GaryG

@huj123 The side effects from the radiation are gone now. It took several weeks on steroids. I also wish there was some way other than a scan to see whether or not the therapy is working.
Patience has never been my strong suit. I am trying to work on that. 
Keep us posted!

@huj123
I was 61 when diagnosed with Stage IV nsclc this past June. I had started going to physical therapy for shoulder pain. I had had an xray and MRI of my shoulder and neck and was told it was my neck causing the pain. In the middle of ame back inconclusive. The second was EBUS, which is a broncoscopy guided by ultrasound. We knew it was adenocarcinoma after that. I had a PET scan and that is when it was determined to be in my shoulder blade as well.
While we waited for the biomarker results, I had 10 radiation treatments to the main lung tumor and my shoulder. It helped immensely with my shoulder pain. And my lung as well. But I did end up with difficulty swallowing and radiation pneumonitis (kind of like pneumonia but caused by the radiation). Those side effects depend on the location of the tumor in your lung. And minecwas in the right lower lobe. 
It totally caught us off guard too. 
Will be thinking of you and your mom.
Jenny

Hello huj123:  I had a bronchoscopy  first to extract tissue and liquid on the inside. However my oncologist ordered a biopsy  as well. I would not worry about CT-guided needle biopsy because they can zero in on a very small area.
Make sure they take  enough tissue to perform more than one bio-marker test. Some members here had false readings on the first one and the second test found mutation. Best of luck!

Hi huj123: Thank you for joining us and sorry for your Mom's diagnoses.  Unfortunately many of us were young,  healthy and active prior to being diagnosed. Lung cancer does not discriminate.  While you were told she has Pancoast tumor, I suggest that you wait for the biopsy results. Make sure they also do the biomarker tests to see if a mutation may be present.
The answer to your second question is yes when cancer spreads out of the lung (in this case) it is called metastatic cancer and usually labeled as stage 4. However you still need to wait for the results of the biopsy to make sure. I wish you the best.

@GaryGThat's really good to know! The doctors mentioned they will be testing for biomarkers, and their goal is to extract a very large sample of the tissue. Hoping we don't have to do this a second time

@LexieCat: that makes sense! That context really helps out. Agree with both you and @GaryG - at this point diagnosis is most important - shouldn't be concerned about the type of biopsy. I have relayed this to my mom.

@JennedyThank you for sharing your story. I honestly wish there were some kind of diagnostic blood test that would be a part of an annual physical that would show whether the lungs are doing ok. How are you doing now? Have your post radiation symptoms improved?

Just as an update for everyone: because of COVID, the doctors are requiring that patients take a COVID test 4 days prior to the scheduled biopsy appointment (really frustrated this wasn't communicated until today!). Unfortunately, due to availability of the doctors, this means the biopsy can't be performed until next Wednesday, with a PET scan to follow if biopsy returns positive for cancer...I guess I just have to try to be patient over the next 2 weeks....



 

Over the course of diagnosing/treating lung cancer, most of us have literally dozens and dozens of CT scans. The risk of radiation from these is far less than the risk from the cancer if it's not properly assessed and treated. I wouldn't worry at all about that. The type of biopsy most often depends on the size/location of the tumor and any lymph nodes or other sites they want to sample. When I was first diagnosed back in 2017 with my Stage Ib cancer, the nodule was too small to even biopsy. My upper lobe was removed based on its suspicious appearance and sure enough, it turned out to be adenocarcinoma. 
This time, I had a bronchoscopy to sample a much larger tumor and lymph nodes. It all depends on individual characteristics.

Hello huj123.    Yes I am one of those Pancoast tumor survivors !   
I had shoulder pain that went down my arm and chest pain .  I had just moved back to 
Minnesota so I thought it was due to lifting and unpacking everything. I called the Dr for an  
appointment and they said " You are 50 , it could be a heart attack come to ER now !
Normal EKG and blood work but luckily an x  ray done showed a tumor in my upper lobe pressing on
nerves going down my arm and on my chest wall.  If you want my whole story go below to my story. It is posted.
Please keep us posted on how she is doing and the treatment plan . 
Donna G 

Hi huj123: Thank you for joining us and sorry for your Mom's diagnoses.  Unfortunately many of us were young,  healthy and active prior to being diagnosed. Lung cancer does not discriminate.  While you were told she has Pancoast tumor, I suggest that you wait for the biopsy results. Make sure they also do the biomarker tests to see if a mutation may be present.
The answer to your second question is yes when cancer spreads out of the lung (in this case) it is called metastatic cancer and usually labeled as stage 4. However you still need to wait for the results of the biopsy to make sure. I wish you the best.

Mike,
Welcome here!
Great news about your reduction in size and SUV for your tumor. Hopefully, your treatment dose indeed kill all your cancer.
Here is some information on about SUV in PET scans.
Stay the course.
Tom

The facts are out there. 36% of those receiving Durvalumab had to suspend treatment due to severe "side effects." Some studies put the number upwards of 42%. Pallative care, aka pain killers, does not appeal to me. Occasional use may be OK but the need for ongoing "pallitive care" is self-defeating, in my opinion. If I am one who cannot tolerate the drug, so be it. I'll wait to speak to my chemo doctor.

