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TJM

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Posts posted by TJM

    lung nodule

    in GENERAL

    Posted

    What a crappy situation! I am really surprised no one has suggested a PET scan now, rather than wait. You might suggest that to your pulm doc. Especially since you had existing nodules.

    Best wishes

    Tom

    I seem to be struggling accepting good news!

    in MEMBER UPDATES

    Posted

    I posted my scan waa clear, that the lesion I was concerned about was nothing and my weight loss stabilized. To top it off I actually feel pretty decent for my new normal 

    Then last week I noticed my right foot was swollen up pretty good. Not the left. Concerned my wife enough to call the advice nurse. They advised a trip to the ER. I waited till the next day and went into urgent care. Results were:

    CBC and other tests fantastic. Ultra sound showed no DVT. X ray nrgative.

    Then I went home. My foot is still swollen. Doc only gave me vague instructions. FWIW, I did have a PE several years ago and am on blood thinners.

    I have a note into my primary but do not have high hopes. Anyone else experience Endema (sp) so long after treatment (3.5 years) and totally out of the blue?

    I guess I cannot accept exceptionally good results without a fight!

    Tom

     

    lung nodule 6mm to 9mm

    in GENERAL

    Posted

    Hello. I had a 1.2 cm round nodule in my RLL discovered in 2006. Had annual scans for 5 years and then forgot about it.

    Fast forward to 2020 (early) and that nodule had grown to the size of a lime. Upon reviewing my past surveillance scans I found that it had indeed been growing very slowly, but growing. No alarms were set off. Also the SUV uptake wasn't high but wasn't  nothing at 1.8

    My message is to not forget about it if you go the surveillance route. I ended up with 3 nodes involved and staged 3. Had a RLL VATs, chemo and radiation. Turned out to be Large cell NET (rare for LC) so the stats were scarce. They treated it as if it was small cell. I feel lucky to have had surgery because if it was known to be large cell protocol for surgery is sketchy.

    I would have it removed. I wish I had in 2006 (was given the option but doc suggesr a PET scan instead). Suffice it to say I was not a happy camper and made them very aware of that fact.

    Best of luck. Probably ok to go either way...if you keep cognizant it is there.

     

    NED still

    in MEMBER UPDATES

    Posted

    My last CT scan came back clean again! This marks exactly 4 years since my RLL VATs! The spot on my abdomen I was a bit concerned about was begnin and a full body check has me clear of any suspicious lesions (had a basil cell lesion removed 2 years ago).  Finally, my unintentional weight loss stabilized...right at my normal pre-cancer weight!

    With some honest reflection I realize I currently feel the best I have felt since this whole thing began. 

    Time to seriously contemplate living a long time. I haven't allowed myself that luxary since the original prognosis. If I look at the statistics for one flavor of tumor (Carcinoid which mine was) I look golden (less than 5% chance of recurrence). But if you look at a NET Large cell NSCLC (which mine also was) the odds of recurrence  much higher (80% with minimal data).

    I shall now use the optimistic (and more likely) scenario to inform my future decisions.

    Very interesting mental position for me. I will live a lot longer than I expected I would. When I told my wife I had changed my outlook and thought I might be around awhile all she said was "I knew that long ago". Time for me to decide what the heck I'm going to do with all this potential "bonus" time! A delimma I hope to enjoy fixing!

    Tom

    My bucket list journey

    in SHARE YOUR LUNG CANCER STORY

    Posted

    All

    I think I had stopped posting before this happened (on advice from a lawyer) but it might be interesting for some of y'all 

    I was sitting in my OSU recliner in late 21 and had an epiphany. I could stay in that fine recliner, get fat, and just wait or I could do something different. When I say I...my wife is included.

    So we sat down and developed a bucket list. It included a bunch of stuff we both desired. First sell our much to big (with the boys gone) house. Buy my most desired car (CT6-V. Check it out if you like cars) and travel. We decided on starting with a cruise to Alaska to see how well I did. Went with some dear friends (one had LC also and has sense past) and had a fine time. I didn't do all the excursions, but my wife did and had a blast.

    After that, we decided on a slow trip across the US starting in Washington. Made plans to meet up with friends along the way. Even had lunch with old friends from Seattle at the Mackinaw bridge in the UP of Michigan. We ended in Brooklyn New York where my wifes sister lives. Had my pup Mac with us for the drive.

    Then we caught the QE2 in Brooklyn and sailed to South Hampton UK. 7 day journey which was fantastic. Had the widow of my second dad join us for the trip. It was magical.

    Then we spent 3 months taking the train around Europe. From Rotterdam to Barcelona and two stops in France. It was a great trip but I learned that Europe is more divided than even the US. Any desire to retire there quickly dissolved. My two favorite visits were to a WW1 battle site in northern france and Normandy. The cemetery"s were very moving places. Tor du Hoc (sp) was astonishing. My parents generation were an incredible group to have accomplished what they did. Also very special was meeting up with a large group of friends from Longview in Paris for a fun night of food, drink and chat.

    We then spent the last 3 weeks in England. Being Scottish we had to visit Edinburgh. I highly recommend it if you get a chance. The castle is the best we saw by far. Also, the war room exhibt in London was incredible and wore me out so much I had to rest for two days. We were joined by a special couple. The wife had just survived a breast cancer scare (when we set it up we didn't know if it was a recurrence yet) that turned out to be begnin. What a great week of celebration.

