Needing Help and my frustration and pain

jones7676 · 02-06-2009, 06:10 PM

Hello/Help,

I have to tell you that it has been a nasty week. I went on Monday - they said they would start me on Ixabepilone (due to pet scan as mentioned before) but my odds of it working were only 10%. Typical labs etc. performed that day. Counts a little low but not out of treatment region.

I had a MRI the next day as I had a bad headache after it and a bit of a headache when there. And it was due in two weeks and was going to be done Friday as the surgeon was going to record an interview with me about it.

So I opted to wait until Thursday to start. The PA came in and said there was scar tissue growing again where they had previously done surgery and that one brain met was now 3 mm and the other 8.9 mm.

He asked me whether I wanted to continue chemo or quit as the chemo might kill me sooner....a somewhat truthful but also painful to say the least. I left and cried all day. He did not even offer the Herceptin or Tykerb as I had previously asked about as a possibility. He was nice enough to call me the Mohammed Ali fighter of those they have treated.....but....

I was disappointed as I had brought a list of meds on Monday I knew they were doing trials on etc. Not once did they mention that I might want to check into them somewhere else or discuss any of it with me. Only this one that they said would work 10% chance.

So, I have made an appointment in Chicago at Northwestern for the 16th or sooner if they have a cancellation that is one or more days away as it is a 7+ hour drive down for me to my daughters home (a good friend that works in cancer cell research suggested I go there as they did my original surgery etc and I have seen them from time to time and all notes go to my oncologist down there.

- and if they don't have anything to offer different I'm going to try and get an appointment at M D Anderson (right?) in Houston and my brother will fly me down. Apparently he has a friend that was sent home with only 2 weeks to live with breast cancer all over her including the liver (but not the brain) and she went there and is doing well.

Any better information or knowledge that might help me would be greatly appreciated....is there somewhere better to go? etc.

I'm having a hard time being my usual positive and research self and I think I'm in dire need of help - I know this may be it, but would like to give it my best effort.

Sorry this is so long! It was hard to pick the right icon too!

chrisy · 02-06-2009, 06:16 PM

Hi Barb,

I'm no expert at all on brain mets, but have you ever tried temodar for the brain mets?

SoCalGal · 02-07-2009, 12:07 AM

Barb-I am so exhausted right now that I must get some rest but I wanted to say that I will log back on first thing in the morning when I can think clearly and reply to you. Barb - you are not alone in this ring!
xo Flori

Sheila · 02-07-2009, 05:51 AM

Barb
I wish i could meet up with you on the 16th, that is my next day at Rush...all day. I can hear the fighting spirit in your post...you are not giving up, you are seeking more options....you are in my prayers that Northwestern or MD Anderson will have the right answers you are looking for...until your appointments, please know we are all there with you, sending energy and much love.

SoCalGal · 02-07-2009, 09:09 AM

Barb - Are all other mets gone - "only" brain mets left? The drug Chrissy mentions is good. I don't know about s/e.

I think at least ONE more fresh opinion is in order. Is there someone in your life who can set up the appointments for you who would be willing to call everyday if needed to persist since time is of the essence?

If it's possible to seek help from a friend or family member now would be the time.

This is what I wonder: Would being on Tykerb/Herceptin keep your body met-free with the tykerb having synergy across the Blood Brain Barrier with the temador? Should you/could you also be on DM1 trial and is that delivery system small molecule that crosses BBB? What about intrathecal herceptin?

I think that you will know in your heart when it's time to stop trying. Just because YOUR doc is out of ideas does NOT mean that all docs are out of ideas.

Also - I would set up the appointment at MD Anderson and make all those arrangements to go. Maybe spend this coming week organizing your file/notebook and making sure you have your own records up to date.
You should have a copy of your flow chart from your Onc's office plus copies of all Pet/Ct/MRI reports. Copies of your biopsies. Copies of your most recent blood work. I have a large 3-ring notebook with my entire BR CA history so when I meet w/a new doc I can easily access the info they want to see. I also have a one page overview table that summarizes the history. It's quite similar to the way we create our signatures.
The table lists: Date/DX/Treatment/Results/comments

xo Flori

Lori R · 02-07-2009, 09:29 AM

Barb,
I agree completely with Flori, your heart will tell you when it is time to let go. Your heart knows that it is NOT that time yet. There are many more options, and you need a Dr. that will help you find them.

Sounds like you are on the right track in terms of securing the professional assistance that you deserve. Help is waiting in the wings so gather hope from the knowledge that there ARE more options out there. You and your support team will find them.

Please keep us posted...we are rooting for you.

Love...Lori

ElaineM · 02-07-2009, 04:54 PM

I agree with Flori. Just because one doc is out of ideas that doesn't mean all docs are out of ideas. I would get another opinion. Please keep putting one foot in front of the other. I am cheering for you way over here in Hawaii.

Jackie07 · 02-07-2009, 07:44 PM

M D Anderson is definitely the place to go. A friend of mine whose 70-year-old Mother was told to go home because there's nothing the doctors (in 'my' hospital) could do for her end-stage lung cancer. She had been given three months. Her daughter - a nurse by training though hadn't worked since she's got children - took her to Houston and consulted with the doctors there. Mrs. Liao lived anoher three years - was given enough time to enjoy her grand children and give her testamony at church.

jones7676 · 02-08-2009, 07:16 AM

Someone did ask about about a brief summary of what all is going on - so I thought I would post it with it. In addition to the brain acting up again, I do have a new very active met in the right hand lung and a small one on the left which is invading one mode. I'm open to anything else someone has heard about that might be smarter.....I know I'm in a "tight" spot...but still looking for something hopeful. Thanks to all of you who have responded with care and/or good advice.

Midwest Alice · 02-08-2009, 07:52 AM

Hi, Barb, I spent last week at M D Anderson.While I was waiting for test , Dr. appt., and taking the van rides to and from the hotel I meet many people. I heard their stories of hope. Miracles are happening there. Call soon.

Joy · 02-09-2009, 11:09 AM

Just agreeing with everyone else. I don't have any kind of "vibe" that this is over for you at all. I think seeking help at the other institutions is wise and necessary. I have good feelings and thoughts about all of that. Take great care of yourself in the meantime and as my best friend (who, yes, LOVES statistics) always tells me, "YOU are your own data point."

sarah · 02-09-2009, 12:42 PM

Hello Barb,
Definitely sounds like another opinion or two is needed. MD Anderson wounds like a good place to go for that.
big hugs and love and keep fighting and enjoying life
sarah