Re: feeling less and less like I'll be here much longer
 

Thinking of you, too...just said prayer. Ceesun

Re: feeling less and less like I'll be here much longer
 

or a Phase 1 trial for another marker besides Her2?

Re: feeling less and less like I'll be here much longer
 

Hi Debbie,

Gamma-knife can be repeated when/if the little tiny ones grow bigger ... Several long-time survivors have used Gamma-knife repeatedly and brain mets were never the major problem.

Be sure to walk regularly to get your strength up as this is going to be a long, tough fight. Exercise increases endorphin which boosts both our mood and immune ability.

Hang in there. There is a 'Calling all stage IV Sisters' thread where you can read inspiring stories and discussions: http://her2support.org/vbulletin/sho...+stage+sisters Check out entry 278 to view the list of stage IV fighters (there are many more as the list hasn't been updated for a year.)

Ask any questions. Someone will have/find an answer for you. We are all in this together.

Re: feeling less and less like I'll be here much longer
 

I echo Lizbeth's suggestion. There may be new treatments that could help you.

I won't say "keep fighting" or "think positively." You get to feel what you feel. It's your life. You should do whatever gives you peace, and the best possible quality of life.

Just remember there's more to "healing" than being disease-free. Your wholeness is not dependent on your physical condition.

Nevertheless, if I were in your shoes I'd get a second and even third opinion, from a research hospital that does clinical trials.

Prayers and positive energy to you.

Re: feeling less and less like I'll be here much longer
 

i am so amazed at the perfect words uttered by the women here, deb. I second them all. what i am so in awe of, is that only women who have experienced the fear can say these perfect things.
debsing: i will say a prayer tonight for you. all the beautiful hearts here are holding you as we drift off to sleep tonight. Please feel our love bathing you.

Re: feeling less and less like I'll be here much longer
 

Sometimes words are hard to find, but I read this and wanted to share it. The love of your child is like no other, so I feel your pain.

When Saul was chasing King David and threatening to kill him, God restored his courage and confidence. When David lost his son, God restored his soul. David wrote Psalm 23; The Lord leads me besides still waters and he restores my soul.

I will say a prayer that God will give you hope, strength, and restore your soul for the road ahead just like King David.

Re: feeling less and less like I'll be here much longer
 

DEBSING -- first I am so sorry you are going through this ordeal. And I get that's it's really scary and I know that look from those who are coming to you that says, You're a dead woman. I'm all too familiar with that.

I just KNEW they were wrong. Super compassionate pp who just don't get what it's like to be on this side of those eyes.

You say you have a blockage. Have you been told that specifically? Meaning your bowels/intestines are blocked and you can't poop? Are they giving you enemas and meds to unblock you?

I'm confused, cause then you say no one will drain your ascites. That's a whole other issue. Is your belly bloated? Is a gastro doc conferring with you? Is it liver related? Does it involve pancreatitis?

Are you getting answers? It doesn't sound like it. Do you need a 2nd independent oncological opinion? That's what I'm thinking.

I pray for your physical and emotional relief.

Are they doing tests? Taking xrays? Getting to the root cause of your symptoms?

Please DO NOT DESPAIR OR ALLOW FEAR TO TAKE HOLD OF YOU AND YOUR ACTIONS. TAKE CHARGE OF THIS SITUATION IMMEDIATELY AND DETERMINE TO MAKE GOOD PROGRESS STARTING TOMORROW -- LIKE 6 AM TOMORROW!

Sending you hugs and the strength to take charge of this situation as best you can.

Do you have someone close to you advocating for you? If not, YOU must participate in this process and find out what is precisely going on with your body.

Please let us all know how you're doing, cause your Sisters truly care about you!

LOVE,
ANDI

I'm going to post this in your other thread too, cause I really want you to hear what I have to say...

Re: feeling less and less like I'll be here much longer
 

Debsing,
Sorry. I have been kind of busy for the past six to eight months. Nina had Intrathecal Herceptin with excellent results. Have they looked at this for you? Ommaya reservoirs are used commonly for Brain Primary cancer, so it was not a big jump to think about them for Her+ brain mets. Herceptin works for many Breast cancers not in the brain or spine. I was able to convince doctors to use this concept. Started at 40 mgs and increased to 80 mgs on a 62 kg body weight. High dose is needed due to the quick change out of the drug in the spinal fluid. 26 months since start of treatment. There is a spot that has been around for four years that is a little bit of a concern. The question is whether it is due to Radiation, return of disease, or from the Herceptin attacking the cells. Other options are triple the IV dose of Herceptin to overcome the blood brain barrier; disrupt the BBB with other means; or play whack a mole using SRS (Gamma knife).
Keep positive. This is an area that many realize is impotrtant.

Paul

Re: feeling less and less like I'll be here much longer
 

The goo news is that you have another option. And if the bad news happens, you will get a second opinion and/or a trial. Or perhaps you will decide that enough is enough. You never know what it will feel like when you climb the next step on your cancer journey. Whatever that step is, you will deal with it.

How old is your daughter?

Sending gentle hugs

Jacqueline