Jump to content


  • Posts

  • Joined

  • Last visited

Profile Information

  • City
  • US State (if applicable)
  • Country
    United States
  • Gender
  • Status
    Lung cancer patient/survivor
  • Interests
    Art, Music, Reading, Family, Gardening

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Mihn - I bought my insurance through the Affordable Care Act online through the govt. It is based on income. If you fall below a certain amount, the govt kicks in a subsidy and then I also contacted Wellfund through Community who picked up my portion of the premium (again due to low income). If it comes down to it and you lose your health insurance, the State of Indiana will step in at that point and you can apply for HIP through the state. Monthly premiums for the ACA are income-based and you'll have your choice of many different options. I went with a company called CareSource and, thus far, they've been very good to me. You will also choose your deductible and your out-of-pocket costs. I applied for financial assistance through Community and received a percentage relief of my overall out-of-pocket costs (again, based on income level). Preconditions cannot be a factor in health insurance in the US so long as the ACA is still the law of the land. I believe the ACA outlawed max coverage amounts too, but I'm not as certain about that one. If I were you, I would contact someone at WellFund (https://www.ecommunity.com/healthminute/2020/wellfund-standing-you-through-care-and-costs) and bend their ear a little as far as what you are facing and see what they would suggest. They are the experts in coverage. Again, it will all depend on your income level. If your employer lets you go (if that is even legal), then you can contact the Healthy Indiana Plan (HIP) about what to do next: https://www.in.gov/fssa/hip/
  2. Minh - You have really been through the medical wringer for sure! Yes, I've had all my treatment and exams at Community North on 82nd except my initial arm surgery (my lung cancer was discovered by a broken arm/pathological fracture to the humerus). I travelled to St. Francis Mooresville for that surgery because my oncologist wanted me to be seen by an orthopedic oncologist so he could get tissue samples before he put the rod in my arm. My situation was a little different because when the break happened, I did not have any insurance. My kids did a GoFundMe and got insurance but it wasn't effective until the next coming month so from 4/9 until 5/1 I had no other medical treatment, (and lived with my broken arm), other than a visit to an orthopedist who confirmed this is most likely cancer (of some sort) that caused the fracture and an MRI. But, by 5/1, it was all systems go and I've had visit after visit after visit. I had bronchoscopy to sample the nodes (they couldn't get to the actual cancer and it was tiny at only 1.2 cm). Got my PowerPort for chemo. Had my arm fixed finally on 5/18 and radiation shortly after that. Started chemo in June. Seemed like things moved pretty quickly once the insurance was in place. My experience has been that things move pretty quickly at the cancer center - maybe not so much elsewhere in the system - but pretty quick there. You might give them a call or have your primary physician or doctor from MD Anderson make that call. I was once seen same day I called when they discovered the blood clots in my lungs, which is practically unheard of in a specialist's office. So far, I couldn't be happier with the treatment at Comm North for sure. I pray all of us well as well!
  3. Minh, I'm a fairly newly-diagnosed Stage IV lung cancer patient (diagnosed in April 2021) so I cannot offer you all the wonderful advice and knowledge that all these many folks with years of experience and survivorship can give to you but I noticed we live in the exact same town in Indiana. I am curious, though, why you are traveling down to Texas for treatment when Community North is partnered with MD Anderson for cancer care. We have absolutely awesome doctors right here in our own backyard that have been trained at MD Anderson and do treatment boards with them on a weekly basis to discuss patient's cases. My oncologist at Community is Dr. Bhatia and he is one of the best around our area. You can get treated locally with all the support and knowledge coming from our local providers as well as MD Anderson Cancer Center. Just thought I'd throw that out there. It would certainly save you time, money, and effort to be treated locally with much likely the same suggestions for treatment and likely outcome. DeDe
  4. I met with my oncologist today and, much to my surprise, he says my cancer is already in "remission." I said, but I've got a 3.7 SUV in my right arm. He said he will never say the word cure but my scan was fantastic and that the cancer will "always be there" but he considers my results in remission. He is moving forward with the maintenance therapy - says I'll stay on the Alimta as long as I can tolerate it and Keytruda for 2 years. They'll PET scan every 3-4 months at first to watch for progress or regress and make further decisions down the road. Still quoted the 35-50% of folks at this moment make it to 5-years but went on to stay with all the emerging treatments on the horizon that he is beginning to consider stage 4 lung cancer more of a "chronic disease" like diabetes than a certain death sentence anymore. He says there is a lot of reason for hope and to stay the course, especially since I've done so very well with only four treatments so far. So, today, I had my first maintenance therapy and will keep on keeping on! Thank you all for the encouragement. I mentioned this forum to him and that so many of you are long-term survivors. He laughed and then went on to say if I had told him that I joined a lung cancer survivors group online 15 years ago, he would have told me I was certainly the only one there. But, now, it is a different story. He was thrilled I found this group and that we all have such hope for the future. Again, thank you all.
  5. Thank you all! I'm so very excited with these first response results! I burst into tears of happiness. Now if these blood clots would go away so my mobility would be better, I'd be on cloud 9. Whoever thought someone in this position would say that? LOL! Your support and kind words mean everything to so many people who sign on to this forum and have to deal with what we have all been through/and will go through. I'm so glad I found this place! Again, thank you all!
