Steff

Bernie,
I am very happy to hear Opdivo is working so well for you! My mom just began Keytruda and we are hoping to have positive results too!  I'm sure some other folks will soon chime in on your post that either have personal experience with Opdivo or can point you in the right direction.  Take care!

Karin,
My mom had an right upper lobectomy in January 2015. She continues to have pain (no numbness that she talks about) around the incision and back to her shoulder blade.  Her surgeon and oncologist say it's pretty common due to all of the nerves in that area.  The pain in her shoulder blade was bad enough recently that she was pretty sure cancer had spread to her bones (she's currently battling a recurrence on her trachea). Her scans showed that the cancer had not spread. She has tried different bras because the scar is where they rub but hasn't had much luck.  There are some ladies at the cancer support group that she attends who swear by rubbing lotion with marijuana in it on their scars to help with pain, but my mom doesn't want to use anything like that - I see you live in WA, so maybe this is an option for you (For the record, I am not in support or against it!).  I've heard both good and bad about it and you may want to check with your oncologist before thinking about trying it.  As mentioned by Tom, water aerobics and just being in the water also helps my mom with the pain.  
Sorry to hear of your constant pain, take care.

Hi I was diagnosed in June of 2015 with NSCLC i am now 54 and i am doing great the infusion nurse as well as my doc says that i should be the poster child for Opdivo. When they say that each cancer patient is different they were not kidding, i can't seem to find others that have the same things going on with them as i have going on with me.
 

CONGRATS!!! So very happy for you!

Nan,
My mom, who is obese with controlled diabetes, had her upper, right lobe removed over 1 year ago.  She had a large incision and still feels pain from it and pain under her shoulder blade.  After about a month of recovery, my mom started to breathe better.  She had to have fluid removed from her lungs a few times and still has fluid around her lung over 1 year later - her doctors say that's normal and the fluid continues to decrease.  Both of these issues affected her breathing to begin with.  She didn't breathe well before the surgery but breathes much better now, but she had to work up to it.  Once she was done with her cancer treatment after surgery, she attended a pulmonary exercise class at our local hospital.  She has attended regularly for many years as she needs it and it does wonders - they monitor your oxygen level and heart rate.  As others said, she also does water walking a few times a week.  Although she doesn't lose weight, she keeps her muscles in shape and gets her breathing up.
She also swears by her CPAP (as others have said, if he hasn't had a sleep study, he should).  Although she was on oxygen after surgery, she is no longer on oxygen full time.  She does have oxygen piped into her CPAP while she sleeps and it helps with her O2 levels throughout the day.  Finally, (as others have said), my mom also swears by her adjustable bed so she can sleep in an elevated position when needed.  She used a wedge pillow for many years and when my parents needed a new bed, they just decided to get an adjustable one.
I hope some of this info helps or provides some hope. Your husband's breathing will likely get better. Might he need to be on oxygen full time? - maybe. but if my mom was able to get off of oxygen full time thru exercise, there's a chance your husband can too.  

Welcome BeeLouise,
I'm sorry to hear about your struggles.  It can be tough to find a new "normal" after having a portion of your lung removed and dealing with a chronic condition.  I am a caregiver for my mom, who is currently fighting a recurrence of Non-Small Cell Lung Cancer (NSCLC).  She had her upper right lobe removed during her first bout with lung cancer and although she sounds the complete opposite of you physically and age-wise, maybe her experience can give you some insight.
First and foremost, my mom is not the ideal picture of good health, she is 63, obese and has multiple health issues, including COPD which affects her breathing.  My mom was a bit different in that she felt that she could breathe better after her surgery - the lobe they removed was filled with emphysema.  But her O2 levels regularly drop as she is walking and she has been on oxygen on and off for a few years.  She has oxygen piped into her CPAP at night as well.  A couple of thoughts come into my mind in thinking about your exhaustion.  1) Your body is probably still getting over major surgery, especially since it sounds like you didn't have the best aftercare from the hospital.  2) While running, your oxygen levels may drop enough to tire your body out (my mom gets really tired when your oxygen levels dip or if she doesn't have oxygen in her CPAP at night). 3) Have you had a sleep study? I don't know if sleep apnea is more likely after a lung lobe removal (my mom had it before surgery), but it may be something to look into - it could also be a reason for your exhaustion. 
Do me a favor, give yourself (and your body) a break!  Although you are young and sound quite healthy, your body still has to adjust to a huge change in smaller lung capacity and having a chronic condition.  Your new "normal" may be doing other types of exercise besides running.  I don't really have much for cardio suggestions - when my mom feels well enough to go, she does a pulmonary rehab exercise class at our local hospital (treadmill, elliptical, etc) and water aerobics and water walking.  She looks for low impact exercise because she had rheumatoid arthritis.
There are several folks on here that have a military background and can likely understand exactly what your are dealing with.  I am glad you found these forums.  I have been involved for a few months and it has really helped me cope in trying to find a new "normal" with my mom and dealing with her battle.  
I wish you the best.

