Hi we get to come home today. Jon is still receiving radiation to his lumbar spine and will continue to do so as an out-patient for the next couple of days. They have also put him on a strong steroid, so hopefully no more damage will occur to his spinal cord. The IV pain medications have really helped to get this pain under control. We are so happy to go home. Neither of us has been able to get any sleep here because the nurses never leave us alone. I guess I can't blame them for doing their job.
Our Oncologist, Dr. Grossmann is unsure right now if this whole ordeal is an indicator as to the non-effectiveness of the chemotherapy drug, Temodar we were taking last week or not. There are a couple different areas on Jon's body that are superficial nodular cancer tumors that we can measure and feel, so we can determine their size. The plan is for me to check the measurements of these areas in one week and if there is any differences in size then I am to let Dr. Grossmann know. If they are growing then we will try a different treatment asap he said. I hope that is true however and there will be no more of a waiting period because we are really getting down to the wire.
Thanks to all of those who fasted with us and are praying for us on Jon's behalf. We are feeling good today. It's always good for me to have a plan and then a back up plan for my mind to be able to get some peace. We are staying positive and are still praying for a miracle and understanding of this trial. Thanks for all of the support everyone has given to us. Its wonderful to know how much we are cared for by so many.
Monday, March 1, 2010
Saturday, February 27, 2010
Hospital stay
Hi everyone. We had some scary news on Friday that ended us in the hospital, but luckily it seems like we might have caught it in time. On Thursday Jon had an MRI done of his left leg because of an increase in his pain lasting over two weeks that has been hard to control and because he has decreased feeling and sensation as well. He has been using a walker now at home and has had two falls in the last week :(
We got the call on Friday what exactly was causing it. The MRI showed that Jon's lumbar region of his spine has cancer and it was starting to press on his spinal cord. The Doctor was really concerned that Jon could if not treated ASAP loss all sensation to his leg along with the bowel and bladder control. So the first step was getting him checked into the hospital and getting treatment done as soon as possible. After discussing all of our options we and the Doctors decided on some radiation to his spinal cord and a strong steroid that will help with any inflammation in that area. We got started on the radiation today (Sat) and will have a total of 5 strong radiation treatments. The Doctors think that of course the radiation should help the pain and also that over time will shrink the tumors, but unfortunately the damage already done to his spinal cord is non-reversible.
He thankfully is more stable and started on treatment so, the Radiologists think there is nothing that should be holding us in the hospital any longer then tomorrow, but ultimately its up to our Oncologist. We want to go home and hope it will be tomorrow, but right now its not decided.
We are trying to stay positive and keep praying for a miracle. My in-laws have been researching some very promising clinical trials that are going on around the United States right now that I am going to ask our doctor about the next chance I get and continue to research on my own. I feel strongly that we are going to have to take more of an active role in Jon's treatment and have a back up plan just in case. We are not giving up the fight easily!! and we are not just going to do what the doctor says, we are going to do what's best and benefits us. We are going to pray and do what we feel we have to at this point.
My family and I have decided to hold a fast for Jon tomorrow. I don't feel like waiting until next Sunday because we need the blessings now. I know it is late notice, but if you would like to participate please do. Our little family is suffering and we need some positive thoughts and feelings in our spirits to keep us strong. Keep praying and stay positive for us. May the spirit be with you all and thanks for the support and love we have received. We couldn't ask for better people to be associated with then all of you.
We got the call on Friday what exactly was causing it. The MRI showed that Jon's lumbar region of his spine has cancer and it was starting to press on his spinal cord. The Doctor was really concerned that Jon could if not treated ASAP loss all sensation to his leg along with the bowel and bladder control. So the first step was getting him checked into the hospital and getting treatment done as soon as possible. After discussing all of our options we and the Doctors decided on some radiation to his spinal cord and a strong steroid that will help with any inflammation in that area. We got started on the radiation today (Sat) and will have a total of 5 strong radiation treatments. The Doctors think that of course the radiation should help the pain and also that over time will shrink the tumors, but unfortunately the damage already done to his spinal cord is non-reversible.
He thankfully is more stable and started on treatment so, the Radiologists think there is nothing that should be holding us in the hospital any longer then tomorrow, but ultimately its up to our Oncologist. We want to go home and hope it will be tomorrow, but right now its not decided.
We are trying to stay positive and keep praying for a miracle. My in-laws have been researching some very promising clinical trials that are going on around the United States right now that I am going to ask our doctor about the next chance I get and continue to research on my own. I feel strongly that we are going to have to take more of an active role in Jon's treatment and have a back up plan just in case. We are not giving up the fight easily!! and we are not just going to do what the doctor says, we are going to do what's best and benefits us. We are going to pray and do what we feel we have to at this point.