  6. I wondered about the carboplatin and how long it can be given. The original plan is to do maintenance for 2 years so hopefully with my SUV numbers being so much better and the nodule responding as well as it as, along with the much larger area in my right arm, the treatment I'm getting will be all that is needed. Hope your doctor's appointment went well! I've been thinking about you.
  7. LexieCat - The results of my scan were very positive. The lung nodule has decreased from 1.2 cm to 4 mm. The adenopathy in the lymph nodes has "mostly cleared." The uptake in my right humerus (the pathological fracture spot) went from 15.7 to 3.4. No cancer seen anywhere else. I'm happy with these results after only 4 treatments with the triple drug therapy. I'll find out next Monday what they plan to do next. I'm hoping for 5 more radiation treatments to my arm to hopefully lick that spot and I'll just have to wait and see what they say about going to maintenance versus continuing triple drug therapy. I'd almost like to do the triple a couple more times before moving to maintenance. Hopefully since there has been this much improvement already, they won't want to change the regimen. I can't see any reason they would specifically want to at this point but, as we know, I'm just guessing in the wind. I hope your scan had great results too!
  8. Wow, Lexie, such incredible information. I am blown away by the things medical science can do in these days. How exciting! Thank you for taking your time to explain all of what you have been through. It sure does a newly-diagnosed person a lot of good to read there are so many options available for treatment these days. My oncologist said, right after saying you have stage IV lung cancer, is "This is not a death sentence." He said 15 years ago, he would have told someone in my shoes to start getting their affairs together but not anymore (not that that should be overlooked and/or set aside by any means) but just the fact that there are options. I don't even know my TNM, I'm embarrassed to say. I have vanilla NSCLC with no identifiable mutations as well. I'll be thinking of you next Tuesday when we both get our scans Here's hoping we both get good news!
  9. Quick ?, Lexie, how quickly did they notice your cancer progression on the maintenance? Do they set up routine scans once you move to that type of therapy? Also, I assume your doctors stay up on all these clinical trials available or was this something you sought out on your own and went for? I hadn't thought that far ahead in the process yet. I know you said your scan is next week too - I'll be praying you find the trial has worked marvelously.
  10. I have not applied for SSDI yet. I've worked every single day, even the day I broke my arm and all through the rest of this mess. Unfortunately, my husband (well ex-husband now - of 35 years - so he could obtain insurance through the state to get a life-saving operation done because we are both self-employed and could not afford insurance on the marketplace) has been dealing with a degenerative back issue, hasn't worked in three years, and has applied for disability (denied twice but we have an attorney) so I'm the only source of income. I have to work and disability won't come even close to my present income. Thankfully, I work from home and have 24 hours to turnaround my work so I somehow make that happen no matter how punky I may feel. I can tell you, it was definitely interesting trying to type medical records (I am a medical transcriptionist) for 7 weeks with a broken arm Can one earn money while on SSDI? I truly have no idea.
  11. Hi y'all. I have lurked but hadn't posted yet. All your information has been so helpful to me already. A little back story - in April, I was working in my garden, lifted a bag of mulch and my right arm snapped in two. ER doc said broken right humerus and put me in a sling. Saw the ortho doc who said there was more to the story. The entire cortex off the back of the bone was gone. He said this was a pathologic fracture, probably cancer. I had no insurance (stupid U.S.A.) so a GoFundMe was set up by my kids to get me into a doctor to find out what was going on. Long story short and lots and lots of tests you all have had too, it was stage IV lung mets to bone (1.2 cm nodule in left lobe). Cancer center got me set up with ACA with GoFundMe funds funding my portion. Got a rod in my arm 7 weeks after breaking it, did radiation to the arm, and started chemo (Keytruda/Alimta/carbo) in June. All has been going relatively well. Doc said 4 treatments of the 3-drug therapy then re-PET scan to see where we are and 2 more years of maintenance therapy with Keytruda/Alimta. (Genetic testing was done on my biopsies and I had no identifiable markers). I just finished treatment #4 and was having my usual horrible lower intestinal problems with the side effects but also thought I might have a UTI. Stopped in to the local urgent care to see if indeed I had a UTI, and doc decided I had an acute abdomen and did a CT scan w/ and w/out. Technician came in and said radiologist saw something in my lower lung he didn't like and they would be doing a CT scan w/ and w/out of my chest too. Turns out - 3 pulmonary emboli, two in each base and one in the right upper. I had no "symptoms" per se. I mean, doesn't lung cancer cause one to be short of breath sometimes? I was, unfortunately, a long-term smoker so perhaps I don't notice shortness of breath like others might and I work a very sedentary job. My question for you is this - I'm told cancer and chemo both can cause PEs. Have any of you dealt with that? They wanted to admit me to the hospital, which I flatly refused. I mean, I came in there for a UTI, which I did indeed have. They gave me Lovenox. I got Lovenox the next day at the cancer center and now I'm on Xarelto. I forgot to ask the doc, since I will be doing maintenance chemo for 2 years, if I will have to stay on this thromboembolic most likely the entire time. I'm guessing I will. Have any of you experienced this? I will say this, the one thing that did not show up on the chest CT w/ and w/out of the chest was the 1.2 cm cancer nodule that started this entire thing in motion. My oncologist noticed that too. My PET CT is scheduled for 9/7/21 so I'll know next Tuesday if it still lights up or not and if the cancer is gone in my right arm. They are telling me not to worry about the PEs and that they are common in cancer patients. Take my medicine and seek attention immediately for severe shortness of breath. Just wondering if others have dealt with the same kind of thing.
  • Create New...