Rower Michelle

Thank you Judy.  I’m a poster child for comprehensive biomarker studies in the never smoker population, it was a hard way to lean there are two ALK tests.  The initial ALK FISH test wasn’t sensitive enough to detect since the Foundation One results indicated a low tumor mutation burden.  I’m so grateful my oncologist kept digging.  

When I was discharged from Hospital A, I was told 48 hours later I had, "adenoma carcinoma, lung primary type".  I really didn't know what the implications of that was and certainly wasn't told about biomarker testing by the pulmonologist.  It took about a week for me to see an oncologist at the only NCI in my State.  Upon the first visit, the oncologist said I was EGFR, ROS1 negative and ALK indeterminate with zero PDL-1.  I had no idea what he was talking about, was still in shock but wrote it down.  When I asked about prognosis, it was grim, six months to live.  My only response was "what?!", which then changed to about 12 months.  I didn't like that answer either and still said "what?!" which then the doctor said with treatment maybe 24 months.  My husband was crushed, my sister was on a girls trip in Miami and I didn't dare tell my parents.   
I was asked to sign some paperwork accepting financial responsibility for up to $5600 for some type of special testing.  I remember thinking, well if we have to pay for this, it will have to come out of our savings account and I didn't hesitate to sign this waiver even though I didn't know what it was really for.  
With a Stage IV diagnosis, I wasn't sure that I wanted chemo with such a grim prognosis.  I was very symptomatic, with trace plural effusion and a worsening cough.  I hadn't slept through the night in about a month, wasn't able to have a conversation either.  I had to write everything down on a pad to communicate.  Somehow, my doctor convinced me that I would feel better if I had a dose of the triplet while we waiting for "these tests" to come back which was expected to take up to four weeks.  I received a B-12 shot and started folic acid supplements and had to wait one week before starting the triplet.   The health insurance company denied the treatment plan stating "chemo was a matter of convenience".   So here I am fighting the insurance company noting the irony of having run health insurance appeals in previous role. 
Two weeks after my initial cancer diagnosis, I  had one dose of the triplet and  a messy port installation the next day.  My symptoms did not improve, the cough worsened and I started opiates. Evidently I was allergic to something in the chemo and part of my face turned purple.   I broke a rib from the incessant coughing fits.   It was a waiting game at this point, but wasn't sure what we were waiting for. 
Three weeks after my first visit with the oncologist, we received a call in the late afternoon asking if we could come in to see the oncologist before office hours the next day.  It was something like 7:30am.  We were not told why we needed to come in person, however, we figured at this point the news couldn't possibly get any worse.  I was scheduled for a second dose of the triplet later in the week which I was dreading because I developed an infection from the messy port install.  
When we sat down with the doctor, he apologized for bringing us in so early.  He said my tests came back for the ALK mutation.  His face is consistently expressionless.  I had to ask, is that good news or bad news.  His response is still me today, "its great news".  My next question was how does this change my prognosis- he said we were now talking about years instead of months.   
The insurance company made a rare move and approved targeted therapy that day.  I picked up the huge bottle from the hospital pharmacy and it sat on my kitchen counter for three days until my nurse chemo teaching visit.    When we arrived for the appointment the nurse educator, she had never prescribed the therapy and we were in uncharted territory.   I had found a number of sources via Dr Google and had more information than she did.  
I didn't hesitate to take the first dose of targeted therapy that evening, almost five weeks after receiving this diagnosis.  Within the hour my cough disappeared, that was 23 months ago.  
I wish the medical team had done a better job of explaining what biomarker testing was all about.  It could have saved us so much grief.  When the biomarker testing was denied by the health insurance company I requested  medical records for the appeal.   It was only then that I discovered my oncologist strongly suspected I had the ALK mutation yet he didn't say a word about it to us.   Played it very close to the vest.  I was mad for only a few seconds because in further reading, I could see the doctor was just as destroyed as we were.   
The health insurance appeals process was terrible, I exhausted the entire appeal process, with the final determination having been made by a board certified INTERNAL MEDICINE physician.   Evidently, "there was no evidence of a mutation" and the tests "were not medically necessary".   I don't think the physician reviewer read past the first note.  
Foundation One called me and offered a "wonderful patient discount" and asked for payment of $3500.  I told them to get lost, I wasn't paying them a dime.  Never heard from them again so to this day I don't know if the testing ever got paid for. 
Waiting four weeks for biomarker testing in my case was a horrible experience,  I can only hope that in the future the process can be expedited.  
 

