Thursday, December 31, 2009

Unfortunately we didn't get any news today about going to NIH in Maryland. The lady who is our contact out there was out of the office today. Can you believe that? It wasn't even a holiday and she had to take a day off.. Who does this?? So we will get the final answer on Monday.

Many of the people who pray for us like to be very specific with their prayers, so I got to thinking that I would let everyone know what Jon and I are praying for and what we want to happen, so if you wanted then you could be praying for the same thing. We are praying for a clear test result from the brain MRI. We don't want cancer here people. For obvious reasons. :> and also we are praying that the National Institute of Health will give the okay for Jon to start the TIL harvesting out there and one of their clinical trials for the B raff mutation. THis is our hope and prayers. We think this is the place we need to be right now and that this will give us a future.

Good news and Bad news are always suppose to go together, right? Well we have received our bad news, and now it is time for the good news. Thats not too much to ask and I think that our Heavenly Father will try and give that much to us "> Everyone take care and don't forget the fast on Sunday.

Wednesday, December 30, 2009

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.

Saturday, December 19, 2009

Hi everyone.
We have been out of the hospital for a week now and so happy to be home. Jon started Radiation to his pelvic bone this week to help with the pain he has experienced. They have scheduled him to have 10 treatments, which is one a day for 10 days in a row. It seems after his second treatment that he has already experienced some pain relief in that area, which has been great. But, it has taken all of his little energy that he had completely out of him. Its like he can't get enough good sleep even though he is sleeping all the time.
Monday he will start the new chemotherapy drug we mentioned in an earlier post called Zometa. He will be getting this drug every 6 weeks to help with the bone destruction that has occurred because of the cancer.
I have mentioned before that Jon's gallbladder has been acting up some during treatments and that has continued to bother him. He always has a sick stomach and lots of nausea and vomiting. Even though he is eating now he just lost another 3 pounds. We are going to get this problem hopefully checked out on Monday also along with his chemo and radiation treatments that are scheduled. I am not sure yet what will exactly come of it.
Jon has his next pet scan and CT scan scheduled for December 28th. It has already been 6 weeks.. Time is just flying by for us. We will not get the results until December 30th but we will be sure and post something soon after. I can honestly say that I am so scared to even see results at all and keep hoping that it won't be bad news like the last one.
Thank you everyone for your support you have given us. We didn't know we were so loved by so many. We have been able to meet so many good people that it has been just amazing for us. Thank you for everyone who has donated to us also. I wish I could send everyone a personalized thank you note to say how really blessed and thankful we are, but hopefully everyone can understand that I just don't have the time, but I do care and thank Heavenly Father every night for such wonderful people in our lives. All of you have helped us so very much. You give us strength to keep going everyday instead of just laying in bed and crying.
Well, that is about everything for now. I will keep everyone up to date about this next week. Take care and have a Happy Holiday season with your family.

Tuesday, December 8, 2009

Another treatment session at Huntsman Cancer Institute

"So far so good.. Jon received his 5th doses of IL-2 around 5 pm. tonight. He is doing extremely well and the doctors are very happy. He is scheduled for his 6th dose at 1 am, if everything stays the same.
All of his vital signs are good so far and he hasn't had to be put on any blood pressure medication. so far so good huh?? His gallbladder is starting to act up and his bilirubin level has risen a lot just since yesterday. Dr. Grossman says we can either put a drain in the gallbladder if it gets to bad or just push through it. He was very happy how Jon's gallbladder last time got better so quickly, so he thinks its worth it to just keep going with the treatment.
Jon is remaining pretty content and happy this inpatient treatment. He is just going to "push through it" he says. He is staying in good spirits and not getting to homesick. We talk to our kids everyday on the phone. :)
The new plan: After talking with our specialist Dr. Grossman today is that during Jon's home stay after this week, we will be going back up to Huntsman to do some outpatient Radiation treatments to his pelvic area to help with the pain that has been pretty much unbearable. (This is one of the reasons he cannot work because he cannot sit for long periods of time or even walk for that matter) The radiation will be everyday for like 5-6 days in a row. (counting the week of Christmas). During that radiation Jon will also be receiving some chemotherapy medication called Zometa. Zometa is primarily used in patients that have had breast cancer and have had their cancer spread to their bone, but Dr. Grossman has a good feeling that this Zometa will stop the cancer from progressing any further in Jon's bones. (Unfortunately, the IL-2 treatment has not had good results with treating cancer in the bone, so something else is needed to help with that cancer) We will start receiving this chemotherapy every 6 weeks along with the IL-2 and radiation.
Thank you for all of your thoughts and prayers. I would also like to add to all our friends and family that we really appreciate everyone that has been spreading the word about what we are going through because it has helped us make new friends and also with getting donations. We love everyone and thanks again for thinking about my family during this holiday season. Tiffany"

Friday, December 4, 2009

Updates of the past week and a half

I have some updates to post and I know it's been a while since the last post so bear with me! I received lots of updates from Tiff in an email so all of the following news is what she sent to me.

