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Deb W

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  1. Like
    Deb W got a reaction from Scruboak in Scanziety - a little higher this time   
    Hi everyone,
    I mentioned before that I was taken off of Keytruda due to toxicity that caused colitis.  I realize I've been so fortunate to have  had clear scans August, October and December.  What's different about my upcoming scan on Tuesday is that I haven't had a Keytruda treatment since December.  I realize that Keytruda works long after the last treatment, but I've gotta say there's some extra scanziety since this is the first scan since I've been off Keytruda.  The original plan was to keep me on maintenance  for 2 years, but I was only able to tolerate it for  8 months.  I'm telling you that the colitis came out 7 1/2 months after I started treatment.  My oncologist told me that side effects can happen even after being off it for a year.  That's not to say that I won't be put back on it once the colitis goes away.  Anyway, any good vibes, thoughts or prayers sent my way would be greatly appreciated.  Thanks.
    Deb
  2. Like
    Deb W reacted to LexieCat in Hip MRI   
    I had an MRI of my right hip--the one that's been causing me such pain--on Saturday. I assumed the results were probably sent to my PCP but figured she hasn't had a chance to review it yet. I intentionally got the imaging done where I get my cancer treatment, so I sent my NP a note asking if she could access it. I just wanted to make sure there's nothing we need to know for tomorrow's visit with the NP and infusion.
    I LOVE my NP--she immediately accessed the image/report and uploaded so I can see. She said it looks like arthritis and a tendon tear, but nothing related directly to my cancer.
    When I read the report, I saw that THIS radiologist was very thorough. She compared the images to my most recent pelvic CT, my PET/CT from last year (when I was first diagnosed with the new cancer), and the MRI of my sacrum they used to confirm the bone met on my sacrum.
    In addition to the arthritis and tendon tears, she noted that it was barely possible to see the lesion/met at this point and that it was "nearly completely resolved."
    My NP messaged me to suggest following up with an orthopedist (I want to discuss with my PCP first), but letting me know that nothing in the report suggested the pain has anything to do with the cancer.
    So THAT is a relief. I'll have to deal with the hip pain, but at least it's nothing ominous in terms of the cancer. And, of course, "almost completely resolved" is great news as far as the bone met is concerned!
  3. Like
    Deb W reacted to TJM in NED is NED.   
    A dear friend just got her tests back for Breast cancer. She is NED! NED is NED and I could not be happier!
    Peace
    Tom
  4. Like
    Deb W got a reaction from GaryG in Scanziety - a little higher this time   
    Hi Tom,
    Thank you!  Wow, looks like I have work ahead.  I  have my scans done within the same hospital system, but sometimes I go to the suburban location.  Honestly, I've never had the same technician except when I go to the suburban location.  I actually went to the downtown facility for this last scan thinking that since that's where my oncologist is located it would be better and resulted faster...not so!  I do have access to all the bloodwork and scan reports on the portal.  I usually do read it to check to see if I'm in the normal range.  I'm going to do a better job at checking.
    I still haven't heard from my oncologist regarding the scan report....only his nurse.  I think I'm going to wait a couple more hours and then have him paged.  I've only paged him once in the last 10 months!
     
