Newly Diagnosed Dad

[Fox]

Hello all, my name is Fox and I am new to the forums. I want to say thanks first of all for everyone who comments in these forums. I have been reading for the past few days and learned a lot.

My dad (age 69) has been diagnosed with 'suspected stage IV lung cancer with spread to the liver' this week. He has not had any lung-related symptoms so far (no cough, shortness of breath, wheezing, etc), but he started having elevated blood sugar (he is a well-controlled type II diabetic) about 3 weeks ago. Around that same time he had pulled a muscle in his shoulder and was taking ibuprofen around the clock for a little while and developed what the doc thought was an ulcer. He was having bloating and indigestion that was relieved with eating bland foods. He was started on Nexium, but on the second day of Nexium, although his indigestion and bloating improved, he started having diarrhea consistent with a bowel impaction. So, having experience with these risk factors (my parents care for my 95yr old grandmother who has had 2 bowel impactions requiring hospitalization in the past 3 years), my mum insisted he go to the ER. That was this past Wednesday, the 19th.

While at the hospital, they pulled bloodwork and found that his LFTs were extremely elevated. His last LFT panel was in late December and his numbers were flawless. This bloodwork led to an abdomen ultrasound which showed a number of lesions on his liver. Then that led to a CT scan which showed a single mass in his right lung (which on the first CT, they thought was a PE - my mum thinks they said it's about 4cm in size). On Friday, they did a biopsy, but because it's the weekend, we won't have results until Monday. They are keeping him in the hospital over the weekend and the MD is hoping to start a treatment plan as soon as the biopsy results come in, and then keep him for a few days to monitor for side effects.

As I'm a science-minded person (I work in healthcare), I'm immediately trying to research as much as I can. It's been kind of a frustrating process so far since the hospital only allows one 'designated visitor' per inpatient due to Covid. So I can't be there to ask questions in person, and my mum is trying so hard to get all the info, bless her heart, but it's a lot for her to take in, and some of the docs my dad has seen so far have not had terrific bedside manners. For example, I talked to my dad on Thursday morning, and he said 'some counselors visited me today.' When I asked what counselors, he said, 'people who want me to know they can help and listen.' So I'm guessing social workers/therapists/etc. I went to visit my mum on Thursday evening after Dad had been through his CT scan and MRI, and she said they were a palliative care team. She then asked me what palliative care means. They had not even told him they suspected cancer at that point! It wasn't until much later in the day that they said they assume it is Stage IV lung cancer with liver mets (and they did not explain to them what Stage IV meant!). 

So, we are in a holding pattern until biopsy results come in. What I'm having a hard time wrapping my mind around is that the oncologist said they are 'hoping for SCLC because it responds better to chemo.' I have been reading all sorts of cancer forums and trying to recall stuff from oncology class (it's been a loooong time lol), and I just can't seem to find any data or reasoning behind this statement. I suppose it's not worth my mental energy trying to 'predict' what the biopsy results will say tomorrow and what the outcomes will be, but researching has always helped me feel empowered and more prepared to take on challenges, so it's what I find myself trying to do. My understanding is that NSCLC has more treatment options available, so I am struggling to figure out what the doctor is trying to suggest or what reasoning he is using to say this. Like I said, my dad has his diabetes under control (the endocrinologist he met with Thursday called him a 'dream diabetic patient' based on his lab results), he is very active, and although he's had hypertension and high cholesterol since he was in his 20s, he keeps all of that very well controlled with meds and diet/exercise. He was a heavy smoker for about 20 years, but has not had a single cigarette (or any other tobacco product) for over 30 years at this point.

Anyway! Sorry to write out such a novel for my first post. I suppose this could have gone into the main introduction page but since I have specific questions about SCLC and all the threads I have read in this group seem very kind, I thought I would start here. Thank you in advance for reading!

My dad is trying hard to keep his spirits up so far. He is chatty with the nurses (and bought them donuts - including a second batch for the weekend staff because he worried they would think he didn't like them as much as the weekday staff haha), listening to music on his laptop, and keeps telling me he just wants them to send him home for a couple of days so he can garden and wash his car! He's worried about losing his muscle strength so he is making sure to walk laps up and down the hospital floor as often as they will let him until he can get home to his beloved treadmill. My dad is the whole world to my mum and me, so we want to make sure we do everything we can to be a strong advocate for him through this journey.

