Re: Cancer in Spinal Fluid - given 6 months
 

Many prayers for you and your apt tomorrow. There will be a plan!

Re: Cancer in Spinal Fluid - given 6 months
 

Sayoon,

I'm sorry to hear that you received such heart wrenching news. My wife (NEDenise) was diagnosed with the same thing but far to late to treat it. From my experience, I would urge you to get treatment fast and don't take no for an answer. Remember, the squeaky wheel gets the grease! Don't wait for a reply, make your call the one that everybody wants to solve and not get again.

Ted

Re: Cancer in Spinal Fluid - given 6 months
 

Ted,
I agree that Denise did not have here brain mets found early enough and the work done was insufficient to treat her. I wish that she had the same options and outcomes as Nina. As always, I thank you for contributing and know that the loss of Denise is something that has hurt you and others on this board.

Always ask more questions than you are comfortable with. Always make sure that you get the best treatment you can. And never give up.

Re: Cancer in Spinal Fluid - given 6 months
 

Day three at MD Anderson. I see Dr. Loghin today the same doc you guys have RolePaul. I am anxious to see what options she has for me. Thanks again everybody your posts it mean the world to me. I don't feel so alone. I am having a hard time being so far from home so its nice to know I have a Her2 family!

Re: Cancer in Spinal Fluid - given 6 months
 

MD Anderson is a scary place and it is easy to get lost in the corridors. We stay at the Crowne Plaza and ask for the Cancer Center rate. Many of the hotels have a discount for patients. You should ask if you are staying in one. Always see if they can put more appointments into your day so it shortens the stay and you can get home sooner. Tell Dr. Loghin that Paul from Nina and Paul recommended you to see her. Listen carefully as it is important about what she might say to you. I go with Nina during these times as I listen differently than Nina does. Let me know how it goes. We are there on 5/18 if you are going to be there.

Re: Cancer in Spinal Fluid - given 6 months
 

I hope you have a "listener" with you. And some way to take notes. Or record on your cell phone. I always went brain dead in these sessions
Keep the faith

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon, thinking of you all day! How are you?

Carol Ann

Re: Cancer in Spinal Fluid - given 6 months
 

Paula,
Been thinking about you and your visit to M.D. Anderson. Keep us posted.
Pam

Re: Cancer in Spinal Fluid - given 6 months
 

I wish you well. I talked to this doctor on the phone but for some reason she was not willing to take on Susan's care. It might have made the difference in Susan's longevity if Mona had been willing to see Susan.
Susan had full family support and we would have made the MD Anderson appointments work, if this doctor would have just agreed to see her.
Water over the dam, I guess, but I am still grieving her loss.
Ev

Re: Cancer in Spinal Fluid - given 6 months
 

The appointment was a little confusing to say the least. I am back in South Dakota for radiation and then suppose to go back to MD Anderson in 5 weeks. However......I have found that there are several clinical trials available as well. keeping all my options open!

Re: Cancer in Spinal Fluid - given 6 months
 

Sending prayers :)

Re: Cancer in Spinal Fluid - given 6 months
 

Elvin - so sorry to hear of your grief. Doctors play God to much I think. So not putting all my eggs in one basket

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon, what do you mean by " The appointment was a little confusing"? An appointment should not be confusing especialy at MD Anderson. I am happy you have several "baskets". I am thinking of you.

Re: Cancer in Spinal Fluid - given 6 months
 

Well, made it thru the first week of radiation. Still have alot of weakness in my legs but pain level has greatly improved. Will sart "buggin" Dr Lohgin for an appointment. Just don't feel that I can relax until the IT Treatment has started. If anyone know of another doctor that does this, let me know I am willing to do whatever it takes.

Re: Cancer in Spinal Fluid - given 6 months
 

Glad you've made it through the first week. I'm thinking about you and sending positive thoughts and energy your way.

Take care

Re: Cancer in Spinal Fluid - given 6 months
 

Radiation complete. Starting to come out of the fog. MD Anderson FINALLY got me an appointment for two weeks from now. In the meantime......I have an appointment in Austin for a clinical trial that sounds very promising. Onward and upward, not giving up hope however I do have to admit I am getting a little worn out. I know that there has to be a plan for me.

Re: Cancer in Spinal Fluid - given 6 months
 

The plan is for you to get better. The plan is for you to show people how to get around this problem.

Re: Cancer in Spinal Fluid - given 6 months
 

I agree with Rolepaul! There is a plan for you. You may be getting a bit worn down but that isn't going to stop YOU! You go girl!

Re: Cancer in Spinal Fluid - given 6 months
 

Ditto what Paul said. Get well. Thrive. Be you.

Re: Cancer in Spinal Fluid - given 6 months
 

Your fighting spirit is admirable.