Jump to content

[59m] EGFR exon 18 turned to small cell. Diary.


Recommended Posts

Hi, this was initially a question about if anyone else EGFR turn into small cell. I've decided to convert this into a journal of my dad's journey with his cancer. He was diagnosed with EGFR Exon 18 non-small cell lung cancer stage 4. He had a persistent cough that wouldn't go away. He thought it was just alergies for a month in 2018 and ignored it. in 2019, the same thing occurred, except the cough got worse. Finally, he decided to see a doctor and x-ray they discovered the 7cm tumor.  

 

---------------------------------

Backstory for future patients/ caregivers in similar case.

 in about 5% of EGFR cases, the cancer changes to small cell, which is the more aggressive version. In the case of my dad, the doctor thought it was strange that his cough came back after 3-4 months on his second targeted medicine (afatinib, which has some indications of being better for egfr exon 18). His primary tumor didn’t grow and the other site just changed slightly, so, for his cough to come back was strange.

 

the plan was to stop targeted therapy for 7 days to join a clinical trial (Company is Puma. for testing an Approved breast cancer HER targetingdrug but now in EGFR). Except, his cough became quite severe day 2 and 3 after stopping. Sometimes having difficulty breathing because can’t breathe while coughing. So, in alarm, oncologist had us resume targeted medicine on day 3, which abated the cough. Meanwhile, a biopsy was ordered to examine the cells to see if they had changed, and the clinical trial company refused the doctor’s request to waive the 7 day no treatment requirement. if it wasn’t small cell, plan would be to do chemo for one cycle (the effects linger in the body longer so will prevent cough while meeting the 7 day no cancer drug requirement) then switch to trial.

 

unfortunately, test was positive for small cell. So,  current plan is to do afatinib (for EGFR) and chemo (cisplatin and etoposide) for the small cell. Currently, we are about to start the first chemo cycle. His symptoms are occasional cough but severe backpain if he stands/moves around for more than 10min  (started a few days after stopping targeted medicine)

 

8/15 edit: Resources:

Pubmed is a good place to start, just search for "EGFR Exon 18" as keywords (and maybe "literature review", if you want papers summarizing the recent discoveries). After a paper or two, you'll be aware of all the key and they become easy to read (sometimes, best to just read the abstract, the figures, and the results section).

Another place you can use for research is the NCCN which describes the current best standard of care used by oncologists. It's updated each year and gives you an idea of what your oncologist is considering.

https://www.nccn.org/professionals/physician_gls/default.aspx#nscl

----------------------------------------------------------------------
edit 1/7/2021: the events from the beginning:

Around 4/2019 dad finally saw the doctor for his persistent coughs. He had thought they were allergies and, trying to save money, did not care to see the doctor when he had similarly months long session of persistent coughs the year prior. The x-ray showed mass in his lung, possibly cancer, and the doctor recommended Pet CT. He was frightened and immediately booked a flight to china to do a CT because he was afraid of how expensive healthcare here could be. I was in the East Coast interviewing, having just graduated from my graduate program and booked the next flight to China. I'm very thankful for my relatives. My uncle gave me his credit card and said doesn't matter the cost, put everything on his account. In China, his sister who works in government used her network to schedule him an appointment ASAP.

In China, it was determined to be very likely cancer, so the next step was to get biopsy in the US to seek treatment there. I enrolled him in health insurance (it turned out his insurance was a sham. One of those sketchy ads that promise low costs. He enrolled just to follow the law, believing he's perfectly healthy) and sought treatment from UCSD which is the closest NCI-designated comprehensive cancer treatment center (basically the best. Go to these places). 

His biopsy doctor had referred us to an oncologist affiliated with the home institution, Scripps, but I pushed for referral to UCSD. Dad saw both oncologists and gelled better with the UCSD one. The scripps was very straightforward which works for some people but not him. The UCSD doctor exuded warmth and one word from her and you felt like you're in good hands.

