Monday, August 31, 2009

Zeroing In

We had new scans done today that showed growth in the nodules in the lungs.  Therefore they want to postpone the surgery to remove the lymph node so as to not delay treatment to try and combat the lung nodules.  If we had the surgery done now, it would be two or three weeks before they could start me on a drug treatment while the wound healed and I recovered.  So the current game plan (subject to change at a moment's notice) is to start me on a drug treatment to combat the lung nodules and do the surgery if needed at a later date. 

We will hash out some more of the details out tomorrow with the physician and hopefully have a better defined approach then.  But for now, although we are zeroing in on it, the final strategy is still a bit fuzzy.

Tuesday, August 18, 2009

Houston - Round 2

To start off I would just like to send a thank you to everyone. We are continually amazed at how kind, generous and thoughtful people have been. We don't feel deserving of it, but it is very appreciated.

I have now had a discussion with Dr. Patel in Houston after the department team meeting. He has given us some options to consider. I have discussed those options with my family, Dr. Liz Hammond and Dr. Dave Gardner (great family friends that have helped me through this from day one), and my doctor here, Dr. Noyes.

Based on the recommendations from Houston and the above discussions, we've decided to go back to Houston for further treatment. There are still a few loose ends regarding the exact treatment that we're trying to tie up in the next couple of days, but nonetheless we're headed back to Houston. On Monday 8.31.09 I will meet with Dr. Patel and a surgeon to begin to formulate a game plan. There are a couple of questions that we won't have answered until shortly thereafter. Mainly they want to know if the tumor in my lymph node or the nodules in my lungs are growing. They will determine that by performing new CT and MRI scans directly after my visit with Dr. Patel and the surgeon. If they are not growing, they will go in and remove the cancerous lymph node and then monitor the lungs in the future to watch for future growth. At this point, we may or may not start a drug treatment called IL2. We'll have to wait and see.

The other option if the tumors are growing gets a little more complicated. They will want to harvest some tissue from the lymph node tumor. From this harvested tissue they can then separate the lymphocytes from the tissue. These lymphocytes are part of the immune system that fights off the cancer. They take the lymphocytes from the harvested tissue and grow them in the lab from thousands to something exponentially bigger (billions if I remember correctly). I'll come back later to what these are used for. The question will be if the tumor is growing, do they want to start me on a regimen of IL2 first before harvesting the tissue, or just go ahead and take the tissue. And that will be a game time decision made between us, Dr. Patel and the surgeon.

So why do they harvest and grow the lymphocytes? These lymphocytes become TIL (Tumor Infiltrating Lymphocytes). So in tandem with the IL2 drug treatment they start me on chemo to kill off all my other lymphocytes (lymphodepletion). This makes room for the TIL to come in. At some point they inject me with the TIL and it goes to work killing off the tumors. It doesn't work every time, but has shown some promising results.

From scenario one (remove lymph node monitor lungs) the lymphocytes will be harvested from the tissue and the TIL grown for possible future use if the nodules in the lungs grow.

Sorry for the lengthy explanation. Thanks again for your support.

Wednesday, August 12, 2009

MD Anderson

I have now had the chance to sit down with the doctor at MD Anderson. It was an encouraging visit. We discussed my history and my current condition and then he went over a number of possible treatments that he might recommend. All of which have their pros and cons, but many appear to offer promising results. I won't bore you with the details of the various options.

At this point he is going to discuss my case with the rest of the melanoma department on Monday in their team meeting and get back to us by the middle of next week with what they would recommend. Depending on the treatment there is the possibility of administering at least some of the treatment in SLC which is encouraging.

When we know more next week we'll run another update.

I can't say enough thanks to everyone for the support and kindness that has been extended to our family. It is very appreciated!

Friday, August 7, 2009

Appointment

I have an appointment in Houston with the Melanoma Medical Oncology Department at the MD Anderson Cancer Center on Wednesday the 12th. My dad has offered to go with me to be another set of ears as we visit with the physicians there.

We'll know more next week!

Thursday, August 6, 2009

Update (Email) #3 - 08.05.09

It kind of feels like every time I think we are going to zig, we zag. Right now we have changed plans a little bit. The original plan was to take part in the study with the doctor I have been seeing since my original surgery in '05. He is an excellent surgical oncologist, however it's not surgery that I need right now. It has been strongly recommended to me to see a medical oncologist that specializes in the treatment of melanoma. Since there are no melanoma specialists in Utah, I am trying to get in to see Dr. Patrick Hwu at the MD Anderson Cancer Center in Houston. I will get a consult there and try and determine what the best possible treatment for my situation will be. This will delay treatment temporarily, but in the long run we feel it's worthwhile to make sure we start in the right direction.

Right now I'm going through the process of getting an appointment there to see Dr. Hwu. It may take a couple of weeks to get in, so we're in holding pattern a bit longer before we know what we're doing and what the treatment will be.

I want to continue to thank everybody for the support that we've received and we know that with a lot of help we'll make it through this.

Update (Email) #2 - 08.03.09

Thanks everyone for the encouragement and support we have received since I sent the last email. It was certainly not my intent to attract so much attention.

I talked to my doctor this afternoon and he has the results of the CT's and MRI I had last week. It turns out that the cancer has spread to my lungs. As per the doc there are several small nodules in the lung tissue. For the doctors in the house, hopefully that means something, for now I can't quantify how good or bad this is. My doctor would like to enroll me in a clinical trial of a new drug that uses your immune system to fight off the cancer. If I enroll in that study I will get randomly assigned one of two tracks. Track 1 being the drug treatment, Track 2 being chemotherapy. I will know tomorrow what the prescribed treatment will be. In the meantime I am trying to learn all I can about my options and what will be best for me and my situation.

Update (email) #1 - 07.23.09

All -

I have some news that I wanted to pass on to everybody. I'm sorry to do it in an impersonal email, but I thought you would like to know.

Most of you know that in '05 I had a malignant melanoma (cancer), in the form of a mole, removed from my back. As part of that procedure they also removed some lymph nodes in my groin area. For the last month or so I have had a constant dull pain in the area the the lymph nodes were removed. At first I thought it was a pulled muscle. But after lingering for a couple of weeks and not getting any better, I thought it might have something to do with the lymph nodes. I went in to see my doc on Wednesday and he had an ultrasound done to look at the nodes. Turns out that one of them is about 3 cm in diameter. The doctor stuck me with a needle to get a tissue sample from the area and sent the sample off to the pathologist to look at. The pathology report came back positive for malignancy. So it appears my cancer is back.

"Where do I go from here?" is still a bit unknown. Next Thursday I have MRI and CT scans done to look for suspicious lesions elsewhere in my body. If those come back clean then the lymph node gets removed, and after that it sounds like there are a multitude of treatment options I may be in for. It sounds like chemo is a possibility. If the scans show something suspicious, then I don't know what happens yet. I'll get the results from the scans back next Friday.

First Post

To start out, I would like to thank everyone for the overwhelming support we have received.

Up until now I have been sending out emails giving updates as we learn more. We are going to start using this blog to get the updates out.

I am going to start out by copying the first emails that I have sent out, so as to be able to tell the story from the beginning.