Strange how there is no consistency at all among oncologists. When the I was told I had no mutation, I got visibly scared and shaken up because the oncologist assured me  that there are plenty of avenues available beside target therapy'. Then he explained how I will be on the triplet for 4 cycles then put on a maintenance plan without Carboplatin for up to 2 or 3 years.  I was and still am very surprised by his confidence in the outcome since I was not a candidate for target therapy, surgery or radiation therapy. Hopefully he is right.

When I was discharged from Hospital A, I was told 48 hours later I had, "adenoma carcinoma, lung primary type".  I really didn't know what the implications of that was and certainly wasn't told about biomarker testing by the pulmonologist.  It took about a week for me to see an oncologist at the only NCI in my State.  Upon the first visit, the oncologist said I was EGFR, ROS1 negative and ALK indeterminate with zero PDL-1.  I had no idea what he was talking about, was still in shock but wrote it down.  When I asked about prognosis, it was grim, six months to live.  My only response was "what?!", which then changed to about 12 months.  I didn't like that answer either and still said "what?!" which then the doctor said with treatment maybe 24 months.  My husband was crushed, my sister was on a girls trip in Miami and I didn't dare tell my parents.   
I was asked to sign some paperwork accepting financial responsibility for up to $5600 for some type of special testing.  I remember thinking, well if we have to pay for this, it will have to come out of our savings account and I didn't hesitate to sign this waiver even though I didn't know what it was really for.  
With a Stage IV diagnosis, I wasn't sure that I wanted chemo with such a grim prognosis.  I was very symptomatic, with trace plural effusion and a worsening cough.  I hadn't slept through the night in about a month, wasn't able to have a conversation either.  I had to write everything down on a pad to communicate.  Somehow, my doctor convinced me that I would feel better if I had a dose of the triplet while we waiting for "these tests" to come back which was expected to take up to four weeks.  I received a B-12 shot and started folic acid supplements and had to wait one week before starting the triplet.   The health insurance company denied the treatment plan stating "chemo was a matter of convenience".   So here I am fighting the insurance company noting the irony of having run health insurance appeals in previous role. 
Two weeks after my initial cancer diagnosis, I  had one dose of the triplet and  a messy port installation the next day.  My symptoms did not improve, the cough worsened and I started opiates. Evidently I was allergic to something in the chemo and part of my face turned purple.   I broke a rib from the incessant coughing fits.   It was a waiting game at this point, but wasn't sure what we were waiting for. 
Three weeks after my first visit with the oncologist, we received a call in the late afternoon asking if we could come in to see the oncologist before office hours the next day.  It was something like 7:30am.  We were not told why we needed to come in person, however, we figured at this point the news couldn't possibly get any worse.  I was scheduled for a second dose of the triplet later in the week which I was dreading because I developed an infection from the messy port install.  
When we sat down with the doctor, he apologized for bringing us in so early.  He said my tests came back for the ALK mutation.  His face is consistently expressionless.  I had to ask, is that good news or bad news.  His response is still me today, "its great news".  My next question was how does this change my prognosis- he said we were now talking about years instead of months.   
The insurance company made a rare move and approved targeted therapy that day.  I picked up the huge bottle from the hospital pharmacy and it sat on my kitchen counter for three days until my nurse chemo teaching visit.    When we arrived for the appointment the nurse educator, she had never prescribed the therapy and we were in uncharted territory.   I had found a number of sources via Dr Google and had more information than she did.  
I didn't hesitate to take the first dose of targeted therapy that evening, almost five weeks after receiving this diagnosis.  Within the hour my cough disappeared, that was 23 months ago.  
I wish the medical team had done a better job of explaining what biomarker testing was all about.  It could have saved us so much grief.  When the biomarker testing was denied by the health insurance company I requested  medical records for the appeal.   It was only then that I discovered my oncologist strongly suspected I had the ALK mutation yet he didn't say a word about it to us.   Played it very close to the vest.  I was mad for only a few seconds because in further reading, I could see the doctor was just as destroyed as we were.   
The health insurance appeals process was terrible, I exhausted the entire appeal process, with the final determination having been made by a board certified INTERNAL MEDICINE physician.   Evidently, "there was no evidence of a mutation" and the tests "were not medically necessary".   I don't think the physician reviewer read past the first note.  
Foundation One called me and offered a "wonderful patient discount" and asked for payment of $3500.  I told them to get lost, I wasn't paying them a dime.  Never heard from them again so to this day I don't know if the testing ever got paid for. 
Waiting four weeks for biomarker testing in my case was a horrible experience,  I can only hope that in the future the process can be expedited.  
 