Thanks so much for all the prayers and support. I heard from my doctor and I am OK! No cancer!! He said it was just scar tissue! I will continue to pray for those of you battling cancer!  

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

Lauren 
My 5k is in Livonia Michigan. This is such a great event for all cancer patients, caregivers and survivors. I just started back adding some running in today. I should be ready for the run in September. It might be more walking, but I'll take it any day. 

Really great!!!  He was prescribed 10 mg of prednisone 3x a day and oxygen at level 3. He is on 10 mg once a day now.  Also, ( this is the best part for him and us) he goes out everyday and works around in the yard for a little while...something he adores doing!!!!  His hair is coming back in really fast and with the prednisone he has gained about 5 pounds...he lost about 20.  We are all so thankful.  He has a follow up appointment with radiation next week and then in September with his chemo oncologist and pulmonologist.  Thank you for asking!!!!

FDA Grants Genentech’s Alecensa Priority Review for Initial Treatment of People with ALK-Positive Lung Cancer
South San Francisco, CA -- August 2, 2017 --
Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), announced today that the U.S. Food and Drug Administration (FDA) has accepted the company’s supplemental New Drug Application (sNDA) and granted Priority Review for Alecensa® (alectinib) as an initial (first-line) treatment for people with anaplastic lymphoma kinase (ALK)-positive, locally advanced or metastatic non-small cell lung cancer (NSCLC) as detected by an FDA-approved test. The FDA will make a decision on approval by November 30, 2017.
“Phase III results showed Alecensa reduced the risk of disease worsening by more than half compared to the current standard of care and lowered the risk of tumors spreading to or growing in the brain by more than 80 percent,” said Sandra Horning, M.D., chief medical officer and head of Global Product Development. “We are working closely with the FDA to bring this medicine as an initial treatment for people with ALK-positive NSCLC as soon as possible.”
This sNDA submission for Alecensa is based on results from the Phase III ALEX and Phase III J-ALEX studies. A Priority Review designation is granted to proposed medicines that, if approved, the FDA has determined to have the potential to provide a significant improvement in the safety or effectiveness of the treatment, prevention or diagnosis of a serious disease.
Alecensa received Breakthrough Therapy Designation from the FDA in September 2016 for the treatment of adults with advanced ALK-positive NSCLC who have not received prior treatment with an ALK inhibitor. Breakthrough Therapy Designation is designed to expedite the development and review of medicines intended to treat serious or life-threatening diseases and to help ensure people have access to them through FDA approval as soon as possible. Breakthrough Therapy Designation was granted on the basis of the Phase III J-ALEX trial.
Alecensa was granted accelerated approval by the FDA in December 2015 for the treatment of people with ALK-positive metastatic NSCLC who have progressed on or are intolerant to crizotinib. The ALEX study is part of the company’s commitment in the U.S. to convert the current accelerated approval of Alecensa in people with ALK-positive, metastatic NSCLC who have progressed on or are intolerant to crizotinib to a full approval as an initial treatment.
Read the full press release here.

