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Forum: her2group 11-13-2018, 09:58 AM
Replies: 111
Views: 27,594
Posted By KatherineM
Re: ZW25 clinical trial - day one

Wishing you the best of luck, Flori! I am sorry to hear about the f*ups at the hospital. Hard enough to fight the drugs, the odds, the disease! When you add inefficiency and incompetence into the...
Forum: her2group 08-23-2018, 09:24 AM
Replies: 12
Views: 4,164
Posted By KatherineM
Re: Oxygen Levels

Hey, there. So, I met with my oncologist today. She wants to put me on Adriamycin, which means Goodbye, Keytruda, I hardly knew ye. Adriamycin is a chemo that the cancer has never seen before, with a...
Forum: her2group 08-17-2018, 01:17 PM
Replies: 12
Views: 4,164
Posted By KatherineM
Oxygen Levels

If it's not one thing, it's another. My oxygen levels were around 88, after I exerted myself by walking down the hall, on Wednesday. They tested me again on Thursday, same thing. So, now I have home...
Forum: her2group 08-17-2018, 06:47 AM
Replies: 14
Views: 4,493
Posted By KatherineM
Re: Keytruda

I am hanging in there. First Keytruda treatment was uneventful, though my cough/shortness of breath has gotten so bad that they put me on home oxygen. It helped me get a good night sleep last night,...
Forum: her2group 08-15-2018, 07:19 PM
Replies: 14
Views: 4,493
Posted By KatherineM
Re: Keytruda

Thanks to you all! Got Keytruda today, which seemed fine. But my oxygen levels, when I walked down the hall, and started coughing, was 88, so they ordered home oxygen. Yipes. The nasal cannula and...
Forum: her2group 08-13-2018, 09:59 AM
Replies: 14
Views: 4,493
Posted By KatherineM
Re: Keytruda

So, I start Keytruda on Wednesday. Scared but hopeful. It's amazing, isn't it? -- how quickly this routine becomes familiar: first, the disappointment and fear, when the latest scan shows...
Forum: her2group 08-13-2018, 09:51 AM
Replies: 71
Views: 19,549
Posted By KatherineM
Re: Cancer 'n Me

Rooting for you, Flori! I hope you can find a treatment that works, and that supports and enhances your quality of life. Much love and light. - Katherine
Forum: her2group 08-06-2018, 07:41 PM
Replies: 14
Views: 4,493
Posted By KatherineM
Keytruda

It looks like I was approved for Keytruda, starting in the next two weeks. Tucatanib is not going to work out for me, b/c I was just on Tykerb, and because it seems that they are not offering...
Forum: her2group 08-01-2018, 08:35 PM
Replies: 5
Views: 4,437
Posted By KatherineM
Questions about "Compassionate Use" for Trial Drugs

So, my brain and lung mets both show progression. My oncologist and I want to get tucatinib, which has just been cleared for individual access. I am wondering if anyone has had experience with...
Forum: her2group 07-28-2018, 06:48 AM
Replies: 5
Views: 3,720
Posted By KatherineM
Re: Seeking Whole Brain Radiation Info

Thanks, all. I've decided to hold off on WBR for now. It just doesn't feel right for me, since I am currently asymptomatic. Looking into tucatinib for compassionate use. Lung scan on Monday, then...
Forum: her2group 07-25-2018, 06:50 PM
Replies: 5
Views: 3,720
Posted By KatherineM
Seeking Whole Brain Radiation Info

Hey, all. As some of you know, I was diagnosed with about 16 small brain mets in February, and had cyberknife to the biggest one in March. My next scan showed reduction in all of them. (I'm also on...
Forum: her2group 06-20-2018, 09:19 AM
Replies: 71
Views: 19,549
Posted By KatherineM
Re: Cancer 'n Me

Flori - Good the procedure is behind you! Sorry to hear about lungs. Will your insurance cover Foundation One testing? Mine (BCBS) didn't. Went through two appeals, and now an independent review. As...
Forum: her2group 05-23-2018, 10:42 AM
Replies: 71
Views: 19,549
Posted By KatherineM
Re: Cancer 'n Me

I am sending you lots of positive anti-gummy bear energy. I'm sort of in a similar boat. Lung mets were smaller on last scan (March), and my cough and shortness of breath were gone, but now, cough is...
Forum: her2group 05-11-2018, 05:28 PM
Replies: 71
Views: 19,549
Posted By KatherineM
Re: Cancer 'n Me

Flori -

I saw your note from my cyberknife thread. Wondering what was going on with you. I am sending positive energy and lots of cyber hugs!