"Review of the Interleukin II therapy - Jon was scheduled to have 14 doses of IL-2 while at the hospital and the doctors and nurses, usually say "the more the better" when it comes to how many doses, but your body is what tells them the "stopping point" (since it is different for everyone) and when it is too dangerous to continue. Jon's body gave out after the 7th dose. He had a major gallbladder attack so they were not able to complete anymore doses. Luckily they did not have to remove his gallbladder, they just gave us a very expensive antibiotic (5 pills at $32 a pill after insurance). Also Jon's bilirubin level was at a 7 when normally in your body its like a 0.1, so he was very jaundiced and that was another indicator of his body's stop point.

Dr. Grossman, our specialist and oncologist, said that during our second IL-2 (which is this Sunday Dec. 6th) if anything like his gallbladder attack happens again this time around that maybe removal of his gallbladder or putting some type of shunt into the gallbladder to drain off the toxins might be our option so we can continue with the treatment as much as possible.

Overview of this past week and a half at home -
Jon has been very tired still and is sleeping about 18-20 hours per day. He lost all of the excesses fluid all over his body every quickly (within 4 days) after discharge, but had a hard time losing the extra fluid in his lungs and had to go on another antibiotic to help aid his body in recovery and prevent Pneumonia. (Oh great, more money in antibiotics! Luckily the good old insurance covered a bit more.) He has not had an appetite at all and has a hard time eating (lots of nausea and vomiting). When we first went to Huntsman on Nov. 1st Jon weighted 164 lb. and now he is down to 141 lb. He really can not afford to lose anymore, and that is what the Doctors say also, not just his wife! If you know Jon at all, you will know that he is very stubborn and this has been a very hard thing to get him to eat. If it doesn't sound wonderful then he won't eat. If anyone knows of suggestions of high calorie, high fat foods I would love to receive them!

This past Monday and Tuesday have been a little bit better and he has a little more energy to play with the kids, go out a little, etc. He was able to do some Christmas shopping for the kids and kind of just have fun.

I don't want to get anyone's hopes up or anything but I just have to share this news because it has really given me hope for this treatment of IL-2. I don't want to jinx myself and think this is something great and then get bad news at the Pet scan at the end of December.....but while Jon was receiving treatment and the first 5 days out of the hospital, he had no pain in his pelvic bone and didn't have to take any pain meds which was a big thing for me because lately he has had to have pain meds non-stop to cope with the pain. So then not having to have any of them for a little while really gave me hope. Also, on Jon's left side of his back you can feel the cancerous lymph node and I swear it got a little smaller. I am really not sure if any of this is an indicator of the treatment working, but really I didn't think I would see any changes and seeing these small things has really made me have hope. :> I just hope there are no more disappointment at the Pet scans.
We are scheduled to go in this Sunday to stay at Huntsman to start the last part of the first scheduled IL-2 treatment. We will be up there for the whole week and they will try to do as many doses that his body will take.

On a side note: I talked to Jon's boss at work and we discussed a leave bank for Jon that all State employees can donate their sick leave time to. Jon will completely run out of all his annual and sick leave right before Christmas and he has to at least have 5 hours per week in order to keep his insurance. Which of course is vital to us right now! (The first 5 days at Huntsman for treatment cost $67,000 we just the bill that was sent to our insurance!) Also, Jon will be going on short term disability in January which is only 60% of his income, so if state employees will donate time to him then he can have more paid leave and more treatment, so will please everyone donate time if they have it."

That was the end of the email. Thanks to everyone who has been so helpful and caring to Jon and Tiffany and their family. And please know that your prayers, donations and anything else you can or have sent their way are very much appreciated! I am so glad that so many people are stepping up to help them, and I am so glad that they get to see how much they are loved! We love you Jon and Tiffany (and Max and Kena too of course :D )!