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Steff

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Steff last won the day on September 22 2020

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  • 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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  1. Lisa - I am happy that you got your hip surgery figured out with insurance. I get so frustrated when I have to advocate aggressively for my mom to get the care she needs. If it weren't for my advocating, she probably would have succumbed to lung cancer 3 years ago. I feel bad for folks who don't have an advocate to help them navigate our complex medical and insurance systems. My mom was too sick to research and think about how to solve the problems she has had along the way. I really noticed the lack of good healthcare my mom had while in the hospital during the month of December. No visitors were allowed so all I could do was call and check in with the nurses. My mom was too sick and too doped up on Oxy to talk to me or ask about what meds she was getting/etc. Nurses were so overworked that they were unable to assist my mom to the commode. They ended up telling her to just go in the bed. How humiliating is that?? Sorry for the rambling....as you can tell, this is a pet peeve of mine!
  2. Just a quick update - my mom received her prescription yesterday, no cost to her through December. Thankfully the drug company has a program like this. The company was really easy to work with and very responsive. Unfortunately though, my mom is already out of remission from leukemia, just 3 months after treatment. Currently, she has 3 treatment plans, the first being the drug she just received. So it's a good thing she got her pills! If I can give 1 piece of advice for anyone dealing with insurance denials for prescriptions, start with looking into the drug company. The drug's website will probably have information if they have a program to help with paying for the drug. If not, call their customer service/patient program. I found this was the quickest thing to do, concurrently I was contacting my mom's insurance company, but that process was going to take much longer. So I went with the quickest and easiest - the drug company. We had approval within a week and the drug delivered to us the following week. We would have had it even quicker if the drug didn't have to come from a specialty pharmacy. I would still likely be fighting insurance if I began the process with them.
  3. 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 battle Medicare! I will let you all know what I come up with. Thanks again!
  4. 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 don't worry, we have been told that leukemia related to lung cancer treatment occurs in less than 1% of cases). Luckily, she has been in remission from her first induction treatment. Unfortunately, she does not qualify for a bone marrow transplant because she needs oxygen to exercise (darn that lobectomy!), but she has a mutation that has a targeted therapy. While this targeted therapy is typically taken with initial chemo to help with remission, her prescribed treatment is for maintenance, after treatment has ended. This is a relatively new way to try to keep a patient in remission and apparently can be quite successful. Long story short...even after appeal, Medicare (and then ultimately the secondary insurance) has denied the drug. Their reason is because she will be taking a larger dose than normally prescribed and for a longer period of time. Again, this isn't a typical use for the drug and I am not finding that there is a similar clinical trial for her to take part in. Unfortunately, all of the trials are for folks who are in initial treatment, unable to reach remission, or have relapsed. At this point, my mom does not fit into any of those categories. Do you have any advice on how to try to get insurance to approve a life-saving drug to be used in an a-typical fashion? Thanks in advance for your help, Steff
  5. 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 your husband was declared NED. I have been caregiving for my mom, off and on, for the past 5.5 years. Her bouts of lung cancer (original diagnosis and 1 recurrence) required me to mainly advocate rather than give her fulltime care. But since her leukemia diagnosis in September, I spent a full 6 months of caring for her. I moved in with her and we spent about 3 months in the hospital. While I thought I was exhausted during my mom's lung cancer, I unfortunately found that I did not know what exhaustion was until my mom's leukemia. Spending all day either in the hospital or caring for her at home, as well as, working full time in a very stressful job during COVID times seemed un-survivable at times. I now know what exhaustion is! I am not sharing this for your pity or to try and compare my situation to yours...my point is that you HAVE to let your guard down sometimes. Celebrating NED and beginning to move onto the next phase in life is a part of the roller coaster. You NEED to give your brain an emotional break from cancer by letting your guard down. Letting your guard down does not mean that you won't be prepared if your husband has a recurrence or if there are severe side effects from his ongoing treatment. In fact, I have found the opposite to be true. The times that I let my guard down enabled my brain and body to be ready for the next fight, whatever that may be. We must allow ourselves to rejuvenate. Now, I stay away from telling caregivers to take care of themselves...you need to do what you need to do. But allowing yourself to LIVE and enjoy LIFE with your husband still allows you to do your caregiving duties, but also allows your mind and body to rejuvenate. So, if I could give you 1 piece of advice it is this - let your guard down! LIVE! LOVE! HAVE FUN! Take Care, Steff
