Rower Michelle

Great summary, Lou, I can't think of a thing to add.
Except maybe one. It's a rare situation that doesn't affect most people, but it did me and a few other people I know. I developed something called "crepitus" or "sub-cutaneous emphysema" right after surgery. Has nothing to do with what most people think of as emphysema. This is a small leak of air that gets into the tissues under your skin (sub-cutaneous). It made me feel at first like my glands in my neck were swollen and then it spread to my whole chest and up my face. I looked like a chipmunk with the mumps! 
Sometimes this resolves on its own but if it progresses, it becomes VERY uncomfortable--if you look it up online you can see some people have even their eyes swollen shut! So you do NOT want to let it get to that point. 
I had to go back in the hospital for a few days with a chest tube to slowly deflate, and then I was fine. 
As I said, it's pretty rare but it does happen, and if it does, it's something to report to your doctor. Not generally life-threatening, but a complication you want to address ASAP.

I was diagnosed in Feb 2019. Had a brain MET and some nodes in the lining of my right lung. It happened very fast. One day I'm shoveling snow and feeling good, next day I'm wondering what the heck happened and my life changed. I experienced shortness of breath, so they did scans and a thoracentesis (draining fluid from my chest), a biopsy, then they gave me the news. SCLC. They immediately put me on chemo with carboplatin, etoposide and tecentriq, which was recently approved for first line treatment. They found that I was allergic to etoposide, so they substituted paxlitaxel, and I still have weekly infusions of it to this day. One of my doctors suggested whole brain radiation in May, but we refused. Then the brain MET disappeared, which I think was due to tecentriq, but no one knows for sure. Only God knows. It's gone. For now. Paxlitaxel side effects are not pleasant, but I can still play some golf. I'm now a frequent flier at the cancer center and still not an expert on this disease. There are so many things going on now in research that I could never keep fully up to date. I rely on my medical team to be the experts, to be up to date on SCLC and to do their thing exceptionally well. I ask tons of questions and still make the final medical decisions. But I think the most important aspect of this disease is attitude! Positive or negative, that's the only thing I can control. I see some patients who are so depressed they make me feel depressed. That's not a good way to go through this thing. I've experienced this depression and can say that it's really ugly. I've even heard that negative attitude can affect not just the patient but also the disease. So I'm in charge of my attitude and rely on the help of family and friends to keep me positive. Avoid negative crap always. So that's the extent of my SCLC experience. I suggest that patients and supporters stay focused on positive attitude. Do whatever is necessary to keep your wife's attitude positive. That's a very, very tough task, maybe even tougher than the treatment of this disease.

Good morning! 
I wanted to share my CT results with you guys. This was my first scan since starting treatment in April (I'm getting treatment monthly, so this was #4 for me, which I guess would be #8 if I was going biweekly) and my tumor is down to 1.3 cm. 
I started at 5 cm back in December 2019 when they found it,  chemo and radiation took it down to 3.8 cm, and now I'm down even more. I'm so happy with these results! 
I had hypothyroidism before starting any of this journey and my levels were jumping all over the place, but seem to be leveling out now which is good. No other side effects to really report aside from a sour stomach in the mornings which my onc is not too concerned with. Treatment #5 is on Thursday, then more waiting!

Just had #23 today, getting there! TSH levels are climbing, Onc going to do a more in depth work up, Ugh! Always something huh 😃
Michelle,
SSDI is a long drawn out process, good news is it's retroactive, I really don't understand the hold up Stage 4 should be automatic. My original diagnosis of Epilepy is on the list of automatic qualifications, but it still took me 3 yrs to get approved! But I still had to get an attorney, then I had to agree to only 1-1/2 yr of retro pay go figure on that one too. He of course got his 1/3. My approval was very quick when he got involved! Also before my cancer diagnosis, when we are on SSDI we are able to work and make up to $1,280. p/mo I went over a few months by approx $50. and $80, and a few small amounts, due to my commissions, I had to pay back my full months benefits! Just a heads up if you decide to get a PT job out of sheer boredom. Needless to say, after my cancer diagnosis, I was reinstated to my full benefit rate. Cancer is also an automatic qualification, I think these people reviewing SSDI claims are clueless, sometimes I think they feel like they are doing the government some sort of services by denying claims when actually, it is money we and our employers have paid into the system burns my butt!  
Barb,
Like Michelle said, I too, only listen to my Oncologist when it comes to my cancer, she says I'm ok, so I must be right? 
Everyone enjoy your week, New England is being a little touchy right now, doesn't know if it wants to be sunny, rainy or what 😃
Take care,
Roseann

Hey Barb,
Well that is good news.  It’s never a real victory lap for us as there always seems to be something. 
Generally, I’m doing fine.  Scans are scheduled for August 5th, until then it’s business as usual.  I’m recovering from an overuse knee injury (thank you COVID Stay at Home Order), age and inhibitors don’t mix.    My last set of labs turned up a little bit of anemia.  Not sure if it’s a long term side effect of the targeted therapy or the massive Advil to treat the knee???  Hoping it resolves with the iron supplements (another pill!!). 
 
