Dad has stage IIIb Adenocarcinoma…feel lost/overwhelmed

[Bellbottomblues]

Hi everyone. We just found out my 64 year old dad has stage IIIb Adenocarcinoma a few weeks ago and it’s been quite the shell shock. My dad feels great, still working full time and he’s very active, but he has had COPD for some years. Recently he started coughing up blood and that’s what sent him in to be checked out. The dx came fast and furious from there. 
 

I feel very helpless because I am in NY and he and my sister are in Myrtle Beach. Most of the responsibilities are falling on her, and she isn’t very well versed when it comes to medical terminology and things like that. My dad is even worse with it, and so it’s like the blind leading the blind. Add to that a bit of a language barrier with the oncologist and I’m left feeling like it’s a game of telephone, trying to eke out the information after his appointments. I was able to gain access to his health portal, and that’s helped me gain some insight. I am here hoping that those with more experience can lend a little advice? The oncologist is presenting my dad with 3 different treatment options. I will attach an image with the most recent clinical note. My dad says that the Dr will not give a professional opinion on which she believes is the best option for him, which I don’t understand? Anyway, the treatment options are: 

cisplatin & etoposide 

weekly carbo and Taxol

carboplatin pemetrexed for 4 cycles

per the notes, full dose radiation is also part of the tx plan. Does anyone have any insight? It would be greatly appreciated! Anyway I will probably be on the boards a bit, so nice to meet everyone even though I wish none of us had to be here 😕

 

 

[Bellbottomblues]

[Bellbottomblues]

[Tom Galli]

Oh my!

If it is any comfort, I was diagnosed stage IIIB, with squamous cell NSCLC. My first surgical evaluation was not favorable and I had first line chemotherapy (taxol and carboplatin) with 6-weeks of fractional general radiation. These treatments worked and shrunk my very large single tumor enough to allow surgical removal of my right lung. But I had post surgical complications, and you can read about them and the rest of my treatment history on my profile.

My point is my first line chemo-radiation worked. Yes, taxol did cause neuropathy as a lasting side effect. There is downside with every chemo combination, but don't focus on the downside when the objective is extended life. I would help your dad approach his treatment dilemma from a different prospective. If I were in his shoes, my question would be which of these treatment combinations will best arrest my lung cancer. That is the most important consideration right now.

Your doctors treatment regimes are all appropriate for non-surgically treated Stage IIIB lung cancer. All chemo combination meet the national standard of first line care. I'd help your dad reframe his questions to be: "which chemo combination along with radiation has the best chance of stopping my lung cancer."

Stay the course.

Tom

[Bellbottomblues]

Thanks for response! And I’m so glad to hear that your treatment protocol worked for you. That makes me feel good. My dad is a very stubborn man. He works 7 days a week and he’s one of those strange people who really enjoys work. It makes him feel useful, like he has a purpose, and gives him a sense of pride. It’s basically his whole identity. The hardest thing for him has been having to accept that right now he feels fine (except for the whole coughing up blood thing, which barely seems to bother him?!), robust appetite, lots of energy, and he’s having to start a treatment protocol which he knows will leave him feeling awful, exhausted. It’s hard for him to look at the long term. I feel the same way you do-I think he should go with whichever the dr feels is best. But both he and my sister say that she won’t give a recommendation, just says to look at the side effects of each and consider that in making the decision. That seems crazy to me. I think I’m going to just call over there myself. 

[Judy M2]

Hi there, it's great that your dad's doctors are aiming for curative intent. In October 2019 at age 66 I was also diagnosed with Stage IIIB adenocarcinoma, but I was EGFR positive. Like Tom, I had 30x fractional radiation and 6x chemo (carboplatin and taxol). After those treatments ended, I started on a targeted therapy for the EGFR mutation. 

Radiation gave me esophagitis because of the location of lymph nodes being treated. I feel like my case was unusually severe but it finally resolved after several months. Fatigue is a common side effect of radiation. 