My family and I have decided to hold a fast for Jon tomorrow. I don't feel like waiting until next Sunday because we need the blessings now. I know it is late notice, but if you would like to participate please do. Our little family is suffering and we need some positive thoughts and feelings in our spirits to keep us strong. Keep praying and stay positive for us. May the spirit be with you all and thanks for the support and love we have received. We couldn't ask for better people to be associated with then all of you.
Friday, February 19, 2010
Finally time for an update!!
Sorry it has been so many weeks since my last post. We have been so busy with seeing so many different specialist's at Huntsman and with life in general that no time has been made for the blog.
We finally have been able to start the treatment at Huntsman. If you know us personally then you know that we have been having a lot of trouble with our insurance company approving treatments or even some prescriptions and chemo drugs. It has set treatment back and really wasted precious time that we don't have. Right now though luckily they have approved the next treatment thanks to our Oncologist talking on the phone for many hours and writing letters to the top people at the company.
We talked with a couple of Neuro-surgeons and the best option for Jon's small brain tumor was to do a newer procedure called Stero-tactic radiation surgery. It was a one time treatment that was as strong as three combined radiation rays. They said it had a very good chance of working with Jon because the tumor was about the size of a pea. They do not guarantee that additional tumors won't show up, but they said we can always do this again to another area if they do show up in the future. Hopefully we don't have to worry about that right now:> We start the chemotherapy tomorrow and will keep taking it for 5 days and then have two weeks off and then back on for 5 days. At the end of that time we will do all the mapping and scans again and hopefully the cancer will be stable at that time. We will keep going with this same treatment if it shows that it is working and until we can get onto a B raff clinical trial which is our best option.
The word around the Melanoma clinic is that Huntsman is finally getting this B-raff clinical trial and it should be available starting in about 2 1/2 months and that would be just in time for us, if we play our cards right. Right now with everything going on it seems too good to be true, but it would be just perfect. I talked with our doctor's nurse today about the B-raff treatment and she told me that they have another male patient that is about 6 years older then Jon and who was in as much pain as Jon and that after starting the B-raff clinical trial for 6 days he had no more pain because the cancer tumors were shrinking so rapidly. Wouldn't that be like a complete miracle if that happened to us. I would be without words.
So right now we just keep praying and keep hoping for a miracle to take place. We know it would be possible if Heavenly Father intended it and we sure hope He does. We are trying to hang tight and be patient for this treatment to start working. The doctor said to try and not measure any of Jon's tumors until 4 weeks have gone by, but its hard not to touch them and assess them always. We have been praying for understanding of this trial that has come upon our family and for time together. Please remember us and keep us in your prayers. We have such a long road ahead that it is hard to see the light at the end of the tunnel. It seems like it is a long way off for us. Take care and may we all have the Spirit to be with us.
We finally have been able to start the treatment at Huntsman. If you know us personally then you know that we have been having a lot of trouble with our insurance company approving treatments or even some prescriptions and chemo drugs. It has set treatment back and really wasted precious time that we don't have. Right now though luckily they have approved the next treatment thanks to our Oncologist talking on the phone for many hours and writing letters to the top people at the company.
We talked with a couple of Neuro-surgeons and the best option for Jon's small brain tumor was to do a newer procedure called Stero-tactic radiation surgery. It was a one time treatment that was as strong as three combined radiation rays. They said it had a very good chance of working with Jon because the tumor was about the size of a pea. They do not guarantee that additional tumors won't show up, but they said we can always do this again to another area if they do show up in the future. Hopefully we don't have to worry about that right now:> We start the chemotherapy tomorrow and will keep taking it for 5 days and then have two weeks off and then back on for 5 days. At the end of that time we will do all the mapping and scans again and hopefully the cancer will be stable at that time. We will keep going with this same treatment if it shows that it is working and until we can get onto a B raff clinical trial which is our best option.
The word around the Melanoma clinic is that Huntsman is finally getting this B-raff clinical trial and it should be available starting in about 2 1/2 months and that would be just in time for us, if we play our cards right. Right now with everything going on it seems too good to be true, but it would be just perfect. I talked with our doctor's nurse today about the B-raff treatment and she told me that they have another male patient that is about 6 years older then Jon and who was in as much pain as Jon and that after starting the B-raff clinical trial for 6 days he had no more pain because the cancer tumors were shrinking so rapidly. Wouldn't that be like a complete miracle if that happened to us. I would be without words.
