Pegi

Hi Lexie.....thanks and your right, this is really a great site, not only are the people so caring and informative, but the more I keep reading the posts I keep finding little tips and info to ask in my next appoint... its also a feel good place when  talking to people who are going thru the same fears and anxieties that I am....so glad were all here....vinnie

I guess I'm in now?????

Pegi & Michele,
I was tattooed on just the front of my chest.  Was told it was used to align the machine to my tumor.  Perhaps Rog needs to reposition during radiation and the second tattoo is for repositioning.  That is just a guess.  I really don't know.
Michele - don't feel bad about rambling.  We understand.  
I really don't know how my wife got through all my treatment mayhem but both of you ladies are doing the Lord's work and I'm sure your husbands appreciate it.  My wife and I now laugh at my antics but during treatment I was barely hanging on (like a cat hanging on a limb with one claw), but Martha ensured I stayed the course.
So, stay the course.
Tom 

Michele,
STRONG ....... OH heck no. I have a support system in FL of all places. And they are my family They are the pushing winds behind me. Our kids are here and they help somewhat. I try to keep them away from Lees family because they would go ballistic with them. Had my son tell me the other day my inner witch needed to quit hiding. Of course he used other words. He was right. She is no longer hiding and I fell SOOOOOO much better. you have nothing to fear but fear itself. The problem with any cancer is the UNKNOWNS. You have no control it does. People will tell you a lot of stuff and most of them in his family need a reality check.
Your husband made it to 6:30. I am impressed. Lee gets up around 6 am and is back in bed by 5:30 or 6 pm.
Take care of you first otherwise you wont be there for him. You matter too!
HUGS!
 
Peg

Michele,
STRONG ....... OH heck no. I have a support system in FL of all places. And they are my family They are the pushing winds behind me. Our kids are here and they help somewhat. I try to keep them away from Lees family because they would go ballistic with them. Had my son tell me the other day my inner witch needed to quit hiding. Of course he used other words. He was right. She is no longer hiding and I fell SOOOOOO much better. you have nothing to fear but fear itself. The problem with any cancer is the UNKNOWNS. You have no control it does. People will tell you a lot of stuff and most of them in his family need a reality check.
Your husband made it to 6:30. I am impressed. Lee gets up around 6 am and is back in bed by 5:30 or 6 pm.
Take care of you first otherwise you wont be there for him. You matter too!
HUGS!
 
Peg

Michele,
STRONG ....... OH heck no. I have a support system in FL of all places. And they are my family They are the pushing winds behind me. Our kids are here and they help somewhat. I try to keep them away from Lees family because they would go ballistic with them. Had my son tell me the other day my inner witch needed to quit hiding. Of course he used other words. He was right. She is no longer hiding and I fell SOOOOOO much better. you have nothing to fear but fear itself. The problem with any cancer is the UNKNOWNS. You have no control it does. People will tell you a lot of stuff and most of them in his family need a reality check.
Your husband made it to 6:30. I am impressed. Lee gets up around 6 am and is back in bed by 5:30 or 6 pm.
Take care of you first otherwise you wont be there for him. You matter too!
HUGS!
 
Peg

Michele, So far no luck figuring out who sent those people. Sooner or later it will show up. Lees cancer is I guess so far advanced that they are only doing chemo with him. Do not know about shrinkage yet. It is on my list of ??? for Dr on Monday. Actually weaker had an appt today with a colon & rectal surgeon. Seems he has a rectal fissure and it is quite painful. They really could not do a complete exam. Sent us home with more scripts and he is to return in 3 weeks or earlier if it worsens. Worse case they put him in hospital and knock him out to do a complete exam. They kept asking us about constipation. I told them the problem was diarrhea for the last 3 months before he was diagnosed with cancer. So even diarrhea can cause fissures and chemo makes it worse. We live in Southfield MI.
I hope by chilling this weekend you do not have a revolving door for visitors. I just want one day not to do anything. One day at a time one step at a time....... I bet Tom would know why they did both sides. for the tattoo.
Take care,
Peg

