Jump to content

DMaddox

Members
  • Posts

    15
  • Joined

  • Last visited

Profile Information

  • City
    FISHERS
  • US State (if applicable)
    INDIANA
  • Country
    United States
  • 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. Hi Jill. When I was first diagnosed and came to this forum, I found these folks really helped me. So much HOPE I had no idea was there! My cancer was found because my arm broke while working in the garden, so already stage IV. Amazingly, treatments have gone well thus far and, even though I'm still in the battle, I feel pretty well overall and I'm still working full-time. I would encourage you to continue checking in here with questions and to get a good dose of encouragement every time you need it. I found this forum to be such a positive influence and one of the reasons I've been able to keep my outlook so hopeful after this crappy diagnosis. Best wishes on your upcoming biopsy and keep us informed as you can.
  2. After posting my own health update today, I went looking for Terri's profile updates to see how she was doing as she and I had messaged privately many times a few months ago and I had thought about her often. I am so sorry to hear of her passing. Beautifully written tribute, Tom. She will certainly be missed by many here. Continued prayers to all who knew personally.
  3. Hi everyone! Just wanted to update you on my journey. Back in September of last year, I got the "you're in remission" title and wore it proudly. Sadly, it did not last long. My scans in December were great. In April, not so much. I had a noted recurrence in a hypogastric lymph node and a tiny tiny spot in the right lung. This was a recurrence on Alimta and Keytruda as I was still doing maintenance therapy. My doctor "fired" the Alimta and kept me on Keytruda to date. EGD, biopsies, and several scans later, radiation and continued immunotherapy was the recommendation. I did 15 sessions of RT to the lymph node and now we await the next scan, which should be in the next month or two. The interesting thing to me about all this is that my cancer "morphed" from its original state into something new. What I mean is, and I am sure you long-time survivors already know all about this, is that our cancers can morph into new genetic forms such that targeted therapies may be available. My original cancer was run of the mill lung CA with no biomarkers whatsoever. This new morphology had potentially treatable biomarkers! No newly approved immunotherapies on the market for my particular biomarker but two current trials of three in the country are being done right here in Indianapolis where I live and one of them at my local hospital where I'm being treated! All of my cancer metastases have been tiny (with the exception of the broken arm area). In my lungs, they've all been less than 1.5 cm. I still marvel about the fact that something so small can cause such devastating destruction. My doctor says this recurrence does not really affect my 5 year survival chance. I'm already a year in and, quite frankly, I feel quite well most of the time. I'm slower. I need breaks. I take naps. I'm still working full-time. I got my garden in this year, bigger than ever before. I guess my advice is keep on keeping on! New treatments are being discovered and trialed every day. We are fortunate to live in an age where there is hope for stage IV lung cancer. Everyone around me seems to think I'll be here for a long, long time. Do I sometimes get discouraged? Of course. But, the unpleasantness of the side effects of certain therapies is short-term and perhaps other treatments can be done if one treatment is too uncomfortable to continue. I just encourage all of you newly-diagnosed folks to hang in there. Be your own best advocate. Let these well-informed folks help guide you to options you (or your current doctor) may not have thought of. Treatment really is just a moment in time and better days are ahead. You must continue to think positively about your outcome - that really is half the battle! Best of luck to you all. I will update on my journey when I have more information to share!
  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...

Important Information

By using this site, you agree to our Terms of Use.