Wow, Michelle what a rough time you had! 
I had my bronchoscopy on 10/31/19 and I met with my medical oncologist on 11/11/19 and got the tissue biopsy results, including being positive for the EGFR mutation, which my oncologist was "happy" about (he is a very expressive person). At the time I didn't really understand and had a lot of scary information to absorb. I went through 6 weeks of chemo and radiation, and about midway through, my oncologist discussed the plan for after treatments. I am now on a targeted therapy with "continued positive treatment results". 

When I was discharged from Hospital A, I was told 48 hours later I had, "adenoma carcinoma, lung primary type".  I really didn't know what the implications of that was and certainly wasn't told about biomarker testing by the pulmonologist.  It took about a week for me to see an oncologist at the only NCI in my State.  Upon the first visit, the oncologist said I was EGFR, ROS1 negative and ALK indeterminate with zero PDL-1.  I had no idea what he was talking about, was still in shock but wrote it down.  When I asked about prognosis, it was grim, six months to live.  My only response was "what?!", which then changed to about 12 months.  I didn't like that answer either and still said "what?!" which then the doctor said with treatment maybe 24 months.  My husband was crushed, my sister was on a girls trip in Miami and I didn't dare tell my parents.   
I was asked to sign some paperwork accepting financial responsibility for up to $5600 for some type of special testing.  I remember thinking, well if we have to pay for this, it will have to come out of our savings account and I didn't hesitate to sign this waiver even though I didn't know what it was really for.  
With a Stage IV diagnosis, I wasn't sure that I wanted chemo with such a grim prognosis.  I was very symptomatic, with trace plural effusion and a worsening cough.  I hadn't slept through the night in about a month, wasn't able to have a conversation either.  I had to write everything down on a pad to communicate.  Somehow, my doctor convinced me that I would feel better if I had a dose of the triplet while we waiting for "these tests" to come back which was expected to take up to four weeks.  I received a B-12 shot and started folic acid supplements and had to wait one week before starting the triplet.   The health insurance company denied the treatment plan stating "chemo was a matter of convenience".   So here I am fighting the insurance company noting the irony of having run health insurance appeals in previous role. 
Two weeks after my initial cancer diagnosis, I  had one dose of the triplet and  a messy port installation the next day.  My symptoms did not improve, the cough worsened and I started opiates. Evidently I was allergic to something in the chemo and part of my face turned purple.   I broke a rib from the incessant coughing fits.   It was a waiting game at this point, but wasn't sure what we were waiting for. 
Three weeks after my first visit with the oncologist, we received a call in the late afternoon asking if we could come in to see the oncologist before office hours the next day.  It was something like 7:30am.  We were not told why we needed to come in person, however, we figured at this point the news couldn't possibly get any worse.  I was scheduled for a second dose of the triplet later in the week which I was dreading because I developed an infection from the messy port install.  
When we sat down with the doctor, he apologized for bringing us in so early.  He said my tests came back for the ALK mutation.  His face is consistently expressionless.  I had to ask, is that good news or bad news.  His response is still me today, "its great news".  My next question was how does this change my prognosis- he said we were now talking about years instead of months.   
The insurance company made a rare move and approved targeted therapy that day.  I picked up the huge bottle from the hospital pharmacy and it sat on my kitchen counter for three days until my nurse chemo teaching visit.    When we arrived for the appointment the nurse educator, she had never prescribed the therapy and we were in uncharted territory.   I had found a number of sources via Dr Google and had more information than she did.  
I didn't hesitate to take the first dose of targeted therapy that evening, almost five weeks after receiving this diagnosis.  Within the hour my cough disappeared, that was 23 months ago.  
I wish the medical team had done a better job of explaining what biomarker testing was all about.  It could have saved us so much grief.  When the biomarker testing was denied by the health insurance company I requested  medical records for the appeal.   It was only then that I discovered my oncologist strongly suspected I had the ALK mutation yet he didn't say a word about it to us.   Played it very close to the vest.  I was mad for only a few seconds because in further reading, I could see the doctor was just as destroyed as we were.   
The health insurance appeals process was terrible, I exhausted the entire appeal process, with the final determination having been made by a board certified INTERNAL MEDICINE physician.   Evidently, "there was no evidence of a mutation" and the tests "were not medically necessary".   I don't think the physician reviewer read past the first note.  
Foundation One called me and offered a "wonderful patient discount" and asked for payment of $3500.  I told them to get lost, I wasn't paying them a dime.  Never heard from them again so to this day I don't know if the testing ever got paid for. 
Waiting four weeks for biomarker testing in my case was a horrible experience,  I can only hope that in the future the process can be expedited.  
 