The biopsy showed that he qualifies for targeted therapy, specifically his type is EGFR. It took 2-3 weeks for the results to return, which kind of sucked and I hope the delay had no overall effect on the course of the disease. After that, I'm reading all I could on EGFR NSCLC through google scholar--keywords being "NSCLC EGFR prognosis" or  "NSCLC EGFR trial review" (the latter to see if anything in phase 2 or 3 trials to be keeping an eye on. Reputable websites being pubmed and other cancer research journals. 

This is his journey. I will try to add more details in the future

6/2019 Erlotinib

It reduced the tumor at least 10%. Side effects very mild. within 2-3 days, his cough disappeared and so did much of his pain.

9/2019 Afatinib

After scans, all the sites were stable with some main tumor reduction. however one side showed a tiny increase. Doctor switched to Afatinib which is very similar to Erlotinib but binds stronger to the cancer cells (at the cost of a bit higher side effects). There is some data saying EGFR exon 18 benefit more from Afatinib but the data is a bit controversial. Doctor started first with the more tolerable Erlotinib. 

2/2020 Mutated to small cell lung cancer. in like 5-10% of EGFR cases, the cells partially mutate to small cell lung cancer which is more aggressive, unfortunately. He has both EGFR and small cell. In this case, the doctor choose medicines primarily effective against SCLC but also shown to act on EGFR.

2/2020 Cisplatin + Etoposide + Afatinib. This is I believe standard first line treatment for small cell. 

6/2020 Docetaxel. Sadly there was liver progression. Liver progression is very dangerous. Thankfully, his lesions seem to be stable. He also ended up with brain progression a bit later. But doctor isn't worried if it's just a few 1-3mm spots. They were treated with radiation spot treatments which has  kept them inactive while minimizing damage to the brain.

12/2020 Lurbinectedin. See below posts for more info

 

 

 

Link to post
Share on other sites
  • 3 months later...

Hi,

I'll document updates here. I found reading a person's posts about her dad's experience with lung cancer very helpful and maybe this will do the same for future readers.

Since last post, dad went through 3 rounds of chemo. for some reason, the side effects have been harder on him than normal. for the first week following infusion, he would be bedridden because of nausea. Nausea being worst when he gets up. he was prescribed two nausea medicines, compazine and zofran. but, they don't seem to work too well for him. Sometimes they work, other times not so much. Talking to another person, his dad also experienced varying effectiveness with the nausea medicines.

in the first week after chemo, eating and drinking was difficult. he would feel the urge to vomit each time he tried drinking or eating. we actually had to go to the emergency room because dad was too dehydrated. He felt really bad in the middle of the night, so we took him to the ER. Turns out, he was dehydrated and they gave him sodium water IV for hydration. Doctor ended up scheduling him salt water IV infusions 3 days a week following chemo rounds. 

in the 2nd round, we were prescribed antivan, which, when combined with zofran/compazine, is supposed to have synergistic effects against nausea. the downside is that antivan causes drowsiness and made him sleep all day. good news is that his nausea wasn't as bad and he was able to drink fluids.

After the second round, dad also underwent radiation for some cancer on his vertebrae. Cancer didn't affect his central nervous system but did weaken the bone. the radiation was effective but the side effects (nausea) seemed particularly long lasting. we thought it would dissipate after a few days but his nausea persisted for the next 6 weeks and counting. that nausea wasn't so bad to require medicine. but, when getting up from a bedridden position or encountering certain foods, he would feel very momentarily very uncomfortable. 

 Then came the third round which doctor stopped after the second infusion because of severe side effects. I think the lingering nausea from radiation and dad's weightloss made the doctor put it on pause. Dad had lost 28 lbs from 158 to 130 and was hovering at around 140 at that time. Doctor wanted dad to be able to eat more and go up in weight. Plus, that chemo regimen was supposed to be just 3 rounds, so we were close enough.

 

June 1.

