Test results and Our new plan

I have so many things to say in this post that I hardly know where to begin. First I will start with how our little patient Jon is doing and then the test results and then what the new plan is.

Jon is still having a lot of fatigue. A shower in the morning wears him out and after he has to take a little rest. He has experienced a lot of nausea, vomiting and upset stomach, which makes it very hard to keep down food and calories. He is trying a lot harder however to make himself eat because of the significant weight lose he has experienced (28 lbs. total). The good news though is that he is in pretty good spirits and seems to want to do a little more now, like getting out of the house for the movies, little shopping trips or just playing legos with Max. Some days are worse and harder then others, so we just live one day at a time and usually nothing is planned in advance anymore. Which I like the planning, so its been another adjustment for me.

We got the results from Jon's CT scan this afternoon and they were not very encouraging. The cancer in Jon's pelvic bone and liver have both nearly doubled in size from the last scan that was done 7 weeks ago. Also, there is 5-6 new spots of cancer in his lungs which is really crappy news for us. That said this means that Interleukin II did nothing to even stop the cancer from spreading at all and so we will not be doing it again up at the Huntsman Center. Also, because Melanoma cancer has a tendency to go for soft tissues, we worry again about his brain, so we will be doing another MRI of his brain on Saturday.

We have mentioned before the Tumor Infiltrating Lymphocytes (TIL cells) on an early post as a possible treatment option for Jon and now that is one of the major things our Doctor is looking into. Its a treatment that is not yet FDA approved and so they call it a clinical trial, but has shown very good results. What they do is harvest the TIL cells from your cancer in your body and then grow it in a lab for 7 weeks and then they put them back into your body while you are in the hospital for three weeks at time and they infiltrate the cancerous tumors and kill them. We were trying to get into MD Anderson in Houston, TX. to start this treatment, but they are so over booked that the first available opening is a month from now, which we don't have that much time to let the cancer grow, so our Doctor thinks that the National Institute of Health in Maryland is a better option for us at this point. Also, MD Anderson has a co-pay to start treatment down there of $40,000 and Maryland is almost entirely covered by the clinical trial part, except for the traveling and hotel costs.(so we have heard) Obviously, Maryland although further away is a better fit for us. We should know if the TIL cell harvesting is a possibly by tomorrow.

Some of you might now ask what do we do while the TIL cells are growing out for those 7 weeks? We don't have time to waste on this cancer, so in the meantime while these TIL cells grow, we have a few different options to consider. Our doctor gave us three choices.
1. We can start on a chemotherapy called CVD Interferon. This is three chemo-therapies in one, so everything is three times as bad. Its given up at Huntsman in their lab 5 days a week for 21 days, then one week off and then start again. Its very toxic to the body and sometimes hard to recover from. It would make Jon loss his hair, all energy levels and also make all his labs very low. The Doctor said it also might make the labs drop so low that the TIL cells wouldn't be an option right away. On the upside it has a response rate of around 60% which is very high. This response however can be short lived.
2. Another chemotherapy called Carbo/Taxol. This is two chemo-therapies in one, and so not so bad as option one, but still kind of miserable. Its only given one day a week. All of the same side effects that you would expect with chemo. Its response rate is only around 30%, but it might just buy us enough time to get the TIL cells harvested and ready to go.
3. At the beginning of Jon's treatments some cancerous lymphatic tissues were extracted from Jon's shoulder and sent to the lab. We have just received word that after examining those cells is was discovered that Jon has a B raff (+) mutation in his melanoma. This is good because 60% of melanoma patients have this mutation and so its more common and there is more clinical trials out there for it. Our doctor has the hope that maybe we can get into one of the clinical trials that are strictly for the B raff patients. They are being offered in many locations including Colorado, Texas and California. This would be kind of a dream come true if we could get into one of these trials, but the waiting list is extremely long. Some places have 12 spots and like 30 patients wanting to get in. It is a benefit for us that Jon is young and in good health other then this stupid cancer, but still it might be too hard to get in.

If we get the go for Maryland for the TIL cell harvesting we will be on a fight next week. Jon would then have to heal up for two weeks from the surgery, but then we have to get started on some type of treatment ASAP. Our doctor has said that Melanoma cancer is a very hard one to fight because once you have it, it takes off like a rocket and can spread so quickly, which we have already learned.

This is our wish list and hopefully everything will just fall into place. I think I prepared myself better for these test results because although I didn't like them, I actually felt okay with them and feel like everything is going to be okay. One of these treatments has to work right?? That is what I keep telling myself and praying for. I have a really good feeling about the TIL cell treatment and know it would be a good thing and maybe where we are suppose to be right now, so that means we better be able to go. I feel very scared with the unknown and don't like not knowing what's going to happen, but I keep praying and asking for these things to work and hopefully all of our friends and family are too on our behalf. (I know many are praying for us and we appreciate it so much. It has touched us so deeply and it is wonderful to have the spirit comforting us all the time)

I would like to do another family and friend fast for Jon on Sunday and hope everyone will join in for our family. We need the blessings so deeply right now to help us stay strong and get through these hard times ahead. I will post again tomorrow as soon as I know if we can go to Maryland or not. We will have the results of the brain MRI on Monday. I hope this wasn't way to much to read and overwhelming :> Everyone have a good New Years and stay safe. I hope 2010 brings us all great blessing and a little fun.