I think I just got bumped from Stage IIIC to IV

[DeenaH]

Not a good day for me today. I had a PET/CT on Friday at UCSF, and I got the report today. I had them fax it directly to me as well as sending it to my local onc, Dr. Slamon and my UCSF onc. I haven't talked to any of the doctors yet, but I understand enough of the report to know that I now have lung mets, returning cancer to superclavicular nodes, and new positive nodes next to my trachea (can't remember what those were called). I am actually more scared about the nodes than I am the lung mets. Obviously Herceptin is not working for me. My head is spinning because I really thought it would be good news, even though I knew I had lung spots. The doctors all seemed to think they would be nothing.

The way the report reads at the bottom is like this: Widespread pulmonary metaseses with superclavicular and the trachea node (whatever they are called) metaseses.

That may not be word for word, but it's the gist of it.

Any advice on where to go from here? One of the possibilities is to add Lapatinib to Herceptin. Another thing I want to look into is TDM-1 since I am now Stage IV. Anyone know what the requirements are for the trials that are still open? Any other new drugs I should research? I don't know if they will suggest more chemo at this point. So scary!!

[ElaineM]

First take a few minutes to breathe before you try to digest more of the report.
I find it very helpful to put not so good news away for a few hours and do something else before I attempt to digest it and decide what to do about it. Whatever is there will be there in a few hours or the next day. It won't grow that fast.
If you are interested in T DM1 trials you can go to www.clinicaltrials.gov and type T DM1 in the search box. A list of T DM1 trials with descriptions will appear. You can either print out the list or make a list with I. D. numbers of the ones you think you might qualify for and bring the list to your oncologist along with the link to the list. I just posted a link to an article about the T DM1 process and some information about expanded access to the drug. You can find alot of information about T DM1 on this site by searching for it. Perhaps some of the people who have tried it will respond to your post too.
Your oncologist might also have a list of the drug combinations that work especially well for your particular situation.
In the meantime hang in there and keep putting one foot in front of the other.

[bejuce]

I'm so sorry about this, Deena. I hope you remain strong, hopeful, and able to focus on finding a treatment plan that will work for you. Dr. Slamon is wonderful and should be able to help you.

Thinking of and praying for you,

Marcia

[Sherryg683]

Deena, I am so sorry you got bad news. I can remember like it was yesterday when my Oncologist told me I had lung mets. And it's been 5 years. It sounds like you have a plan of action ready and good doctors. I also suggest deep breaths, scream, cry,whatever it takes to relieve some of the stress you are feeling. I have become an expert cryer, never thought one person could have so many tears in them. I recently heard over the radio that crying is good for you immune system because it releases some chemical (can't remember the name) and relieves stress. I thought that might be why I'm doing so well, I'm a big cry baby.. You can do this, step by step. It's not a death sentence, it just means you have to fight a little harder and longer but you can do it....sherryg

[michka]

Dear Deena, I know how you feel. Sheila is pulling out of a difficult node problem and I am sure Dr Slamon will come up with a good plan.
After the shock of having mets, I am in the middle of deciding what weapons I am going to use and it is a difficult period. Sending Hugs. Michka

[Joan M]

Deena,

I'm sorry to hear about your cancer advancing. Mine spread in January 2007 after I had stage 2b in 2003. There are many drugs and treatments. The spots seem to be small, so any spread was caught early.

You will get a lot of support and information on this board.

Joan