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Need some positivity...


lookingforbetterdays

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My father (61) was recently diagnosed with NSCLC Adenocarcinoma.. about 2 weeks ago he complained of headache and pain to his hip. He has Ulcerative Colitis and takes Remicade for it, so usually any discomfort is blamed on the Remicade he takes (as its a strong drug). He set up a doctors appointment that week and was told that his condition was probably due to a slipped disc in his back, I didn't buy.. he appeared to act as if he was drunk (wouldn't walk straight), took a second or so to respond and just seemed out of it. We begged him to go to the hospital but he refused for a couple of days until he couldn't put up with the pain any more. After a few test,  my dad was placed in SICU at the hospital, the doctor comes in and tells us that he had a massive hemorrhage rupture in his brain and the only reason he wasn't in a coma was because the blood bled into a part of the brain where it was able to hold blood(something like this), that's also when they told us they found 30 nodules in the brain area and 2 nodules in the lungs. They took a biopsy which we are still waiting full results on but they did confirm it's NSCLC Adenocarcinoma. It's been a very mentally exhausting and stressful time.. I hate to express my issues because I know many are going through this and to an extent it makes me feel selfish. I been doing a lot of googling etc and for every 1 good story there are 100s of bad ones. They discharged my dad a week ago today, he doesn't have a follow up with oncology until Aug 10th, the wait is killing me. My dad is fine as of now, he walks and talks without issue, drives and seems pretty normal. He says he's going to fight this and is optimistic that he can live a longer life. The way he looks and sounds right now gets my hopes up at times because he looks fine, I leave his house in good spirits only to feel hopeless and keep myself up all night re-running my life with him over and over and praying and praying because a side of me is telling me there isn't much time left. They found the 30 nodules on/in his brain and then 2 nodules in one of his lungs, aside from that there is no evidence of cancer any where else (he also had a colonoscopy and endoscopy and nothing was found). What scares me is that he will have limited options due to his UC/remicade he takes for it.

 

Again, sorry to ramble like I'm the only one going through this, I always prayed for those needing comfort/healing prior to this and still pray for everyone. I'm just shocked, my dad prior to this was physically fit, strong and never smoked a cigarette in his life, the doctor said all his organs aside from his brain/lung look remarkable (in doctors words), I'm hoping that helps him in his battle he is looking to take on. My biggest fear is that they offer no treatment. Also, from reading on here is seems many people have some kind of treatment while at hospital or right after discharge, its still about 2 weeks before my dad has his visit with oncologist and not sure why he didn't receive some kind treatment?

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Hi there, and welcome.

Sorry about your dad's diagnosis. Lots of people have brain mets, though, and the fact that he has only two lung nodules and no evidence of other mets are positives. Brain mets are often very treatable with radiation. Do you know the size/location of the nodules in his lungs? Chances are there will be more testing before it's appropriate to start a treatment plan. Has he had a PET-CT? You also want to be sure samples of his tumor are sent out for molecular testing. That will show whether he's likely to respond to some form of targeted treatment (usually a pill) rather than chemo. Immunotherapy is also often highly effective. 

I understand being scared, but lung cancer isn't what it used to be. There are quite a few long-term survivors here. 

And two weeks before starting treatment is absolutely normal. Many people require several weeks of testing before an appropriate treatment can be settled on. It's frustrating, for sure, but very important that the treatment be appropriate for his exact type of cancer.

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Hey LexieCat,

 

-I don't know the size/location of the nodules in the lung, I recall them saying one was near the top. They have him restricted to drinking 1.5 liters of water a day (no more than that) as they said one of the tumors is near an artery and something about drinking too much fluid may cause some kind of pressure on it (this info was explained on day I wasn't there so not too clear on this)

-They did a ct, not sure if it was a pet ct or not, they also did an mri.

- from my understanding, the biopsy is still being further tested and only the NSCLC Adenocarcinoma has been confirmed. Not sure what the "further testing" is but I'll call tomorrow and insist on bio marker if not already being done.

Immunotherapy, with my dad taking Remicade for his UC (remicade suppresses the immune system) would this not be an option for him?

 

Thank you so much for your response

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As far as I know, taking medication that suppresses the immune system doesn't necessarily preclude immunotherapy. 

CTs are standard lung imaging tests; PET CTs are much more specific (and expensive), but helpful for staging and identifying any other areas of metastasis--not all of which will show up on a regular CT scan. 

It's great that your dad is feeling better right now and has a positive attitude. That will help him throughout his course of treatment, whatever that may be.

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Looking,

To speed up the treatment process, you might want to have your dad consult with a radiation oncologist while waiting for the tumor marker laboratory test. Most brain mets are successfully treated with radiation, and a radiation oncologist does not need to wait for tumor marker results. The radiation oncologist will coordinate treatment with his medical oncologist.

Stay the course.

Tom

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I'm so sorry about your dad's diagnosis.  The further testing they are waiting on is probably biomarker testing results. https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/biomarker-testing

Just wanted to share a little more about Adenocarcinoma with you: https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/lung-adenocarcinoma

We also host weekly and monthly virtual meetups for caregivers/people who have a loved one with lung cancer if talking with other caregivers might be helpful. https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and

The waiting is so, so hard.  Thinking of you and your dad.