5 weeks after last chemo round, dad is up 6 pounds to 146 (yay!). we started walking around the neighborhood and he can now do 3 laps (~20 minutes). more than that and his toe hurts. we're trying to move around more because dad was bedridden and doctor says most important thing for him besides taking medicine is to fatten up and be mobile. being bedridden causes his body to become weak. 

Unfortunately,  we got scans back indicating progression to the liver. The good news is that his other cancer sites did not change much. So, doctor finds it hard to explain why dad's cough is back. scans show essentially same size. this has been a pattern of cough coming back or a new pain occurring but the scans not showing any or significant increase in tumor size. Doctor didn't mention implications to dad to keep his spirits up but I know that liver progression is a bad prognosis. I was also hoping that the relapse would occur after 90 days. stats show that relapses that occur after 90 days respond better and longer to treatment. 

However, there are few statistics on EGFR turned small cell, so nothing is certain because it is rare. it's harder to forecast how everything will play out.

For second line, doctor prescribed Docetaxel. she stopped afatinib which he was still taking daily. Docetaxel is active against both the small cell and nsclc in his body. There is a new 2nd line drug, Lurbinectedin, pending FDA approval in August. Some data showed, I think, progression free responses of maybe 5 months? Doctor said Dad would switch to that if it is approved. I'm hoping that it will have good efficacy for his type of cancer.

Meanwhile, I'm trying to finish immediate work stuff so I can take 6 months off. Doctor said we're at the stage where I should consider that.  

 

Link to post
Share on other sites
  • 2 months later...

August 15

We got our scans back ~3-4 weeks ago. Currently, stable with no reduction or growth. Sad that no reduction but we are glad that there was no progression and that the chemo is still effective. This second line has far less side effects than previous. Nausea is worst the 2 days afterwards, and he doesn't puke like in the previous chemo. Dad doesn't need to take additional meds for side effects (though I worry that his aversion to any "unnecessary" meds means his quality if life suffers needlessly. For example, if he were to take simple pain meds, he'd be able to be more active and that can make him stronger for future treatments. But, all I can do is to gently suggest those other meds if I hear him complain about back or shoulder pain (about 4 out of 10 on pain scale)).

He is able to do 20 minute walks after 3 days and about 40-50 minute walks after 1 week. We try to keep active so that he can be stronger for future treatments and strengthen his immune system. Doctor says, the most important thing we can do now is to keep his weight up and ensure he exercises. 

The new drug mentioned mentioned in the last post was approved early ahead of schedule. We now have another drug in our arsenal. My fingers are crossed that these drugs last as long as possible.

As for me, I've quit my full-time job to be able to be a full-time caretaker. We are planning visits to Yellowstone and other places once he feels better. In the meantime, we're thinking of visiting the beach and other local recreational places. His sense of taste (especially salt) fluctuates (worst during first week or so of chemo infusion), so I want him to be able to eat delicious foods in case it gets even worse if we change drugs in the future. I'm fortunate that I have 14 months of living costs saved up so being out of work is not an issue (though I am self-learning data science to prepare for a career pivot in the meantime). 

How has pandemic affected treatment?

For us in San Diego, this means that we cannot accompany him inside the clinic for infusions or doctor's appointments. We call in via video call on my dad's WeChat app to see the oncologist discuss things with dad. Before each visit to the oncology center  (doctor, infusion, etc), dad is tested for Covid the 3- 7 days before. He goes to a site just for patients like him who aren't showing symptoms but just need the test for the doctor's visit. It's a drive-through test site at the parking lot of one of the UCSD medical sites. Some of his appointments (ie chat with nutritionist, minor update with oncologist) are done virtually through video call on UCSD Health's telemedicine app). We wait in the car for the times when dad needs to go onsite.

The most consequential aspect is the cut off travel to China. We did not finish taking care of our estate items and, with the whole diplomatic spat between the two countries and the pandemic, we can't visit to do legal stuff, and relatives from back home can't visit either (reduced flights or the fear of reprisal from visiting the US due to working in a government job).

