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DrBee

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  1. Like
    DrBee got a reaction from LaurenH in New and scared   
    Hi Jenah and welcome to this very supportive, inspiring and wise club - of which no one wants to be a part. I am also new; my husband (49, never smoker) was diagnosed stage iv NSCLC adenocarcinoma at the end of July (3 days before our first wedding anniversary, incidentally). This forum - both being able to vent here, and the amazing and inspiring survivors, including very longterm ones - are probably the only reason I got to sleep some of those first nights when I couldn't stop crying, my hubby couldn't stop coughing, and we didn't even know how we'd make it to the first chemo session.

    We found out 4 days later he is ALK+, so I shifted more of my online interaction to the ALK Positive FB group, but I keep coming back here to check in with folks and because so much of the wisdom here is applicable across a broad range of types/stages of LC. 

    I am sure you are googling KRAS like crazy, so don't need me to tell you this or send you this link, but there are really exciting things happening right now with the development of KRAS-specific targetted therapies (see for instance https://directorsblog.nih.gov/2018/02/13/kras-targeted-cancer-strategy-shows-early-promise/) So you may have more options, soon. Hopefully radiation will take care of this for now, and then if and when you need them, those KRAS specific drugs will mean whole different treatment options - and prognosis - for you. 

    I am so glad you found us. Please keep us posted and know we all are holding you in our thoughts. You can do this! 
  2. Like
    DrBee got a reaction from Tom Galli in Doc implying chemo and radiation can't be done at the same time   
    For some reason I can't quote you, Bridget or Judy (quoting you) but that is super helpful! ❤️  BTW, update, we learned we are ALK+, so we are not on immuno/chemo but targeted therapy which is working BEAUTIFULLY!. 
  3. Like
    DrBee got a reaction from Judy M. in Doc implying chemo and radiation can't be done at the same time   
    For some reason I can't quote you, Bridget or Judy (quoting you) but that is super helpful! ❤️  BTW, update, we learned we are ALK+, so we are not on immuno/chemo but targeted therapy which is working BEAUTIFULLY!. 
  4. Like
    DrBee reacted to Judy M. in Doc implying chemo and radiation can't be done at the same time   
    I don't think doc is saying you can't have it but only that you can't have it together and the chemo/immunotherapy you are getting right now is the priority. I had both, but consecutively not concurrently. 
    Judy M
  5. Like
  6. Like
    DrBee reacted to eullrich66 in Doc implying chemo and radiation can't be done at the same time   
    HI,
    I don't know your full treatment plan, but in my recent experience, part of my treatment will be surgery to remove a lobe or the whole lung. I was told that radiation could cause scarring which could delay surgery.
    I was also told that radiation may be used post surgery on the lymph nodes area.
    Just another two cents!
  7. Like
    DrBee reacted to Robert Macaulay in Doc implying chemo and radiation can't be done at the same time   
    My thought is they want to go full strength with the chemo and when I had radiation and chemo combo it was a reduced dose of chemo as not to interfere wiith radiation side effects and the full dose of chemo is not for the faint of heart I just  had two after six reduced doses with radiation no comparison.
    Bob
  8. Like
    DrBee got a reaction from Roz in New and scared   
    Hi Jenah and welcome to this very supportive, inspiring and wise club - of which no one wants to be a part. I am also new; my husband (49, never smoker) was diagnosed stage iv NSCLC adenocarcinoma at the end of July (3 days before our first wedding anniversary, incidentally). This forum - both being able to vent here, and the amazing and inspiring survivors, including very longterm ones - are probably the only reason I got to sleep some of those first nights when I couldn't stop crying, my hubby couldn't stop coughing, and we didn't even know how we'd make it to the first chemo session.

    We found out 4 days later he is ALK+, so I shifted more of my online interaction to the ALK Positive FB group, but I keep coming back here to check in with folks and because so much of the wisdom here is applicable across a broad range of types/stages of LC. 

    I am sure you are googling KRAS like crazy, so don't need me to tell you this or send you this link, but there are really exciting things happening right now with the development of KRAS-specific targetted therapies (see for instance https://directorsblog.nih.gov/2018/02/13/kras-targeted-cancer-strategy-shows-early-promise/) So you may have more options, soon. Hopefully radiation will take care of this for now, and then if and when you need them, those KRAS specific drugs will mean whole different treatment options - and prognosis - for you. 