[LexieCat]

Hi, Fox, and welcome! Sorry to hear of your Dad's situation.

I'm puzzled, too, by the doctor's comment. I've never heard of anyone "hoping" cancer is SCLC. My understanding is that it often responds quickly to chemo, but given its persistence/aggressiveness, it's especially likely to recur. I'm glad he's trying to stay active and to keep his spirits up--that helps no matter what.

There are others here that know a lot more about small cell than I do--and I'm sure you'll hear from them shortly.

I'm experiencing a recurrence after a lobectomy three years ago for what was then VERY early stage adenocarcinoma. My doctors were worried it was SCLC and I was relieved to learn this one is also adenocarcinoma. 

You'll know a lot more once you get the biopsy results and have a chance to talk to the doctor.

Good luck and glad you found us!

[Fox]

Lexie thank you for the comment. I think I am worried that the docs will think my dad is "old" and a diabetic, so they won't want to give him an aggressive treatment and will just want something to keep him comfortable or give him just a bit more time, you know? But they don't know my dad; he is very active and he and my mum love to travel and garden. I told them to make sure they tell the docs about their travel plans over the next year so there is no question that they want to fight for a long and healthy future! Lol

(My passion in my profession is eldercare and advocating for my senior patients, so I think I tend to be kind of sensitive and "on alert" about this stuff. I am trying to be patient and wait until we have more answers from the biopsy.)

I'm sorry to hear about your recurrence and I hope your treatments go well! This group has already given me hope and reassurance.

[Tom Galli]

Fox,

Welcome here.

I'm hoping the biopsy shows no cancer!

Lexi is right. In some small cell cancers, first line chemo only treatment of platinum-based chemotherapy drug, cisplatin (Platinol-AQ®) or carboplatin (Paraplatin®), in combination with etoposide (Etopophos®) can quickly knock down tumors. But small cell lung cancer (SCLC) recurs very quickly after a chemo assault and metastases through the body rapidly. Here is more information on SCLC. From what we know now, your dad may not have any form of cancer, SCLC or otherwise.

Liver lesions and there are different types of these (hypodense and hyperdense and others) may or may not be cancer. I'm not clear what was biopsied: the lung mass or the liver. If the lung pathology discloses lung cancer, then you'll get conformation on his type of lung cancer: SCLC or my type NSCLC. Then your dad's next step is likely a PET scan to stage his cancer. Here is information on PET scans and here is information on lung cancer staging. 

NSCLC has more treatment options for adenocarcinoma. About 25% of adenocarcinoma tumors display what are called tumor markers and targeted therapies have been developed to treat these forms. Squamous cell, large cell and SCLC don't have targeted therapies, but all types of lung cancer can be treated with new forms of immunotherapy, including SCLC. But, Monday's expectation of a biopsy report won't include information on tumor markers on immunotherapy suitability (PD-L1 expression). The pathologist will likely submit your dad's biopsy material for additional lab testing to reveal markers or PD-L1 expression. This follow on testing is pretty common, but I'd remind your dad's doctors to ensure this further lab work is performed. It makes a big difference in deciding on a treatment plan.

So there is a lot of new vocabulary to learn even if you have previous medical training. Lung cancer treatment modalities have exploded in the last 3 years as had the difficulty pronouncing and spelling the new drugs! That indeed is a good thing but for now, I'm really hoping for a clean biopsy.

Stay the course.

Tom

 

 

[Fox]

Hi Tom, thanks so much for the reply and all the information. Basically, this diagnosis has worked backwards so far: Dad went in with a bowel impaction. While there, they ran a full bloodwork panel. His LFTs were way out of whack and they suspected he might have a gall stone that had gotten stuck. So they did an ultrasound which showed no gallstone, but instead many lesions on the liver. So they sent him for the CT scan, which also showed a mass on his upper right lung. That night (Wed) they assumed it was a PE so they gave him Lovenox to try to break it up. The next day (Thurs) they sent him for an MRI which seems to have ruled out any masses besides the liver and the lung. This is when they decided it wasn't a PE on his lung but a tumor. That night they told him that they think it is cancer. He called and told me, "I have some kind of cancer in my liver."

