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My updates (22 Years old, NSCLC)


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Does anyone look at their scans or just read the findings and try to understand it? I just read mine and found out that everything is just worse 😔. I really hope this targeted therapy does the trick. Reading these things got me really worried about my health.. 

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Ale, I always try to schedule my scans for the day before my visit (at a Penn Medicine location, when I was being treated there). Mainly because it’s impossible to glean from the radiology report exactly what is going on with your cancer. Radiologists can point out what they observe, but they aren’t cancer experts. Your oncologist will have to “translate” them for you and discuss treatment options.

I know if the report is there on the portal it’s hard not to look. But you can ask your doc either to hold them until they’ve been discussed with you or try to time your scans, as I did, to eliminate a long wait. 

Try to cool your jets till you’ve seen the oncologist. And remember, there may be some clinical trials for which you’d be eligible. I’m smack dab in the middle of one right now (posting from hospital bed). So far the chemo to deplete my immune system has been a breeze—just a bit of swelling from all the fluids. Next week may be rougher because as soon as they infuse the new cells I’ll get several infusions of IL-2, which apparently makes a lot of the patients pretty darned sick. I will be in ICU for that part of it, just to be safe. If this doesn’t work for me, there are other treatments I can try, including other trials. So don’t give up hope.

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I’m actually going to be getting the targeted therapy if it’s approved by insurance which seems to be more of a trial since it isn’t used in treating lung cancer. I saw my oncologist about the scans already and they weren’t good but he only told me what he was able to read and it wasn’t good so when I saw the report I can tell everything else wasn’t good either.

Im glad to see your hanging in there with your trial and I really hope it does good for you. Hang in there! 

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Ale, I rely on the Impressions section of scan reports, but you've already gotten your oncologist's analysis, so s/he knows best. Let's hope your insurance approval comes through quickly so you can start your targeted therapy. 

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Judy’s right—pay more attention to what the oncologist says than the radiology report. You can also always get a second opinion on treatment options. Hope your insurance comes through fast.

And thanks for the well-wishes for me. One of the research nurses put me in touch with another woman who is starting this same trial next week. We agreed to exchange numbers and finally connected today. We may be like two ships passing in the night—her arrival will pretty much coincide with my departure next week. But still, good to have a buddy to compare notes with. She was very interested in this group too, so I sent her a link to the forums.

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Ale,

Lexie is spot on here.  Contact your oncologist and get clear information so that you can get away from any interpretation and onto solid conclusions.  It may still be bad or perhaps better than you thought, but at least you'll know exactly where you are and then you can ask how the new treatment is expected to be effective under the present circumstances...  You need hard data and that seems lacking right now.  Best of luck to you on this.

Lou

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I believe it’s infused like normal chemo is. I really don’t know much about it so I’ll be asking questions tomorrow.

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Hey all, 

Treatment with the new drug starts today. I found out it’s called enhertu and it targets the mutation in my blood to kill it off or put it under control. Let’s hope it works and does the trick! 

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Hey all, 

Treatment hasn’t been too hard on me. It’s actually a lot easier than the chemo definitely was. I’ll be on this for 4 infusions so I hope it works, I feel as it will but let’s hope. I’ve been having a lot of nausea last 2 days, I’ve been taking compazine but it hasn’t worked that well. Any other remedies for nausea? I could definitely use it. Doc said it’s the disease causing it but I feel like it’s left over symptoms from chemo. Thank you all, much love and luck to all. ❤️

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Ale,

I just had surgery and there were two drugs they needed to use for me to stop nausea.  Zofran was one and within a minute after going into my IV I could feel the nausea leave.  Please ask for it?

Lou

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  • 2 weeks later...

Hey all, 

Quick update, I’ve been pretty good. I’ve managed my nausea with an anti acid pill I was prescribed. Other than that life has been pretty normal as it gets, no sickness or anything. I’ve been working again as well, I’m just waiting for my next infusion. Hopefully y’all are good and good news has come yall way. 

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Hey all,

I just got my second out of four infusions done yesterday with enhertu. Like last time this treatment shouldn’t be too hard on me like chemo was. I have been able to work and do thing I use to do like go to the gym and work on my project car. I forgot to mention I’m going to trade school! One thing I have learned with this disease is that it can beat you to the ground and keep you there if you let it, which had happened to me. Not being able to work, being stuck at home 24/7 and stuck in that neck brace threw me into a bad depression. But I realized what cancer was doing to me and I fixed it right away. Now a days I’m doing better and my neck injury has been as well. I look forward to good news my way because I know I’m due for it. Hoping this treatment works in my favor, I have a feeling it will. I hope each and everyone has been doing good and has had good things come there way in life. If not, I’m sorry but keep your head up because it does get better. ❤️

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Hi, Ale! You sound terrific!

I've been having sort of a long slog recovering from the trial, but I woke up today feeling more energetic than I have for the past few weeks. Kinda like slowly coming back to life, ya know?

Yesterday I finally shaved the few hairs that were still clinging to my scalp, and that made me feel better, too. I hated looking like a badly-plucked chicken, but now my head is smooth and I have some comfy caps to wear as it starts to grow back. I really don't mind losing it (just hoping it re-grows the way it was). 

So trade school to be a mechanic? That's awesome! I remember when I was 17 buying a book and teaching myself how to change my oil and spark plugs, set the timing, etc. Back in the days when computers didn't control everything, lol.

Proud of you, kiddo--rock on!

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@LexieCatIm super glad to hear things have been working out in your favor! Hopefully that treatment kicks it’s butt and gets you better.

Im going to be a collision repair tech, so fixing body work on cars and learning how to paint. Which is really what I want to do in life. I’m not letting this disease stop me from living life and advancing in it.

I’m currently a garage mechanic for my house so I know a lot but no by trade, just by tinkering. My pops has shown me a lot in there and I have thought myself as well.

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Ooh, I just had body work done on my car the week before I went into the hospital. The last time I went to Penn (for my Zometa infusion) I parked too close to one of those cement pillars in the parking garage and put a nice dent in my passenger-side front door. Most of the places I called couldn't get me in before July. The guy who does my detailing for me (a once-a-year indulgence) recommended this place he knew and they did an amazing job and had it done almost a week before my June 9 admission date. I'll def. be using them next time. 

Sounds like a great line of work--no shortage of need!

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  • 3 weeks later...

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