  5. Like
    Deb W got a reaction from GaryG in Scanziety - a little higher this time   
    Lexie,
    I know what you mean.  When I was at my appointment my oncologist was able to view the scan and he said it looked good to him, but said we will wait for the written report.  I left the office so happy and ready to celebrate another clean scan.  So, I'm not sure what changed, but I'm on pins and needles here just waiting.
  6. Like
    Deb W got a reaction from LexieCat in Scanziety - a little higher this time   
    Lexie,
    I know what you mean.  When I was at my appointment my oncologist was able to view the scan and he said it looked good to him, but said we will wait for the written report.  I left the office so happy and ready to celebrate another clean scan.  So, I'm not sure what changed, but I'm on pins and needles here just waiting.
  7. Like
    Deb W got a reaction from Steff in Scanziety - a little higher this time   
    Steff - I will ask, but I think one is in the mediastinal area and I don't think they can biopsy that area (but I'm not sure - I don't know enough at this point.  I'll know more when they rewrite that report.
  8. Like
    Deb W got a reaction from Tom Galli in Scanziety - a little higher this time   
    Lexie,
    I know what you mean.  When I was at my appointment my oncologist was able to view the scan and he said it looked good to him, but said we will wait for the written report.  I left the office so happy and ready to celebrate another clean scan.  So, I'm not sure what changed, but I'm on pins and needles here just waiting.
  9. Sad
    Deb W got a reaction from Tom Galli in Scanziety - a little higher this time   
    Thanks for all of your comments.  It means the world to me to have all of you on this site.  I've learned so much.   The plan has changed and I will not have the blood test.  My oncologist ordered a PET scan and it's set for next Tuesday.  
    I just want to add that I was going over the radiologist's report and even my history was incomplete.   It only mentioned Stage 1b in 2019 and now experiencing colitis from Keytruda....no mention of Stage IV diagnosis in 2020.  This made me look further into the report and then I noticed that the comparison was not done to my scan in 12/20 or even 10/20, but it was being compared to my scan in 8/20 (which I was told was clear).  I wrote to the oncologist and asked why the comparison was being made to August  instead of Decementer.  The nurse wrote back and thanked (?) me for pointing out the error.  She contacted the read room and the radiologist said he'd do an addendum over the weekend.  WHAT?  I wrote back and said I'd like it tomorrow.  Nothing yet from my oncologist.  This kind of stuff worries me and it feels like they're not paying attention to detail.  Why do I have to find the error?  Shouldn't the oncologist have seen this right away?  Am I expecting too much here?
    Steff, that makes sense about the inflammation.  I am still taking steroids for the colitis because of the inflammation caused by the Keytruda and that's why I can't be be put back on it.  So it does make sense that there would be inflammation in other areas.  If the PET lights up on Tuesday, I will need to make a decision on how to move forward. 
    Once the report has been reread and updated, I will post.  I'm just not confident that what I'm reading is accurate. Another thing, if there was a consultation on this case and no one saw that...it's worrisome.
    Thanks again for all your input.  
    Deb
  10. Confused
    Deb W got a reaction from TJM in Scanziety - a little higher this time   
    Thanks for all of your comments.  It means the world to me to have all of you on this site.  I've learned so much.   The plan has changed and I will not have the blood test.  My oncologist ordered a PET scan and it's set for next Tuesday.  
    I just want to add that I was going over the radiologist's report and even my history was incomplete.   It only mentioned Stage 1b in 2019 and now experiencing colitis from Keytruda....no mention of Stage IV diagnosis in 2020.  This made me look further into the report and then I noticed that the comparison was not done to my scan in 12/20 or even 10/20, but it was being compared to my scan in 8/20 (which I was told was clear).  I wrote to the oncologist and asked why the comparison was being made to August  instead of Decementer.  The nurse wrote back and thanked (?) me for pointing out the error.  She contacted the read room and the radiologist said he'd do an addendum over the weekend.  WHAT?  I wrote back and said I'd like it tomorrow.  Nothing yet from my oncologist.  This kind of stuff worries me and it feels like they're not paying attention to detail.  Why do I have to find the error?  Shouldn't the oncologist have seen this right away?  Am I expecting too much here?