Today the dreaded disability insurance paperwork arrived.  I knew it would be coming as I’m coming up on two years this September.  There’s a medical records request and functional assessment due in 60 days.  I despise insurance companies.  I would expect having a Stage IV diagnosis should be hassle free but who knows.  
 
I’m really grateful that I’m doing very well.  Can’t wait to get through this pandemic and back to leisure travel! 
Michelle

Hi Barb,
I hope this didn’t interrupt your weekend.  I stopped looking things up from the CT report about 6-8 months ago.  I go by the rule if the onc isn’t worried than I won’t worry.  Easier said than done.  For about a year the onc disagreed with the radiologist over a need for radiation, onc was right.  He had more experience with my “rare” cancer.   
I had cancer on my spine and similar words appear in my CT scan which doc attributes to a combination of genetics and age.  Here’s to growing old. 
Keep us posted! 
Michelle

Barb     Great news! When I got my news last week I treated myself to a piece of chocolate cheese cake... give your self a treat for the year you invested in Durva.
Grahame  ..  enjoy the wedding and the cake that goes with it . That's really fast good news on you progress.
Lindsay ...Hope you get great CT result .. #10 already ..your on your way
thanks everyone for the good wishes ..I hope you all enjoy the season
Q:  What do you get when you combine an elephant with a fish?
A: Swimming trunks!
Q:  Why don’t oysters share their pearls?
A: Because they’re shellfish!
 

Well another CT in the bag. Doc said go live your life and I’ll see you in November. 

That’s awesome Barb! I just had my first CT through treatment on Tuesday, and will get my results next week! 
 
Grahame, nice to hear you’re seeing results too! I’m doing my treatments every 4 weeks, I go for number 5 next week, which I guess technically would be #10 given I have a double dose. Good luck to you!   

Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”. 
 

Hi Barb
Yeah, I really think we know where you’re coming from, seeing is believing in this group.  Sounds like you’re doing all the right things.  If you have to go to the mattresses, call your State AG or Senator.   That’s a headache the insurance company doesn’t want especially about a vendor.   Keep making noise! 
 
Michelle

Hooray for you and those Bay Gulls! Fly, be free!   Carry on!  

Hooray for you and those Bay Gulls! Fly, be free!   Carry on!  

Hi Barb
Yeah, I really think we know where you’re coming from, seeing is believing in this group.  Sounds like you’re doing all the right things.  If you have to go to the mattresses, call your State AG or Senator.   That’s a headache the insurance company doesn’t want especially about a vendor.   Keep making noise! 
 
Michelle

Hi Barb
Yeah, I really think we know where you’re coming from, seeing is believing in this group.  Sounds like you’re doing all the right things.  If you have to go to the mattresses, call your State AG or Senator.   That’s a headache the insurance company doesn’t want especially about a vendor.   Keep making noise! 
 
Michelle

Hi Barb
Yeah, I really think we know where you’re coming from, seeing is believing in this group.  Sounds like you’re doing all the right things.  If you have to go to the mattresses, call your State AG or Senator.   That’s a headache the insurance company doesn’t want especially about a vendor.   Keep making noise! 
 
Michelle

Hi Barb,
Insurance companies stink! I'm on Medicare, so maybe there's a difference, I was diagnosed in March of 2019 started treatment in May. I had 2 PET scans in 2019 both were covered 100% also MRIs and I think, 4 CT scans, I also qualify for extra help because I'm low income. With that being said, I worked in the insurance authorization department awhile ago, I would tell people to just keep calling back until they get a rep who knows what to do to get an approval. Hopefully your Oncologist can get an approval for you using a diagnosis code like a suspicious symptoms that require further testing, such as a PET scan 🤗 I'm praying for you, hopefully this gets sorted out quickly. There's nothing like not knowing if the torture we've gone through has been worth it right? Stay strong 💪 there my fellow Durva friend 💜
Take care, Roseann
PS bagged #22 YAY

Hey ladies, JG checking in here.  Polly probably a good idea to get a second opinion from an expert in lung cancer (most of us see general oncologists).  You can start by contacting the help line at the Go2Foundation or Lungevity.  I know that Go2 maintains a list of regional experts.  In your neck of the woods the doc will either be affiliated with either Memorial Sloan or Mass General.   I understand Mass General is offering video appointments.  Let us know how it works out. 
Michelle

Hello Fellow Durvas and Done with Durvas club members ... I'm in the Done with Durva club. My update: My last infusion that I should have gotten in April was canceled, my CT that was due in April was canceled, my port take out was canceled, my port flush was canceled  and all doctors visits canceled. I just got a date for my big reveal CT on July 1st. The last CT in late January showed I am NED and I have gone with the "if no one says you have cancer, you don't have it"  I like that feeling and now I have scan scanxiety again. 
My side effects started around #4 and it was just fatigue.. turned out my thyroid was not being checked and when they did I ended up at 139.. normal in 3.5-4.5.  I got meds to fix it and in a  month or so I was down to 3.6. I did not gain any weight during the entire treatment.  Now that treatment is over I have itching from my knees down to my ankle at night. We are all different...
take care all..enjoy the season
 What did the little corn say to the mama corn?
Where is pop corn?
How do we know that the ocean is friendly?
It waves!