Michele, I pray you get 3 complete weeks to regroup. There never seems to be that time between other Dr. appt and all the other stuff that comes up. Today I had GoDocsGo here for what was supposed to be a home evaluation to see what someone can do to help him. I was not comfortable with them and they wanted me to sign ppwk before they even got started. I have done a google search on them and they have some pretty crappy ratings. One person tells me one thing and another has a different story I am confused enough and do not need this. They could not even tell me what DR signed the order which really had the red flags flying. I had talked to our primary care Dr. yesterday and he was not even aware of this. So much for communication. He did advise me NOT to sign anything. There are SOOOOOO many scams out there. 
i pray your husband is settling down. I pray for God to give you the strength you need.
 
Peg

Michele, I pray you get 3 complete weeks to regroup. There never seems to be that time between other Dr. appt and all the other stuff that comes up. Today I had GoDocsGo here for what was supposed to be a home evaluation to see what someone can do to help him. I was not comfortable with them and they wanted me to sign ppwk before they even got started. I have done a google search on them and they have some pretty crappy ratings. One person tells me one thing and another has a different story I am confused enough and do not need this. They could not even tell me what DR signed the order which really had the red flags flying. I had talked to our primary care Dr. yesterday and he was not even aware of this. So much for communication. He did advise me NOT to sign anything. There are SOOOOOO many scams out there. 
i pray your husband is settling down. I pray for God to give you the strength you need.
 
Peg

Charlotte,
We completely understand your panic attack.  Most everyone here had a surprise lung cancer diagnosis and it is very unnerving.
OK! So you have a treatment plan and with some adjustments (there are always adjustments) your treatment is proceeding according to plan.  One question though, has your oncologist considered radiation?
We also understand the deaf ears.  In my early office consultations during the typing and staging trail, my wife did all the Q & A with the doctor.  I was too afraid to question and recall watching the second hand movement in the consultation room clock and wondering how many cancer cells multiplied each second.  But I shook off the diagnosis shock and started to research and learn about my disease.  Here is a good resource for you to start with.  Knowledge is power and you need to acquire enough knowledge to ask the TPQs - terribly preceptive questions.  
Chemotherapy works.  My evidence?  I'm here more than 13 years after diagnosis.  There are folks on this site who have survived longer.  I also firmly believe one's attitude does have an effect on treatment and outcomes. I'm glad you haven't mentioned survival statistics but like most, you've probably Googled.  Well since attitude counts so much (again, my belief) here is a piece I wrote a while back on survival statistics.  Do listen to the linked essay of Stephen J. Gould in the blog.
You've chosen treatment and while lung cancer treatment can be a tough row to hoe, most of us receive extended life.  I made a vast mistake during my treatment.  I had four periods of "no evidence of disease" or NED and I fretted and worried myself nearly to death instead of enjoying the extra life NED brought me. In light of my mistake and hoping you don't repeat it, I suggest reading this. You might even watch the movie and discover the connection between Shawshank Redemption and lung cancer for yourself.
You'll have questions I'm sure and this would be a good place to ask.
Stay the course.
Tom
 

Peg I'm so sorry your family is giving u hard time.they should be there for you! I'm also feel bad that your husband is more fatigued. I'm hoping you are OK! Its hard its only our first round series and it already kicked him in the butt.off for 3 weeks could only imagine what's ahead. I will keep praying for Lee along with mine.

Tom, I did receive you response before the appointment and it helped me to just come out and ask versus sugar coating it. Thank you!