To the people reading this, stay strong and give your loved one many hugs and kisses.

W

 

 

 

 

 

 

 

 

 

Link to post
Share on other sites

Hey, Kwally,

Just catching up with your story. I've been away most of the past year, thinking my Stage Ib was behind me. But my most recent scans show it has returned--just had a biopsy and I'm now Stage IV adenocarcinoma. Still waiting for molecular studies to determine treatment. 

I think it's great you're in a position to help your dad so much--he's lucky to have you. My daughter is coming out from Colorado in a couple of weeks to stay with me while I'm undergoing treatment--she'll be here at least through the end of this year. For now, at least, her job permits her to work remotely. 

Good luck, and keep us posted. I hope the new treatment knocks this back!

Link to post
Share on other sites
  • 2 weeks later...

Hi LexieCat,
That's so unfair. You and your health are in my thoughts. I'm so glad your daughter is moving back and able to work from home. My only wish is that I quit sooner. Three months sooner. That money is insignificant compared to the time gained. 

Link to post
Share on other sites

August 28

We discovered last Tuesday that the disease has progressed to his brain. There are two spots at 4mm and 7mm. Doctor says sometimes she sees patients with 30 spots, and those are the cases that she worries for. These two spots should be responsive to radiation. Our oncologist forwarded the scans to a radiation doctor wednesday, and we were scheduled an appointment for Thursday of this week (so 9 days after discovery). The video-call was with the nurse who just to give us info about what to expect. They want to give him radiation over 5 days of (they will use stereoscopic(?) not whole brain but the other one) radiation which will do pinpoint strikes at the tumor sites. But, before that, they want to do another MRI of the brain. They intend on timing the radiation so that it doesn't occur the same week as his chemo (don't want to stack side effects).

Because he's EGFR (exon 18) turned small cell, there are small cell and EGFR in him. We don't know which is at his brain (systemic treatment for brain metastasis differs if it is EGFR or small cell because of the blood brain barrier which makes it hard for drugs to penetrate), but our oncologist has planned a combination of chemo (for small cell) and osmeritnib (for EGFR) if the current chemo loses efficacy. The new chemo drug lurbinectedin was recently granted FDA approval for 2nd line small cell treatment, and that is also an option. 

He was also scheduled a pet-ct last week (they do CT and pet-CT. I think pet-CT is better at seeing spread to bones? or vice versa). However, his blood sugar levels were too high so they postponed the scan one week. He has diabetes and usually his sugar levels are good.

I had asked our doctor how much time she thinks he has after it first progressed to the liver. I asked her the same question once hearing about brain progression. She said she thinks the first estimate is still relevant. 

Emotionally, dad took it hard the first week. When he's downstairs, he likes to leave 1 light upstairs on, because it resembles a ray of hope and helps soothe him. My last day at work is next Monday. I just hope that the radiation and treatment lasts as long as possible.

For all of you reading this, I wish you and your loved ones the best though this journey. Cancer is so unfair. 

   

Link to post
Share on other sites
  • Kwally3 changed the title to [59m] EGFR exon 18 turned to small cell. Diary.
  • 2 months later...

Hi Sabacat, thank you for the thoughts. 

November 23:
The past months have been have been nice to us. We got a telescope and dad was able to (barely) see Saturn using the 60x magnification. With the pandemic, we stayed home while going for walks in the neighborhood or at the nearby lake 5 minutes drive away. Like previous rounds, the first 10 days after chemo are the most uncomfortable. It hurts the hour after he eats something substantial (thought croissants seem to be ok) and it can be a struggle keeping his weight up as some days he'll eat maybe not more than 1000 calories (sometimes maybe 500 due to eating just one meal). Abbott's Ensure calorie drink has too strong a medicinal taste (and I think sugar is too much. Chinese people think everything is too sweet in the US). But, we just discovered that cacao Soylent has very masked medicinal flavor. Unlike other treatments, dad's taste didn't seem to change too much. There were a few days where he couldn't taste salt or foods had weird flavors. But in the last month, his taste is pretty normal. In fact, the past few months have started to feel like pre-disease. Yes, there days where the pain is unbearable (doctor prescribed stronger opioids which lasts 12 hours instead of the previous low dose oxycodone which lasts 4 hours).