JustMe,
My mom is on Keytruda and chemo - is having her 2nd dose Friday. We've heard many times that sometimes with Keytruda, tumors can grow initially but then typically reduce after the 1st scan occurs.  If he's already having a scan (they will not do a scan for my mom until her 4th treatment, so about 12 weeks), perhaps the initial growth is due to natural immunotherapy reaction???  Perhaps the oncologists main concern is not that the main tumor grew, but there is more involvement???? It might be worth asking the oncologist so you fully understand why the quick switch of treatments.
Although my mom is further behind in her treatment than your husband, she is experiencing similar symptoms - extreme fatigue and depression (even tho she says she's not depressed!).  I agree, it's really tough to see, especially when you just "accept" one treatment plan and then they switch it up on you.  I'm so very sorry.   Best wishes

Nan,
My mom, who is obese with controlled diabetes, had her upper, right lobe removed over 1 year ago.  She had a large incision and still feels pain from it and pain under her shoulder blade.  After about a month of recovery, my mom started to breathe better.  She had to have fluid removed from her lungs a few times and still has fluid around her lung over 1 year later - her doctors say that's normal and the fluid continues to decrease.  Both of these issues affected her breathing to begin with.  She didn't breathe well before the surgery but breathes much better now, but she had to work up to it.  Once she was done with her cancer treatment after surgery, she attended a pulmonary exercise class at our local hospital.  She has attended regularly for many years as she needs it and it does wonders - they monitor your oxygen level and heart rate.  As others said, she also does water walking a few times a week.  Although she doesn't lose weight, she keeps her muscles in shape and gets her breathing up.
She also swears by her CPAP (as others have said, if he hasn't had a sleep study, he should).  Although she was on oxygen after surgery, she is no longer on oxygen full time.  She does have oxygen piped into her CPAP while she sleeps and it helps with her O2 levels throughout the day.  Finally, (as others have said), my mom also swears by her adjustable bed so she can sleep in an elevated position when needed.  She used a wedge pillow for many years and when my parents needed a new bed, they just decided to get an adjustable one.
I hope some of this info helps or provides some hope. Your husband's breathing will likely get better. Might he need to be on oxygen full time? - maybe. but if my mom was able to get off of oxygen full time thru exercise, there's a chance your husband can too.  

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.

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!

Katherine, 
When I was reading the beginning of your post, I thought it was me talking. I feel the same way about my mother as you do. My mom is on her 2nd diagnosis of lung cancer, the 1st being in 2015. My mom had a lobotomy in January 2015 and then followed up with chemo and radiation because the tumor was more involved than the surgeon realized. My mom did great after her surgery and during treatment and she is NOT the epitome of good health to begin with. So if my mom can make it thru, so can yours. One thing that has really helped me with this cancer recurrence is these forums. There are several members who have provided great insight for me. Everyone on these forums are survivors, whether we are fighting ourselves or fighting for a loved one. There is also great information here that can help educate you in your mom's current health issue. Arm yourself with knowledge. Don't pay attention to the statistics,your mom is not a statistic. As Tom says, if one person can survive, so can your mom. Moms are fighters. 
Do know I feel your pain, you are not alone. I am currently crying by myself too. We are here for you. Take care, keep your chin up. Be strong. Once y'all have a definite treatment plan in place, things will get easier.

I do believe that Taxol was formulated by the devil's pharmacist!  I had six "light" rounds of Taxol and Carboplatin during radiation in April and May, and I've had two additional full-strength doses of chemo since mid-June.  I'm not giving up, but after these last two rounds of chemo, I certainly understand why people suspend or quit treatment.  
Super Doc warned me that it would be bad, but he said it wouldn't be as bad as last year's cisplatin/alimta combo.   I love Super Doc but he lies!  Taxol brought some of the usual side effects (fatigue, neuropathy, tinnitus) but it also brought total hair loss, insomnia, GI issues, steroid bloat, weight gain (!!) and a couple of others.  It has just about wiped me out mentally and physically, and that's tough for me to admit.  I know that there are others who have fared so much worse and I try to always keep that in mind.  That said, I'm finished with chemo and will scan again in a couple of weeks.  Ready for another reprieve from treatment and resuming life 90 days at a time between scans.
 

Katherine, 
When I was reading the beginning of your post, I thought it was me talking. I feel the same way about my mother as you do. My mom is on her 2nd diagnosis of lung cancer, the 1st being in 2015. My mom had a lobotomy in January 2015 and then followed up with chemo and radiation because the tumor was more involved than the surgeon realized. My mom did great after her surgery and during treatment and she is NOT the epitome of good health to begin with. So if my mom can make it thru, so can yours. One thing that has really helped me with this cancer recurrence is these forums. There are several members who have provided great insight for me. Everyone on these forums are survivors, whether we are fighting ourselves or fighting for a loved one. There is also great information here that can help educate you in your mom's current health issue. Arm yourself with knowledge. Don't pay attention to the statistics,your mom is not a statistic. As Tom says, if one person can survive, so can your mom. Moms are fighters. 
Do know I feel your pain, you are not alone. I am currently crying by myself too. We are here for you. Take care, keep your chin up. Be strong. Once y'all have a definite treatment plan in place, things will get easier.

