Julie in SoCal

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Julie in SoCal last won the day on April 15

Julie in SoCal had the most liked content!

About Julie in SoCal

  • Rank
    Member
  • Birthday March 19

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  • Gender
    Female
  • City
    Huntington Beach
  • US State
    CALIFORNIA
  • Status
    Yes
  • Interests
    Jesus, Anthropological research, Culture and stuff, Photography.

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110 profile views
  1. Greetings Friends! We have a plan!!! And it's a good one! Next Tues afternoon I will start my first (of four) rounds of a chemo combo (carboplatin and pemetrexed). The thinking is that this is the treatment that makes treating two cancers comparatively simple. It's quick (only 12 weeks) and very well known. After being in the land of amazing new medicine, it is strangely comforting, knowing that there shouldn't be any mystery side effects to deal with. After chemo I will start 35 or so sessions of radiation. Then Larry the lung cancer will have been cut, poisoned, and burned. This has been one long, scary roller coaster ride and I've hated waiting to figure things out. But this waiting time has given me opportunity to think and pray about what I want in treatment. It's easy to say that I want to be cured (and my 23 year old body back as a side effect). But it's much harder to figure out what I'm potentially willing to give up. This extended time has helped me figure this out. And I'm so grateful. Shalom, Julie
  2. Thank you Snowflake! This is encouraging to hear. Your signature tag lines are also amazing! Thanks again, Julie
  3. Thanks all. I'll let you know what the Doc says on. Monday. shalom, Julie
  4. Yes, this sounds like another version of blame the patient or maybe a more "sophisticated version" of sell healing to the vulnerable. Maybe I'm more sensitive to this than others, but I hate it when people hear I have lung cancer and then ask if I smoked. Now I get the connection, but why would anyone ask. We wouldn't ask a breast cancer patient if they nursed their babies! How is it socially ok to ask if I smoked? Because if I smoked then in the mind of the theoretical asker, I could be blamed for my lung cancer and if I sun bathed, I can be blamed for my melanoma. And since the asker theoretically didn't do these things, he or she will be ok. Yes this is dog wash. So, with Respect to Mitch the above poster, what do you intend with your post? Are you selling us healing? Blaming us for our illness? What's your connection with cancer? Are you free of psychotraumaic stimuli? Or are you posting a service? And by the way, no, I didn't smoke or sun bathe! Julie
  5. Hey Cheryncp123, I've been doing this cancer thing now for almost 10 years (I have another cancer life- Melanoma 3c, so I've been doing this for awhile) and it gets me every time. Scans, treatment decisions, transitions, yup all of them send me to crazy town. So I pray and bleed my heart out to the One I know cares more than anyone. I also intentionally plan fun things with friends. My friends know I go crazy before scans or decisions or any transition time, so they're happy to provide a temporary distraction for awhile. I remind myself that I have many people who I love and who love me. I also use the "trip to crazy town" as my friends call it, it to help me figure out what I want. Yes, I want to be healed, truly cancer free with my 23 year old body again (HAAA!), but often the crazy talk in my head is also telling me something else. I think I'm just returning from crazy town. Right now I'm trying to make treatment decisions and, while they're an educated guess at best, I'm complicated because of two active cancers, so figuring out the way to go is complicated (and of course seems to have taken a long long time to make this decision). But as I reflect on the decision making process, I've realized what I want in the treatment. I've figured out my priorities and what I'm comfortable risking. At the beginning of this I didn't know what priority I put on things. I couldn't answer the question, "what do I want" with more than "to be healed". This is a given. of course I want to be healed! But how much quality of life am I willing to give? If I am completely deafened (I am near deaf, now) is this ok? If I can no longer walk because of inflammatory arthritis everywhere, is this ok. What am I willing to trade? Wrestling with these questions and coming up with some kind of squishy answer has been huge. The decision is still coming (we'll decide on Monday) but I have found peace with it. Or at least for now, I'm not on the indefinite loop riding around crazy town in my head--off ramp found! And this is huge. So I guess my strategy is to : Acknowledge God plus nothing is enough because I was loved before I was born! (I think of this as taking God to crazy town with me). Be good, kind, and gentle with myself. Lean into my friends Listen to hear if I'm telling myself anything in the crazy and learn from it. Be good, kind and gentle with myself and tell the committee in my head that I've heard them so "thank you , you can shut up, now". Continue being good, kind and gentle with myself and love others. I wish you peace (and an appropriate off ramp) Shalom, Julie
  6. No. I can call and text, but there's no direct way of reporting all this strangeness. I'll see him on Monday, and will definitely ask him about it. Just wondering if this was normal.
  7. Glad to help out! This survey is easy, and took less than 10 minutes. DO IT!! Shalom, Julie