Steff,
Your mother's question is valid and sorry I wasn't able to chime in before the consultation.  But, I wouldn't worry about offending doctors.  You pay for their time and therefore have an implicit right to ask or complain about anything they do or fail to do. If it were me, I'd simply ask the question: "why was this not discovered earlier." That said, I wouldn't have a clue why the recurrence escaped detection.  Hope the session went well.
Stay the course.
Tom

Hi Peg thank you for asking. The first 2 days of chemo have been long days.we have to drive hour and 20 minutes to get there due to having to go to the VA yesterday he came home and went straight to bed he was so tired. Today is 3 rd  day we will be leaving in a hour .he is glad its the last day. They are giving him cisplatin and etoposide.so far he is doing alright except for fatigue and getting constipated so I have to get prune juice. I guess this weekend side effects jump in ;hopefully he doesn't get them.he was told to stop taking blood pressure meds Cuz it dropped to 85/44 so they had to give fluids before chemo yesterday. I appreciate your concern and I will update  his progress thank you so much.  PS. How is your husband doing?  Sincerely Michele.

Michele, Just checking in to see how your week is going.... Let us know when you get the chance.
 
Peg

I have had 3 rounds with cancer. My first was in 1992, I was diagnosed with Gallbladder cancer. No symptoms, just one gallbladder attack. For whatever reason, the doctor decided not to wait but to remove it. I had surgery two weeks later. The strange thing was that when I went back for the follow up, I came to a complete stop when we were walking into the building. I can still  remember it so clearly. I had such a feeling of dread pass through me. I told my husband that I had a bad feeling that they found something bad, of course he thought I was being silly. They had, the pathology report came back ,found cancer. Now, it is very rare and they didn't know how to handle. Some research was done and another surgery to clean up and take samples. It was contained to the gallbladder and no further treatment was needed. Then in 2008, I had a routine appointment with my PCP, normal yearly chest x-ray was done. They found a small spot in my left lung. So, tests and more tests. They removed my upper left lobe in April 2008, stage 1B, N0, M0. I started feeling very sorry for myself, moping around the house and eating and gaining so much weight that I could hardly move. One night I decided that I had survived cancer twice but I was going to let the weight kill me. So, I started working out and watching what I ate. I lost the weight and started running. I have done countless 5k's, 10k's and 2 1/2 marathons.  There was still a place inside me that felt guilty for surviving without having to go through treatment.   I was hesitant to tell anyone that I was a lung cancer survivor, still such a strong stigma  attached to it. Fast forward to 2017. Routine blood work, except my PCP ordered a different one that my oncologist didn't order. The numbers were on the high side, wait a couple of months and repeat, higher yet. OK, the start of all the tests again. Small nodule in my upper right lung. Saw a new oncologist (mine had retired), he said let's wait and see, next day it went in front of the tumor board, change of plans, lets get rid of this now. June 20th they removed my upper right lung, stage 1A, N0, no  further treatment need just monitor for the next 5 years. I am walking more and getting ready for my first 5k post surgery. I have decided that I can become a voice for early detection. I have lost family and friends because they waited until it was too late. Former smokers and people with a family history of cancers should get regular check ups so anything can be caught early in the game.I want to let people know that you can have life after lung cancer, it is not always a death sentence. My first 5k is on September 10th and it is for cancer patients, all money raised goes to support the patients in need. I have had a special shirt made up just for my runs.
I can't attach a picture of the shirt, but the back reads:
Early detection works
1992- gallbladder cancer
2008 Lung cancer - upper left lobe
2017 Lung cancer - upper right lobe. 
The front simply states that there is always hope.
 
Thank  you for letting me share.

This is something you should call the dr about. He will be given steroids as part of the side effects management and this is something he can't do without. It may take a few infusions before they have an adverse effect but don't chance it. Your dr would rather hear from you before it becomes a problem.

Do ask for a referral for an evaluation with the oncology nutritionist.

Concurrent chemo and radiation can be quite debilitating and if the amount of time off you're going to have to take is an issue for you, he will need you more then.


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Peg,
I'm also sorry to hear of the advance. Some would say no lung cancer is curable. In fact, it has such a high probability of recurrence we use the term NED (no evidence of disease) rather than cure. I hope his new treatment routine contains the cancer.
Stay the course.
Tom

Peg I'm sorry to hear his is advanced. I will pray for him! Thank you for all info. Talk to u soon.