Don't know if you saw my update on the other...
Forum: her2group 04-20-2018, 10:27 AM
Replies: 18
Views: 7,801
Posted By KatherineM
Re: Scared and Confused

Good news: I met with my radiation oncologist on Wednesday, and she showed me my latest brain scan. I had 16 lesions, the biggest one (16mm) of which was cyberknifed on March 14. I am currently on...
Forum: her2group 04-06-2018, 05:36 AM
Replies: 39
Views: 14,528
Posted By KatherineM
Re: Kadcyla ‘n me

So good to hear from you, Flori, and to hear that your latest Kadcyla treatment was a little easier.

My latest CT scan of my lungs shows smaller lesions, which means the Haloven is working. I...
Forum: her2group 03-26-2018, 06:05 AM
Replies: 39
Views: 14,528
Posted By KatherineM
Re: Kadcyla ‘n me

Ugh, Flori. I hate all the side effects, and the fact that we must poison our bodies to (hopefully) knock out the cancer. It makes no intuitive sense. I hope that you're feeling better today, and...
Forum: her2group 03-20-2018, 09:46 AM
Replies: 33
Views: 12,074
Posted By KatherineM
Re: Cyberknife or Whole Brain?

Thanks, Flori. I am grateful to you, and to everyone who has shared a bit of their journey here. It is a terrible camaraderie to share, but it does help to know that one is not alone. And, yes,...
Forum: her2group 03-19-2018, 03:23 PM
Replies: 33
Views: 12,074
Posted By KatherineM
Re: Cyberknife or Whole Brain?

I am four days out from cyberknife, and, though I am not experiencing any side effects so far - knock on wood - I have been sort of freaking out about the grim statistics surrounding brain...
Forum: her2group 03-15-2018, 11:00 AM
Replies: 33
Views: 12,074
Posted By KatherineM
Re: Cyberknife or Whole Brain?

So I broke the cyberknife. Had to reboot the computer with 15 minutes to go. Lovely. Took an ativan and came home to nap for a few hours. Feeling sleepy, but normal enough. Yesterday, I had some...
Forum: her2group 03-11-2018, 05:31 PM
Replies: 39
Views: 14,528
Posted By KatherineM
Re: Kadcyla ‘n me

Flori - I hope the kadcyla treats you better. You are such a champ, and I would love to have your longevity, but the constant list of drugs, side effects, tests, and recurrences is wearying, even for...
Forum: her2group 03-11-2018, 07:52 AM
Replies: 33
Views: 12,074
Posted By KatherineM
Re: Cyberknife or Whole Brain?

Thanks, SoCalGirl. Sadly, I have 16 lesions, and am only treating the largest with cyberknife, so I'm not eligible. Good to know, though, that HER2+ brain mets are getting attention. Hurry, hurry, is...
Forum: her2group 03-10-2018, 08:41 AM
Replies: 33
Views: 12,074
Posted By KatherineM
Re: Cyberknife or Whole Brain?

So, I decided to get cyberknife to the largest (16 mm) lesion, on Thursday, March 15, the day before my 59th birthday. They are putting me back on Tykerb, and Haloven, for blood brain barrier, to...
Forum: her2group 03-03-2018, 06:13 PM
Replies: 33
Views: 12,074
Posted By KatherineM
Re: Cyberknife or Whole Brain?

SoCalGirl, you are my hero! Rock on! And may I be so lucky to be 10 years out with lung and brain mets. Thank you for your inspiration!
Forum: her2group 03-03-2018, 08:33 AM
Replies: 33
Views: 12,074
Posted By KatherineM
Re: Cyberknife or Whole Brain?

Also, Haloven seems to cross the blood brain barrier, which I had, coincidentailly, just gone on. I'm going with cyberknife; thanks, Freakzilla. With a close watch on the smaller lesions, which are...
Showing results 1 to 25 of 44
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