Good news/bad news

Tom · 10-07-2006, 07:56 AM

Got Mom's MUGA results yesterday, and was fairly pleased. Her score went back up to 60% from 49%. Of course I was hoping that it would be closer to the 80% where she started before Herceptin, but I realize those days may be gone.

So now the onc has agreed to a PET/CT to see where we are. This guy is an angel from God. He is the most pleasant physician I ever dealt with. I asked him one day how he could be so nice all the time, and if when he finally got home at night he beat his wife and kids to make up for it...lol.

I also received the Tykerb EAP kit from GSK. Careful reading revealed that Mom does not qualify at this time, unless we find some hard evidence of metastatic disease. I'm not complaining, mind you, but it would have been a nice option until Tykerb is FDA approved.

The decision that must be made now is whether to restart Herceptin in the meantime if there is still no evidence of metastases. If something does show up, the answer is a no-brainer, and perfect for me right now as I am so worn out from all the worry I feel like I have no brain anyway. I think decision making in cancer treatment of a loved one is brutal, and you don't always get a second chance to do the right thing. You had to admire the persistance of Al. God bless you buddy. I hope you have recovered a bit from your ordeal.

Anyway, I would suggest to anyone that they call and order the Tykerb package from GSK if for no other reason than the chance to get ahold of the most detailed biotech brochure for any disease I have ever seen. There is even a CD inside. The information provided in this little envelope was nothing short of astounding. AND it's a well-printed, full color piece, so it's fun to look at the pictures as well...lol.

I'll let you know what the PET/CT shows. At least they won't scew up this time and have to do the PET and CT separately. I will also check to see if U of Penn has finished setting up their new proton accelorator yet. It was in the very early stages as Mom finished her XRT some time ago.

Tom

Joy · 10-07-2006, 08:55 AM

and easier decision making. You do so much for your mom and carry a big burden. It always amazes me how you keep your fabulous sense of humor. We love it and you and your mom as we have all gained so much from your insights and research. Get some rest and do some great things for yourself cause you deserve it.

Tom · 10-07-2006, 09:07 AM

Thank you for your kind words Joy. I will treat myself today to a few hours in the woodshop. I have been trying for so long to finish an 18th century granfather clock I have been building for Mom. I'm gonna make her a nice piece of sauteed fish for lunch, grill myself a disgustingly greasy burger on the Foreman, and head down to make some sawdust.

As we get older, we find new, less strenuous forms of relaxation...lol.

Tom

RobinP · 10-07-2006, 11:21 AM

Tom, you and Al are remarkable men, such dedication to your loved ones and the gals here. Thanks for mentioning the GSK kit, sounds interesting. Best to you and your mom.

suzan w · 10-07-2006, 12:59 PM

Your Mom is one lucky Mom!!! Where do you get the tykerb kit? Best of luck with the decisions...and the sawdust!

RhondaH · 10-07-2006, 01:45 PM

you and Al are the best...can't believe someone hasn't "scooped" you up yet. Take care and God bless.

Rhonda

Tom · 10-07-2006, 03:19 PM

Suzan,

Here is the info on obtaining the Tykerb Kit. I got it from Joe's convenient post near the top of the HER2 Group page. You just call the number and the operator will put arrange for the application info kit to be mailed to you.

In the U.S. call 1-888-4TYKERB (489-5372). - Patients should press (1) and will be transferred to a call center representative at the National Organization for Rare Disorders (NORD).

suzan w · 10-07-2006, 05:00 PM

thanks for the info!

chrisy · 10-07-2006, 05:17 PM

Tom,

Great news with your mom's MUGA...and I think it can only be GOOD news if the PET/CT reveals that she does not qualify for Tykerb because there is no sign of metastasis! I know what you mean tho about how tough decisions can turn into no brainers when you're suddenly faced with "new" information. That can sound appealing when you have no brain! lol.

Making choices in this setting CAN be brutal. But even when you have no brain (or it is just plum tuckered out with worry!) you - and I mean especially YOU, Tom, have a wise heart which will guide you to the right decision. Sometimes you just have to surrender... and listen.

Good luck with the tests, I'm expecting to hear good reports. Sending prayers as always!

Love
Chris

Bev · 10-07-2006, 08:08 PM

60 is pretty good Tom. Mom might have to sit out the next Olympics though. I'm glad all is pretty stable and am hoping the time done on H will give her some protection. BB

Vanessa · 10-08-2006, 12:30 PM

I have to agree that you are a wonderful son. I am so happy that your mom's muga results are improved. Also, it is wonderful that you have found ways to relax. Best wishes to both of you.

tousled1 · 10-08-2006, 05:47 PM

Tom,

Your mother is a very lucky woman to have a son so caring and giving. Here's hoping that her scan will be clear.

skibunny · 10-08-2006, 07:39 PM

Hi Tom,

I see you mentioned the Uof Penn. My Drs. are there, too. You mentioned a new proton accelorator being set up there. What is that for? Thanks.

SkiBunny

Tom · 10-09-2006, 01:01 AM

SkiBunny,

Proton accelerators are used in much the same way as the linear accelerators that are now used for radiation therapy for many tumor types. Protons deposit only a minimal amount of energy as they travel through the body. As they slow down, the amount of energy they deposit gradually increases. When their speed drops below a certain limit (the "Bragg peak"), the protons suddenly transfer all their remaining energy within less than a centimeter.

By varying the initial energy of the proton beam, radiation oncologists can determine how deep the beam penetrates before depositing most of its energy. Using computer simulations, they can adjust the maximum reach of the protons to within a millimeter, thereby sparing all the tissue beyond the tumor. This makes proton beams an excellent choice for treating tumors located next to sensitive organs, brain stems, spinal columns or eye nerves.

mom22girlz · 10-09-2006, 02:44 PM

I'll be thinking of you and your mom. I am so glad she has you to show support. My sisters and mother have not been there for me and so I know how much it really means. Thankfully, my husband is always there for me. I wish the best for your mom. sincerely, susan

Bev · 10-09-2006, 08:06 PM

Ski,

I think my "boost" after rads was done with proton. BB