  6. 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 choice for chemo as a follow up to treatment just to be safe - to clean up any lingering cancer cells, but after the surgeon wasn't able to remove all of the cancer, radiation and chemo were necessary. I understand the concern and stress you are feeling about your dad. When cancer hits our family, we automatically wish for more quality time. The good news is that at least in the US, lung cancer has much more positive outcomes than it did 5 years ago when my mom was initially diagnosed. At the time, she only had a 34% chance of living for 5 years post diagnosis and here she is living her life in spite of cancer. We just spent the weekend together and took an online paint class. We laughed and made fun of one another. You can make those same memories with your dad. Yes, lung cancer has changed our life, but it doesn't define who we are. If I can make one suggestion to you in this situation, I suggest to arm yourself with as much knowledge as you can. LUNGevity's main website is a great place to start. Learn as much as possible about the type of lung cancer your dad has and the current treatment he is receiving. Your advocacy is needed, whether he is in China or the US. We are not our own best advocates when we are feeling sick or down or with chemo brain. It is very helpful to have someone who can attend doctor visits along with your dad so that the proper questions can be asked and to relay any needed information about side effects, etc. If you are unable to attend in person, find someone who can or request that you participate remotely. I'm not sure if any of this helps, but do know there is HOPE. We cannot predict our futures and how long we can live, but we can affect how we live today. Take Care, Steff
  7. 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 lung, which my mom had 5-6 times), or allergies, or a number of other non-life threatening things. You are doing the right thing in reaching out to her docs so she can be seen sooner than later. These bumps in the road are an all too often occurrence that so many have to deal with. My mom had many, many bumps in her journey but it did not affect her outcome and almost helped her appreciate life even more. Hope this helps a bit. Take Care, Steff
  8. 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, she struggled with infections, so chemo was harder for her, but she recovered and got her life back. According to my mom's oncologist, chemo for lung cancer isn't as harsh as other types of cancer. Yes it can kick your butt, but it is survivable. Docs are used to helping their patients manage side effects. In fact, my mom continued to be my dad's caregiver during both of her lung cancer bouts. She knows a little about harsher chemos too, she just finished with one of the harshest - to treat the leukemia she was just diagnosed with in September. She went through 3 bouts of intense chemo to completely wipe out her immune system and bone marrow. It was tough, but she survived and is getting her life back again. So, anything is doable. I know that you are probably looking for hope. It's normal to feel hopeless when this is all so new. One of the best things you can do is to educate yourself. A good place to start is LUNGevity's main website. There is great information for both patients and caregivers. The website walks you through initial diagnosis, then to treatment options, and then onto recovery. It can give you some great questions to ask your dad's doc when he gets his official diagnosis and then when he gets a treatment plan. The website became my best friend when I was helping my mom navigate her diagnoses and treatments. I want you to know that there is hope. We've all been in you and your dad's shoes and we all have come out the other side. Some of us are more scarred than others and some of us are still fighting. But we are all LIVING!! I know you want to know what is coming next, but it is hard to say until he gets his diagnosis and treatment plan. Testing for lung cancer often includes a pretty simple biopsy, blood tests, and various scans. None of these are really major. He will likely be given anesthesia for the biopsy, but it is typically just a day surgery. All of the other tests aren't as invasive. Once those results are back, he will be given them and will then discuss treatment options. Some people ask how long they have to live, but the reality is no one really knows. The fact that others have survived this disease means your dad can too. Advanced treatment options enable patients with late stage diagnoses live their lives for many years. Just take one day at a time and one step at a time. That is all we can do. Hope some of this helps...take care, Steff