    I am so glad you found us. Please keep us posted and know we all are holding you in our thoughts. You can do this! 
  9. Like
    DrBee got a reaction from Tom Galli in New and scared   
    Hi Jenah and welcome to this very supportive, inspiring and wise club - of which no one wants to be a part. I am also new; my husband (49, never smoker) was diagnosed stage iv NSCLC adenocarcinoma at the end of July (3 days before our first wedding anniversary, incidentally). This forum - both being able to vent here, and the amazing and inspiring survivors, including very longterm ones - are probably the only reason I got to sleep some of those first nights when I couldn't stop crying, my hubby couldn't stop coughing, and we didn't even know how we'd make it to the first chemo session.

    We found out 4 days later he is ALK+, so I shifted more of my online interaction to the ALK Positive FB group, but I keep coming back here to check in with folks and because so much of the wisdom here is applicable across a broad range of types/stages of LC. 

    I am sure you are googling KRAS like crazy, so don't need me to tell you this or send you this link, but there are really exciting things happening right now with the development of KRAS-specific targetted therapies (see for instance https://directorsblog.nih.gov/2018/02/13/kras-targeted-cancer-strategy-shows-early-promise/) So you may have more options, soon. Hopefully radiation will take care of this for now, and then if and when you need them, those KRAS specific drugs will mean whole different treatment options - and prognosis - for you. 

    I am so glad you found us. Please keep us posted and know we all are holding you in our thoughts. You can do this! 
  10. Like
    DrBee reacted to Jenah in New and scared   
    Thank you. I have good days where I feel like I can and will conquer this. Then I have days like when I posted this...and had been making the mistake of googling.
    I have a start date to radiation: Thurs, August 23. If it only goes 28 treatments, the last is 4 days before my nephew’s wedding, 3+ hours away. How am I going to do this?
     
  11. Like
    DrBee reacted to Roz in New and scared   
    Hi Jenah,
    I would be happy to answer any questions that you might have. I'm sorry to hear about your diagnosis.  I was diagnosed stage IV mucinous adenocarcinoma with the KRAS mutation summer of 2017. I had my lower left lobe removed (VATS) in Sept 17, and my upper right lobe removed (thoracotomy) in Oct 17. I had chemo after. 
    I was 60 when diagnosed and have always maintained a healthy lifestyle.  My best advice for you is to continue to stay positive, and believe that you will be "NED" soon. If you have any questions, do not hesitate to ask. 
    Take care,

    Ro
  12. Like
    DrBee reacted to Jenah in New and scared   
    For months, docs were treating what they thought was a lung infection. May 17 of this year, I had a left lower lobectomy. May 30 I was told stage 2a andenocarcinoma. Later it was upgraded to 3a, with the KRAS mutation.
    I did one round of chemo and my kidneys started to go nuts. I can’t do any more chemo. I’m inbetween my planning scan and start of radiation.
    Never a smoker. 40 years old. And my daughter is only 10.
    I’m scared out of my mind.
    Any help and positives would help.
    Hoping for very few spelling errors as I am sobbing while writing this.
  13. Like
    DrBee got a reaction from LaurenH in Into the Fray!   
    Dorothy, just know I'm sending love and strength today. Look forward to an update when you have a chance. Big hugs to you both. Al seems super strong and I suspect you're even stronger.
  14. Like
    DrBee reacted to LexieCat in husbands update   
    I'm sorry, bes,
    I've been there with partners dealing with cancer and other life-threatening conditions.  I truly get how you're feeling.  I had to take one guy's clothes out of the hospital because he kept threatening to leave--I said, "Good luck getting a cab in your hospital gown with your butt hanging out."  
    DrBee is right--you need to be sure to take care of your own mental health and try not to take the behavior personally.  In part it is a "guy thing," I suspect--men aren't as socialized to ask for help when they need it.  
    Just sending you a hug and support.  You're doing great under very trying circumstances.  He's probably trying to hold onto the shreds of autonomy he has when it feels like everybody is ordering him around (for his own good, of course).  
  15. Like
    DrBee reacted to Tom Galli in husbands update   
    Bes,
    I was a nightmare of a patient.  After mets to my remaining lung after removal of my right lung, and a years worth of surgery addressing suture failure in my airway, I became severely depressed.  I didn't tell anyone about it and hid it so well that my wife didn't see any signs.  I also tried to spend time by myself because it was a struggle to be sociable with the weight of the disease and failed treatments hanging over me. Thankfully, I mentioned it as an off-hand remark during a visit to my GP and he arranged medication and counseling.  
    I was naturally stubborn and those compression socks I wore while in the hospital were truly uncomfortable.  I had one nurse put tape on the sock that was deliberately well adhered to the hair on my leg so removal would be most uncomfortable.  So the socks stayed on.  Check for signs of depression.  It is often hard for men to open up about how they feel.  I guarantee you, he's afraid, uncertain, and frustrated.  When these thoughts mount up, depression follows.
    Stay the course.
    Tom
  16. Like
    DrBee got a reaction from bes in husbands update   
    Oh Bes I'm so sorry....about both his pain and yours. My sweetie can be a tough nut as well, and of course he doesn't fully appreciate  realise the impact this all has on you. What if I friends who was a longtime caregiver for her partner gave me a great Mantra, comfort In, dump out" (www.psychologytoday.com/us/blog/promoting-hope-preventing-suicide/201705/ring-theory-helps-us-bring-comfort-in ). that is, we attrmpt to direct nothing but love to the patient but we must have places to "dump"  or vent, ourselves. I hope that this is proving to be a therapeutic place for you and that you have other great places to vent as well. 
  17. Like
    DrBee reacted to bes in husbands update   
    My husband has started taking the hydromorphone medication again his pain was a level 6 last night. This cancer pain is crazy he was a level 6 last night, level 4 this morning and this afternoon nothing and he has taken nothing but a Tylenol this morning.  It's a roller coaster hard to figure out disease; I hate it.  I keep going back and forth maybe the Keytruda has kicked in again. I'm stressed and I'm dealing with a stubborn hubby; Doesn't want to put the elastic sock back on, doesn't want to use the new non invasive ventilator and he just left to take a ride in the car by himself because he "needs space".  I feel like I'm dealing with a toddler.
  18. Sad
    DrBee reacted to bes in husbands update   
    Thanks Steff the scan stated the it was a necrotic masslike opacity leading the dr to suspect it might not be inflammation and my husband has not been feeling well all week on the pain meds and he had been pain free for months.
     
