Resources and support for families dealing with cancer and serious illness

shadowmason6 said:Does anyone here have experience with this, or maybe they could explain the difference between a standard CT scan and a PET/CT? I'm really wondering if there's any real point in getting a PET/CT done before surgery if a regular CT was already completed... does the PET/CT provide much more detail? Or would it be better to just hold off and save that for the follow-up after the operation?

I’m definitely not a doctor, but my understanding of it is pretty straightforward: a PET/CT scan can actually pick up malignant changes well before they ever show up on a standard CT. So, if someone is prepping for surgery, it seems a lot safer to go ahead with the PET/CT beforehand, because that way you might catch and remove potential sites that weren't visible on the initial CT but are detectable through PET imaging.

Here is a link that explains things further:

http://brighamrad.harvard.edu/Cases/...1120/full.html

Thanks for helping out a total amateur like me! 😁

Maybe it’s finally my turn to weigh in.

My mom was diagnosed with small cell lung cancer last March—a pretty sizable tumor. Luckily, there were no metastases, but things still looked grim. Usually, you’d just go in for surgery, but for her, that was way too risky because of how close it was to her heart.

So, she started chemo. One round after another. And yeah, obviously, all the side effects that come with it. She eventually finished up with radiation. Basically, she spent an entire year under constant treatment.

We did everything we could (mostly my dad) and she started taking Noni juice, various propolis supplements, and all sorts of "miracle" stuff I can't even name—she just picked what she felt would work from the endless options. Dad even invested in some homeopathic injections, so the whole family basically became amateur nurses.😁

Long story short: the tumor is gone. All that’s left is some scarring and what the doctor calls a "not too worrisome" collection of fluid. They told her she’s done with chemo for now and to just check back if anything feels off.

The downside? A year of heavy chemo takes its toll. Her feet ache, her skin is a mess, and she's dealing with plenty of other little issues, but she’s happy.🙂 And so are we.😍

She’s doing alright otherwise—going out, walking, shopping for clothes and shoes, cooking, cleaning—just without pushing herself too hard. Her breathing is fine, and she actually feels even better when she's down at the coast, so she tries to get away whenever she can. I won't lie and say she's at 100% strength, but she’s nowhere near bad. Because she isn't.🙂

Look, this isn't a pitch for Noni juice or homeopathy. This is just my story. My dad is one of those guys who’s just pure optimism and energy—he never cracked under the pressure and handled most of this with a smile. He passed a lot of that onto her. Honestly, I think having that mindset is the most important part of fighting cancer.👍 It's all about your headspace, obviously.

I don't know what comes next, just glad she's doing okay right now.🙂

Best to everyone.

quietpilot87 said:Maybe it’s about time I finally chime in and say something.

It's honestly good to see stories like this being shared. 🙏

quietpilot87 said:Perhaps it is finally time for me to contribute a few words to this discussion...

Last March, my mother was diagnosed with small cell lung cancer, quite a substantial mass. Fortunately, there were no signs of metastasis, though the situation was far from ideal. While such tumors are typically treated with surgery, for her, that wasn't a viable option due to its proximity to her heart...

She began chemotherapy—one round after another. And, predictably, all the accompanying side effects followed suit. Eventually, she transitioned to radiation therapy. In total, she endured a full year of continuous treatment...

We did our best (my father, most of all) to support her, which included starting her on Noni juice, various propolis supplements, and several other "miracle" remedies that I can barely identify—though she insisted those specific ones were the right choice among the many offered. My father also invested in some homeopathic injectable treatments, so I, along with the rest of the family, have become somewhat proficient in that particular skill... 😁>

As it stands, the current result is that the tumor is gone, leaving behind only a sort of scar tissue and what the doctor described as a minor, non-threatening accumulation of fluid. Mom has been told that her chemotherapy sessions are finished, and she is simply to report back if any issues arise...

Regrettably, a year of aggressive chemotherapy has taken its toll—she suffers from leg pain, her skin isn't quite what it used to be, and various other ailments—but she is happy... 🙂 And we are too... 😍

Otherwise, she is doing quite well; she goes out, walks, shops for clothes and shoes, cooks, and tidies up, albeit without much exertion. Her breathing is fine, and she feels even better when she’s by the coast, so she tries to get down to the beach as often as possible. I won't lie and say she is at peak physical strength, but she is certainly far from feeling poorly. Because she isn't... 🙂>

This isn't an advertisement for Noni juice or homeopathy; it is merely my story. My father is a man of immense optimism and inexhaustible energy, and he never once faltered in front of her, handling most of the heavy lifting with a smile. He passed much of that spirit on to her. I suspect that is truly the most vital component in the fight against cancer... 👍 And, of course, your mindset...

I cannot say what comes next, but the important thing is how things stand now, and that she is doing well... 🙂>

Best wishes to everyone...

It is heartening to read a post filled with such strength and resolve, such optimism. You never once gave up, and more importantly, you found ways to truly support your mother!

Everyone battling cancer, as you have observed, is an individual fighter, so I am glad you shared everything that helped her through...

My mother also deals with skin issues following her chemotherapy. If anyone happens to grab her arm a little too firmly, she is left with bruises. She hasn't complained about anything else so far, and we haven't noticed anything beyond that...