Outstanding news!!!! Go Barb!!!

Same company that denied my PET, chemo & biomarker studies.  They are bottom dwellers.  Seriously with a very shady group of founders.  I’m sure the DOI has a rather large file on them. 
File a vendor complaint with the CEO of the Insurance Carrier too.  
 
Go to the mattresses! 
 
PS my employer fired them in 2019.  

Hello- welcome to your new family.  I’m one of those Stage IV healthy people.  It’s more common than any of us could have ever imagined.   You might want to check out Diana Lindsay’s “Something more than Hope”.  She shares her survival story as an EGFR mutant which is so inspiring.  Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message.   It’s so on point!   The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment  
Another terrific resource is Anti-Cancer Living.  Lots of great information in there too.  
In addition, Facebook has some great support for EGFR & the Exon 20.   
Knowledge is power & hope is the driver on this road.  There’s so much hope on the horizon with all these clinical trials.  Stay strong.  We’re here for you! 
Michelle 

Barb, 
All is going well here. All those years I worked for the insurance companies, we had a saying, "working there we'd step over a dollar to pick up a dime".  The PET scan denial is another illustrative example of simple stupidity in the name of "cost savings."  A couple of thoughts: 
1. What type of contract does your employer have with the insurance company?  At risk (health insurance is responsible for paying the claims in exchange for a per member per month set fee) or self insured, otherwise known as an Administrative Services Organization (the employer pays a smaller fee to the insurance company to administer the benefit on their behalf and the employer pays all claims).   
2. If ASO, then you can go directly to HR and ask for an exception (I know you've been down the HR route before.  HR can intervene on your behalf without having to necessarily jump through the appeal hoops.  As you say, it's pay now or pay  more later.... 
3. If At Risk, then find out what the credentials of the insurance company "peer reviewer" was.  You will need to file an appeal.  It should be a board certified oncologist. (not an internal medicine doc with a sub-specialty in oncology).  When my biomarker tests were denied, my employer (ASO) was not happy about the reviewer who was only boarded in Internal Medicine. 
4.  There are two appeals processes, a member appeal (which comes first) and a provider appeal (which the provider executes after the member appeals process has been exhausted. 
5. Ask to file the member appeal, but you are not responsible for gathering medical records. The insurance company is responsible for obtaining the records.  Sounds like the clerk involved here is being really lazy.  If the insurance company is really pushy, then have your doctor write a letter explaining why the PET is medically necessary.  Send a copy of that to HR. 
6. For At Risk contracts, the State Department of Insurance has oversight, when you file an appeal with the insurance company, also file a complaint to the DOI, include any correspondence you've received from the insurance company. 
7. Depending on how much energy you want to put into this, you might want to contact your Congressional Representatives.   (Start with the Federal and then your local ones). 
 
