the answer. The elephant in the room which no one wanted to ask was how long? My husband and son were kinda shocked when I did ask but I needed to know all of our options. So please ask away!
Hugs / Prayers,
Peg

Michele,
 Last night brought us both about 8 hours of solid sleep. Our consult with our family Dr was an answer to a prayer. He took him off Norco which was doing nothing. Gave him Ibuprofen 800 2x a day with the gabapentin. he gave us Hydrocortisone 2.5% and told us to keep also using the Lidocaine. He also told me not to use the prescribed ER drugs for constipation because both are harsh and result in pushing which we do not need. Lee's problem has been chronic diarrhea since end of March not constipation. The chemo & that caused the fissure. His pain level today maxed out at around a 3 and day 2 of chemo. Tomorrow brings end of round 3 BUT they need to put a port in.
 
How are things going for you both??
Peg
 

Blood test show the numbers going up slowly. Cat scan coming up the 16th of August will tell more. 
Still no energy and still not gaining weight or strength back. Doc says it takes time to heal but of course I'm in a hurry. 
Will post when I get more news. 
Dave, DragonKing
 

Dave,
Ring that radiation complete bell!
i hope your August appointments yield good results. 
Stay the course.
Tom

Sherri that's great your MRI was clean same as my husbands. He starts this coming week 2 nd  cycle chemo and first round of rad .last night and all day today we spent time in hospital because he started a fever.he was doing so good before that. He is all better now will see how round 2 does.  Enjoy your haircut!   Best wishes Michele

Thank you all so very much for the warm, supportive welcome.  What a long week last week became.  Stayed with my daughter so I wouldn't be alone during the day and she could take me to my appointments.  Forgot to grab my laptop when I went out the door.  My husband works long hours and is struggling so much with his emotions and not being able to be with me during all this.  Had to reassure him that I wouldn't be able to get this treatment if not for him and all his hard work.  
I had my first cycle of chemo and my first week of radiation.  Did well on the first day, but wow, did Day 2 wipe me out.  Day 3 wasn't too bad, except that's when my taste buds changed.   I'm doing four 3-day cycles of Cisplatin/Etoposide and at least 30 days of radiation.  The MRI came back clean, as well.  I am def. limited stage at this point.  I felt like I hit the lottery when my oncologist told me the only thing in my head was my brain, lol.  
Love that shirt, Susan.  My daughter chopped off my ponytail, but then my kids said I should leave my hair short for a week because it's been so long since they've seen me with hair that short.  I left it, but it's going bye-bye tomorrow.  Bed head all day isn't a good look for me.  My youngest still shaved his head in support.  
I'm just so thankful for all the support here, and that I found this site, but wish so badly that no one needed a place like this.
This new diagnosis and knowledge is the scariest place I've ever been.  

Michele, 
Well we had a rough night after coming home. Spent most of yesterday napping, snoozing & eating. They gave him all kinds of stuff and I think I have it all scheduled and lined up for times during the day. He is somewhat better than before. The pain meds  are helping with that. 
The only way I good get him to finally settle down the other night was to take the heating pad and put a warm hot towel on it and let him sit on it. And trust me we tried everything else. He was able to get it all settled down again and back in bed for about 4 hrs sleep. Needless to say we both spent yesterday napping. Last night was good. We both got some much needed sleep. Seemed kinda stupid to wake him up @ 1 am to give him a pain pill but it had to be done. He went back to sleep.
I have to tell you the Dr came at me in the pre-op room about my insurance. She was not nice and quite frankly I could care less. Someone must have handed her head to her on a plate. She was not happy. Last thing I need is a DR with a bad attitude. He has to have follow up in 2 weeks BUT I will not take him to her. I will call the insurance co and see who else is in the area from our networks. She was out of network approved. All her staff had to do was call and get the authorization #. Insurance is bad enough now days and this was just BS!.
How are things going with you guys? I am so glad the MRI was clean. Have a great day!
Hugs & prayers,
Peg

Daughter,
I would say the objective of second-line treatment is to achieve a reduction or elimination of tumor or tumors.  You are correct, there will likely be an in-process scan about midway through and then decisions on continuing or changing therapy.  
Your dad will need his family to close ranks around him.  Lung cancer treatment is not easy, especially the daily treatment like your dad will endure.  My view, past relationships are immaterial.  I would not have made it through my treatment without my wife and daughter.  Their contribution was immeasurable. I am quite sure your dad will appreciate your engagement.
By all means, pick our brains.
Stay the course.
Tom

Isn't the shirt great?  Got lots of smiles from my fellow baldies at the oncology center.

One day at a time one step at a time. Life is too short to have regrets. Love & compassion till the end.
Hugs & prayers,
Peg

Vinnpal, You are in now. Welcome.
 
Peg

Michele,
Today was rough. They did find a fissure and with chemo it will take a LONG time to heal. I finally got him home and settled in for the night hopefully. Right now he needs sleep and rest. They gave him enough meds to choke a horse. i HAVE A LOT OF READING TO DO TOMORROW!
Well the settled in did not work, He is back down in his chair and in pain. Will keep you posted.
Peg