But I questioned a diagnosis of liver cancer, as my understanding was that primary liver cancer is rare unless you have a history of cirrhosis or hepatitis. And that's when my dad said, 'oh well they think the PE is actually a tumor too, in my lung.' It took a lot of me asking questions to try to parse out what they were told because it was all so unclear. And finally my mum pulled out her notes, and the doctor had casually said, "well it's probably Stage IV lung cancer that has spread to the liver." It was the next morning before the biopsy that the doc said they were 'hoping for' SCLC for the better chemo response.

The biopsy was taken from the liver. The doc said they will be able to tell from the liver cells that it is lung cancer and what type. And I think they felt the liver was lower risk by avoiding possible infection in the lung? (And also he was able to be given local anesthetic and not put him partially under as they would have for the lung biopsy.)

I'm glad you mentioned that the tumor marker info won't be part of the biopsy, because I probably would have worried they just forgot it lol. I joined the SCLC facebook group that I think I saw you recommend in a thread somewhere, and that has been helpful too. I did take an oncology class way back in 2005 and I had a 4-week rotation on the oncology ward at our women's hospital (so that was all breast, ovarian, cervical, etc), but I know things have changed DRAMATICALLY since then. Immunotherapy wasn't even a thing back then, and it seems like a standard of care for some cases now.

The doc said that if the biopsy confirms the Stage IV SCLC, they will start him on carboplatin tomorrow afternoon. And then if that improves his LFTs, they will add a second drug, but my mum can't remember which drug that will be. Something that requires better liver function to be used. So you think it's not unreasonable that they would start with the carboplatin and not be looking at immunotherapy right away?

I don't think they have mentioned the PET scan yet but I will be sure my mum asks about it tomorrow when she goes in.

I really appreciate all the information and help and good vibes!! I have read that the first week with diagnosis is the hardest time, so I am trying to keep that in my mind when I start to worry too much.

[0621121974]

Hopes it's SCLC??? I have NEVER heard anyone say that . . . .

I hope it isn't. 

[Fox]

0621 - that's what I was thinking. I have never heard of this. Unless it's because it's already in his liver and they think there are less successful options for NSCLC if it's already progressed like that? I can't figure it out.

Just talked to my dad and he sounds great today. My husband got Dad's laptop upgraded so it is finally working on the hospital WiFi and he has been able to listen to music on YouTube since yesterday afternoon. That has made him happy (although my mum said he listened to a too-long string of sad country songs haha, so she is trying to switch him to his other favourite genre of Motown today). No change in weight so far this week and he had an almost-normal blood sugar reading this morning (130). Today is the day we have been dreading, so if anyone can throw an extra prayer or good thought my dad's way, I would really appreciate it!

[LexieCat]

I'm sending every good vibe I can muster. 

That's one of the great things about this group. We all root for each other, celebrate the good news, empathize with the not-so-good news, and share our ideas and resources. 

You're in the right place.

[LUNGevityKristin]

Hi Fox, whatever the results are, don't be afraid to ask for a second opinion.  

[Steff]

Fox,

I understand how frustrating it is not to be allowed in doctor's appointments and at the the hospital - I'm very controlling of my mom's medical information (I prefer to call it advocating!) and keep very good track of it.  When she went into the hospital with sepsis a few months ago, she couldn't have any visitors and I was going crazy not being able to hear, first hand, what the docs and nurses were saying.  I have been there for most of her oncology appointments in the past 5 years and it's so frustrating to be left out of the loop.  So, I feel your pain!

