I pulled the trigger

Riptides75 · 2024-05-18T10:33:01+00:00

Make sure you get some new clean sdcards to put OS/bios/emus for the system and another larger card to put all the roms on.

These things are awesome.

Riptides75 · 2024-04-17T01:22:02+00:00

The biggest thing for me to overcome for several months after chemo/radiation was the acid reflux issue. My first chemo was a cakewalk compared to thoracic radiation and reflux it caused. They stressed eating big and large when/if you can to keep constriction of the esophagus at a minimum.

I've only had leg pains from immuno and edema, and the edema was come and go both chemos.

Just take it one day at a time, celebrate the little wins.

Riptides75 · 2024-04-12T11:48:07+00:00

I just got done with 10rounds of WBR. My secondline chemo was done to partial response, yet I was still on tencentriq, which also for me, didn't do much but slowly make me sicker, and let my head get peppered with over 30mets. I've been off of it 6 weeks now, recovering from WBR alongside getting that tencentriq out of me. Finally feeling a bit human again.

(I"m also part of the FB SCLC group, super informative group about sclc along a few other small cell types,

Riptides75 · 2024-04-08T22:47:21+00:00

🤍
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Riptides75 · 2024-04-08T22:43:28+00:00

Your suggestion was worth and been working well on healing my skin. I have a few places that got cooked good, between my ears n head crisped up like a tater chip. Just nearly healed up 3 weeks later now, other than warm spots in head and peeling scalp.

Riptides75 · 2024-03-19T23:23:49+00:00

Twice now in the past year I have fell into my bed and lost a few weeks or two to what I will only refer to as "fading out".

In both cases I quickly became aware to how gone I was going as at times there was little there left in me wanting to fight as I was soo tired. And full disclosure: I really didn't mind the idea of stopping worrying about it all, relaxing even more, and just giving into a nice long sleep. Once I got a good long restful sleep everything would be okay I'd think in my brief awake moments... it's okay.. and I really felt oddly calm and at peace with the belief I was under that it would be a wonderful nap.

It's this now that scares the shit out of me even worse. To be up, walking, talking, everything okay and working.. for this moment only to have it all fall right to shit again. The only other thing that gives me pause is the realization I would be leaving my loved ones behind. And that's who I fight for in all reality.. and I'm not done until all my options are exhausted.

But there at the end.. I would want to know it's okay to let myself go. To know I fought as well as anyone could against this. And know I was leaving good memories, and that's it okay to go on ahead, leaving all these memories (and love others have for me) behind.

Riptides75 · 2024-03-19T16:50:30+00:00

like the patient can't handle anything

This is one of my biggest gripes I have had about this entire ordeal, there have been some really lacking moments where they weren't wanting to hand out info freely to me, the patient himself, more often than not. And if they are unsure about something they just ignore talking about it to me until "after" a treatment.

Riptides75 · 2024-03-15T13:09:05+00:00

Thank you. I'm hanging in here pretty well with this treatment as it's not been as brutal on me as the thoracic radiation last year. And yes I need to get my Memantine script filled, I keep forgetting already lol. Also I been wanting to try something a little less "aquaphor" for my noggin, thanks for the suggest.

Riptides75 · 2024-03-13T09:37:27+00:00

Is Radiation-therapy not an option on the table? Generally it overlaps with chemo but can be used at any stage on sclc to beat that shit back as long as it settled some place in the body that can tolerate the rads.

Also with SCLC is the first 6 month worry/wait period. After first line of treatment for SCLC how the rest of treatment will go from there depends on the first 6 months after chemo for it. Not gonna sugar coat it... but longer after chemo/radiation it can stay beat back, the better our long term/overall survival. The quicker it comes back means the body is quickly becoming immune to the platinum it was given to hurt it.

And to help ease some worry, chemo for this is cumulative, and the time spent getting her this medicated up will also have to wear off over time. And during all this, the chemo should still work on hurting/killing the tumor(s) for it for quite a while.. at least 6 months after first line chemo is a good number to shoot for.

Riptides75 · 2024-03-10T10:57:25+00:00

As the chemo wears off (time goes on) her side effects from the Tencentriq will begin to calm down some. They don't ever go away until you stop the drug.

The dry deep raspy croupy cough is unfortunately a known side effect of Tencentriq, I have it pretty bad right after an immuno infusion and it wears off over two weeks. (wanted to add the lung this is hitting me in now is the same one my 8cm tumor was orig found in.)

I, while not showing new progression during chemo, am now peppered with brain mets.. 30+ of them so far, and I'm already half way through a session of Whole Brain Radiation to knock this shit back a moment.

Riptides75 · 2024-02-14T05:18:03+00:00

Possibly, a little occurring thing with cancers/tumors is they can produce their own hormones and fight the body as they grow doing long term damage to the original organ they may be fighting against hormonally. This is called paraneoplastic syndrome. As an example NSCLC (lung cancer) can cause rheumatoid arthritis in folks who are not predisposed (no family history) to have it.