I did not get neuropathy or tinnitus after chemo but remember, everyone is different. My hair did fall out but it has since grown back. 

I know that some patients get carbo/taxol and others get carbo/pemetrexed, and I agree with Tom about the reframing of the question to his doctor. 

It is possible that your dad may get fatigue from treatments. It took me several months to recover but today I feel pretty normal. By the way, B12 deficiency and anemia are pretty common and both can be treated. 

Your dad's infusion center will draw blood prior to each infusion so they will monitor things like kidney function. 

I got a port to make chemo infusions easier. I still have it and go for flushing maintenance every 8 weeks. My biggest reason for keeping the port is that I have an allergy to the adhesive on the Steri-Strips which caused quite an itchy rash for several days after the placement procedure. 

So the good news is that I've had No Evidence of Disease (NED) since April 2021. I get PET/CT scans every 3 months, which is pretty standard for follow-up. 

Your dad's active lifestyle should serve him well to tolerate treatments. The one thing I wish I had done at the beginning was to get a palliative care specialist on board before my side effects started. You might want to consider that for your dad. 

Wishing him good results from treatment. 

[Bellbottomblues]

Thank you for the response! And I’m so glad to hear your treatment had such favorable results, it really makes me feel good to hear, all my research thus far had made me feel very down in the dumps. I actually did call the Dr and left a message a little bit ago, I want to get some feedback from her. I was browsing the chemo forum here and it looks like a lot of people get the “triplet”, with Keytruda added in. Were either of you eligible for that? 

[Judy M2]

Thanks, and my best advice is to stay away from Dr. Google. So much information is outdated. Stick with sites like LUNGevity, GO2 Foundation, cancerGRACE, American Lung Association and American Cancer Society. 

Since I'm EGFR+, immunotherapy is not an effective treatment for me.  Lots of people do get the triplet with good results. Just note that not everyone can tolerate Keytruda, but when it's well tolerated it can be very effective. You might want to take a look at the Immunotherapy section of this site too. 

I don't know if immunotherapy would be right for your dad, but it could be worth a second opinion to find out. 

[Susan Cornett]

Hi - glad you found us. I was diagnosed with stage IV adenocarcinoma almost 6 years ago. I had surgery and chemo (cisplatin, pemetrexed). When I had my recurrence, I had carboplatin and taxol, along with radiation. Last recurrence was treated with SBRT.

As a result of chemo, I have neuropathy in my feet and I also have tinnitus. The tinnitus started after my first round of cisplatin. Super Doc offered to lower the dosage to avoid permanent damage to my hearing but I declined. You may want to check out chemocare. The site is run by Cleveland Clinic and provides information, including possible side effects, for just about every chemo available. This might help your dad figure this out.

For what it's worth, I'm happy to see that the oncologist tested for mutations. It's not standard for all oncologists. 

Hang in there and keep us posted.

[Bellbottomblues]

I will check out that site, thanks! Yes, I had been browsing the forums here before I was able to access my dad’s health portal, and I saw all the posts about mutations and targeted therapies, and so I was glad to see that the Dr tested! Gives me some confidence about his treatment facility. There isn’t much info about them online, no reviews! 

[Karen_L]

I understand how worried you are about being at a distance. Just a thought— can you attend appointments virtually? From the beginning, 3 or 4 family members have Zoomed or Facetimed into every doctor meeting I’ve had. I use my iPad so the doctor can see their faces. Now my radiologist and oncologist wave at the iPad screen and say, “How is everybody?” before we dive in. 

I can understand how down your research left you feeling. Lung cancer is sneaky and relentless. But we don’t have to face it alone, as you’re seeing here. 

Is you father’s doctor a lung cancer specialist? That’s important, in my opinion. And, what is the closest NCI-designated cancer center to him?  I’ve not done it, but people sometimes consider a second opinion before opting into a treatment plan, and they often look at using one of these NCI sites. 