Note to Lindsay, and then PShsy...
Warning, this is long, sorry.
Lindsay I finished #26 infusion about 6 months ago. Here's my side effects story..  Keeping in mind I did NOT get double dose once a month. At my #2 infusion I also received a flu shot. About 2 weeks after that infusion I started to develop a rash. A minor side affect not too prevalent or talked about. My rash didn't itch, it was just red blotches which started on face and disappeared then showed up on my neck and chin, and disappeared did this small sections until it hit my ankles. Not pretty but not painful. Derma gave me every cream and ointment but nothing helped it. A couple Durvies sent me a link that apparently those administering never realized that one should not get Durva AND a flu shot same day or I was just sensitive. 
So along with this (Polly pleez note) an early scan showed slight pneumonitis. Thus Durva was held and I was on 70mg Prednisone and tapered down over I think the next 6 weeks. Steroids were awful. I cried, got cranky and wanted to eat but tried not to. Rash disappeared and so did pneumonitis. Back on Durva. Polly why are they taking you off? My main complaint, I could only sleep it seemed in 3 hour increments for the duration. Fatigue was terrible. I too gained the 30 pounds without really eating more, probably less then normal. It was all in my mid section. I continued on exhausted but managed. Scans showed shrinkage and good stuff. I didn't have PDL or a mutation. Testing showed no active "C".
At 20 weeks I was noticing knee and joint pain which continued and lessened just recently. I get stiff now in joints at one position for long periods but chalk it up to a few years older. Not complaining.
Last week I had my 3 month scans and all is well. Stable and labs great. My Onc seems to think I may be stretching scans to 6 month intervals after September's. I like that but then I don't.   I managed 26 infusions and a separate lab poke for each visit without a port and no problem. I attribute that to some very good nurses. 
Well thru all this, I wondered if I'd get a head/brain scan ever again. I was told no symptoms, Stage 3 no scans needed. I still worried.
Yesterday afternoon while sharing care giving for my Mom, I jumped up from a cat nap and tried to make a quick dash to my Mom except that my face had a quick meeting with the kitchen floor. I ended up in ER (oh I didn't want to go!) with 6 stitches, a broken tooth and a sprained pinky finger. Two inches I would have hit the soft carpet.  There is a silver lining in this. Stitches in the eyebrow and all.....ER had to do a head scan.  All is good. Clean and clear.
I wish all you Durvies and caregivers courage, strength, faith and hope to keep going. Miracles do happen.
Hugs to all,
Opal
 

Barb and Polly,
I just had #21, gained a total of 40 lbs so far went from 118 to 158! I am 5ft 5in I had to get some new clothes to wear! Since I'm 62yrs old I don't see the weight coming off very easily, so I am ordering a few dresses that Michelle recommended from Amazon, they are really sweet! And clothes that will grow with me LOL!
Enjoy your summer!
Take care,
Roseann

Hi Rosann,
So glad to hear that you’re doing well!  Sorry about the weight gain, we all get that, happy doctors who obviously can’t appreciate our wardrobe crisis!   Aches and pains seem to come with the territory, totally sucks.  You might want to ask about some anti inflammatory supplements such as fish oil-curcumin combo or the bromelian qlucosamine chondroitin cocktail.  
 
This super cute t-shirt dress arrived today- check it out:
https://www.amazon.com/dp/B071H6MTLS/ref=cm_sw_r_em_api_i_L2X0Eb5G4E1WR
Its very flattering & true to size.  Happy shopping! 
Michelle 
 

Yep.  My family is over the river in NNJ, someone set the 9-11 Memorial on fire yesterday putting the entire neighborhood at risk.  Homeowners jumped in dig firebreaks until  the FD arrived.  Total madness in the burbs too!
 
Be sure to ask about the biomarker results. It could help determine what the next course of treatment will be.   

Hi Rosann,
So glad to hear that you’re doing well!  Sorry about the weight gain, we all get that, happy doctors who obviously can’t appreciate our wardrobe crisis!   Aches and pains seem to come with the territory, totally sucks.  You might want to ask about some anti inflammatory supplements such as fish oil-curcumin combo or the bromelian qlucosamine chondroitin cocktail.  
 
This super cute t-shirt dress arrived today- check it out:
https://www.amazon.com/dp/B071H6MTLS/ref=cm_sw_r_em_api_i_L2X0Eb5G4E1WR
Its very flattering & true to size.  Happy shopping! 
Michelle 
 

Lindsay, I'm in the Done Durva Club but I understand the Durvies going to the Medical center I go to are now getting double dose like you since Covid. Have not really heard anything further tho. Good luck. Stay positive. 
Opal