    Steff, that makes sense about the inflammation.  I am still taking steroids for the colitis because of the inflammation caused by the Keytruda and that's why I can't be be put back on it.  So it does make sense that there would be inflammation in other areas.  If the PET lights up on Tuesday, I will need to make a decision on how to move forward. 
    Once the report has been reread and updated, I will post.  I'm just not confident that what I'm reading is accurate. Another thing, if there was a consultation on this case and no one saw that...it's worrisome.
    Thanks again for all your input.  
    Deb
  11. Like
    Deb W got a reaction from Susan Cornett in Scanziety - a little higher this time   
    Hi everyone,
    I mentioned before that I was taken off of Keytruda due to toxicity that caused colitis.  I realize I've been so fortunate to have  had clear scans August, October and December.  What's different about my upcoming scan on Tuesday is that I haven't had a Keytruda treatment since December.  I realize that Keytruda works long after the last treatment, but I've gotta say there's some extra scanziety since this is the first scan since I've been off Keytruda.  The original plan was to keep me on maintenance  for 2 years, but I was only able to tolerate it for  8 months.  I'm telling you that the colitis came out 7 1/2 months after I started treatment.  My oncologist told me that side effects can happen even after being off it for a year.  That's not to say that I won't be put back on it once the colitis goes away.  Anyway, any good vibes, thoughts or prayers sent my way would be greatly appreciated.  Thanks.
    Deb
  12. Sad
    Deb W got a reaction from TJM in Scanziety - a little higher this time   
    Hi everyone,
    Well, it's not the news I was hoping for.  I don't have the written report - it will probably be released in the portal in 3 days.  My oncologist called and said that  my scan showed that there  are 3 areas in the left lung showing  small changes; he is concerned that it is cancer...concerned enough that he is recommending that I start Tepotinib (the new drug for MET exon-skipping).   The drug takes about 3 weeks to get and he said there's a lot of paperwork.   I decided I am going for a blood test to see if it shows  that I have cancer again,  but he said that there's only a 50% chance it will show on the test.  Still, I don't want to take Tepotinib until I know for sure.  I will have a scan in 4 weeks to see if there are any changes.  I'm still in disbelief - I blamed every symptom I had on Keytruda and Colitis.  Partly because when I discussed my concern that  cancer may have returned I was told "No" it's the colitis that was making me feel so run down.  I just had a scan on 12/28 and I was told it was clear.  I thought adenocarcinoma was slow growing...maybe it's a different kind.  Thanks for all your kind words and prayers.  I'm not sure how I'll proceed.
    Is anyone taking Tepotinib that would be willing to share their experiences?
    Deb
  13. Like
    Deb W got a reaction from Claudia in AHHHH.....I'm NED   
    Wonderful news Claudia!
  14. Sad
    Deb W reacted to Kwally3 in [59m] EGFR exon 18 turned to small cell. Diary of a [28m] caretaker.   
    My dad passed this morning. I’m in a state of shock and regret that I wasn’t able to hug him at all these past two weeks. This was not the way it was supposed to go. He was fine but in chemo pain just yesterday having gotten chemo the past Friday.
    did you guys decide to find cause of passing? Part of me wants to know if it was covid related, chemo, heart attack? Maybe I could have done something to prevent it. But that is also could be invasive.
    --------------------
    edit: For future readers, here are details. If just one caregiver finds this helpful in preparing, then this will be worth it.
    Dad seemed to have recovered from COVID. Last Tuesday, his COVID test came back negative and his symptoms had been mild throughout. I don't know if the complications were due to COVID or chemo or something else.

