Treatment delay and other questions

[JHP]

Hello,

I'm JH, adult child of a patient. I still can't really believe that this is happening. My dad (60s) had been in fine health before these two months. The only problem he had was HBP which he took medication for, an occasional dry cough that came and went, and peripheral neuropathy in a particular leg for over a decade (was scanned before but they couldn't find the issue). He smoked for about fifteen years then quit for about the last fifteen. No breathing problems whatsoever, not even right now.

He likes to nod off while watching tv, so we thought he had just injured his neck somehow about 2 months ago. He could walk but because he couldn't turn his neck, we got him a cane for support. The neck didn't get better, and I urged him to go see a doctor a week into this, but he didn't want to. His afflicted leg got worse - he couldn't put weight on it - and his neck didn't get better. He actually had a yearly checkup about three weeks ago where he did bloodwork. They assured him he was fine, except his blood sugar was slightly high and should be controlled through diet.

It wasn't until he started needing to take pain meds for his neck and leg at night that he went to the hospital where we got the news that according to their experience, this is SCLC extensive or rarely it could be tuberculosis + other things. They found lesions on his kidney, pancreas, brain, spleen, leg, and neck. His neck problem turned out to be a fracture from a mass growing there. They said where his leg met the pelvis was brittle maybe as a result of the lesion or not. He did have low iron for a while in the past and didn't keep to the supplements. According to what I understand, they've done all the scans CT, PET, MRI, but they just haven't done a biopsy.

It's been a week now, and he was just transferred to a different hospital out of state since they needed a specialist for his neck. I've been spending every waking moment besides work trying to research. I have so many questions, but I don't know where to ask.

I'm still very shocked after looking at the 3% rate to say the least. I thought I would finish up my education, get a better job, buy him a car, and generally do good by them and he would have many, many years to enjoy this. I feel so sorry that I didn't pick the highest paying career, that I wasn't able to provide materially for him in the way that other better children of immigrants might have. I'm sorry I ever fought with him.

[JHP]

Does anyone have any experience with bone metastes? Will doing bone surgery first and then radiation later cause cells to migrate?

Also, I really don't know how to read the US News hospital rankings. The one he is at currently has is well-rated in equipment for radiation and such. But they are unranked in lung cancer. Will moving to a ranked hospital give him a better chance?

[Tom Galli]

JHP,

Oh my! There is so much to unpack about your dad's many symptoms.

Your first question as I understand it is about priority of treatment. Should a lung biopsy come before bone mets in the neck and leg? I side with addressing the bone mets first. Why? Precision radiation used to treat bone mets accomplishes two goals. It eliminates your dad's considerable pain and it reduces tumor burden. Precision radiation is very effective and will quickly resolve your dad's pain and improve his quality of life. Here is information about radiation used to treat lung cancer.

A leg biopsy result should not take 2 weeks to resolve. A pathologist will mount a tissue slide to a microscope and visually identify the type of cancer your father has. This result should be known in hours. A follow on laboratory biopsy might take 2 weeks to process but the pathologist examination will confirm a cancer diagnosis. Here is information on cancer biopsies. The follow-on biopsy is used to screen for Targeted Therapy or Immunotherapy treatment. The former treats a small percentage of adenocarcinoma non small cell lung cancer. The latter treats all types of lung cancer including small cell. Here is information on types of lung cancer. You should indeed press your medical team to perform a follow-on laboratory biopsy. Targeted Therapy and Immunotherapy are very effective systemic treatment methods. But conventional chemotherapy can be very effective also. Here is information on chemotherapy you might find useful.

Where should your dad have systemic treatment? My suggestion is to get a comprehensive diagnosis and maybe a treatment plan at well know treatment hospital but get systemic treatment (chemo including Targeted Therapy and Immunotherapy) from a treatment center close to home. Why? Systemic therapy is bound by national standards of care in the United States. That means everyone presenting with a specific type and stage of lung cancer undergoes the same treatment systemic therapies. So I'd get chemo (Targeted Therapy or Immunotherapy) close to home.

Clinical trials can be an important treatment resource. I wouldn't delay first line systemic treatment while you search for clinical trials and here is information that explains clinical trials.