  9. 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 included Keytruda + Alimta + Carbo. She had a rough go with it. In August of 2017, she spent 2 weeks in the hospital with pneumonia, infection, C-Diff, and fluid on the lung. There were times that I thought I wouldn't be taking her home. Despite having a chest tube, fluid continued to build up and her breathing was labored. It was very scary, but she pulled through. Your dad can too. During the nearly 2 years of Chemo + Keytruda (only the first 6 months with chemo, the rest with Keytruda alone) she had to take pauses between treatments because of the side effects. If I recall correctly, her longest pause was 3 months - due to pneumonitis. It's not uncommon to need to take pauses in cancer treatment. In my mom's case, these pauses did not have a negative effect on her treatment outcome - she still continues to show no evidence of lung cancer. While I understand that your dad's docs do not want to continue with Keytruda right now, if I were you, I would discuss the possibility of trying it again once he fully recovers. None of the side effects that you are reporting necessarily points to Keytruda side effects. His hip pain may or may not be related, especially if he had hip pain before Keytruda. If his docs do not want to continue with Keytruda, I would request specific reasons why. I am saying this because Keytruda can have very positive results. Because Keytruda is a new treatment within the past 5 or so years, docs sometimes want to blame everything on it because they don't have as much experience with it as chemo. I can tell you that my mom did have to permanently stop Keytruda due to severe side effects - after about 18 months of taking it. She ultimately stopped because she had severe lower GI inflammation. Since she had been NED for over 1 year, her docs decided to stop treatment and see what happens. Thankfully, her lung cancer has stayed away and she celebrated her 5 year lung cancerversary in December 2020. I wish I had a crystal ball to tell you what to expect with your dad. I can say that the bad times got better with my mom and were luckily just a bump in the road. I am hoping that this is just a bump in the road for your dad. I'm not sure if you or other family are allowed to be with your dad while in the hospital (our hospitals are closed to visitors), but your dad really needs an advocate to make sure he is getting the he deserves and is paying for. Some one needs to be his voice and demand top notch care. During my mom's last hospital stay, over Christmas, she was not able to have visitors due to high COVID numbers in the community. She was in the hospital for 3 weeks and she often had to wait over 20 minutes for a nurse to come and allow her to use the bathroom. The excuse was they were overrun with COVID patients and short staffed on the Oncology floor. She was taken off meds she shouldn't have been. Without my advocacy and watching over her, she was out of her mind on Oxycontin that they were giving her for a headache!! It took 4 days for me to make them take her off of the Oxy and give her something else for the headache. My point is that now more than ever, we need to advocate for decent care for our loved ones. Sorry for my long post, my point of it is to hang onto hope. Take care, Steff
  10. 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 up Keytruda to see if the colitis reappeared. I cannot remember if you were one who was receiving a larger dose less often, but there is something to be said about increased side effects and larger doses.
  11. 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,
  12. 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 video and its sent to your brother/sister-in-law and they are able to watch it at their own convenience. I used to do this in the early mornings so my mom would have a wake-up message. It brightened her day a lot. It's free and pretty easy to use. We also use Zoom, but you need to schedule that ahead of time so both parties can attend. It just helps so much to hear AND see a face. I also send cards/notes - nothing I buy, but something stupid I make. Or just a sticky note. My goal with these is just to brighten her day. I don't expect anything back, but my mom did get Marco Polo figured out and she usually sends me a video back. We laugh about the fact that I can only see the top of her head half of the time and the other half I can only hear her because she has the camera messed up. But we are having fun with it! I've never used this, but have recently seen instead of meal trains, gift card "trains" for meals. Because of COVID concerns, instead of people bringing over actual food, they send a gift card for a restaurant, grocery store, online store, etc. The idea is that the family can order a meal or ingredients when they need. This could be a help for your sister-in-law on those days she doesn't feel like cooking or can't get to a store. I like this idea better than requesting for funds for food via Go Fund Me because Go Fund Me charges a fee when the organizer accesses the funds. You can be 100% supportive from a distance, you've just got to be creative. And although a virtual hug isn't as great as an actual hug, for those of us who care-give from afar, it's the best we can do and is always appreciated. Take Care, Steff
  13. 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. Do know that we understand what you are going through and can empathize. Take Care, Steff
  14. 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 what he feels up to that day. Doctor's can say what they think he should be able to do, but everyone responds differently to treatment. If his inactive-ness turns into an ongoing concern for you, that is when I would step in a say something. In that situation I would be more worried about depression taking over than just being inactive. And please remember, this is temporary.
  15. 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 a little over 3 years. While you may read that immunotherapy is active for about 24 -26 days, that doesn't mean that the immune system isn't still working overtime. Pauses in immunotherapy treatment is common, so don't worry about it too much, if your mom has to take a break. I hope they can find what is causing your mom's shortness of breath quickly so they can treat it and she can get back to feeling better. Take Care, Steff
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