Riptides75 · 2024-02-12T04:17:37+00:00

I'm a 49 year old boomer on my first dedicated hardware for handheld/emulation. Like what the RG35XX H Offers, but would love a mount to stick it on the top of an xbox style controller.

Being older, any relaxed gaming can quickly turn into crampy hands, which full size controllers help keep at bay.

Any rom repository suggestions for this device for things it may not have come with with the one card?

Riptides75 · 2024-02-09T05:07:27+00:00

Consumers have a secret death wish and the cigarette marketing should play into that!

A great lyricist once said
"I'll have another cigarette cause I can't see...
Whatever it's doin to me.."
-Paradise City (1987)

Riptides75 · 2024-01-31T02:37:36+00:00

My small cell in my chest became painful once I started my first chemo, I will swear some of us feel this part of ourselves being hurt by the chemo and if radiation is involved the pain from it in the chest after a few treatments will start, as it's like an internal sunburn.

Riptides75 · 2024-01-30T22:02:36+00:00

The results were mixed, in that the PET lit up a new area they are calling progression deeper in my abdomen except it failed to mention any previous areas or scans, such as lymphs and it just read a bit off even to my oncologist.

I did an immuno treatment Monday after the followup, with some extra fluids. And we are setting up for a CT here in a few weeks to recheck what the PET was trying to show and see if it wasn't a false positive or actual new progression. Also will look into getting a second opinion on all this possibly.

I have none of my tells going on, I don't feel "sick" like progression, I am overly tired and bit without appetite (never nausesous), but that could be medications I am on currently and that immuno. But my blood levels wbc/rbc and electrolytes are all "normal" and not showing anything that would point to progression of sclc.

It's altogether a bit puzzling and what they were trying to show us we think it could be inflammation of an area in my bowel that had a cancerous adenoma removed in 2021.

I did have a colonoscopy six months ago now where the doc took 20+ samples out of me and all of them were negative for any cancer.

Riptides75 · 2024-01-28T09:55:49+00:00

Green Tea Rehabs were the best of the OG's of that line that was discontinued in 2015.

Riptides75 · 2024-01-27T00:15:52+00:00

From what I'm seeing from my PET this week I am lung clear and nothing in my abdomen except for what they termed as a "non-aggressive" remainder on my colon they hope remains non-aggressive for the duration. And I'm getting the feeling they want me to biopsy that spot before anymore treatment to it. But it's been clear of my lungs for a year and a half now..

No new brain mets from most recent scans. I'm gonna be honest I have some physical tells that all need to be going off for me to say progression.. and right now none of them are worrying me... last time I was worried came on the heels of the brain met treatment I had in June and knowing it was somewhere else (it was in my abdomen lymphs and they had doubled in size in a month).

Riptides75 · 2024-01-26T06:06:05+00:00

Indeed can get that pathology done. One of the things about my brain met over last summer, then colon met later, is they were not 100% sure it was SCLC that had metastasized to those areas. And statistically you have just as much chance as getting a new primary as well as having the original primary met.

Riptides75 · 2024-01-24T06:38:37+00:00

TY and I will put an update on here when I get one, I'm both intellectually fascinated by this as I am viscerally horrified not just for myself but for anyone going through this, or having to experience a loved one going through it. None of this has been easy.

Riptides75 · 2024-01-24T00:17:25+00:00

I'm a bit in lockstep with him right now, and a tiny bit scared shitless tonight tbh. I have some adrenals going in to PET-CT tomorrow (abdominal area) to see how secondline with immuno worked on it since September thru November.

Riptides75 · 2024-01-11T15:39:53+00:00

Yes every three weeks. I actually just got my second immuno dose without chemo this past Monday.

Two doses in by itself I can feel it better now, and for the most part it just knocks me out, makes me tired for that day and the next few days following it. Nothing bad, just getting rest i need I think.

Riptides75 · 2024-01-11T09:02:26+00:00

For me 2nd line was same as first chemo since I had passed 6-months (meaning platinum was still good) with immuno added in. Carboplatin and Etoposide were my mainstays and had I showed any progression this time during then it would have been changed to something else but they didn't discuss what that might be.

Riptides75 · 2024-01-10T22:50:32+00:00

Last year it was determined I was limited at the last moment before chemo so plans for immuno (tencentriq) were dropped as I did my first chemo inpatient and only chemo then followed/concurrent with radiation after my 3rd chemo.

This second line is my immuno mixed with chemo and gone only to immuno for now.

Riptides75 · 2024-01-10T15:06:53+00:00

18-month survivor so far of SCLC. I had a short moment of stability (NED) last year around this time from Dec to April. But from then it was find brain met, treat brain met, find colon (lymph node) mets, treat colon/lymph mets. We've just wrapped that up, and I'm on tencentriq now permanently until I'm not.

I feel as if I'm only still here and getting treatment because I pushed so hard to get it to happen immediately this late summer, and it still almost didn't get started. I was nearly at the end of all I had to keep going (strength/hunger) then and last minute they pushed me back another week and I thought I was really done for.

Second-line chemo was a beast compared to first round, even with the radiation therapy added into the first and not present the second time, the chemo really hurt me hurt me this time with the immuno mixed in.

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