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Thanks everyone for your responses... I got a call from his oncologist today who asked if my dad has had any kind of radiation treatment, she called at 8pm so I know this is urgent. I said no as no one had even mentioned radiation treatments for him and the only appointment we had set up for him was the oncology appointment thats on August 10th. She tells me he needs radiation treatment asap, that this should have been done right out of the hospital as something very dangerous can happen. Its friday, every radiation cancer center is closed for the weekend and who knows how soon they will be able to treat him as I still have to call these places.. now I'm on edge 

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take a deep breath , in and out... start fresh monday am with a renewed vigor !! Let them know the severity of situation and also talk to the person you talked to. she might be able to help expedite getting him seen!! 

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Hey Randy, that's the plan...start fresh Monday. The person who called me is my dad's oncologist who he has an appointment with on Aug 10th, I guess she noticed my dad hadn't been scheduled for any kind of radiation and called to tell me to get it done asap, like start this Monday. I'm going to start making calls but it seems difficult to believe someone will start treatment this Monday as the specialist will still have to review all his info... either way I'm going to make the effort. 

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I did, I asked the oncologist if she recommended I take him to ER to be monitored until radiation can be done, she said he wouldn't be admitted unless he was having complications. So basically said to keep a really close eye on him and if we notice any neurological symptoms to take him to ER

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Update.. Managed to attend an appointment with a radiation oncologist today. He did say the mri showed 30 spots, all small with exception of 1 that shows to be 11mm in size (we had been told it was 30mm in size so I'm happy to find out its not). Radiation oncologist seemed optimistic that wbrt would work to contain and shrink the tumors.. if any decide they are going to grow the next step will be gamma or cyber knife. Thanks everyone for your support and input, it means so much to my family and I as we prepare for this battle. Taking it day by day and thanking god for another day with my old man

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WHOA NELLIE…. WBRT is something that should definitely be a recommendation that requires a second and maybe even a third opinion because it is very rarely done today especially if the biomarker testing is not back yet. 
A friend of mine had WBRT, a few weeks later found he had the EGFR gene mutation and the targeted therapy (pills) would have resolved without any radiation.  Some of today’s cancer therapies can penetrate the brain so radiation is not always a first line of treatment.  
 

Liquid biopsies are much faster than tissue biopsies, 5-7 days so that’s also worth exploring.  
 

I understand you want the treatment plan to get started quickly and we’ve all been there but taking the time to ensure the diagnosis is correct is the best bet going forward.  
 

Keep us posted!  Hang in there…

Michelle

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Hey Rower, 

So my dad's oncologist said he needed urgent radiation treatment due to the number of mets found and also due to possible risk of another hemorrhage. If he does do wbrt, would that not allow him to take targeted therapy if it comes back with a match? 

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Not quite, targeted therapy is still an option however WBRT limits future radiotherapy since the brain can not typically be re-radiated.  There can be severe memory impairment, and other complications as a result of WBRT. In addition there are medications that need to be taken for six months following WBRT. 
Second opinions at a major academic center in emergency situations can be done quickly.  I just arranged a second opinion in two days for one of our close family friends.  They can also be done virtually.  
 

I spent the weekend attending the third annual ALK Positive Summit where radonc experts indicated how rare WBRT has become and emphasized the need for caution.  
 

Targeted therapies work very quickly, one of our group members went from the wheelchair to walking in two days last week.  
 

The only cancer WBRT becomes standard of care is small cell.  

is your Dad being treated at a National Cancer Institute? 

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It's not academic, all advise and direction has been provided by the oncology team at the hospital he was diagnosed at(regarded as one of the best hospitals in Texas). We did do our research on the oncologist who have been working with us and they have extensive backgrounds with good feedback.  I have no problem seeking a 2nd opinion, but time does scare me. Today my dad reported everything seems to taste nasty(new symptom) he still seems a little wobbly also. I did ask the radiation oncologist if gamma/cyber knife are still an option after wbrt, he said that the plan is to contain and shrink existing tumors, then use gamma/cyber to directly handle any other tumors if they continue to grow (assuming a small number grow if any).

My dads info was sent to UT southwest oncology (academic) and they were going to do wbrt also, it was in the works but then later found out that they were not in network. I can follow up and get details on what their plan was.

 

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I totally understand the urgency of this situation.  One of the best cancer facilities in the Country is MD Anderson.  It’s worth the phone call tomorrow morning.  I would also consider calling the Lungevity Help Line to see if they can facilitate a rapid second opinion @Tom Galli any other ideas from your neck of the woods? 

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looking,

I've been following the exchange between you and Michelle. Michelle succinctly and correctly establishes the risk of WBRT. And for certain types of adenocarcinoma, targeted therapy can control (eliminate) brain mets. But, you report troubling motor control symptoms for your dad complicated by one or perhaps several brain hemorrhages. First, understand none of us are physicians, and we base our response on the experience of our treatments and outcomes. Second, we don't know the location of your dad's brain mets and their proximity to hemorrhage sites and or areas of the brain that control critical functions. I presume your dad's radiation oncologist has studied the scans and is aware of met location, and impact on future hemorrhage, neurologic and motor functions. Unfortunately, with lung cancer, there are few clear choices and there are always downsides of treatment.