Unfortunately, the squeaky wheel gets the grease.  Sometimes if a member was deemed to be "too noisy" we were told to just pay the claims because of the administrative costs of responding to a barrage of complaints.  Just keep pestering the insurance company for next steps until they've all been exhausted.  If something doesn't make sense ask to speak to a Director or VP (not a low level clerk). 
Keep fighting..... 

Barb, 
All is going well here. All those years I worked for the insurance companies, we had a saying, "working there we'd step over a dollar to pick up a dime".  The PET scan denial is another illustrative example of simple stupidity in the name of "cost savings."  A couple of thoughts: 
1. What type of contract does your employer have with the insurance company?  At risk (health insurance is responsible for paying the claims in exchange for a per member per month set fee) or self insured, otherwise known as an Administrative Services Organization (the employer pays a smaller fee to the insurance company to administer the benefit on their behalf and the employer pays all claims).   
2. If ASO, then you can go directly to HR and ask for an exception (I know you've been down the HR route before.  HR can intervene on your behalf without having to necessarily jump through the appeal hoops.  As you say, it's pay now or pay  more later.... 
3. If At Risk, then find out what the credentials of the insurance company "peer reviewer" was.  You will need to file an appeal.  It should be a board certified oncologist. (not an internal medicine doc with a sub-specialty in oncology).  When my biomarker tests were denied, my employer (ASO) was not happy about the reviewer who was only boarded in Internal Medicine. 
4.  There are two appeals processes, a member appeal (which comes first) and a provider appeal (which the provider executes after the member appeals process has been exhausted. 
5. Ask to file the member appeal, but you are not responsible for gathering medical records. The insurance company is responsible for obtaining the records.  Sounds like the clerk involved here is being really lazy.  If the insurance company is really pushy, then have your doctor write a letter explaining why the PET is medically necessary.  Send a copy of that to HR. 
6. For At Risk contracts, the State Department of Insurance has oversight, when you file an appeal with the insurance company, also file a complaint to the DOI, include any correspondence you've received from the insurance company. 
7. Depending on how much energy you want to put into this, you might want to contact your Congressional Representatives.   (Start with the Federal and then your local ones). 
 
Unfortunately, the squeaky wheel gets the grease.  Sometimes if a member was deemed to be "too noisy" we were told to just pay the claims because of the administrative costs of responding to a barrage of complaints.  Just keep pestering the insurance company for next steps until they've all been exhausted.  If something doesn't make sense ask to speak to a Director or VP (not a low level clerk). 
Keep fighting..... 

Hi Durva Club Members! 
 
If you have a minute please send a warm welcome over in the Intro Section to Jim (JMP from California).  Another Durva for your family here.   Hope you all are hanging in.  Thanks! 
Michelle

Congrats to all of you guys. I love reading all these positive stories!! It really gives me hope! 
Tomorrow is treatment day for me, I’ve lost count/it’s too much to do the math on what treatment I’m on with the switch to monthly! Lol 
I think this is treatment 5 of my double dose?! 
 
either way doing well, no real side effects aside from a sour stomach in the morning. 🙈

Oh my gosh, what an awesome "alert" I received this morning.....way to go Ron, congratulations. I do remember how devastating it was for you to get yanked from Durvalumab and the rigors you went thru to be in the Alk+ targeted therapy club. Awesome to get an update, and a miraculously beautiful update at that. I have been MIA from Lungevity, living life full and robustly well (my doctors words, not mine) and like everyone else, having my medical dance card emptied and fairly blank in this Covid environment. This month marks my 2 year anniversary since diagnosis of NSCLC Stg 3b and I'm 7 months out from completing my year of Durvalumab. Last Cat Scan in May, NED. And though I have been gifted with NED throughout my journey, like the ghosts of Christmas past and Christmas future, the memory of what was, and the haunting of what could be, is never far, always present as a reminder of my membership in the club no one wants to be a member of. I have learned to live with these hauntings, as a gift, to enjoy every blessed moment, to the best of my ability. Wishing everyone another step towards health, love and happiness.
Blessings, DFK

Great summary that landed just in time!  My Uncle was diagnosed with lung cancer this week (pathology pending).  Lou was kind enough to send me a sneak preview.  It was invaluable for my Aunt who is an awesome caretaker.  Love you guys!  

Love you right back Michelle.   
 
Lou

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!