Three weeks ago, he went in for his second brain radiation. There were a couple new tiny nodules (~2mm) which the radiologist thinks were leftovers from the first batch which were yet too small for the MRI to pick up and thus didn't get radiated the first time. He went in for 1 session instead of several sessions spread across multiple days.

Thank you everyone for keeping him in your thoughts.

Today, we just got word that his cancer has progressed. There are new lesions on his liver, some growth in his primary tumor, new activity in the existing site on his vertebrae, and I think one more area (lymph node?). Just one month before, the scans showed essentially no change (maybe an existing liver lesion changed by 1mm). The oncologist suspects the aggressive growth is caused by the small cells, since they are more aggressive, rather than the EGFR cells and provided 2 options. Change to the recently FDA approved chemo for small cell, lurbinectedin, or start hospice. She told dad to think it over for a week and that next Monday she will see us again. Because very few people are EGFR turned small cell, there aren't data points on how well this group of patients do/respond to the various treatments. In the data for the newly approved chemo, I don't think there were any EGFR turned small cell patients. Clinical trials also aren't likely to accept EGFR turned small cell patients. Dad said doctor mentioned she doesn't know how to treat him. I think doctor meant that she has no data on how effective it will be for his case. I wasn't able to be there since they don't take visitors. Thinking it was going to be a routine pre-chemo chat (dad was scheduled to take his routine chemo today), I didn't video call in and went off to do groceries, taking advantage of the early hour to not face crowds. 

FDA says that the new chemo has median time-to-disease-progression of 5 months. Here's to hoping that it lasts much longer. Tonight I'm cooking dong po rou, a very delicious braised pork dish that he likes. This weekend, we will have a video thanksgiving, including his sister in China and his brother across the city from us. We've been eating partially whole grain to avoid blood sugar spikes, but I think we can afford to go all out now. We can deal with diabetes after this :). That's a problem in 10 years.

As to what we are going to do now, dad's chief worry is being able to leave me with some form of inheritance so that I will be taken care of, even though I'm very privileged to be able to pursue many lucrative career paths. I think he wants his 30 years of work to bear fruit, and although he had sizable losses in career advancements due to things outside of work, he wants it to mean something. So, we'll be starting a father-son business. We're also going to look at will and these other things. Here's to hoping I won't be posting here for a long long time :). Stay safe everyone, and happy thanksgiving. 

 

 

 

 
 

Link to post
Share on other sites

Hi Kwally, I hadn't seen your previous posts but have just caught up. Your dad and you have been through so much.  What an incredibly difficult journey. You are so informed, and your dad is lucky to have you as his caregiver. 

I also live in San Diego and get my oncology care at cCare in 4S Ranch. I have used Elizabeth Palliative Care for pain management and plan to use their hospice services some day. 

I hope you enjoy Thanksgiving with your dad. I also wish him success with his next line of treatment and with your new business. 

Link to post
Share on other sites

Hey, Kwally, thanks for the update. You and your dad are pretty tough cookies! 

LOL, I have serious foundation problems with my house, and I tease my kids that I keep debating which one of them I like more--so I can leave the house to the other one! :) The business idea sounds like a terrific project that will take his mind off some of the medical stuff. 

Hope you all have a terrific Thanksgiving, too!

 

Link to post
Share on other sites

I'm so sorry your dad has been through this difficult journey but THANK YOU for sharing it all with us.  This will be such a great resource for someone else finding themselves in the same position as your dad.  Congratulations on your new business, please keep us updated on how it goes.  Wishing you both a very Happy Thanksgiving!

