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You have been such an inspiration to all of us. Sending you love and support. F$ck cancer

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Looking in to say a big hello and see how the Whacking is going. There are improvements in this form of treatment all the time.

Take care and enjoy your days and those "swing dance" evenings!

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Hey there Flori!


I've been thinking about you, too, and wondering what you are whacking with as well! Remaining hopeful.


L.

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Me too Flori! Chiming in to say you've been on my mind, hoping things are going as well as they can be for you.


Carol Ann

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Hi Flori;

Thinking of you and your battle. Hoping for all the best and praying for you.

Cathy

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Whack, whack whack away!

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So happy I checked in tonight. You are one of my old friends on here and you are an inspiration. God Bless you Flori.

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Hello SoCalGal,

Perhaps you can look into this?


"
The American Society of Clinical Oncology’s (ASCO) Targeted Agent and Profiling Utilization Registry (TAPUR) clinical study has added the enrollment of additional patient groups and continues to grow with more than 500 participants and 16 therapies now available. The purpose of TAPUR is to help cancer patients who have exhausted standard options access targeted study drugs matched to the genomic profiles of their cancers and provide physicians assistance in interpreting genomic results and identifying potential treatment options. (1)"

https://news.cancerconnect.com/breas...U-3m1JEn5mDyg/

Nguyen

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Id also think about that anti-worm drug Fenbendazole. I was impressed reading about the metastatic lung cancer patient Joe (Tibbens ?) Very impressed

Paul

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Its Joe Tippens. He has been cancer free for 4 years. He is on Facebook. Appraently other people have used Fenbendazole with some success. Dont forget clinical trials with Phase o ne drugs are about determining toxicity and maximum tolerated doses, not efficacy. It seems that Fenbendazole offers some hope

Paul

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Hi Flori,
I think you said it best-it's frustrating to be scared of your own body. Thank you for sharing your experiences here with us.
I'm certain that clinical trials aren't a favorite option at present, but I did want to suggest a few that I'm aware of, which are helping patients, or appear poised to.
DS-8201a: It's in many clinics in So-Cal (LA for example). Think of it like Kadcyla but with a different toxic payload. Given you've had taxane after taxane, receiving a topoisomerase inhibitor (the payload of DS8201) could "shock" the cancer cells.
There's currently a trial combining DS8201 with a immunotherapy drug (nivolumab). ClinicalTrials.gov Identifier: NCT03523572. This is phase 1 so you won't end up on a placebo.
The other product which might be of interest if tucatinib (currently owned by Seattle Genetics). This is similar drug to lapatinib, but it's supposed to better access the brain and CNS, and have fewer side effects.
Unfortunately it's in late stage trials, so you might see about requesting "Expanded Access to Investigational Products" from a Seattle Genetics representative.
I'm aware of other trials, but they're outside California.
Whatever direction you take, sending positive vibes and well wishes.

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The main difference with Tucatinib vs lapatanib is that Tucatinib inhibits Her 2 neu wihout inhibiting EGFR (Her-1). This means less diarrhea. It has good CNS penetration. May be worth trying.

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Flori.....?

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Flori,

Sending prayers and good wishes. Your humor, so perfectly and aptly describing our struggles has always amazed and inspired me! Hoping to hear from you soon...

-shobha

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Thinking of you and praying for a break through. You are ever on my mind and heart, dear Flori.

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Like everyone else you have touched - thinking of you, Flori. Hang in there!

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Hey Flori, Like many others, just checking in to see how you're doing. The general hope is that you're out there living your best life and are too busy to check in here but when you have a minute, please let us hear from you. Hugs.

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Hi Lovely people,

Sorry I’ve been so remiss in updating - my emotional state has been garbage. After so many years of coping with this beast of a disease, to wind up with LMD and CNS and not really know what is happening to my body has been my own personal nightmare.

Thanks for checking on me and I’ll do my best to update. Finished 5 days of zaps to spinal cord met at C2. Including was an extra zap to the small brain met. All 5 days were me wearing the smother mask and no Ativan so I could drive myself. That was 8 weeks ago.

I went back on herceptin, plus added in xeloda, tykerb, xgeva. It’s all in hopes of slowing down progression rate, and maybe buying some more time. My QOL is still reasonable. It’s been terribly frustrating trying to get my right to die with dignity up and running. Apparently, Cedars prefers to let the hospice doctors handle it - but I am not on hospice. Not sure I feel like spending my time fighting all these idiots right now.

I have an MRI on Thursday and brain surgeon follow up on Friday. Will see then how I’m really doing, and if this mild vertigo is a symptom of progression or “just” a side effect of chemo/meds or “just” some mild vertigo no reason. I also have an intermittent stabbing pain at the right side back of my head. Could be from neck which has a lot of stenosis and other non-cancers probs that could be acting up. Also could be inflammation after rads. Will find out soon enough.

Me and my family are trying to hold on to hope. But I am feeling extreme fear almost daily.

As someone mentioned the trial DS8201 - yes, I’m well aware of, but due to my Herceptin allergy it is a no. I tried nerantinib and also a no go due to grade3 diarrhea. And SeaGen is not providing any compassionate use for tucatinib. And dog worming pills is not going to fly with me. Ditto for celery juice and CBD and all other super-alternative things. Once cancer is in the Central nervous system, it is a different game. I’m just learning the rules. I am competitive so I’ll try to kick some ass. But I also know when to fold…

Much love <3

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Good to hear from you Flori. Silence on the board can be scary!

Glad the QOL is still reasonable and hope the drugs are kicking the disease.

Is perjeta a consideration? It looks like you had taken it for a while but it's not on your currently list.

We understand that you have more pressing things going on in your life than updating us on the board but when you can and you're up to it, please do keep us posted on how you're doing. Hugs

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Flori,

You know I have been checking in daily and sometimes, like today, more than daily, seeking an update. CNS mets is a game changer, no doubt. It sounds as though this week is D-Day in terms of seeing if the whack-a-mole is working. I am praying it is!

No matter how grim the reality appears, your toughness to fight or to accept is what will carry you through. I wish with all my heart this cup would pass from you, my friend. With all my heart. The one bit of happy news is that life is still doable. I am grateful for that.

Obviously you are on my mind and in my prayers. Please let us know what you hear on Friday.

Laurel