I also understand how hard it is to know that one of our beloved parents is about to have the fight of their life.  When my mom was diagnosed, she was caregiving for my dad who has a neurological disorder that causes tremor and ataxia.  She had her hands full with my dad, as well as, taking care of herself during treatment.  Luckily, she is very stubborn and told herself that she was going to beat lung cancer.  And she has - twice.  See, I feel that attitude and zest for life has just as much to do with recovery as the medical interventions.  The fact that your dad lives his life and has a positive attitude is great - he will need this when treatment begins.  I am hoping the results of the biopsy will give you some relief in at least knowing what it is your dad is battling and where to focus your research.  For most of us, the waiting is the worst part.

Take Care,

Steff

[Fox]

Thank you for the kind words and reassurance, Steff. And that is so inspiring that your mum has beat the cancer twice!

We thought we would have the biopsy results first thing this morning bc they hoped to start chemo this afternoon. It's now nearly 4pm and still no results. Both of my parents are going a bit stir crazy and I'm stuck at work just waiting for a call. Latest update they may start chemo tomorrow which means he won't be home until Thursday at the earliest I think. Sigh. Glad to know I'm not alone in thinking the waiting is so difficult!

[BridgetO]

Hi Fox and welcome. Dealing with cancer is hard. Dealing with cancer in a time of pandemic is especially hard. I feel  your frustration! You've gotten  a lot of good information from forum members. I just want to add that if your dad's biopsy shows  adenocarcinoma (the most common type of non-small cell lung cancer), he should have biomarker testing, since that an open up a whole range of possible treatments. Here's a link to some info on biomarkers  https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/biomarker-testing  . You can also look on the same site for info on treatment targeted to specific biomarkers.

I also think it's very strange that the doc said he hoped it was Small Cell. I'd be inclined to look for a second opinion, which your dad can do at any time, even during treatment. 

Best wishes to you all,

Bridget O

[Fox]

Hi everyone, wanted to give an update with the 'latest and greatest'. 

We finally got Dad's biopsy results around 5pm yesterday. (What a LONG day of waiting!) It is, indeed, extensive small cell. Today he begins chemo. He will have a brain MRI this morning and then a picc line installed. The doc wants to do picc line instead of port because he thinks my dad will only need the line short-term. And then they will start him on carboplatin & etoposide. The carboplatin will just be day 1, and the etoposide will be days 1-3. And then on day 21, he will repeat that cycle, but they will add in Tecentriq. Once he finishes the 4(?) rounds of carbo/etop, he will just remain on the Tecentriq every 3 weeks, and they think they can just do that via IV infusion and he won't need the picc anymore.

They are planning to keep my dad at the hospital until Friday just to make sure they are monitoring his response to the chemo and doing his daily LFT tests. The doc is optimistic that his liver function will start to improve even after just the first round of chemo.

My dad is very scared, but he texted me first thing this morning to say good morning. "feeling good.ready for a busy day.2 MRI picc installation and first round of chemo. But I am a fighter!!!" 

Bridget, you are so right that this is made so much harder by the pandemic. I feel terrible that my dad is going for his first chemo and I can't even be there! I did give him my Pooh Bear that I used to take with me to MD appointments in college to help with my anxiety, so he will hold the bear during treatment since I can't be with him.

The doc spent a long time with my parents last night going over everything, and he will be reviewing the scans more in-depth with them today before chemo starts. I am still not clear on when Dad goes for a PET scan, so waiting for info on that. The doc approached the treatment plan last night by saying, 'this is our plan for the first 2 years, and then in 2 years we reassess and adjust if we need to,' so that made me feel a little relief. I was very worried he was going to say 'well, not much we can do' or 'this is just to make you comfortable for a little while' or something like that and write my dad off because he is a senior. I was worried we were going to have to fight him for immunotherapy. But he was on top of it immediately. He is a newer grad (I think finished his fellowship about 3 years ago), which I like as well, because I feel like he will be more inclined to go after cutting-edge therapies if appropriate.

Anyway, we shall see how this day goes! My dad generally tolerates medicine well, and he is good at listening to his doctors after all these years with anxiety and diabetes. And as I've mentioned before, he is strong and active, and I hope that all of these things work in his favor as he starts this journey. I will keep everyone posted!

(PS, here's a favourite picture of my dad and my husband when we went on our family trip to Banff National Park in 2017. This should give you an idea of his sense of humor   )

[LUNGevityKristin]

Love that picture!  So sweet of you to send Pooh for your dad to hold on to.  I'm glad you have answers and a plan.  Thinking of you and your parents.