So right now we just keep praying and keep hoping for a miracle to take place. We know it would be possible if Heavenly Father intended it and we sure hope He does. We are trying to hang tight and be patient for this treatment to start working. The doctor said to try and not measure any of Jon's tumors until 4 weeks have gone by, but its hard not to touch them and assess them always. We have been praying for understanding of this trial that has come upon our family and for time together. Please remember us and keep us in your prayers. We have such a long road ahead that it is hard to see the light at the end of the tunnel. It seems like it is a long way off for us. Take care and may we all have the Spirit to be with us.
Sunday, February 7, 2010
Results on Jon's MRI and CT scans
Jon had to do another round of scans to determine the cancer's size and locations yet again before we start a new treatment. Very bitter sweet. You want to start the new treatments, but on the other hand we have started not wanting all the details anymore about how bad the cancer is getting and how sick, sick, sick Jon is. That seems like the only thing we are getting right now is "oh look the cancer has doubled in size in this location" and "oh look the cancer is now here and in multiple other areas". Can you tell I am sick to death of hearing this from our Doctor? I don't know how much more bad news I can honestly take people.
Anyways, I will get along with all the results... First the good. Jon's pelvic bone and surrounding tissues that were affected with the tumor have actually shrink in size by a small bit. The Doctor thinks this is because of the radiation that was done in Dec. (that was good to hear because the damage their was very significant) Now the bad... The CT scan showed growth in the lungs and liver and new growth and spots now in the pancreas and spleen. Some new growth was expected because Jon has not received any treatments since the last scan. I should be happy that the cancer has only grown a small amount in some locations and not taken off the the races like it has done and Melanoma tends to do this, but again its bitter sweet.
The MRI scans this time did show growth measuring 7mm. in Jon's occipital lobe located at the back of Jon's brain. The Doctor thinks that because its so small and only in one location that there is a good chance to catch it, so we try and stay hopeful. This means now though, we will not be doing any other clinical trials until we can get this brain cancer treated and stable for 3 months.
The new plan because of the cancer showing up in the brain is to do a radial radiation treatment to the location. Jon will then be starting a pill form of chemotherapy. The chemotherapy is called Temodar. It is one of the few chemotherapy drugs that crosses the blood-brain barrier, meaning that it will help the cancer in the brain and will help the body. The chemotherapy has an okay reputation with side effects and keeping the cancer stable. Not so good of a reputation with actually shrinking tumors, but keeping the cancer stable at this point would be okay with us. :> We will be staying on this drug if it works for 3 months. We will get new scans every 8 weeks and just go from there. Our next appointment with our Doctor is scheduled for Wednesday and Radiation and Chemo. are both suppose to be started this week.
Thank you everyone for keeping us in your prayers. We both have been having a hard time with all the bad news coming one after another, but are now feeling the spirit and still having hope. I have a strong testimony in the power of prayer and I know that the spirit will comfort us and be with us during this hard trial in our lives. Someone left us a sweet Valentine message on our door and lawn this past week and I wanted to thank whom ever did it. It really made us feel special and feel really loved. So Thank you so much. Everyone take care and have a safe week. May the spirit of God be upon you.
Anyways, I will get along with all the results... First the good. Jon's pelvic bone and surrounding tissues that were affected with the tumor have actually shrink in size by a small bit. The Doctor thinks this is because of the radiation that was done in Dec. (that was good to hear because the damage their was very significant) Now the bad... The CT scan showed growth in the lungs and liver and new growth and spots now in the pancreas and spleen. Some new growth was expected because Jon has not received any treatments since the last scan. I should be happy that the cancer has only grown a small amount in some locations and not taken off the the races like it has done and Melanoma tends to do this, but again its bitter sweet.
The MRI scans this time did show growth measuring 7mm. in Jon's occipital lobe located at the back of Jon's brain. The Doctor thinks that because its so small and only in one location that there is a good chance to catch it, so we try and stay hopeful. This means now though, we will not be doing any other clinical trials until we can get this brain cancer treated and stable for 3 months.
The new plan because of the cancer showing up in the brain is to do a radial radiation treatment to the location. Jon will then be starting a pill form of chemotherapy. The chemotherapy is called Temodar. It is one of the few chemotherapy drugs that crosses the blood-brain barrier, meaning that it will help the cancer in the brain and will help the body. The chemotherapy has an okay reputation with side effects and keeping the cancer stable. Not so good of a reputation with actually shrinking tumors, but keeping the cancer stable at this point would be okay with us. :> We will be staying on this drug if it works for 3 months. We will get new scans every 8 weeks and just go from there. Our next appointment with our Doctor is scheduled for Wednesday and Radiation and Chemo. are both suppose to be started this week.
