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Steff

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Steff last won the day on September 22 2020

Steff had the most liked content!

About Steff

  • Rank
    Moderator

Profile Information

  • City
    Moses Lake
  • US State (if applicable)
    WASHINGTON
  • Province or district (if non-US)
    n/a
  • Country
    US
  • Gender
    Female
  • Status
    Not a patient
  • Interests
    travel, pets (my 2 cats), doing things with family

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2,010 profile views
  1. Thank you all - I contacted the drug manufacturer yesterday. They have 2 programs to help pay for the drug, 1 she doesn't qualify for, the other is a process but at least I got it started. We have an appointment with her oncologist on Tuesday and I warned the oncologist that I expect for her to make time during this appointment to discuss further options. It's hard with my mom's chemo brain to get exactly what was said by her docs. But I plan to get to the bottom of it Tuesday!! I am keeping my fingers crossed that the drug company offers her financial assistance and I don't need to
  2. Hi all, I am looking for some help....after 5 years of lung cancer treatments and having ZERO difficulty with insurance (my mom has Medicare and private secondary insurance), we have come to our first road block. It is in relation to her suggested maintenance treatment for her newly diagnosed leukemia. I know that many of you have had insurance issues and I am just wondering how to proceed. Any help is appreciated! Here is the rundown - my mom was successfully treated for Treatment-Related Acute Myeloid Leukemia (yes, her leukemia is from her previous lung cancer treatments, but d
  3. Suzanna, I am happy to hear that your husband's scan showed no new nodules! My mom recently showed GGO in her lung scans and it was attributed to pneumonia. Her docs reassured us that it was likely not related to her lung cancer or leukemia, but they performed a follow up lung scan just to be safe. And it showed that it has nearly all resolved. If a follow up scan has not been recommended in a few weeks or a month, I would bring it up to his team, just to be sure it is resolving on it's own. I missed your original post regarding you as a caregiver allowing your guard down when you
  4. Steff

    my dad

    Hi Lyfe, My mom had a similar situation when she was initially diagnosed at the age of 61 - there was a nodule in her right, upper lobe. She didn't have the luxury of a VATS surgery, she had the regular 'ol big invasive procedure. Once the surgeon removed her right, upper lobe, he saw that several lymphnodes were involved. Unfortunately, he was unable to remove all of the involved lymphnodes. So chemo and radiation were necessary as a follow up. Do you know if the surgeon was successful in removing most or all of your dad's cancer that they could see? Initially, my mom was given the
  5. Saturn_Bound - my mom took Keytruda for about 1 year. During that time, she had to take several pauses due to side effects. One of the first things she developed, about 3 months into treatment was pneumonitis. I believe she paused treatment twice for it while she took steroids to treat the inflammation. These pauses did not affect her treatment outcome - she is still NED nearly 3 years later. While the lower oxygen levels, cough, etc could be due to cancer progression, there can be many other reasons as well - if she has a worsening cough, she may have a pleural effusion (fluid on the lun
  6. Lovemydad- I understand your concern. My mom was initially diagnosed with Non Small Cell Lung Cancer (NSCLC), stage 3a over 5 years ago. She was supposed to just have surgery, a bit of follow-up chemo and move on. Surgery didn't go as expected, they found a much more involved tumor than expected and was unable to remove all of the cancer. So my mom then moved onto radiation and chemo. She did fine. 1.5 years after initial diagnoses, lung cancer was found again and she spent 6 months on chemo and an immunotherapy and then went on to immunotherapy only for about 1 year. This time, sh
  7. Hi Ellen, I'm sorry I am a bit late with my reply...your post resonated with me on many levels. One of the questions you asked was: I just want to know if there’s hope that this will all pay off for him? -my answer is - I don't know. But I do know that without any treatment, the outcome probably isn't good. From the past 5 years of caregiving for my mom with her original lung cancer diagnosis, a lung cancer recurrence, and now leukemia, I have had many of your same questions and concerns. When my mom was diagnosed with her lung cancer recurrence (NSCLC), her treatment plan includ
  8. Steff

    Scanziety.