[Sabacat]

LOVE that photo!!!  Great news that your Dad has a plan, a great attitude, AND an optimistic oncologist!  

[LexieCat]

Great pic! Sounds like your dad's oncologist is geared up to help him fight and thrive! And it sounds like you guys have a terrific relationship. Family support is SOOO important. My kiddos are coming out this weekend and my daughter is going to stay with me at least through the new year. I know *I'm* very grateful for the help!

Keep us posted and keep that positivity flowing!

 

[Steff]

I think your fear of docs not wanting to be aggressive in treating his cancer is no longer needed - it sounds like his initial treatment plan is standard protocol for his cancer situation.  By the photo, your dad obviously knows how to LIVE.  As I said before, attitude is everything.  It sounds like he is still in good spirits and in good hands with his docs.  I know it's tough not being there, but I am happy that your mom is there with him.  

[D iane]

Hi Fox.  I'm so sorry you are here and sorry to hear about your Dad.

Just wanted to say I would also push for a PET scan as well to check for any further mets.  Adrenal glands, bones, etc.  I pray for you no brain mets are found.

As previously posted the 1st line protocol works fast and is usually 4 cycles.  The goal here is stability.  My husband's pulmonologist said he had a small cell patient stable for 5 years!  My husband was not as fortunate but he fought hard.  There is another member here that has also achieved stability.  My very best wishes to  you.

[D iane]

Edited to say I do see he will have a PET.  Good to have baseline imaging.

[Fox]

Hi all, wanted to share an update!

My dad did his first round of chemo on 8/25 - 8/27. He did GREAT through chemo. No nausea, no fatigue, and he said he was actually feeling better than he had since he came in to the hospital. We thought he would go home on Friday the 28th. However, his discharge got delayed a day because he couldn't eat and was having swelling in the hand where he has the PICC line. Bummer. He'd sent me a text that morning that he was so ready to go, and then the oncologist pushed it back a day.

Well, we discovered the issue with the PICC line was an easy fix - he was sleeping with his arm tucked up under him, so that was hurting the circulation in his PICC arm overnight. Once he was up and doing hand exercises, it was fine. So we just have to make sure he doesn't sleep on that side, or if he does, he keeps his arm straight.

The not eating thing was scarier. He kept complaining that it felt like daggers in his throat every time he swallowed. It turns out that he had developed thrush. My mum thinks he went in with a mild case localized to his mouth, but it got worse after the chemo and was all down his throat. So, he was started on diflucan and discharged Saturday (the 29th) afternoon.

The first two days were ROUGH. He still couldn't eat anything but soup and ice cream and Ensure. And he was falling asleep sitting up, which is not like him. He's always an 'early to bed' kind of guy, but he will say, 'that's it for me!' and head upstairs at 8pm long before he nods off on the couch. It was a little scary to watch!

By Monday the 31st of August, the diflucan was doing its thing and my dad was able to EAT! He has such a great appetite. He was eating cucumbers and green peppers that afternoon, and my mum and I made little steaks in the air fryer that night, which he loved. He had his oncologist appt for his Udenyca shot (biosimilar to Neulasta), and that went well. He had some back pain that night, but his medicine covered that.

Tuesday morning he was more alert, up and making coffee, and requested my mum's famous oven pizza (it's just DiGiorno but she adds toppings and seasonings and it's as good as from a pizza place). We were feeling great!

The only issue was that he's got a TON of swelling in his feet and ankles. So bad that he can't put his regular shoes on. We took him to his oncologist appointment in slipper socks. So he hasn't been able to do much walking or moving around. The home nurses are checking and keeping an eye on him, and it hasn't gotten any worse, but it also hasn't gotten much better. They think it's partially a chemo side effect but also in large part that he's not getting enough protein in his diet, which makes sense, since he basically didn't eat anything but soup and ice cream for 3 days straight.

So, fast forward to today, Sept 5. He's been home a week, and his weekly bloodwork came in this morning....... his bilirubin dropped from 8.8 the day before he started chemo to 4.3!!!! We were all cheering at 6am this morning when I got the results!