Link to post
Share on other sites

Hi Kwally, I'm sorry to hear that your father's cancer has progressed. But it's good to hear that the two of you have been able to spend quallity time togeher these last few months and I hope that can continue whatever the future may bring.  He's fortunate to have you as a caregiver and you're fortunate to have him in your life, too.

Bridget O

 

Link to post
Share on other sites

Thank you everyone for your kind words. His brother learned about this plan and has graciously offered to help fund it so that it can be kicked started earlier. One of our aunties is actually experienced in this type of business and will help out. Fun tangent: In East Asian culture (at least china, Korea, and Japan), you refer to family friends who are your elders as aunties/uncles

 

@Judy M2 That's good to know. I'm not very aware of palliative care while undergoing treatment. When/what reasons would you do that? We went with UCSD.

@LexieCat Ha! that's hilarious. My vote goes to the shorter one. Tall people are overrated imo.

@LUNGevityKristin Thank you! I surrounded myself in reading everything I could on people's experiences the first week after getting the news and know this will be helpful for others in the future.

@BridgetO Thank you!

 

 

Link to post
Share on other sites

K, I'm actually in a study right now that is set up for me to see a palliative care doc every other month. The purpose of the study is to see whether/how much it helps people to get access to palliative care early in treatment. 

I've had a (thankfully) relatively easy time, both with my cancer symptoms (which are essentially none) and with my treatment side effects (mild and fairly manageable). So a lot of my visits with the Palliative Care doc have been just conversation--sort of like you might have with a therapist. We talk about how I'm feeling, any problems I'm having, anything I'm worried about, etc. She's awesome, and I enjoy our talks. If it turns out that I need physical treatment to relieve any symptoms, I'd be very comfortable reaching out to her to connect me with help.

I think most decently-sized medical centers have palliative care specialists--I think you just need to ask for a referral to find out what's available where you are. The conventional wisdom seems now to be that any care that makes treatment more bearable is appropriate and a good thing--it shouldn't be hard to access.

Link to post
Share on other sites

Kwally, UCSD is a great comprehensive cancer center, and coincidentally as I write this, I'm watching a TV commercial for their youth student program. 😀

I had severe radiation-induced esophagitis and needed pain management but couldn't tolerate traditional opiates. I was precribed methadone, which worked great but had to be changed to Fentanyl patch when I started Tagrisso (due to potential cardiac side effects). I've since recovered and am pain- and painkiller-free. 

Like @LexieCat, the palliative care doctor and nurse spent a lot of time talking with me and getting to know me. They would normally come to my house but in the spring they had to switch to video calls because of Covid. They really were both wonderful and focused on my comfort overall. I'm sure UCSD can recommend palliative care for your dad if he needs it but if not, I really liked Elizabeth Palliative Care. 

Link to post
Share on other sites

@Judy M2 @LexieCat
I think having someone guide us through discussions about what he wants to do with his remaining time will be helpful. I'm going to ask our doctor about possibility of doing that. It'll be a good way for the immediate family to all understand how he wants to spend his time. Thanks for bringing that up :) 

Link to post
Share on other sites

Kwally,

I've been following your informative and compelling report on your dad's EGFR to SCLC transformation. Thankfully this is a rare occurrence, but it nevertheless affects some in our community and your documentation is providing much needed insight into the phenomenon.  

Thank you for your contribution and for increasing our knowledge and understanding.

Stay the course.

Tom

Link to post
Share on other sites

Kwally,

I just came across your journal on your dad's condition and treatments.  I don't have the right words to say, but I have so much admiration for you and your efforts to look out for you father.  You've done the best thing an ill person wants/need; "to be treated like themselves and not just a patient".  Thank you for sharing your story with us.  Others will benefit from it in the future.  Please provide any future updates you deem appropriate.

Lou

Link to post
Share on other sites

Hi friends, thank you for sharing your support.