    We had such a grand time on the QE2 coming from the US we decided to take it back home. In November. Across the North Atlantic! It was an exhilarating rough trip and I was very pleased to find I do not get sea sick.

    Upon arrival back in Brooklyn I decided to drive straight back to Washington. My wife stayed with her sister for a few days and then flew home. It was the perfect end of the adventure for me. Alone in my bucket list Caddy driving as long and as fast as I wished. I enjoyed it immensely.

    I can now claim to have traveled from Alaska to Barcelona and back without ever stepping on an airplane!

    We did spend a bunch of my kids inheritance but I wouldn't do it any different. Sorry for the long post.

    Tom

    PS This post does not do justice to the trip. So many stories. So many memories. I have only one thing left on my bucket list. To watch the Lions in the Superbowl live. Is that possible this year? Yah damn right it is!

    Large cell NET lung cancer

    in GENERAL

    Posted

    I am posting this because it is newer than what I found when I was first diagnosed. It may be helpful to anyone who has this diagnosis. Not sure if I should post somewhere else?

    https://www.frontiersin.org/journals/oncology/articles/10.3389/fonc.2021.650293/full

    Best to all. Hopefully I get into a dermatologist next week. Should know by Monday. The dang thing appears to be growing. 😶

    Edit: What is the easiest way to find my old posts? Appreciate any help. I was very on top of things then so it might help me now. Thx

    Challenges on my ROS1 journey

    in MEMBER UPDATES

    Posted

    Wow. What a journey.

    I am still on opioids (to my primary's dismay) but KP will not prescribe xanex with opioids so they cut me off xanex (the begining of my weight loss!). He asked me to try Cymbalta in place of the xanex and hopefully help the pain. It did nothing for my pain but to my complete surprise it worked wonders on anxiety! Doesn't help my appetite like xanex did but that is minor compared to constant anxiety.

    I would give it a shot. Especially if you do have any anxiety. He titrated me up to full dosage over two weeks but it helped with anxiety the very first day.

    Best wishes in your struggle. I hope the new drug works and the pain subsides. Constant pain is dilapidateing. I have been told no blood thinning over the counter pain meds because I am on blood thinners for life because of a PE. I cheat when the pain gets to bothersome.

    Tom

    Low point

    in MEMBER UPDATES

    Posted

    Sorry I missed this string. I too have been having problems with passing out or nearly passing out and I am not on treatment. I had a theory that since I gained a ton of weight during/after treatment and have lost all of it over the past year (50 lbs) that maybe some of the Chemo drugs were "stored" in all that fat I gained then lost. Engineers think of the darndest things!

    After doing a ton of blood work and labs one of the  care givers at KP decided it was a combination of a low sodium level (it was low) and a severe vitamin D2 deficiency. Told me to use more salt and gave me some potent D2 pills ( take one a week for 8 weeks).

    I have serious doubts. Two things a Scotsman has is one, never an issue with too little salt and two a heriditary lack of vitamin D2!

    My appetite sucks and I have found that if I do not eat regularly I have to "hug the wall" every time I stand up. My primary told me to stand up more slowly. LOL.

    I cannot wait for my next scan. Which they will not move up. I am torn between feeling like a paranoid hypochondriac and a building concern of some kind of recurrence. When did I become so hesitant?

    Hope this helps a bit

    Tom

    Edit: I also have low BP and have had it for awhile. Been as low as 95/45. Again my primary thinks increased sodium will help that. So I have increased my intake of potato chips!

    Metastasis to skin

    in GENERAL

    Posted

    I have a spot on my abdomen that is new and it has me concerned. I had an appointment with my primary that was canceled due to a massive ice storm! I have not been able to reschedule yet. I do have a scan scheduled for Feb 14th but I don't know if a CT scan is much good detecting skin metastasis. I am begining to get a tad ansey.

    My question is has any one had any experience with this type of metastasis or could direct me to some decent information. What I have found on Dr Google is not very informative (is it me, or has Google lost some of it's mojo?)

    Unfortunately I am getting the feeling that since I am 4 years NED I am back to ground zero, i.e. basically I have been cured and and urgency has been lost with my "team".

    I will get this done but I thought it might be worth a shot to see if anyone else has traveled a similar path

    Tom

    PS. I did have a cancerous spot on my arm that was basil cell and deemed not connected to my Large Cell NSCLC.

    I know I'm not alone but dang....

    in GENERAL

    Posted

    It is super cold. Especially for the NW. Hasn't been this cold in over 30 years. Supposed to get a pretty good shot of snow today as well!

    Luckily have plenty of fire wood and hot cocoa. I will enjoy watching from my warm den!

    Stay safe everyone 

    Tom

    Good news sort of.

    in MEMBER UPDATES

    Posted

    Not to disagree with Lou, but in my case it was my pulmonary doc (she was an angle) who coordinated treatment with the surgeon. No oncologist was involved until the biopsy after surgery showed it was Large Cell so protocol indicated adjunctive Chemo after surgery.

    I'd ask the one you have a relationship with?

    Tom

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