    My dad's significant other who is staying with him said he was mostly awake the entire night, albeit uncomfortable due to having gotten his chemo 2 days prior. He took his pain medication around 1am and again at around 5am and even went to use the bathroom. At around 6:30am he was drifting into sleep.  She noticed something a bit off and asked him something and he didn't respond. That's when she discovered his pulse was very weak. She called me at 7:04am and I wish I saw the call--I was driving, and it was one of the few days my cellphone was on vibrate. She speaks Chinese so she didn't know she can just call 911 and they will send someone over to the location of the cellphone. My cousin called me to call my aunt since, and I did so at 7:07am. I wish I asked for details, she must have been in shock and just screamed at me to come home (I'm 10min away). She called again at 7:16 telling me to call 911. I arrived at 7:20 and firefighters began CPR at 7:30am. He was pronounced a few minutes before 8am. The police showed up to take pictures. They gave us contact for the local mortuary, and the officer shared his story about his experience of his gradnfather's passing and what to expect. He even offered his cell, if I needed someone to talk to. They tell me it likely would not have made a difference even if they got there earlier, but it haunts me thinking how things might have turned out differently. If I asked for details, the fire fighters could have arrived at 7:15am. 

    She told me later that yesterday dad's digits were a bit cold. He disagreed on going to the ER. They thought it was due to cold weather and that his inability to sleep and the pains were related to the chemo, since the first 3-5 days are really uncomfortable. But, if I was there, maybe we would have succeeded in convincing dad or even tried the pulse oximeter, it would have picked up low o2 if the cold extremities were indication of lack of oxygen in his blood supply. My biggest regret was not reminding my aunt and dad more of the warning signs. And, not being there with him the past 3 weeks while he isolated due to COVID. He was still taking his daily walks so I could have tagged along at a safe distance. 
    I was going to move back in starting next week, which was when the oncologist felt comfortable there definitly wouldn't be any chance of infection. We were going to finish his living trust. I feel terrible that I didn't take the lead and help him finish it before COVID, or even in the first year, when there was plenty of time. That would have been just one fewer item for him to worry about, knowing that the transition will be smooth. As a caretaker, there is an inertia that you don't want him to think about the potential bad outcome by mentioning living trust, and he seems ok so you think it's ok to delay it a week. Then another week. And, because he was traditionally the doer of the household, you let him take the lead. But, it's much easier for you to do the busy-work for him of making appointments and printing documents. 

    For us, our living trust is half done. The house will go to me, as he intends (though in a tax inefficient manner because we didn't put it into the trust, but that's ok) but we didn't finish setting up so that his bank accounts would go to the living trust. I'm meeting with our estate attorney on what this means. Big picture, it isn't an issue, and I hope dad as he watches over us knows that it isn't an inconvenience at all.

    Right now, I have moved in with my uncle (dad's brother). Dad's sister and him are helping out, and I am so grateful for them. Talking amongst each other, I recognize that as unexpected as it was, he passed away on a happy note. Although he had pain, the past few days he was smiling, ate a lot, and was full of spirit in making plans for after the chemo side effects wore away. It wasn't a painful final stop with many complications, fluid in lungs, pain, altered mental state due to disease progression. I just wish we could have had one last walk around the block together, one last meal, one last hug. Covid took away my final 3 weeks with dad. I miss him so so much. 

       

     
  15. Like
    Deb W got a reaction from BridgetO in Scanziety - a little higher this time   
    Hi everyone,
    Well, it's not the news I was hoping for.  I don't have the written report - it will probably be released in the portal in 3 days.  My oncologist called and said that  my scan showed that there  are 3 areas in the left lung showing  small changes; he is concerned that it is cancer...concerned enough that he is recommending that I start Tepotinib (the new drug for MET exon-skipping).   The drug takes about 3 weeks to get and he said there's a lot of paperwork.   I decided I am going for a blood test to see if it shows  that I have cancer again,  but he said that there's only a 50% chance it will show on the test.  Still, I don't want to take Tepotinib until I know for sure.  I will have a scan in 4 weeks to see if there are any changes.  I'm still in disbelief - I blamed every symptom I had on Keytruda and Colitis.  Partly because when I discussed my concern that  cancer may have returned I was told "No" it's the colitis that was making me feel so run down.  I just had a scan on 12/28 and I was told it was clear.  I thought adenocarcinoma was slow growing...maybe it's a different kind.  Thanks for all your kind words and prayers.  I'm not sure how I'll proceed.
    Is anyone taking Tepotinib that would be willing to share their experiences?
    Deb
  16. Sad
    Deb W got a reaction from Judy M2 in Scanziety - a little higher this time   
    Hi everyone,
    Well, it's not the news I was hoping for.  I don't have the written report - it will probably be released in the portal in 3 days.  My oncologist called and said that  my scan showed that there  are 3 areas in the left lung showing  small changes; he is concerned that it is cancer...concerned enough that he is recommending that I start Tepotinib (the new drug for MET exon-skipping).   The drug takes about 3 weeks to get and he said there's a lot of paperwork.   I decided I am going for a blood test to see if it shows  that I have cancer again,  but he said that there's only a 50% chance it will show on the test.  Still, I don't want to take Tepotinib until I know for sure.  I will have a scan in 4 weeks to see if there are any changes.  I'm still in disbelief - I blamed every symptom I had on Keytruda and Colitis.  Partly because when I discussed my concern that  cancer may have returned I was told "No" it's the colitis that was making me feel so run down.  I just had a scan on 12/28 and I was told it was clear.  I thought adenocarcinoma was slow growing...maybe it's a different kind.  Thanks for all your kind words and prayers.  I'm not sure how I'll proceed.
    Is anyone taking Tepotinib that would be willing to share their experiences?
    Deb
  17. Like
    Deb W got a reaction from LouT in Moving my Mom to Hospice   
    Michelle,
    I'm so very sorry to hear about your Mom.  I understand how hard it must have been to make the decision to transfer her care to hospice. They will keep her comfortable.  My thoughts and prayers are with you and your family.  
    Deb
     