Monday November 30

Today's the day we tell our oncologist how we want to proceed, continued treatment or start hospice. This time I was allowed to accompany my dad. They allow one family member for important decision points during this COVID period. It started out as normal with the oncologist asking dad how he's feeling. The social worker/counselor was also present. Dad reiterated his ongoing muscle aches (sometimes chest, shoulder, back, etc) and his experimentation with using 500mg Tylenol instead of the pain medicine oxycodone. He said he noticed loss of appetite and nausea and thinks it is due to the pain medicine. The doctor said that those symptoms could very well be due to his cancer and that it's ok (and safe) to take the pain medicine especially if it will allow him to spend time with his loved ones. 

 

There wasn't much discussion. Dad said he wants to continue fighting which means using the newly FDA approved chemotherapy. Dad asked if he can use both the  Lurbinectedin (chemo targeting small cell) and Osmeritinib (targets EFGR), and doctor explained there is no safety data on interactions between the two and that, previously, we we tried both chemo and targeted therapy (erlotanib), it didn't have any extra effect. After that, it was an explanation of the results from the FDA trial (1/3 saw tumor reduction, another group saw stabilization, and another group has no effect) and the side effects. She's requesting permission from insurance for this and is hoping to be able to start him on the new chemo later this week or early next week. We will know if it's effective through a scan 6 weeks afterwards. 

I asked her about merit of starting palliative care. She said that she tells all her patients that it's never a bad time to begin talks with them. They are specialists at controlling pain and side effects, and she is receptive to his trying them out. Dad passed on the offer since he thinks it'll be tiring answering another set of questions (these days, somedays he has energy--ie can go for 1 hour walks--and others not so much--maybe can walk for 15 minutes--especially if he didn't sleep well). I intend on asking him again when he is feeling a bit better and thus more receptive.

The social worker then asked us how we're holding up and was concerned that we were planning a trip to China, since might be very exhausting for dad (chemo every 3 weeks, 2 weeks in quarantine upon arrival in china, so only 3-5 days to actually do stuff in china). We needed to go to China for some legal stuff for mom's signature so the house can easily transfer to me should the worst happen. But, we believe not doing that just means the house gets locked up in a court for 2 years before finally passing on to me, so the only consequence is that I can't sell it which I don't plan to. Dad doesn't really do talk therapy, so conversations with the social worker are usually short.

Regarding next steps, I'm going to ask his treatment team if they have any resources on squaring away all the legal stuff so that he can have peace of mind.

 

 

Link to post
Share on other sites

Hi Kwally, 

I read all of your posts with a sense of awe on how well you've advocated for your father throughout this entire process.  While I understand the social worker's concern, as a former social worker myself (in hematology/oncology years ago), in hindsight I've seen patients accomplish doctor defying feats.  The will to live and see through a desired outcome can be astonishing to the medical community.   The oncologist is willing to support this new therapy and being a relatively new treatment, it takes guts to make the go forward call.  The future of the lung cancer community will benefit from your Dad's willingness to fight.   Carry on, 

Michelle 

Link to post
Share on other sites
  • 2 weeks later...

Dec 9 Wednesday

This will be a short update. I thought it was surprising how quickly symptoms increased in the 2 weeks the oncologist gave us to decide on if we want to continue treatment. Because of thanksgiving holidays, all the infusions that would have happened the second half of that week got scheduled to the week after so dad had to wait another week to yesterday to get the new chemo. Towards the end of the wait, his cough came back and he got new aches in his back. For Sunday and Monday, saying more than 2 sentences would trigger some coughs. 

 

However, his cough is gone the day after his new chemo. Fingers crossed that we see more progress. The side effects seem to be a bit less than the previous platinum-based chemo. The day after, he was still able to eat small items (noodles) and walk around a little. He vomitted just once. His aches seem to be less, but not sure if this is due to his stopping oxycodone (once you take it, a normal side effect is you become more sensitive to pain. He stopped it because of stigma regarding opium from the whole china-had-opium-problem-because-UK-opium-wars and he suspects that it worsens his appetite) and his pain tolerance went back to normal. He's on 500mg Tylenol ~3 times a day which is able to keep the aches at 3/10.  