    Hi Deb, I hope your scan was uneventful today and your doctor appointment is even more uneventful tomorrow. I wanted to chime in about your GI concerns. My mom's severe colitis did not come on until 2 months after she was on a break from Keytruda. The issues were severe enough that it landed her in the hospital. Since she had been NED for about 1 year prior to her break, the severe colitis was the deciding factor to stop Keytruda permanently. If there was a big concern for recurrence at that time, they would have paused Keytruda and administered steroids. She would then start back u
  9. Steff

    Nuelasta

    Babs - my mom just had a Neulasta injector "installed" on 10/31. My mom has low blood counts due to her leukemia chemo regimen. The injector gave an infusion on 10/31 and 11/1. She did not report any side effects from it. And it did work for her, her WBC went from 8.6 to 67.4, but then 2 days later had already dropped to 12.8 (due to the leukemia chemo). So,
  10. HI CitronPearl97, I too am a caregiver, for my mom when she was originally diagnosed with lung cancer nearly 5 years ago. Luckily I got about a year off and I am back at it now that she has leukemia. Caregiving is exhausting, I like that you are taking "me time". I live about an hour away from my mom (when I am not living with her as her caregiver, as I am now). Some ways we keep in touch while I am not there, that do not include a phone call, is an app called Marco Polo. I'm not sure how tech savvy you or your family are, but this app is like a video text message. You record your v
  11. LIn- I am so sorry to hear about your setback. As a planner, I hate the waiting part - waiting for results, waiting for treatment recommendations. Not sure what will come next. Holding patterns do not bode well with me to say the least! I hope you are hanging in there! We are dealing with missing family right now too, like others, I'm sure. Not being able to be around our loved ones makes our situations 1000 times harder. Right now, my mom just wants her family to surround her, but she can't even see her husband who is in an adult family home. It's tough times, to say the least. D
  12. Suzanna- I have experienced the same thing with my mom. And what I have learned over the past 5 years is that my mom is the best judge of what she is physically able to do and what she cannot. I do know that my mom will rely on me more rather than doing something herself, if she can get away with it. In those cases, I typically just say I am busy and she needs to fill her own water glass, etc. I used to micromanage my mom's activity, but it only added to my stress and didn't affect the outcome of her treatments. My suggestion, from one caregiver to another, is let your son decide wha
  13. TNChuck- Hi there. My mom was on Keytruda for about 1.5 years. There were times that she needed to pause treatment and take steroids because of inflammation/pneumonitis. She also developed pneumonia and had some issues with fluid on her lungs. You will want to ask docs about those possibilities - I'm not sure if a PET scan will show fluid on the lungs. My mom's docs usually used a chest CT or xray to determine inflammation and fluid. Despite the pauses in treatment and various issues my mom had during her treatment, she still had a favorable outcome and has been lung cancer free for
  14. AngelL, I'm a bit late to the party, but wanted to echo the welcome you have received from everyone else. I'm sorry to hear about your diagnosis. Unfortunately, it is becoming more common for younger folks to be diagnosed with lung cancer. During my 1st LUNGevity Survivorship Conference, I was surprised to see many people my age (40 at the time). I assumed they were caregivers like me, but I soon realized that they were not caregivers, but the warrior. I even saw someone I went to high school with who has NSCLC. While my experience taught me that it is more common for younger patients
  15. Hi kjaMom, I am so sorry that you have to see your son deal with lung cancer. But I am happy to hear that he has a loving mother like you! I'm a caregiver for my mom who has had NSCLC twice, originally 5 years ago and a recurrence 4 years ago. Watching my mom go thru treatment was tough for me. I'm lucky that she is a good patient and does what she is supposed to. As for what you should do next, I wish I could tell you that. Here's what I did, maybe it will help: I armed myself with as much knowledge as possible about my mom's type of lung cancer and the treatments she was getting.
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