  19. Like
    DrBee got a reaction from PaulaC in Serum versus tissue testing   
    Thank you Lauren! Will do! It's been close to 48 hours since the first treatment and even super pessimist hubby said "you know maybe it's just because I know I'm on treatment but I think I feel a little bit better." YESSSS! And he has been definitely perkier with less coughing. So I'm not sure how much of that is in his head and how much of it is the treatment since it is still so early, but I am so grateful to have these options and to have this community. Also found the  wonderful ALK+ group on Facebook which I know works with Lungevity as well!
  20. Like
    DrBee got a reaction from LaurenH in Serum versus tissue testing   
    Thank you Lauren! Will do! It's been close to 48 hours since the first treatment and even super pessimist hubby said "you know maybe it's just because I know I'm on treatment but I think I feel a little bit better." YESSSS! And he has been definitely perkier with less coughing. So I'm not sure how much of that is in his head and how much of it is the treatment since it is still so early, but I am so grateful to have these options and to have this community. Also found the  wonderful ALK+ group on Facebook which I know works with Lungevity as well!
  21. Like
    DrBee reacted to LaurenH in Serum versus tissue testing   
    Hi, Bethany,
    We're glad that you have a treatment plan in place! Please continue to keep us posted and ask questions. I'm happy to provide you with additional information about LUNGevity's support and education resources as well. We are here for you!
    With gratitude,
    Lauren
    --
    Digital Community Manager
    LUNGevity Foundation
  22. Like
    DrBee got a reaction from Tom Galli in ALK Slideshow   
    Hi Meloni! Not related to this slideshow, but it was so nice to find a familiar name once I started over on the ALK+ facebook group.   
  23. Like
    DrBee got a reaction from Tom Galli in Serum versus tissue testing   
    I just realised I had posted updates to this elsewhere but not here. I was so keen to get going on treatment once we got our Stage IV diagnosis. We got ALK+ results on Monday, started Alectinib yesterday. Fingers crossed! 
     
  24. Like
    DrBee got a reaction from Judy M. in NSCLC Round 3   
    YES Susan!!! Such great news! Big exhale in Illinois as well!
  25. Like
    DrBee got a reaction from Judy M. in Serum versus tissue testing   
    I just realised I had posted updates to this elsewhere but not here. I was so keen to get going on treatment once we got our Stage IV diagnosis. We got ALK+ results on Monday, started Alectinib yesterday. Fingers crossed! 
     
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