  8. Greetings Friends, I'm a month out of successful VATs lobectomy (upper left lobe). I still have the weird tight feeling in my ribs, and a bit of sensitive skin below my ribs. These I understand are a result of the chest tube and will eventually go away. What I don't quite understand is a pain I have between my shoulder blades. I'm assuming it's VATs related, yes? Sometimes it hurts a lot (like now) sometimes not at all. Am I doing something to aggravate something? Thanks for your help, Julie
  9. I had about 24 treatments of Keytruda and found that the tiredness and wretched "flu like symptoms" go away after a few days to a week. The only thing that I found was cumulative was the joint aches and pains and I wish I had gotten on that sooner (hindsight!). Watch for a GI issues that don't stop, a brain piercing headache, and joint pain. And of course complain, err, I mean tell your mom's medical team about everything. I'm not sure how long they'll wait to scan your mom. but Keytruda often presents a pseudo-progression at first. So on early scans it looks like the tumors are growing. This is alarming, but fairly common for Keytruda. I have no idea if this is medically correct, but I've envisioned my immune system attacking the tumor and surrounding it, thus making it bigger. So I'd guess that they'll wait a little while 4-6 rounds before thinking about scanning. Shalom, Julie
  10. 60% positive for PDL-1 is a good thing as you'll have options for immunotherapy in both Opdivo and Keytruda. This is really good news! Shalom, Julie
  11. HI there! I had Keytruda for almost 2 years in another cancer life. I found the side effects very manageable. The first few days afterwards I would be tired and have those dreaded "flu like symptoms" achy, and just not right feeling. But then after a few days I'd be fine again. I worked throughout my treatment, and traveled sometimes. I have friends (in my other cancer world) who stopped keytruda because of side effects but then found that it went on working. Because keytruda uses your immune system, side effects are different for each person. So it's difficult to get a what's normal on the drug. But the key is to be in close contact with your doctor, and don't let anything get out of hand. If something seems alarming (joint pain, headache, GI issues) give your team a call. There are ways (usually steroids) that will help. As I understand it, a low tumor burden is good for keytruda. It also takes a while to kick in, and your mom may have a psudo-progression where it looks like her tumors are growing,but it's really just your immune system attacking them. So you'll need to give it time and be patient with the patient. Hoping and praying that Keytruda does it's work for your mom! Shalom, Julie
  12. Hi Jan, I've used three different drug assistance programs and all three were run by the pharmaceutical company. All I had to do was apply, send in the paperwork and my co-pay was drastically reduced. Try the Xalkori assistance website. The other resource I've used is the hospital's support staff. The hospital I go to has a staff person who is familiar with various copay assistance programs. She was the one that has introduced me to the various Pharma programs. Hope this helps. These drugs can cost an arm and a leg, Shalom, Julie
  13. Hi Lbelle78, I have had Opdivo's twin, Keytruda for melanoma. I was on it for almost 2 years and watched my tumors shrink away (that was pretty cool!). Unfortunately my LC doesn't respond to PDL-1 (or Keytruda would have killed it off in the melanoma war). But I digress... I had a fairly easy time with Keytruda. I was a little tired and achy (flu like symptoms) a day or two after the infusion. Sometimes I had a headache, and my joints would hurt. But after a few days I was back to my regular normal self. I was able to work and if I timed it right, travel. The thing I learned pretty quickly is to report everything that was out of normal for me to the nurse. They were a wealth of information and help in dealing with the treatment. The other thing I learned is that it takes immunotherapy drugs a little while to work and it's possible that you will see pseudo-progression, that it it looks like your tumors are getting bigger rather than shrinking - that's your body at work killing those suckers! - before the tumors start to melt. Be patient with the patient is what I've heard. So prepare yourself for the long game, and not necessarily the short game. In melanoma land, I have melahomies that did not respond to a PDL-1 drug (Opdivo or Keytruda) until months after they stopped the drug. But they've had complete response. May you too have a complete response with minimal side effects. Hoping Opdivo kicks your LC to the curb! Shalom, Julie
  14. Thank you BridgetO and Tylalla and Susan! I appreciate your advice! I'll check out the links. I think I'm most concerned about the radiation. I've done chemo-like drugs before (various immunotherapies for melanoma) so I've managed the sfx of fatigue, and nausea, and the like. But radiation is a whole new world to me. And to be honest I'm not keen on it. I've seen a friend's experience with radiation and radiation burns and it wasn't pleasant. Don't get me wrong, if the Rad Doc presents a reasonable case for it I'll do it, but it freaks me out and it's gotten into my head. So there it is- I just don't like waiting and I want this whole thing to be resolved and over, done, and forgotten. Enough said. Thanks for listening, Julie
  15. Thanks Tom I'll take a look. Here's the link: 10 Steps to Surviving Lung Cancer Julie