Steve, have you asked to be connected with someone in Palliative Care? Their job is to help sort out things like side effects. There might be strategies that could address the worst of the effects you're experiencing. 
And as far as whether misery is "worth it" depends, I suppose, on how long the misery continues vs. the possible benefit (and also what other options might be available).
I'm not for a second suggesting there doesn't come, for some people, a point where it makes no sense to continue treatment. I think you might be a ways off from that point right now, but I totally get the feeling--I won't say the thought didn't cross my mind with the back pain that left me unable to sleep. Still, the pain med prescribed to deal with it helped tremendously. And if this comes on for a few days after each Zometa infusion, I could probably take it, as long as the pain meds work.
Hoping you will try to hang in there and bring in some additional professionals to help you get through this.

RonH,
That't what I'm thinking now. A further break to gain strength before I decide whether to forge ahead. The big question, is it really worth it if I am to be so miserable?

Sounds pretty awful, Steve--I hope Ron's right and it might be a temporary reaction. I'm still trying to figure out the genesis of my severe lower back pain that came on last week--apparently that can be a side effect of the Zometa I'm taking for bones (or I suppose could be a sign of a spinal met). If it's the Zometa, I dearly hope it's a temporary effect because it was unbearable until I was prescribed oxycodone (which I needed just to get through my CT scans on Tuesday).

SteveD,
It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

Had my first Imfinzi treatment on Dec 3rd. My reactions were at least ten times worse than chemo (Carboplatin and Taxol)
Fever, pounding headache, sinus neck and eye pain, joint pain, fatigue. I must reassess whether I can tolerate this for a year. One week later I am barely getting back to "normal" . While I have been hopeful I might regain my energy after chemo ended, unless there is a way to moderate this immunotherapy I think I'm going to have to stop it.

SteveD 
sorry to hear about your bad reactions... I suggest you try CBD oil in a tincture, it's good for a lot of your problems. Do a search about it and talk to your doctors 1st. Most people on this Forum that had to stop Durva because of side effect did start again after a pause. Do you know your PDL-1?
good luck on your journey
 

Hi, Quing,
It's great to jump in and offer support to others. I'd suggest, though, that you focus your responses on more recent posts--this one is from 2003, and I don't believe the guest poster ever posted again. We get new people in all the time, though, and you might want to especially check out the caregivers' forum, located here: https://forums.lungevity.org/forum/9-caregiver-resource-center/.
It takes a bit of poking around to get familiar with all the info and resources here on the Lungevity forums, but there's a wealth of knowledge, experience, and support to be had--don't hesitate to ask us anything! Most of the time, one or more of us has been through something similar to just about every situation.

Taking the family out to dinner to celebrate Tom. 

Michelle,
I love Lands End, they are next on my list for their beloved turtlenecks. I gained so much weight XS just does not work for me anymore, I think I need a M. I have since learned to order both a M and a L and return the one that doesn't fit. Getting smart in my old age, well retail savvy anyway 🤣
Have a great day
Roseann

Hi Barb,
Thank you LexiCat and Barb, that helps a LOT, however, I am on my way still to some much needed reatil therapy, the waiting for the results has done fried my brain, So off I go 😃
 

PET SCAN-impression - no hyper metabolic activity in neck , chest, abdomen or pelvis nor skeletal. What does this note mean-The region of pulmonary consolidation upper right lobe minimal SUV of 2.0. This is the location of the original tumor. So I guess it’s not dead? It’s confusing that it says both. It also doesn’t give a measurement 

Speaking of  CT scan ,it is common to have different pictures when CT scans are taken on 2 different machines. The reason being there is no one standard for calibration of these machines among manufacturers. Not to get too deep in the boring world of photons , beams  and wavelengths, standard calibration insures that  all machines operate  under the same conditions and provide the same result.  Our health care system is great but  most of the time and due to competition, the left hand does not know what the right hand is doing.

Speaking of  CT scan ,it is common to have different pictures when CT scans are taken on 2 different machines. The reason being there is no one standard for calibration of these machines among manufacturers. Not to get too deep in the boring world of photons , beams  and wavelengths, standard calibration insures that  all machines operate  under the same conditions and provide the same result.  Our health care system is great but  most of the time and due to competition, the left hand does not know what the right hand is doing.

Speaking of  CT scan ,it is common to have different pictures when CT scans are taken on 2 different machines. The reason being there is no one standard for calibration of these machines among manufacturers. Not to get too deep in the boring world of photons , beams  and wavelengths, standard calibration insures that  all machines operate  under the same conditions and provide the same result.  Our health care system is great but  most of the time and due to competition, the left hand does not know what the right hand is doing.

Speaking of  CT scan ,it is common to have different pictures when CT scans are taken on 2 different machines. The reason being there is no one standard for calibration of these machines among manufacturers. Not to get too deep in the boring world of photons , beams  and wavelengths, standard calibration insures that  all machines operate  under the same conditions and provide the same result.  Our health care system is great but  most of the time and due to competition, the left hand does not know what the right hand is doing.