This is a scary time. If you can, try to take slow, deep breaths; try to look away from all the information once in a while, especially if you are feeling anxious. 

Hang in,

 

Karen

 

[Bellbottomblues]

Just wanted to give an update-I did call and speak with my dad’s doctor, and then went over things with my dad. The ultimate decision was carboplatin/taxol, plus 6 weeks of radiation. After 6 weeks he will have a rescan, and then Keytruda will likely join the party. My dad is in pretty good spirits, considering, and just wants to get the show on the road. 
 

I took a look and the closest NCI spot to my dad is Charleston-he’s in Myrtle Beach. Not too close, but not super far either! Good info to have, so thanks for that . 

 

[LouT]

Hi BBB,

First off, I grew up on Long Island and know your area very well.  I hope some of that snow from last week is melting now.  Okay, onto your dad.  You've already got some great advice and counsel.  I'm going to add something else for you to look at; it is our Caregivers Resource Center.  As you are learning, being a caregiver can be a challenging task.  This area will have more information to help you "do your part" well.  You can find the Caregivers Resource Center here.  We'll all send good thoughts out for your dad and family.  Please update us and ask questions.  

One more thing...Judy's very good advice about a Palliative Care resource on the team is a great one that you should act on now and not wait until after treatment starts.

Lou

[catlady91]

Join the club; my mum was diagnosed with stage IIIB squamous cell carcinoma almost exactly 2 years ago! Mum is currently NED (no evidence of cancer) and is doing amazingly well. 

Its great that your dad is being treated with curative intent (as was my mum's treatment). I can understand his worries about the drugs they want to give him; my mum had the same fears about immunotherapy. At one point she read the list of side effects and didn't want to go through with it but I bullied her into it. I said to her, this treatment could potentially save your life. Yes the side effects don't seem pleasant but this treatment could potentially save your life and that's the thing to consider- no pain, no gain! If the treatment is for the greater good (eradicating the cancer), then that's what you have to think about. 

I can understand your dad's fear about neuropathy but if that will be the most effective treatment for him, he needs to decide whether he wants the treatment that will be most likely to get rid of the cancer or to have a treatment that might not be as effective which could lead to more suffering if the cancer worsens. Neuropathy isn't pleasant (my mum has it) but she can still live with it and use her hands. She's just had carpel tunnel surgery and she's regained feeling in her fingers so it could be that instead of neuropathy.

I hope your dad chooses the right treatment.

[Bellbottomblues]

He did end up going with the Taxol, which was the med with the neuropathy as a potential side effect…overall it still was the best option for him!
 

He had his radiation simulation and he seemed to like the team-but as the night went on he got concerned about where they placed the marks, asking me why they were all over, some so low and on the other side of his body when the tumor is on the upper left side? I could tell he was feeling down. I found some YouTube videos for him that explained radiation and even showed the process but told him to go ahead and call the facility and ask for a more thorough explanation. It’s so important to him to always come off as a tough guy, and I think he’s got to be willing to let that go during this process. I also plan on looking into whether his insurance will cover palliative care during treatment! Thank you everyone for your feedback, I really appreciate it. 

[Judy M2]

I got 3 tattoos for radiation, and they didn't seem to correspond to where my main tumor and lymph nodes were either. The radiation teams have lots of expertise, and your father should be getting CT scans during radiation treatments (maybe weekly, as I recall) so they can judge his progress and confirm they're hitting all the right spots. The tattoos won't make sense to us but I assure you they help guide the team to hit the right spots. 

[Susan Cornett]

I've got six tattoos that, in my mind, didn't align with the target. Radiation and SBRT were successful and now I have the world's most eclectic tattoo.

[RJN]

Same here re tattoos. They are “anchors” to align the machine. So I get lined up to the tattoos, and then they move the bed/slab 2.8 cm right and 1.4cm up. I hear/see them do that routine daily, so not to worry.