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TJM

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  1. Like
    TJM reacted to JuneK in Challenges on my ROS1 journey   
    I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
    I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
    In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
    The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
    Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
     
  2. Like
    TJM reacted to Jill60 in NED   
    I am NED!!!
  3. Like
    TJM got a reaction from JuneK in My bucket list journey   
    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!
  4. Like
    TJM reacted to laurie2020 in My bucket list journey   
    Wow this is awesome
  5. Like
    TJM reacted to Karen_L in Metastasis to skin   
    @TJM That was one helluvan ice storm. We fared well, as did our family members. Many others were not as lucky. I had a brain MRI the Thursday after everything started (I was able to change the test from Wednesday, when it was still sleeting but forecast to warm up.) Things were starting to be manageable Wednesday night, but on Thurs., we still got up way earlier than necessary, packed our micro-spikes, and immediately skidded to our butts on the icy sidewalk. My husband started spreading kitty litter like crazy on our (downhill) driveway. We figured if we could get onto a main thoroughfare, we're be reasonably OK. We got to the cancer center early! I wasn't sure the technologists would show up, but they were there. Hooray! (Except for the MRI part haha.) We parked on the street when we got home. That driveway was still bonkers....
    I've not heard of LC metastasizing to the skin, but hey, who knows.
    I saw a dermatologist for my skin cancer because that's what my PCP said would be best. A little MOHS procedure and I was done. 
    Lou's got great coping advice, as always. Please keep us posted.
    Karen
  6. Like
    TJM reacted to edivebuddy in Metastasis to skin   
    It worked incredibly well.  My disease spread and grew faster than any heard of.  If died faster than anyone could have hoped for.
    12 days later looked like this.
    I no way is this indicative of a normal response. But it is about what the on call oncologist in the ICU said. Cancers that grow fast if the respond to treatment tend to respond fast.
     
     
     

  7. Like
    TJM reacted to BridgetO in Metastasis to skin   
    Hi TJM,  Lou's suggestion of a dermatologist is a good one. If you already have a dermatologist, I'd suggest calling direct to that office. (If I recall correctly, you have Kariser, right?- I know it's hard to get a specialist appointment). With Kaiser, you can also send a photo along with an email on their site- If you don't already have a derm, you could send it to your PCP. 
    edivebudy, that is one ugly lesion! Did the keyruda work? 
  8. Like
    TJM reacted to edivebuddy in Metastasis to skin   
    Call your dermatologist and see if they can get you in sooner.  A CT will show a some lesion but for your skin your eyes are much better.   A PET can also pick them up.
     
    Cutaneous metastasis is extremely rare.  Do not pay attention to the prognosis.  I was given a poor prognosis after developing a skin lesion. But here I am over 3 years later. 
    I've also had other lesions biopsied that were not Cancer done at the dermatologists office. 
    Here's my Cutaneous metastasis before starting keytruda 
     
     

