regina
Forum Replies Created
-
Posts
-
Dr. Kato seems to have hands of gold. He has courageously and diligently performed many surgeries successfully that no one dared to do. He has worked alongside my surgeon, Jean Emond, whom I greatly admire and appreciate for his skill, wisdom and bedside manner.
Perhaps a useful tip: There may be a long wait for a surgery date a Columbia; thus, Emond offered to operate on me at Holy Name Hospital in NJ, which offered the great benefit that he operated on me himself and the nursing care was better.
Best of luck,
ReginaWhen I said “Since it doesn’t seem to matter whether one is MEK/MET positive or not, as to efficacy, they all seem to be worth a try for many of us,” I meant that all my oncologists queried did not seem concerned that I express neither MET or MEK, in the sense that they believe that the inhibitors would work regardless of that fact. That’s all. Nothing to do with comorbidities or vulnerabilities.
Obviously, one should only work with doctors familiar with or who have access to information about the drugs they are dispensing.
The genomic profiles are very interesting and promising and will be even more so in time.
best,
ReginaNo prob!
Also, most insurance covers wigs, usually one go round with a pretty high cap, for cancer patients at specific locations. It’s worth a try. I got a beautiful human hair wig in that way.
~Regina
Exactly. Since it doesn’t seem to matter whether one is MEK/MET positive or not, as to efficacy, they all seem to be worth a try for many of us. The beauty of cabozantinib, besides its surprising success for other GI cancers is that, I discovered, that it can be prescribed by your doctor, thus avoiding the clinical trial setting.
Thanks for your excellent clarifications, Gavin.
~ReginaKris~
hah! Yeah, well, I’ll wear a seat belt on the way to the beach, but I’m not too worried about the sunscreen. (Except, I can’t really use that anymore since the sun brings out the acne!) Ultimately, it’s all about vanity.
I agree, your scalp issue should really be only one or the other. definitely protest. Although, once you’re wearing a wig, what’s the difference what you’re covering up? Have you tried that route? I would love to write a story about my wig adventures. I have gotten used to switching hairstyles and color on a regular basis. The trouble is that I try to stay consistent with professional crowds, and I blew it last time — showed up as a redhead where once I had been blonde — and no one recognized me. It may have been a good thing because my brain was full of cotton balls and I had nothing much to contribute. I’ll have to keep the blonde, ironically, for when I intend to be taken seriously.
Cheers~
ReginaMary~
Just a quick response now since I have to dash~ sorry to hammer the point, but what I was saying about the cabo is that you don’t have to be on a trial at all. Your doc can prescribe it for you like any other medication. Being on a Phase 1 trial is a pain in the neck with all the excess testing and reporting — only worth it if it’s your only option. Cabozantinib can be prescribed like a regular medicine and paid for by insurance by your doc and you’re on your merry way.have a great day~
ReginaWhat a wonderful thing! I’m very excited for you, too! Thanks for letting us know. And it would be great if you still feel up to keeping us posted.
Best of luck~
ReginaHi Marion~
My onc told me about that interesting phenomenon with Erbitux; and I queried her as to whether it applied to MEK/Pazopanib, too, but she said it wasn’t yet known. I guess Kris and I will be among the numbers to inform future queriers.
Thank you for the interesting information you did provide. I appreciate having some information to wrap my head around. In fact, it stands to reason (maybe) that if the drugs are disrupting cell growth signaling such as to have a visible effect after only two weeks, it is possible that my already lowered CA19-9 could represent actual tumor growth remission.
One might as well entertain the possibility, anyway.
Hugs to you,
~ReginaThanks, Lainy~
You keep me smiling, too. The best defense is laughter! Glad to know you’re up for some gallows humor, because I have been holding back on this platform, feeling out the waters with one (oxali-numbed) toe at a time.
keep having fun!
~ReginaHI Kris~
Yes, we must meet up soon. DId you tell me you are in NY, as I am? I can’t remember which platform we used to communicate previously.
How’s your face these days? Mine is approaching monstrous, frankly. The trial nurse said I could start an oral antibiotic for the long term, but I’m a bit nervous about dilapidating my natural flora, affecting digestion, immune system, etc.
Why do these inhibitors cause acne??? I was hoping that if I was going to die young, at least I would die beautiful!
Sigh.
best to you!
ReginaHi Mary~
Just to make sure you understood: My insurance agreed to cover cabozantinib OFF-trial. That means you would use it with only the supervision of your onc, without all the restrictions and requirements of a trial, including the four week clearance time.
Also, I had my genetic analysis done at Foundation Medicine, and I don’t think they wound up charging me much at al, if anything. They want patients now more than they want the revenue from them. Also, MDAnderson, for example, would do it as part of their protocol, hassle-free. Some of the big medical centers have their own genetic labs that can check for all the mutations.
Out of 236 genes tested, I only had a mutation on IDH2. There is as yet not enough information as to what to do this information, in most cases, but it’s coming along.
Be well!
~ReginaWow, that’s wonderful!! Do you know about how the rest of our “kin” are doing on the trial?
Enjoy chemolessness!
ReginaDear Mary~
As I shared in another section, I was actually referred to the cabo trial by my excellent Mass Genl doc, Eunice Kwak; however, when I looked it up I saw that it had been approved for several other cancers; so I called my insurance company and they said they would cover it! So you can do it off trial. My Columbia Pres doc, Abby Siegel, (also wonderful) said she’d be glad to put me on it if I wanted. We agreed to save that one for when I may not be eligible for a trial.
I also see a superb doc at Sloane, Eileen O’Reilly, who suggested that I consider the Taxanes at some point. I’m really glad to hear that Paclitaxel is keeping the tumors stable. Who do you see at Sloan?
I’m pretty sure the DTP (Phase I department) at Sloan requires that you be off other treatments for four weeks before they’ll even meet with you. I met with Dr. Drobin, whom I really liked, there before starting this trial and he said that there would be some trials opening up soon. It’s all a matter of timing with Phase 1 trials. It’s good to be on their radar. In fact, I am glad to be on the radar of five excellent docs are great medical centers, as they update me regular if there’s an opening.
I was also offered a go at a trial at Mass General with Dr. Kenneth Tanabe, an extremely well-respected and kind doc, in immunotherapy, using the Herpes virus to attach to ones own immune cells and reinject into the liver. Though I find this type of therapy very promising, it not been tried extensively as MEK and Pazo had. I might head back that way later.
There is a lot that can be done; just reach out with many feelers. BTW, I’m not sure at all yet that this regimen is working for me, but I will keep you posted, especially after CTs, etc. in November.
Peace and hope,
ReginaLainy~ My daughter’s taste has always been sophisticated to my Bohemian look, but guess what? The tastes are shifting to Bohemian and she’s borrowing my clothes now! And I shop in her stores — the sale rack in Free People granted me three nice tops last week during my “retail therapy” session that immediately followed an important workshop during I was embarrassingly chemo “brain-limp!”