Hi Katherine,

I'm sorry to hear about your mom's diagnosis. I still remember the day that my dad told me about his. As soon he said the word tumor, I started balling and everything else was a blur after. Things started rolling pretty fast after that. Surgery, chemo, recovery....

After 2 years, we are still in this and like Tom and everyone else said, it is a marathon. So really, I know it sounds cliche, but take care of yourself. Both physically and mentally.

Your dad will of course have a lot to deal with as well being the primary caretaker so be sure to check in with him often.

As far as making things easier on your mom, just try to be there and help as much as possible. Also, it's important to help her feel a sense of normalcy. If she enjoys making dinner for the family, ask her to make it if she's up for it.

As much as they say they are strong and they've got this? They are human too so they will have good and bad days. And so will you. Take it one day at a time. Get support. Talk to friends.

Your lives will prob never be 100% "normal" again but could be pretty darn close on good days!

Hang in there!


Sent from my iPhone using Tapatalk Pro

Katherine, 
When I was reading the beginning of your post, I thought it was me talking. I feel the same way about my mother as you do. My mom is on her 2nd diagnosis of lung cancer, the 1st being in 2015. My mom had a lobotomy in January 2015 and then followed up with chemo and radiation because the tumor was more involved than the surgeon realized. My mom did great after her surgery and during treatment and she is NOT the epitome of good health to begin with. So if my mom can make it thru, so can yours. One thing that has really helped me with this cancer recurrence is these forums. There are several members who have provided great insight for me. Everyone on these forums are survivors, whether we are fighting ourselves or fighting for a loved one. There is also great information here that can help educate you in your mom's current health issue. Arm yourself with knowledge. Don't pay attention to the statistics,your mom is not a statistic. As Tom says, if one person can survive, so can your mom. Moms are fighters. 
Do know I feel your pain, you are not alone. I am currently crying by myself too. We are here for you. Take care, keep your chin up. Be strong. Once y'all have a definite treatment plan in place, things will get easier.

Katherine, 
When I was reading the beginning of your post, I thought it was me talking. I feel the same way about my mother as you do. My mom is on her 2nd diagnosis of lung cancer, the 1st being in 2015. My mom had a lobotomy in January 2015 and then followed up with chemo and radiation because the tumor was more involved than the surgeon realized. My mom did great after her surgery and during treatment and she is NOT the epitome of good health to begin with. So if my mom can make it thru, so can yours. One thing that has really helped me with this cancer recurrence is these forums. There are several members who have provided great insight for me. Everyone on these forums are survivors, whether we are fighting ourselves or fighting for a loved one. There is also great information here that can help educate you in your mom's current health issue. Arm yourself with knowledge. Don't pay attention to the statistics,your mom is not a statistic. As Tom says, if one person can survive, so can your mom. Moms are fighters. 
Do know I feel your pain, you are not alone. I am currently crying by myself too. We are here for you. Take care, keep your chin up. Be strong. Once y'all have a definite treatment plan in place, things will get easier.

