Triplet- First scan

[GaryG]

 

74 year old male, Diagnosed early June with NSCLC Adeno Stage 3 B, negative RET, ROS 1, BRAF, EGFR, ALK, PD-L1 0%. Review of imaging (PET and MRI) showed extensive tumor in the right lung, supraclavicular nodes on the right. This is worrisome for Stage IIIB disease. However, it is too extensive for concurrent chemoradiotherapy. Malignant neoplasm of overlapping sites of right lung. 

I saw my oncologist before the radiologist detailed report was ready. He was very upbeat after reviewing the CT scans. His  report reads: Dramatic improvement in bulky right lung tumor. Whether in the past the cancer was mass-like, spaces are opening at a good clip. He is now hopeful, providing we see more improvement that radiology will be an option down the road. He was even more optimistic verbally..

And then later on the radiologist report provided more unwanted details like to remind me to stay grounded when it comes to lung cancer. It acknowledges that the consolidation in the right upper and lower lobes has improved since the prior examination. No evidence of disease identified in the abdomen at the present time. (I would have been happier if “ at the present time} was omitted. It also specifies that several new clustered sub centimetre nodular densities noted in the right middle lobe as well as the presence of 3.3 cm solid and  cystic appearing thyroid nodules. 

I am surprised why my oncologist never  mentioned the nodules. Is it because he did not see them or because they did not concern him. Did he mention radiology with that in mind or was it consequentia? Those are the questions I need answered.

An other bump on the road. I have to stop taking my appetite medication and start on blood thinners because I developed some small blood clots. Too bad because I started eating regular food and gaining weight.

All and all I am very happy, optimistic and grateful the regimen is working while I realize the possibility of bumps (nodules) on the road, but if they can be dealt with, they should be manageable.

 

[Rower Michelle]

Hi Gary, 

That sounds like reasonably good progress out of the gate for the first scan to me.  The radiologists and the oncologists very often have a different perspective in how they interpret the scans.   I've always thought that was pretty weird, but at least I don't get freaked out by the reports anymore.  

Nodules- my educated guess is the oncologist isn't worried about them.  Upon my first CT scan at diagnosis, there was a "tiny" nodule in my left lung, but the left lung was otherwise clear.  My right lung was a total mess.   That nodule has been watched now for two years, and on the last scan was determined to be a non cancerous granuloma.   I have a nodule on my thyroid too, which also worried me, the onc just shrugged and said it was normal.  

On stopping the appetite medication, you might want to ask for a consultation with the Palliative Care Team to see if they can come up with a work around for you.  After attending the Lungevity conference this weekend, I wonder if medical marijuana, administered by a board certified physician could be helpful.   Here is a resource for you to explore we learned about: 

https://www.cannabisclinicians.org

Initially I was skeptical about medical marijuana, but after the conference it is something I would definitely consider for me as a potentially viable option.   My point is to educate your team about what it is you need.  Speak up.  Let them figure out how to solve the problem.   Maintaining weight is so important during treatment, you can do this!

Michelle 

 

[Tom Galli]

Gary,

Just to reinforce Michelle's point, maintaining weight during treatment is vital!

Red & white blood cells and all kinds of other cells are getting killed off each time you are treated. The body needs energy to make new ones and the energy comes from food. Lung cancer patients don't have an eating disorder; we have an "eating inorder." So by any means necessary, find a strategy that invigorates your appetite.

Stay the course.

Tom

[GaryG]

Michelle Your  contribution and knowledge are very helpful to me. You are very good at answering questions. I am indeed very happy with the results. I am  surprised by the difference of interpretation between the oncologist and radiologist. I intend to side with the oncologist because they radiate hope. When I pressed my oncologist to say what percent improvement and without hesitation he said better than 50%. I am almost hesitant to repeat it because I only had two treatments. Of course the mass in my lung was big so that stands the reason. I hope one day they start measuring my tumors in cm and mm. 

BTW marijuana sounds good and thanks for the link.

Tom:  I am always grateful when you share your wisdom. I am adamant that keeping my appetite and maintaining my weigh is priority one. What makes things hard for me is that I hate sugar and sweets and if you can't eat regular food calories are hard to come buy. My glucose level was horrendous when i was drinking protein drinks but now it is normal. There must be a safe medication some where  one can use. Maybe  other posters will share their experience as well. Again thank you always.

[TJM]

THC brownies is my go to if I am having trouble with my appetite.  For me, at least, it helps every time.  I was surprised how effective it is.

My son makes them for me.  I live in Washington state so do not need a prescription.

Oregon has a ballot measure to allow the use of mushrooms for anxiety and depression. It will pass. So soon both pot and acid (essentially) will be legal and probably easy to get, yet trying to get pain meds or xanax is dang near impossible.

I find that ironic.

Peace

Tom