Houston Cancer Club

illimae

For over a year I’ve wondered why someone hasn’t started a lunch club of sorts for us Houston folks, so I decided to give it a shot. I’m thinking of meet ups for lunch or other events if anyone is interested. If so, I’m happy to plan the first group lunch.

illimae

crickets.....

MinusTwo

Mae - funny, I just saw this post. We have since had lunch obviously - thank heavens because we wouldn't be doing do so now. I have had lunch with a couple of other Houston area BCO members, but that's going back awhile. If you move before this darn shutdown is over - I'll host when you come back for sporadic doc appointments.

Anyone else?

MinusTwo

I did hear back from JB She lived in Dayton when we met but now lives in Bay City. Still - she's definitely up for lunch later this year. I'm going to go back through some of my private messages and see who else is in the area. I'm sure LW has enough to think about now, but this might perk up her spirits.

illimae

I’m down, maybe sometime next month, let’s see how things look.

MinusTwo

You're braver than I am Mae. I won't even get my first shot until 1/29. My assigned time is 1:25 at Methodist WIllowbrook. And even though I've had the appointment since January 2nd, I'm wondering if they will have enough to go around since it's in the afternoon the last day of the month.

LW422

LW, checkin' in from da east side!! Count me in.

Beesy_The_Other_One

Minus--so glad to hear you have an appointment for the vaccine!

If Jana's willing to drive two hours one way to have lunch, I say we do it as soon as everyone feels safe to do it (she lives in Woodville!).

LW, do you have a start date on chemo? I saw they are considering you TN. Have you asked about the vaccine, whether you could get it while on chemo, or at least the first one before?

LW422

Hi Beesy. Sorry for the late reply; I need to add this thread to my favorites. My chemo starts next Tuesday and I'm in a tizzy because they've asked me if I'd participate in a clinical trial for IBC. Not sure what I think about that other than I dread more biopsies and "unknown" side effects. I need to give them an answer ASAP, as usual.

I haven't asked about the vaccine; frankly it's the last thing on my mind these days. Hope everyone is doing well.

illimae

LW, good luck with your possible trail. I was somewhat reluctant at first too, so I baby stepped my way in and still am. My first was just a blood draw for measuring CTC’s (circulating tumor cells), 2nd was a single dose of Perjeta prior to chemo, I was randomized to that but don’t recall the actual trial, 3rd was the EXTEND trial to see if radiation with systemic therapy is a bigger benefit than systemic alone. None have been risky to me, so I do as many as I am asked to but I’m saving the tougher ones until my condition changes.

LW422

Thanks Jana and illimae. I had previously signed up for a couple of "studies" where they asked for blood and other specimens, including permission to take breast tissue when I have the mastectomy. I'm glad to "share" any of that since I really wasn't planning to have the boob mounted over the fireplace or anything. " /> I am also participating in the IBC Registry and not certain what that entails at this point. I have completed a couple of personal information questionnaires, but that's it so far.

I studied the materials on the clinical trial and after seeing that I would have to make extra trips to the medical center for more biopsies, blood work, extend time for my chemo, etc. and that my insurance would be billed for it... I decided to decline and have the standard treatment for now. I am already on information overload and nervous about chemo so I don't need more on my plate. Somehow it rubs me the wrong way that they want their drug tested but that they don't pay for the testing.

And how weird is this; I called the researcher to tell her I decided to decline and she said they had just heard back from my insurance company. Aetna said they would not pay for the treatment because it is "experimental." So that was all I needed to hear. I'm certainly not going to pay out of my own pocket to be a guinea pig.

LW422

Jana--I believe it is the right decision for me. I'm just ready to get my treatment started and put my energy into that for a time.

MinusTwo

javcaJana OMG, your mother died at age 26? How hard it must be for you to share that information. Thanks. Hopefully we ail continue to share, AND meet one day when it's safe again.