Michele, Lee is advanced Stage IV small cell metastasized to liver.They tell us not curable BUT containable. The objective is to kill and shrink tumors. They told us to get our ducks in a row. We have already told DR when it comes to quality of life we will decide what is best for him. They gave him 6 weeks w/o treatment. Nothing is guaranteed. Right now I take each day it comes. He does continue to deteriorate (weakness). He lost ALOT of muscle & fat. We had a trip to ER this morning. Rectal bleeding. Has another Dr appt for that on Thursday. They say hemorrhoids BUT I have never seen so much blood from that. Just another bump in the road.
had a new set of wheels delivered for him today. Walker. It helps alot even getting into and out of his recliner.
You have a good list of questions started for tomorrow. USE THEM ALL!  Keep us posted! Hugs & prayers.
Peg
 

Let me add that MD Anderson has support groups for patients and additional support groups for care givers. It's very empowering to sit with a group of people who know what it's like to hear the words, "You have cancer".

Having been part of both survivor and care giver groups I can assure you that we laugh more than we cry.

https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/support-groups.html


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Michele of course the weekend is here and any questions you may have for Monday cannot get answered. Pack him a small bag. Book, computer, tablet, maybe some Gatorade, some favorite munchies. I know we walked in with no basic knowledge of what was to happen. Pretty scary. I made sure I fed him before we went..Our cancer center does supply munchies and water and warm blankets if needed. They are going to do a blood test first. Then if prescribed they will give him drugs to help prevent nausea and then comes the chemo. 1st day is always longest. Next 2 days are shorter. Our tech was awesome and she answered every question I had written down. I do not go there without my notebook. My husband always reminds me if I forget. Do not be afraid to ask for printouts for the drugs and other procedures.You have the weekend write down all those questions.
Unfortunately I have files for everything going on. It also helps you to keep a journal of this journey. the journal will also help you vent. I am not working right now and I cannot imagine having to work and do this also. Lee collapsed @ work and that sent us to ER and that was the start of our journey. This hit him hard and fast and thru it all he simply amazes me.
I pray your husband has no nausea which for us has been a Godsend. Hard enough dealing with all the other stuff without that too.
 
P.S. You are human those nerves are gonna be pushed to the limit. I have yelled and screamed at some family members for some of the stupid stuff they have pulled. Lee and I are a team and you either get behind us or get left in the dust. I no longer have time for any kind of drama.
Hugs & prayers!!! God is always working even when we think he's not there.

Michele,
Here is another pathway to hope.  
Stay the course.
Tom

Michele, like you I am now on this journey with my husband. We have hope but we are also realists. Right now I am grateful for everyday past 6 weeks. 2 rounds of chemo down and once the initial shock wears off you take one step at a time one day at a time. There are so may UNKNOWNS like waiting for test results. Thank God the hospital has a place where we can get results quicker than the dr's. Do I have days where I am overwhelmed? Oh heck yes! Am I worn out? YES! Did I stop by my primary care Dr to get a B12 shot? YES! And I feel much better after 3 days. We are in this fight together and we stand united in front of family even when they disagree with us. It is our path and our choice not theirs.
 
Peg

Michele, like you I am now on this journey with my husband. We have hope but we are also realists. Right now I am grateful for everyday past 6 weeks. 2 rounds of chemo down and once the initial shock wears off you take one step at a time one day at a time. There are so may UNKNOWNS like waiting for test results. Thank God the hospital has a place where we can get results quicker than the dr's. Do I have days where I am overwhelmed? Oh heck yes! Am I worn out? YES! Did I stop by my primary care Dr to get a B12 shot? YES! And I feel much better after 3 days. We are in this fight together and we stand united in front of family even when they disagree with us. It is our path and our choice not theirs.
 
Peg