options

Today I will have my blood drawn to be tested for a possible stem cell transplant trial. My brother sent his in yesterday and we need to be a 6/6 match to be eligible. Our chances of matching are about 25%. I know that this is probably my best option for treatment, but the risks, side effects, potential complications scare me. The worst thing is that the procedure would most likely result in me going on long term disability (never to return?) from work. I'm not sure if I'm ready for that, it's almost like admitting that I'm dying. I need some more time for denial :)

What is up with the Mayo Clinic?

I called the Mayo Clinic since there is one close to me. They had their doc review my info and they told me that there was no standard treatment that they could recommend but they would refer me to their phase I office. Today(almost three weeks later) I received a call and they would like me to come down next week for an appointment. They will not give me any information on what trials they might have. She said that I need to be "fully screened" and this would require anything from a 4 hour to a three day appointment - and I will not know until I get started. She said that I would need to hand carry all my records, scans and a tumor block and that they would need to retest my blood and do another scan even though I just had these done. She also told me that it is possible that my insurance may not cover them if I just had them done and they would expect me to pay. If this wasn't the Mayo Clinic I would think this was a scam.

The good news is that the hospital decided to release a tumor block to NCI , so they can test me for the gene therapy trial. THis took more than one week of aggravation. Give me my damn tumor!!

One step closer to a trial

I made the first cut for one of the trials. This is a good thing since time seems to be ticking by quickly. My blood passed the test and now they need a tumor block to see if my cancer overexpresses P53. They actually divide your tumors up into blocks and keep them forever. Luckily the nurse at my clinic is helping me gather all this stuff. It not as easy as you would think to get your records and your own tumor. It sounds like we need to fax some paperwork back forth today before the lab with release the tumor block. Once the tumor arrives in Bethesda it will take about 2 weeks to test it. I'm still working o some other trial oprions as a back up or if this wone does not give me a positive response.

My darling daughter graduated last night!!! There is another graduation ceremony today at her other school today. I thought I would have been long done with cancer by the time this day came. So much for strating my new life now that she is an adult.

Waiting for.........?

I guess I'm waiting to be matched with a trial to find some wonder cure for my cancer. I have heard back from Mayo and the U and they will not see me for a consult or second opinion. They both think I have exhausted all treatments and that my only hope is a phase I trial. I don't fully agree with that, but who would want to take on a new patient with such a grim prognosis.

There are 4 trials in Bethesda that I am trying to get into. I'm waiting for two more tubes to fill with blood and my clinic needs to send records and tumor blocks out there to be evaluated. My doc says that I shouldn't wait for more than 3 or 4 weeks before starting a treatment. I hope something turns up before then.

what they don't talk to you about....

I am surprised at the things that my doctor (or anyone in my clinic) have never discussed with me in the more than two years that I have been doing this Cancer thing. I have seen two different postings on the wall for support groups (one for newly diagnossed and one for metastatic) but no one has ever recommended then to me, asked if I had a support group or wanted to get hooked up with one. They like to ask the question " coping" ? yes, it's a one work question to which I always give a one word answer "good or fine" . The nurses type in the computer after they ask. Recently the docs new nurse asked the question and when I replied "fine" said "that's an improvement over last time" . I didn't even ask what that meant. When I asked directly how the disease would progress if we didn't find something thaht worked, the doc said in 6 months (aug 07) you will be feeling really bad and by the end of the year you will be dead. Interesting....they have never mentioned hospice, end of life planning - directives, wills etc...... I wonder when I will hear about that??

So much for doctors......

I saw the doc today. I already had my scan results, so I knew more Carboplatin was not an option. He says I need to find a trial. I guess the search is up to me and he will be available for consult. I have already started this based on our earlier emails. I showed him some of the other trial sthat I have looked at....I'm not sure how to read his response. It may be that since these are not standard treatments he doesn't know what to recommend or it may be that he doesn't think I will ever find anything that works and the trial stuff is too humor or distract me. I guess we may find out the answer some day.

More bad news

emails from the doc:

Hi Jill,
The scan could have been better. It is available in My Chart for you to see, but it showed some growth in the lung nodules. Nothing new was popping up anyway. I haven't heard of the specific trial you are talking about, but there are likely a number of phase I trials at various locations. These are new drugs being tested, with little data so far regarding safety and effectiveness. They are always administered at a university setting (or at the NCI in Bethesda). The idea of a trial is probably a good one, as the standard drugs have failed to work well. I'll see what I can find out about the NCI trial, but I think there may be other standard options to think about (as they are more likely to work, honestly). I will see you when you come in.
Dan

They do have a trial that may be interesting, but you need to have a sibling who is HLA matched to donate blood cells. If you are interested, I believe the NIH requires you to be the point of contact rather than the physician, so call and see what they say about the trial...
Let me know. Here's the trial info:
Phase I Trial of T Cell Exchange With Th2/Tc2 Cells for Allogenic Stem
Cell Transplantation After Reduced Intensity Conditioning for Metastatic
Breast Cancer NCI-04-C-0131