Stay the course.

Tom

[JHP]

Thank you Tom, I will read more about all the resources you posted. Thank you for responding. I have read over a lot of your past replies and everyone else's this past week, and I hope that my dad can also beat the odds.

[JHP]

3 hours ago, Tom Galli said:

Here is information on cancer biopsies. The follow-on biopsy is used to screen for Targeted Therapy or Immunotherapy treatment. The former treats a small percentage of adenocarcinoma non small cell lung cancer. The latter treats all types of lung cancer including small cell. Here is information on types of lung cancer. You should indeed press your medical team to perform a follow-on laboratory biopsy. Targeted Therapy and Immunotherapy are very effective systemic treatment methods. But conventional chemotherapy can be very effective also. Here is information on chemotherapy you might find useful.

 

Where should your dad have systemic treatment? My suggestion is to get a comprehensive diagnosis and maybe a treatment plan at well know treatment hospital but get systemic treatment (chemo including Targeted Therapy and Immunotherapy) from a treatment center close to home. Why? Systemic therapy is bound by national standards of care in the United States. That means everyone presenting with a specific type and stage of lung cancer undergoes the same treatment systemic therapies. So I'd get chemo (Targeted Therapy or Immunotherapy) close to home.

Clinical trials can be an important treatment resource. I wouldn't delay first line systemic treatment while you search for clinical trials and here is information that explains clinical trials.

 

Hi Tom,

I read through the info. It says that waiting for the biomarker tests to come out before proceeding with treatment would be a good idea. From other sources, it seems that SCLC doesn't really have many biomarkers to work with compared to NSCLC, but it does initally respond very well and there is rapid improvement with conventional chemo. The danger is recurrence. Is there a consensus on what order of treatments show improved long-term rates? I read a paper saying that radiation and immunotherapy showed improved rates which they hypothesized was because there were small bits of dead cancer material (same as the cancer vaccine theory).

I think someone here posted The Median Isn't the Message by Stephen J Gould who said the right tail of these graphs could extend very long. Would you happen to know where I could locate it for lung?

Also, have you heard about the Mt. Sinai personalized cancer vaccine clinical trials? They're in Phase 1 and they mentioned lung as one of the cancers they treated. It sounds like they only offered it to people with a chance of recurrence. Besides this particular one, there seem to be other experimental therapies holding tiny trials. What happens when you are not in the state/hospital of these places holding the trials?

[Tom Galli]

JHP,

The most common conventional pairing of chemotherapy for SCLC is Cisplatin and Etoposide. For those with extensive stage disease (your father) immunotherapy may be added. The question of delaying chemo or combination chemo (Cisplatin & Etoposide with Immunotherapy) is best answered by your father's medical oncologist.

You are right to characterize the danger of recurrence for SCLC. It is higher than all forms of NSCLC because small cell mutates very quickly. I have a link to Gould's essay The Median Isn't The Message in the last paragraph of this blog, here.

I don't have insight into clinical trials. I don't believe one's home state or treatment location factor into eligibility to participate.  Moreover, I believe those accepted into trials receive medication and treatment without cost. Your dads treatment team ought to be able to advise you on your father's suitability for trial participation.

Stay the course.

Tom

[JHP]

They have informed us that after discussion, the neck bone fracture doesn't necessitate surgery at this time (after telling him to not eat and be ready for several days). That's good news. They're going to radiate his leg at the end of this week, then his neck later. So it will be a bit over two weeks before any type of treatment happens. The leg bone biopsy is pending. No discussion of lung biopsy scheduling at all. I'm going to contact the hospital and ask about it if nothing happens soon. He's really reluctant for me to speak to anyone there, says that the nurses don't know anything, the residents just take their orders from the higher ups so they don't know either, and nothing is certain yet since the leg biopsy result hasn't come out. He says they probably just want to deal with his bone issues first so he can leave the hospital and come to treatments without taking up a bed.

I've had two clear-minded days now. I'm so thankful there are people to talk to about this. The professionals seem to be moving like molasses, while I'm the only one in emergency mode.