@newera
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- November 12, 2019 at 10:18 pm
I’m not in Texas, but I share you anxiety about this!I just learned that I now need bloodwork (taken, analyzed, read) before I can get the TAF/MEK drugs for targeted therapy. I’ve been waiting almost 2 months to get of Prednisone, and have been under 5MG for a week. Went for an ONCO visit 2 weeks ago, and a PET last Thurs – both facilities had a Kaiser lab where I could have done the blood draw.
Now I need to take more time off, and coordinate travel – AGAIN! – to a facility that can take my blood (can only go to a Kaiser facility) so a WASTE of another week!
Why is no one looking at the bigger picture? The cost of healthcare includes the TIME lost because medical professionals don’t coordinate care, they throw you over the fence to a scheduler… and there are separate schedulers for every piece of equipment or chair in a lab. SO FRUSTRATING!
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- August 30, 2019 at 10:47 pm
I would ask if they can do a biopsy first to confirm what they are seeing on the imaging. If it is scar tissue, no major surgery is needed. If it is mel, then you know either 1. the didn’t get it all, or 2. there is a recurrence. Either of those options means you don’t (yet) have a response from the targeted therapy. All good info without a “major” surgery.If this was me, that’s what I’d insist on.
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- August 12, 2019 at 5:22 pm
I’m having a similar staycation! Although it’s only after my second therapy session! Pretty sure they give me a third I’d be heading down the same path that your dad has gone so I’m putting the brakes on the it be at this point!I really appreciate you posting! Your dad and my symptoms are so similar his experience has given me a peek into what I might expect after the third session so I’m just simply not going there! So sorry that he responded the way he did!
Good luck to you
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- November 20, 2019 at 12:51 pm
Go Ravens! HAHAHAHAH!
(It’s really bad when you fall asleep in the 4th quarter, right???)ON Tafinlar/Mekenist for 5 days now with no side effects (hope that doesn’t jinx me!) and, it may be my imagination but it seems my lymph node is smaller. It is definitely not as hard as it was. So, hopefully I’m a responder!
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- August 21, 2019 at 10:13 am
I’ve been following your posts closely as it seems your father and I have very similar situations. I had the infliximab 2 days ago and while it seems to have slowed frequency I still have diarrhea. Been in the hospital 11 days now and the doctors took seven or eight of those days to decide that I needed the damn drug in addition to the 120mg steroids and all kinds of antidiarreahals!I was hopeful it was working because I didn’t have any stools for about 5 hours last night but back with a vengeance this morning. Seems like I’ll never get out of the hospital!
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- August 20, 2019 at 7:41 pm
No my original genetic tests did not have enough tissue to give a result that was from the lung noduleThey did a lymph node biopsy 2 weeks ago and that’s what came back now with the BRAF +
So at least I have another treatment option since IPI/NIVO are out.
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- August 20, 2019 at 9:25 am
Today is day number 9! Well day 9 in the hospital day number 14 of diarrhea.Yesterday they finally gave me the inflximab around 5:00. I’ve had eight stools since then so it doesn’t look like it’s even working.
Oncos say I can’t continue immuno treatments after this so we’re hoping that the BRAF testing comes back positive so I’ll have at least another course of action.
Both of my tumors resectable -under 2mm each or were at the last measure. One is a lymph node – easy to get at – the other ones a lung nodule small enough to remove without taking half the lung.
They weren’t going to go to surgery until they saw if treatments were working so I’m not exactly sure what the next steps would be but they won’t do anything until they can fix the diarrhea and nothing seems to be helping,
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- August 19, 2019 at 2:24 pm
Thanks so much for your reply!I don’t have any other underlying conditions I just can’t understand why they won’t go down this path except for the fact that they’re scared to death and never treated a patient like me before
I’m strongly advocating to get a referral to Hopkins and get away from these Kaiser folks
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- August 7, 2019 at 9:32 pm
Absolutely!Like many of the new sites, and especially PHONE apps, the new “agile” development (get it out in the smallest viable state, the improve/enhance it as users provide feedback) didn’t consider that, if it more trouble to use than its worth, user will just go get a different app! AND, once the original app is labeled CRAP, only re-branding can fix its reputation! That’s the strategy now! I HATE it!
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- August 6, 2019 at 10:29 pm
Thanks so much!For all other profile seekers: embedded deep in the MRF Posting Policies (see link at the end of the second paragraph above the main Patient Forum page) I found this:
0 Keep your profile up-to-date. To update your profile, click on your username on the top-right corner of the site to modify your profile
Love to! But, my name does not display in the top-right corner of the site! I did hover over that area and my cursor turned to a pointing hand, which usually indicates a link. HOWEVER, clicking didn’t display my profile page.
Does anyone else see their name in that area? If they changed their masthead colors, they may have forgotten to change the color of the link text – common newbie programmer mistake!
I have contacted support, so we’ll see what happens next.
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- August 6, 2019 at 10:05 pm
Agreed – I don’t think an American doctor would use the words “could be fatal” – they dumb it down to “It is high risk to proceed, but I think it is prudent in the circumstances”.But I’m bettin’ our friend Lou may bit a Brit, as most of us Yanks say “Mom” not “Mum”! Maybe it’s different on the other side of the pond!
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- August 6, 2019 at 9:52 pm
Has your Onco provided the facts/data on how he has determined that the liver issues are cancer and not side effects of treatment? It seems that a lot is riding on whether he is right!It is my understanding that high dose Prednisone can address the inflammation no matter what the source! AND, it doesn’t HURT the patient, or the IPI/Nive treatment. No harm, no foul. Totally worth a try.
TRUST, but VERIFY!
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