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Hello from IL--- Part 2


JimsMNL

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So, MNL is still in U of Iowa on a holding pattern.¬† Breathing is MUCH better with the help of the steroids.¬† They were going to rescan today, but pushed it till Wed.¬† Still no start date on chemo, but looking likely to be soon.¬† She is in very good spirits. Maybe a little steroid happinessūüėĀ¬† Anyhow, the cancer mutation results showed TP53 w/Q331H variant.¬† ¬†Looks like there is 3 clinical trials going with that right now, so will look into those.¬†No RNA mutants to speak of. Thats about all i got for now.¬† Hope everyones doing as well as can be.‚úĆÔłŹ

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TP53 is common in almost all cancers, and there's nothing to treat it, specifically. It's one of the few identifiable mutations I have, but it's not "actionable." My oncologist, who is up to his eyeballs in research, seemed to think the notion of targeting TP53 was pretty much pie-in-the-sky right now. If you have links to those trials I'd be interested in seeing them. 

Oh, and super glad to hear your MIL is feeling better! 

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Just wanted to say how sorry I am to hear about your MNL.  One of my physicians is based out of the University Of Iowa in Iowa City.  She’s a board certified Integrative Medicine physician, Nicole Nisly MD. She’s out of the internal medicine program.  Her role is to help patients optimize their lung cancer treatment plan. She’s a published international expert plus she’s super nice too.  Insurance covers the visit which is another plus.  She had access to a lot of local resources to help support general health & had a list of discounted services. Even though she was five hours away from us Dr Nisly is an excellent resource.  

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These are marked for her as "Potentially Relevant Targeted Trails"   

Her "Relevant Biomarkers" are the TP53 and it included the variant Q331H in the explanation, if that matters i guess. 

 

https://clinicaltrials.gov/ct2/show/NCT04293094

https://www.aprea.com/our-pipeline/

 

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MnL is home. Tumor shrank 1cm with the steroids.  Scan looked good.  I think MnL is on a steroid high and not thinking clearly and has my wife pissed off with demands. I will fill in the blanks tomorrow.  Crazy shi_.

Have a good night all.‚úĆ

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On 5/17/2021 at 9:06 PM, JimsMNL said:

These are marked for her as "Potentially Relevant Targeted Trails"   

Her "Relevant Biomarkers" are the TP53 and it included the variant Q331H in the explanation, if that matters i guess. 

 

https://clinicaltrials.gov/ct2/show/NCT04293094

https://www.aprea.com/our-pipeline/

 

Looks to me like both of those trials require progression after first-line therapy. 

Glad she's home and feeling better. 

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She has first appt with new Onc. tomorrow that will be giving her the chemo.  It looks like its gonna be Carbo,Alitma,Keytruda combo.  We think anyhow.  My wife is fearful on how this is going to knock her down.  She was kinda on and off sickly before cancer came in the pic, so im hopeful she will get in the game here.  She thought the melatonin they gave her was for her blood pressure, so im semi optimistic this is gonna go well.  Was told by the Onc. at U of I that her PDL1 levels are high, so i hope thats a plus, not sure the number yet, trying to find out.  IMO she needs to make some big lifestyle changes, and im not sure that will happen. 

And i dont like seeing my wife being taken advantage of.        Thats all i will say on that.

Let ya'll know more later on.  

Have a good day everyone.

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I found it helpful (I was on the same triplet) to keep a running calendar/diary of how I felt every day. I had relatively mild side effects--for me, the fatigue hit (and hit hard) around day 4 of each cycle. I'd feel wiped out for 2-3 days and then feel much better. Usually that's somewhat predictive of how each cycle will go. I also had mild edema (swollen feet/ankles) for the first few days after infusion but that generally went away quickly. I also had some "brain fog"--difficulty concentrating/ remembering stuff--but not too debilitating.

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So she is starting the Carbo,Ali,Key trio on Tues.  Her Onc sez we gonna hit it hard. Not sure what that means, but i guess.  Only gonna do 4 rounds of chemo to start, with a PET in there somewhere. Her PDL1 level was >50%, so i hope Key will rock it out with the help of that.  They are gonna put in a port after the first round is complete.  I was suprised that the Onc or the staff didn't press the nutritional needs part at all.  She's getting a bucket of prescribed vitamins and such, but no talk of her lifestyle changes. Seems odd to me.

Anywho, you all have a great afternoon and i will follow up.

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That's the exact same treatment I, and many others here, have had. I didn't have to change a thing about my diet. The only drug in that bunch that caused any nausea at all for me was the carboplatin, and once that was discontinued after four rounds, I didn't need any of the anti nausea meds. The other thing to be careful of is that the anti nausea meds can cause severe constipation if you take them on a regular basis. I was told to take them ONLY if I started to feel queasy (but not to wait till I was throwing up), and if I had to take it more than a couple of times to take some Miralax to stave off constipation.

I never lost my appetite--in fact, I gained weight the whole time I was on treatment. Hopefully your MIL will have a similarly easy time of it.

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Carbo can also cause constipation, so stay on top of it and be brutal about it (Milk of Magnesia) if nothing else works. 

During chemo and radiation treatments, the goal was not to lose weight (but I really failed there). I was told to stay away from all raw fruit and vegetables that did not have a peel that could be removed, due to contamination concerns. Even a small amount can make you very sick because the immune system is being compromised. Other than that, I don't recall any dietary recommendations. For lifestyle, just stay away from others or wear a mask for the same immune system concerns. 

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She got the first round yesterday.  It went well she said, other than they had to slow it down a bit because of it burning.  She gets a port before the next round.  She is feeling fine so far.  I hope that continues.  

Not much else to report at this time..

I hope you all are doing the best you can.

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