Apparently the reason the pathology report still is not available is that the pathologists are trying to "reconstruct" the wedge resection the surgeon took immediately prior to the lobectomy.  Surgeon says he understands why they need to do it, but that HE knows what he did and it doesn't affect the outcome of the surgery.  So although the complete pathology report is not yet complete, I do know now that it was adenocarcinoma, that it was "deep," that it had grown significantly since the PET scan, and that the lymph nodes were all clear.  And, of course, based on the PET scan, no evidence of any metastasis.
I have an appointment on 8/1 and in the meantime the surgeon will be meeting with their "tumor board" and also bringing in an oncologist to recommend surveillance protocol going forward.  He says chemo at this point could MAYBE add 2% to overall survival odds, so he didn't recommend any.  He thinks my chances are excellent, and my lung function is great.  So it looks like, barring something unforeseen, this really WILL be "one and done"!
I feel truly like I just dodged a bullet.  I had ZERO symptoms and if it weren't for the screening program, god only knows how bad this would have gotten before it was discovered.  
I'm feeling pretty darned good today.  My cousin had come out here on Wed. to help me out and take me to my appointment, but I felt so good after Friday's appointment (chest tube removed, crepitus virtually gone) that we ran around and did errands--including a mani-pedi for each of us!  I have a bit of achiness (like I pulled an upper back muscle), and up until this morning (so far) a slightly annoying cough.  
It's weird, though, I'm still sort of sorting through various emotions--I'm so grateful not to have to battle this with all kinds of therapy but at the same time there's almost an element of survivor's guilt--there are so many brave souls on this forum and everywhere who have to go through what I was spared.  I know how fortunate I am, and I'm so grateful for the inspiration and support everyone here has provided.  It all helped going in to know that others have gone through it and come out on the other side.  And, of course, none of us knows what the future holds.  So I will be happy for however long my good health lasts and do my best to keep it going!
Teri

I think many of us are right there with you.  I am a daughter/caretaker of my mom who is currently going through a diagnosis of a recurrence of lung cancer.  The unknown is the worst for me.  Once we had a treatment plan in place, we were able to look toward the future (we will hopefully have a treatment plan today for the recurrence).  I hope that you will find the same as you go through this process.  Statistics are grim, but know that they are OLD statistics. I find solace in hearing from those who are survivors on these forums.  It gives a bit of hope in all of the darkness.  As a caregiver, please remember to take care of yourself in all ways (easier said than done, I know!).  It's okay to take time for yourself. It's okay to cry or to be pissed off.  Active members on these forums are here for you and have been a big help to me.  I hope you are able to stay in touch as time allows and keep us updated.  

Hi Helpingmom,
I feel your pain! I am relieved that my mother quit smoking prior to her lung cancer diagnosis, but it was a big challenge for her.  It has been an even bigger challenge for my father.  He has attempted to quit over 20 times.  Finally, he hasn't smoked in a little over a year (that we know of!) but only because he is disabled and it is too challenging to get himself outside to smoke and hold still long enough to light the cigarette (he has a neurological disorder that causes him to shake).  All that being said, addiction to nicotine is tough for many to overcome.  It is different from illicit drug addictions because the products are readily available and it has less stigma attached to it than someone who is using illicit drugs.  Please be patient with your mom.  The lies come with the addiction.  The justification and ignoring other issues that are related to smoking comes with addiction as well.  I finally decided that I was going to stop confronting my dad every time I knew he was smoking. All it would do is lead to more lies and more frustration on my part. Although he has not been diagnosed with cancer, so every puff he takes does not possibly make his health worse, as with your mom, it's still dangerous for him to sneak out of the house to smoke.  Perhaps having one last discussion with your mom to let your know all of your thoughts and feelings about her smoking could help you to feel you've made every attempt to help. And then think about leaving the issue alone.  After all, the stress of dealing with a cancer diagnosis would be enough to drive many non-smokers to smoke!
On another note, if your mom is ever ready to quit, my dad had good luck with Chantix. He now takes a reasonable dose of Wellbutrin which I guess helps with the urge to smoke.

Emily,
Waiting for scans, then results, then consults, always waiting with a deep foreboding, that kind of sums up my entire treatment experience.  As a community, we call this symptom scanxiety.  I call it Scanziety and wrote a book about it.  I liked the photos you posted by the way.
So where do we start.  We have a lot in common.  I grew up in the suburbs of Philly, sailed a lot in my younger days, suffered a lung cancer diagnosis, had Carboplatin (18 times) as one of my chemo pairings, and achieved a NED (no evidence of disease) state after a CyberKnife radiation procedure.  And I'm alive, and I say most emphatically, if I can live, so can you.
Words of wisdom?  Stay in the day; look for a little piece of joy everyday, and then revel in it.  Tomorrow will take care of itself and will happen on its own accord.  You have no ability to control tomorrow, or any outcome for that matter, so why try?  You don't need to make decisions about the future today.  You may tomorrow or next week, or next month, or never. So on the day required, make the decision then quickly go back to joy.  
I decided I wasn't going to let lung cancer take over my life.  I found I had the power to make and abide by that decision. 
Stay the course.
Tom