As for starting our business, we are still looking for a local shop to to take over but the past 2 weeks was mostly about keeping him comfortable and trying to get him to eat more. I'm spending ~2-3 hours either trying to learn more about customer needs or reading management/business books. (for the curious, "The making of a manager" by Facebook VP Julie Zhuo and "Eat, Sleep, Innovate" by consulting group Innosight).

For other patients reading this out there, you're in my thoughts. And, thank you everyone for your support!

 

Link to post
Share on other sites
  • 3 weeks later...

12/28 Update:
Dad seems to be doing well on Lurbinectedin! Symptoms are gone and he can do light activity on most days! The other day he was online shopping for multiple hours for a new 4k UHD computer monitor. It arrives tomorrow.

His MRI scans came back before christmas and he has a new 3mm spot.  Doctor hasn't officially told him yet, and I found out through reading the MRI report available in the patient mychart portal. Radiologist's nurse gave dad a call asking if he had any new dizziness and other peculiar moments which my dad did not. I think this means they don't think it's major since dad's next chemo was scheduled tomorrow and they don't want to double up radiation and chemo the same week.

However, dad tested positive for COVID. His symptoms are minor, potentially just cough and loss of appetite. We thought it peculiar that he got a minor cough and nausea the third week after first round of chemo. Usually, third week is smooth sailing. Fingers crossed that COVID is just a minor blip. When we left the house, we were always masked and visited grocery stores that enforced mask policies (Costco, trader joes, some asian superchains). Stay careful people.

 

What this means is that his chemo will be delayed until next week. I'm not sure what it means for radiation yet. I'm messaging the doctor.

 

For others in similar place, This Lancet study has more info on COVID + cancer. In short, mortality rate of 4% for stable/remission. as high as 11%(?) or more for progressing disease and other factors.
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)31187-9/fulltext 

"Clinical impact of COVID-19 on patients with cancer (CCC19): a cohort study"

P.S.

I also want to share a slightly funny story. Basically, brightly color label the medicines that prohibit driving so you or the patient don't forget. Dad took ativan, which has synergy with his regular medicine to form a super anti-nausea combo. However, you're not supposed to drive on ativan. Dad forgot and he nearly drove onto the curb turning in our cul de sac and almost ignored a red light. Thankfully, nothing bad happened. I always accompany him when he drives, just in case.

Link to post
Share on other sites

Jan 7, 2021

Wow, what a day in our capital yesterday. Whatever our political affiliation, I think we can all agree that loss of life is bad and that we all want a more prosperous and just America. 

In other news, dad is 5 days past the threshold where there is chance of suddenly crashing when all symptoms had been mild prior. His symptoms were just nausea and loss of appetite. He's recovered some of his appetite, and the doctor has scheduled his next chemo on Jan 15, so a delay of 2 weeks due to COVID. Hoping that isn't a major impact. . . His cough is now back and same with his back pains. 

Meanwhile, we're asking my aunt in China to get an oncologist opinion on Anlotinib which is approved in China in 2018 but hasn't been submitted for US approval. Our oncologist here is hesitant towards unapproved drugs. However, the remaining medicines all have high toxicities and don't do so well. Anlotinib, according to the Phase 2 and Phase 3 results in China seem to do a bit better (5m vs 3m progression free survival as salvage therapy) and have managable side effects. When it's time to have the conversation, we'll ask our oncologist for her opinion on if we should travel to China as a back-up for when current line stops responding (fingers crossed for current line to work indefinitely). If there are medical reasons, then they would be reasons not to. But, if the reason is purely because the company for some reason isn't requesting FDA approval, I am leaning strongly to recommend going to China for treatment. 

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...