  9. Like
    TJM got a reaction from JuneK in Challenges on my ROS1 journey   
    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
  10. Like
    TJM got a reaction from Scruboak in Challenges on my ROS1 journey   
    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
  11. Like
    TJM got a reaction from laurie2020 in My bucket list journey   
    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!
  12. Like
    TJM reacted to LouT in Where to from here   
    Lauren,
    Hi.  I’m glad you found us but sorry you need to be here.  Your dad is beginning a journey that can have a lot of twists and turns depending on many details.  I can’t give you particular detail regarding his condition, but I can tell you that I was diagnosed with lung cancer 4 years ago and am still here surviving and living my life.  So a LC diagnosis is no longer the definite death sentence that it once was and there is more hope than ever before.  This is a time for you (and your dad) to begin to learn about this disease.  This way you’ll be able to navigate these waters more successfully.
    This is an article titled “10 Steps to Surviving Lung Cancer; From a Survivor” and it can be found here.  Both you and your dad need to read this.  It was written by a member who was first diagnosed at Stage 3 and then later Stage 4 and 18 years later was considered cured.  It’s not everybody’s story but there are many here (like me) who have survived for years, and there is great knowledge for any LC patient, and family. Time to begin learning about this disease; causes, diagnosis, treatments, etc.  Take a look at “Lung Cancer 101“. Last (for now) is a forum you may find interesting it is our “Caregivers Resource Center“. I can understand that at this point you are less interested in reading than in “getting something done” to help your father, but knowledge is power in battling this complex disease.  You can also look through some of the forums to read what other survivors have written to get a better idea of what your dad might go through now and in the future.
    I hope this helps you.
    Lou
  13. Like
    TJM reacted to RJN in Sclc   
    @Angelina sounds like you have been through the wringer. I can’t help on SCLC or neuropathy, but on the sugar question it is a qualified “no”. I do think that keeping healthy and avoiding too much sugar (and carbs which are converted to sugar) helps you get through cancer treatment easier. However, except in very specific cancer types (not SCLC), sugar does not feed tumours. I really like this article which sets out the evidence to date: https://www.nytimes.com/2023/07/10/well/eat/sugar-cancer.html
  14. Like
    TJM got a reaction from Tom Galli in My bucket list journey   
    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!
  15. Like
    TJM got a reaction from tgif i guess in My bucket list journey   
    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!
  16. Like
    TJM got a reaction from laurie2020 in New Year 2024   
    This post made my day! Thank you
  17. Like
    TJM got a reaction from LouT in New Year 2024   
    This post made my day! Thank you
  18. Like
    TJM got a reaction from Marilyn Raven in My bucket list journey   
    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!
  19. Like
    TJM reacted to laurie2020 in New Year 2024   
    Happy New Year everyone! With every new year comes another birthday. Today is my birthday and once again I am able to thank God for my turning another year older as a cancer survivor. I am beginning my 3rd as a 4th stage Lung Cancer Survivor still keeping up with the fight. A fight that has been the most difficult battle in my life but one I will continue to fight in hopes of winning over this Monster that has tried to take my life away. Well Christmas and New Years has passed since I last wrote. Once again less struck at Christmas 🌲 my son Chris, his wife and son remained home due to illness. Jen, Jerome and the girls spent their Christmas in Arizona this year. The rest of us shared dinner and the children shared some gifts on Christmas day and thanked God for the ability to share this day together. We decided the main gift giving would be postponed until New Years Eve. New years Eve was perfect. We spent 4 wonderful days at the house we have rented for family gatherings in Coventry for the past few years. 18 of us Gather around the meal table in Coventry and thank God for bringing us all together to meet as a family and celebrate LIFE. Although Jen, Jerome and the girls did not make it back this year, the rest of us carried on the tradition of each couple cooking a dinner for all, games, walks to the stables and the tree house on the river in and most importantly spending time together. It was a wonderful memorable time. Christmas gifts were shared and most important we all brought back to our homes special memories of time spent together yet again at this special location. The kids love these outings and we are all so sad to go home at the end of our stay together. It is now the end of the day of this special birthday. I was able to share a special lunch celebration at one of my favorite restaurants called Relish. I love there food and staff. My daughter Lindsey arranges my special occasion ceebrations here and brings special cakes and cupcakes. Peter was able to attend this one as was Gui my daughter n law. A great meal with them made my day. Full family celebration Will take place Sunday. So fortunate to continue to have these special moments with my family as my fight against cancer continues. Trust in God as he remains in charge.
  20. Like
    TJM got a reaction from Tom Galli in Challenges on my ROS1 journey   
    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
  21. Sad
    TJM got a reaction from Tom Galli in Metastasis to skin   
    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.
  22. Like
    TJM got a reaction from laurie2020 in Low point   
    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!
  23. Like
    TJM got a reaction from BridgetO in I know I'm not alone but dang....   
    I feel extremely lucky not to have lost power as well. This "thaw" sure is taking it's time. I remember many a silver thaw in the past, but not one that took this long!
    Stay warm everybody!
  24. Sad
    TJM got a reaction from LouT in Metastasis to skin   
    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.
  25. Like
    TJM got a reaction from LouT in I know I'm not alone but dang....   
    I feel extremely lucky not to have lost power as well. This "thaw" sure is taking it's time. I remember many a silver thaw in the past, but not one that took this long!
    Stay warm everybody!
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