  18. Like
    Deb W reacted to LexieCat in Family Response   
    I can't IMAGINE the doctor talking him out of chemo. They do lay out the pros and cons of any course of treatment. For instance, my cancer is what could be considered "oligometastatic"--one very small met to a remote location. I COULD have had "curative" treatment (as used for Stage III) consisting of chemo and radiation at the same time. But my doctors (more than one weighed in) felt that, given the location of my main tumor, the radiation was likely to do so much damage to my esophagus that it would horribly impact my quality of life. They believed the triplet was almost as likely to help and that I'd feel better during/after treatment and strongly recommended that. Ultimately it was my choice, but considering the unknowns both ways and the likelihood of intractable pain with the radiation, I'm happy with my choice.
    But the treatment contemplated here is pretty well tolerated (tons of us here have had it or are having it), so I can't imagine any reason to talk him out of it.
  19. Like
    Deb W reacted to Rower Michelle in As Lexi knows   
    I’ve got a clue here- call your doc and report this.  Shortly after my diagnosis I was on some pretty heavy opiates to “help” control that cough.  When I took my first targeted therapy pill, my cough instantly disappeared.  So I called the clinic & can I stop taking all this crap?  Short answer was NOPE.   I had a six week taper.   I think you’ve got a minor case of withdrawal.   
    Your team can either do a taper with a renewed script or give you another medication to make you more comfortable.  It boils down to our DNA in how opiates are processed.   Some people aren’t very affected while others like me are.   
     
    No need to suffer through this at all.   Those aches can be extremely unpleasant & there are good drugs to manage the discontinuation of opiates.   
  20. Like
    Deb W got a reaction from TJM in Scanziety - a little higher this time   
    Hi everyone,
    I mentioned before that I was taken off of Keytruda due to toxicity that caused colitis.  I realize I've been so fortunate to have  had clear scans August, October and December.  What's different about my upcoming scan on Tuesday is that I haven't had a Keytruda treatment since December.  I realize that Keytruda works long after the last treatment, but I've gotta say there's some extra scanziety since this is the first scan since I've been off Keytruda.  The original plan was to keep me on maintenance  for 2 years, but I was only able to tolerate it for  8 months.  I'm telling you that the colitis came out 7 1/2 months after I started treatment.  My oncologist told me that side effects can happen even after being off it for a year.  That's not to say that I won't be put back on it once the colitis goes away.  Anyway, any good vibes, thoughts or prayers sent my way would be greatly appreciated.  Thanks.
    Deb
  21. Like
    Deb W got a reaction from Rower Michelle in Moving my Mom to Hospice   
    Michelle,
    I'm so very sorry to hear about your Mom.  I understand how hard it must have been to make the decision to transfer her care to hospice. They will keep her comfortable.  My thoughts and prayers are with you and your family.  
    Deb
     
  22. Thanks
    Deb W reacted to Saturn_Bound in Scanziety - a little higher this time   
    Deb, thinking of you and praying for a clear scan 💕
  23. Like
    Deb W got a reaction from Saturn_Bound in Scanziety - a little higher this time   
    Thanks everyone.  So thankful for this group.  I'll keep you posted.
  24. Like
    Deb W got a reaction from GaryG in Scanziety - a little higher this time   
    Thanks everyone.  So thankful for this group.  I'll keep you posted.
  25. Like
    Deb W reacted to LexieCat in Scanziety - a little higher this time   
    Sending good vibes your way! Keep us posted.
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