HER2 Support Group Forums - View Single Post - devastating news im so sad/worried/anxious everything

StephN · 07-24-2008, 10:41 AM

Dear Sue -
Forming a plan is the best way to tackle a problem.

Glad you took the first step of having a frank talk with your Mom. I am sure she appreciates that more than you know. She needs a good ally right now, if there is no one else close to take on that role, it is your duty.

When you see her oncologist take a note pad. Write down what he says and ask him to slow down so you can make detailed notes. Any words you do not understand, write them down and ask him for an explanation in words you can understand. This way you will have the technical terms to look up for more information when you get home. Ask him to draw diagrams if needed.

About a translator. Maybe you can call the nurse who works under your Mom's oncologist. Ask that person if someone could be available to translate when you have the appt on Aug. 1. Even if you get a translator make those detailed notes as best you can.

Social services include helping with chores around the house, and any other assistance the patient may need, depending on what they are able to safely do. The nurse can put you in touch with a county office if the hospital itself does not have such an office.

***What you need to find out is the number of mets your mom has, their specific location, when she will have followup scans (and what kind) or blood tests, etc. Also how fast they are growing or if shrinking on the current treatment. Many people have bone mets successfully RADIATED. I suggest you ask about that. This is basically a crash course for you.

In the meantime, try to do some of the heavier work that might put your Mom at risk. Or do it WITH her if she will not give up certain of the tougher chores.

You have our love and best wishes for a good outcome for your Mom.

07-24-2008, 10:41 AM	#2
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear Sue - Forming a plan is the best way to tackle a problem. Glad you took the first step of having a frank talk with your Mom. I am sure she appreciates that more than you know. She needs a good ally right now, if there is no one else close to take on that role, it is your duty. When you see her oncologist take a note pad. Write down what he says and ask him to slow down so you can make detailed notes. Any words you do not understand, write them down and ask him for an explanation in words you can understand. This way you will have the technical terms to look up for more information when you get home. Ask him to draw diagrams if needed. About a translator. Maybe you can call the nurse who works under your Mom's oncologist. Ask that person if someone could be available to translate when you have the appt on Aug. 1. Even if you get a translator make those detailed notes as best you can. Social services include helping with chores around the house, and any other assistance the patient may need, depending on what they are able to safely do. The nurse can put you in touch with a county office if the hospital itself does not have such an office. *What you need to find out is the number of mets your mom has, their specific location, when she will have followup scans (and what kind) or blood tests, etc. Also how fast they are growing or if shrinking on the current treatment. Many people have bone mets successfully RADIATED. I suggest you ask about that. This is basically a crash course for you. In the meantime, try to do some of the heavier work that might put your Mom at risk. Or do it WITH her if she will not give up certain of the tougher chores. You have our love and best wishes for a good outcome for your Mom. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau** Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.