In any case—keep that spirit high and try not to worry about the distant future. Just keep doing the very best you can right now!

kisses

Amanda Miller69 said:Another fighter lost their battle this morning. My mom passed away at 7 AM, peacefully in her sleep.🙂🙂

Dear Amanda Miller69, please accept my sincerest condolences.

Dear Linda Peterson37,
I wanted to send my sincere condolences on the passing of your father.

Anonymous said:I didn't have the strength to reach out sooner. My aunt passed away last week... she just fell asleep. Thank you all for the support you've shown me. Keep fighting and stay strong for me. She was a true fighter who went down swinging until the very end, fighting so hard just to stay awake. I am proud of her with everything I have.

Dear wickedangel, my deepest condolences on the loss of your aunt.

feralwolf24 said:hiddentiger80 :-)) Sending big greetings!!!!
How have you been? It feels like it's been ages since we last spoke, or maybe I just missed your updates :-)) Is everything okay?

Oh, feralwolf24... 🙂 I truly hope you are doing alright and staying strong (I happened to stumble upon your heartbreaking story on another thread and my heart just aches for you 🙂 please don't give up, just take things one step at a time :-)). About two months ago, my husband decided to rearrange our entire apartment 😲 all by himself. It went on for days, and my dad almost ended up in a psychiatric ward 😁 (since he really shouldn't be getting stressed out), but he's hanging in there—he's headed for a checkup this summer (even though I'm constantly worried about what he's eating, but I can't bring myself to nag him too much over it...). Anyway, I feel the need to share something else. With my mother, it felt like we had survived every possible hurdle, and we were all trying so hard to stay positive, and things finally seemed to be moving in the right direction, slowly but surely. And then, what happens? My father, while working abroad, takes a direct fall from five meters up—they had to airlift him from a small local clinic to the biggest hospital in the region because they couldn't wake him up. I jumped straight in the car and drove 435 miles for five days straight just to be with him, and the whole situation was just... terrifying. There were surgeries, him demanding to come home, me driving him back in that state... honestly, it's hard to even believe it happened. But I won't ramble on too long; anyone looking at his medical records today (he’s still going in for follow-ups and medication therapy) would be shocked to realize he isn't dead or a severely disabled person. I used to think nothing could ever get worse than what we went through with my mom, but then I realized there are absolutely no guarantees for anyone or anything, and you just have to live day by day. That's why I try to look forward, and I won't let myself break, and I won't let any of you break either. Sending love to everyone, please take care of yourselves 🙂

slyseal28 said:We did a follow-up CT scan of the chest, abdomen, and pelvis yesterday. The results are a total disaster. The cancer came back, and it came back in full force: in three different spots.

Part of the chest CT report: "On the left, an extremely high rib elevation is visible; adjacent to the lateral thoracic wall, a soft tissue expansive round mass measuring 3.7 x 3.3 cm is shown. Near the aortic arch and pulmonary artery, an irregularly shaped soft tissue expansive mass is also visible, and further down and anterior to the cardiac apex, a polycyclic expansive mass measuring 11.8 x 5.7 cm is present. A smaller soft tissue expansive mass is also seen on the left dorsal side in the posterior recess behind the spleen."

Part of the abdomen and pelvis CT report: "On the left dorsal side against the posterior abdominal wall behind the diaphragmatic crus, a larger oval-shaped soft tissue expansive mass measuring 5.6 x 5.0 cm is shown, and further anterior, another round one is located in the area of the diaphragmatic crus latero-aortally, almost inseparable from the existing larger mass."

Basically, the results are garbage. We didn't see this coming. I’ve been thinking about a recurrence, but I really didn't expect it to happen this fast. And in three places at once... We went straight to our specialist and worked out a treatment plan:
Third-line chemotherapy is being proposed: Gemcitabine and Docetaxel. On Monday, we have to submit an application for insurance coverage because, naturally, these drugs aren't on the standard list for soft tissue sarcomas. We're planning the second cycle, followed by a follow-up CT. If the therapy doesn't work, we move to Yondelis. Yondelis is that drug that isn't registered here in the US, and monthly treatment costs about $11,000.

Surgery is also being planned—maybe even two separate procedures. We need to consult with the thoracic surgeon, Professor Bannister, and most likely an abdominal surgeon as well. But we'll deal with that later.

How have we taken this? It's hard. We're back on the front lines, right in the thick of it. We need to pull ourselves together. Process this and adapt to the situation. Ugh...
Our fight continues. We will keep fighting for the registration of Yondelis. We will keep fighting for life. This time, we’re going to need the help of friends and good people. Please stay with us.

Dear slyseal28,
I am so sorry you're going through this. I know it can't be easy, but I don't doubt for a second that your fighting spirit will prevail.
You've already endured so much that this can only serve to strengthen your resolve to keep fighting with even more passion than before. Very few drugs or treatments are as effective as a strong spirit that keeps pushing forward. And you have that.
Just keep fighting like you always have, and the results will come. With diseases this severe, every single new day of life is a small victory. And every victory, no matter how small, strengthens the spirit again.
Hang in there; you can do this. You're in my prayers.

Dear Linda Peterson37, my deepest and most sincere condolences. To everyone else, I wish you strength, courage, and relentless persistence.
I follow this thread regularly, though I don't post often since there isn't much news or insight to share yet. We are waiting for May 15th, when we meet to finalize my mother's chemotherapy plan. She is currently stable, even if she isn't gaining weight (she's at about 101 lbs). Fortunately, better days are ahead, bringing a renewed will to live and fight.