Neurologic problems are unfortunately common in those who are treated by WBRT. But, I know perhaps a dozen who've had this treatment; four of whom are still alive and report very slight neurologic symptoms. In your dad's case, perhaps the choices narrow between life with neurologic impairment or death. That would be the question I'd ask of my radiation oncologist if I was in your dad's circumstance. My follow-up questions would be: will WBRT give me a chance of extended life that I can actually enjoy? What might my prognosis be if I delay WBRT until biomarker results are in? Can I afford to wait?

Your dad has a hard row to hoe and WBRT is a double edge sword. I hope and pray for the best outcome.

Stay the course.

Tom

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Hey everyone,

 

So today was a long day, we did seek a 2nd opinion from where he was initially going to be treated (utsw) to see what plan was going to be, same plan wbrt. They stated because my dad was at risk of hemorrhage due to what initially brought him in to er and number spots found. My sister who is an ER pediatrician (and knows a hell of a lot more than me) was in these conversations and it was decided to go with wbrt to avoid something happening, they also stated even if he did match biomarker there was no guarantee that it would work and my dad would be in serious risk while waiting to find out. What landed him in er was a hemorrhage that bled a good amount, we felt it would be risky to wait. Nothing about this is easy at all, I appreciate everyone's input and suggestions as we go a long this journey. My father is strong, the day before he landed in ER he was competing with my 13 year old on who could do more push-ups, my son did 30, my dad did 51 on an incline (head down, which we believe led to the hemorrhage rupture)... we are hoping he has little side effects to the radiation, that radiation works and that we can manage his LC long term. We are still waiting on biomarker/genetics results.

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You must be totally exhausted and I hope you can be at peace knowing you’re doing everything possible to take care of your father.   It’s incredibly helpful to have a physician in the family to navigate these very difficult decisions.  Getting a second opinion was very prudent and you may want to consider another one when the biomarker testing comes in. 
 

With your Dad in good physical shape at the time of diagnosis, it’s a good indicator that the treatment plan will be better tolerated.  
 

I hope you can get some rest, this is a not s sprint but a marathon.  Keep us posted as best you can…We’re here for you. 

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Update

 

Finally met with my dad's cancer team and his oncologist (well he did, I wasn't allowed in due to covid but my sister was on speaker phone). EGFR mutation found, he is set to start Tagrisso 5 days post radiation. We asked again if wbrt could have been avoided, the oncologist still believes it was/is still necessary due to the amount of spots on the scan (30) and the hemorrhage which led him to the hospital. 

My father seems fine, I can tell he's getting a little less patient but he's been getting terrible sleep due to steroids. He's also been eating a lot, like junk food which is odd to see because he always ate clean. He's having a hard time adjusting to this new way of life, he loves to work and having to stay home and be limited to what he can and can't do is taking a mental toll on him. I tell him to be patient and give the medication some time to take effect before he tries to resume normal life (after next follow up), he agrees but I can tell he's having a difficult time with this. 

I know Tagrisso won't work forever... but for now I'm going to take a mental break for a little bit and focus on the fact that a mutation was found and he is going on targeted therapy.  I have many things to be thankful for and I'm going to concentrate on those things and encourage my family and father on the positives. My dad is going to join us in dropping off my daughter on her first day of school (kinder) and I'm really excited about that.

Again, the responses and support here have been amazing, thank you all for taking the time to help me through this. Im going to try hard to not think about cancer for the next week or so and I'm sure I'll be back on here with updates soon. Fight strong.

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Your dad is in luck with Tagrisso, and I'm sure his doctor told you that. Be prepared for some initial side effects that everyone seems to go through, like fatigue, diarrhea and skin rash. These are manageable for most people but be sure to report side effects to his oncologist. A palliative care doctor can also help with quality of life issues like sleep and pain. 

For you, I recommend the private LUNGevity Facebook group Tagrisso (osimertinib) Patients & Caregivers Group, where newbies and veterans can get support. Try to keep an open mind about Tagrisso and take things one day at a time. Everyone is different and there are people on it for years. I've been on it since March 2020 after chemo and radiation and am NED since April 2021.

Best wishes to your dad. 

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Hey Judy, I'll check out that facebook group, I'm happy about the Tagrisso and am hopeful that it will work and hopefully for a long time. I hope it does last many years for both you and my dad. 

We did ask his oncologist about his sleep, they are about to reduce the steroid dosage he is on and oncologist suggested we wait to see if that helps with his sleep as they rather not give him prescriptions. They think once they they reduce steroids and he starts Tagrisso that he will get more sleep due to fatigue. We will see, one day at a time.

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I'm glad you finally got the biomarker testing results and that your dad has a biomarker with treatment options!  Here is the link to the EGFR Facebook group if you would like to join: https://www.facebook.com/groups/EGFRlung

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