The only bad thing is that his red blood cells have tanked. His hemoglobin is 8.1 currently. Since it's the holiday weekend, we can't do anything about that unless we go to the ER. His oncology nurse called today to go over the results and said that if he starts having shortness of breath over the next 3 days, to bring him in, but otherwise we can just monitor him. She wants him to increase his water, have some gatorade, and up his protein, so I started tracking his macros along with mine lol. (As a long time distance runner, I'm a super pro at this haha.) He's not really having much shortness of breath, except when he does the stairs, which I expected since he's not been mobile and it's the most exercise he currently gets. It's possible Tuesday he will need a blood transfusion or a platelet transfusion, but we shall see.

So, that's where we are now! My mum and I tried to make his famous homemade french fries last night, but he had to jump in at the end to help. We also went to the nature center by their house so husband and I could walk laps, and we were able to watch the sunset together, which was lovely. We also bought Dad some new slippers with adjustable velcro so they can fit on his swollen feet, and he's been wearing them since they arrived in the mail today. He will be able to walk around outside now with those new shoes.

It's been a week of ups and downs but on the whole, he is doing REALLY well. Once we get the RBCs sorted out, he will be in great shape. He'll have a retest Tuesday, and we will see if the change in diet has an impact.

Here's a photo of our fam together at the nature center last night. I promise I will try to check in more regularly so that my posts are not a hundred years long each time hahaha. Thank you all for all of your support, prayers, and kind words thus far!

[BridgetO]

Hi Fox, It does sound like he's doing well. I was wondering what chemo he'son. When i had a prior non-lung cancer, I had cisplatin with radiation and then carboplatin and docetaxel (Taxoterre, similar to Taxol0. I became really anemic, tired and short of breath. After a transfusion of red blood cells, the next day I perked up and felt remarkably better. Don't hesitate to use the ER if he gets worse over the weekend.  Hang in there, all of you.

Bridget

[Fox]

Hi Bridget, he's on carboplatin and etoposide every 3 weeks. I'm glad to hear the transfusion was helpful! My mum is worried that he "may need a transfusion already" after just his first cycle of chemo, but I think he was already a bit low on platelets when he went into the hospital anyway. I tried to reassure her that the transfusion isn't really a big procedure and that it can be done outpatient. The increased protein in his diet seems to be helping a bit bc he's had more energy yesterday and today after getting higher protein on Saturday and Sunday!

[Fox]

Hi all! Just popping in to update. My dad is on cycle #2 of his chemo (actually in the chair for day #2 as we speak). He has bounced back energy-wise SO MUCH in the past week, it's been wonderful to see! He met with physical & occupational therapies and they gave him some tips on getting around better and some strengthening exercises to do. The swelling in his legs & feet has gone down enough that he can comfortably wear the cushy slipper we got him, so he is walking around a lot more!

His oncologist added Tecentriq to the chemo cycle yesterday, and so far so good. Any time a new med gets added, I have that moment of fear of 'what if my dad's allergic or has a bad reaction'. But he did really well with it, and I saw him this morning & he looked great. 

Husband and I went away for a few days on a little cross-country drive. We had hoped my parents would be able to join, but it didn't work out with my dad's chemo schedule. He still wanted us to go so we could share photos and he could enjoy the journey vicariously. Yesterday, on the train home, my dad's latest bloodwork got updated in the med portal. I was in happy tears on the train - his liver function tests were those of someone without cancer in the liver!!! His bilirubin (the marker the oncologist is going by) dropped from an 8.8 at diagnosis to 1.6 yesterday!!! Under 1.4 is the normal range. All other LFTs have come down into the normal range as well!

I know this is a long, difficult fight, but I have felt so good the past week seeing my dad bounce back to his usual self. I am sure the chemo will still take a lot of out of him in the coming days, but Dr Spada is confident that he will do better this round simply based on the fact that his liver is doing so much better already. 

[LexieCat]

GREAT update, Fox!  Glad to hear he's doing so well.

[BridgetO]

It sounds like the treatment is working! Wonderful news!