Thank you everyone for keeping us in your prayers. We both have been having a hard time with all the bad news coming one after another, but are now feeling the spirit and still having hope. I have a strong testimony in the power of prayer and I know that the spirit will comfort us and be with us during this hard trial in our lives. Someone left us a sweet Valentine message on our door and lawn this past week and I wanted to thank whom ever did it. It really made us feel special and feel really loved. So Thank you so much. Everyone take care and have a safe week. May the spirit of God be upon you.
Monday, February 1, 2010
Got the news today. Not a good thing..
Dr. Hong from NIH called and informed us today that Jon's TIL harvest was unsuccessful. They were not able to get any TIL from his cancer and so sadly we will not be able to continue with that treatment. We really felt hopeful about the treatment and it did seem almost too good to be true, but now we won't ever be able to find out. We are sad and are both having a hard time remaining positive with the future. Our future is very much unknown right now and right now we just need something to give us time. She gave us the option of trying another treatment at NIH that uses lab created TIL and full body radiation, but she was not clear on any of the data because it was in an early clinical trial and just kept saying how dangerous it was and it was the strongest treatment they had and she had no idea even if it worked or not. We of course were very scared after getting off the phone with her and didn't feel good about the treatment at all.
We wanted to talk this treatment over with our doctor, Dr. Grossman because we very much value his opinion and he usually keeps up-to-date on all new data for Melanoma treatment. After talking this option over this afternoon with him, we decided it was not for us at this time. Dr. Grossman said that he thinks we still have options here and that Jon's cancer isn't bad enough yet to try that clinical trial. He thought that particular treatment was a joke and way to dangerous and showed almost no positive results.
So now it feels like we start at step one again.....
Dr. Grossman gave us an option of maybe joining a B-raff clinical trial if we can get in. He said that there might be a B-raff mutation phase 2 clinical trial option for us in L.A. at the UCLA. Dr. Grossman has a collegue down there that is doing this study and thinks he might be able to get us in this week. The B-raff treatment does show promise is shrinking the cancer, but really only for a short period of time. He said it would just be buying us time and that is all we have. We need to again do all of the scans and another MRI of Jon's brain and that will all take place this Wednesday up at Hunt
If we are not able to get into a B-raff clinical trial this week, then we will be forced to start one of the terrible chemotherapy's this week instead. (the ones I talked about on a previous post) We have to do something now and can't delay anymore.
Please keep praying for us. We need strength right now and we need to feel comfort so badly. I am sorry about the bad news and hope and keep praying myself that something will finally touch this cancer and stop it. Even if it was short lived I would take it right now instead of nothing. I love my little family so much and feel so desperate to keep it. Man, its been one hard day :< I think I will go to sleep now and hopefully it will be a better day tomorrow. Take care everyone and may the spirit be with you. Love, Tiff
We wanted to talk this treatment over with our doctor, Dr. Grossman because we very much value his opinion and he usually keeps up-to-date on all new data for Melanoma treatment. After talking this option over this afternoon with him, we decided it was not for us at this time. Dr. Grossman said that he thinks we still have options here and that Jon's cancer isn't bad enough yet to try that clinical trial. He thought that particular treatment was a joke and way to dangerous and showed almost no positive results.
So now it feels like we start at step one again.....
Dr. Grossman gave us an option of maybe joining a B-raff clinical trial if we can get in. He said that there might be a B-raff mutation phase 2 clinical trial option for us in L.A. at the UCLA. Dr. Grossman has a collegue down there that is doing this study and thinks he might be able to get us in this week. The B-raff treatment does show promise is shrinking the cancer, but really only for a short period of time. He said it would just be buying us time and that is all we have. We need to again do all of the scans and another MRI of Jon's brain and that will all take place this Wednesday up at Hunt
If we are not able to get into a B-raff clinical trial this week, then we will be forced to start one of the terrible chemotherapy's this week instead. (the ones I talked about on a previous post) We have to do something now and can't delay anymore.
Please keep praying for us. We need strength right now and we need to feel comfort so badly. I am sorry about the bad news and hope and keep praying myself that something will finally touch this cancer and stop it. Even if it was short lived I would take it right now instead of nothing. I love my little family so much and feel so desperate to keep it. Man, its been one hard day :< I think I will go to sleep now and hopefully it will be a better day tomorrow. Take care everyone and may the spirit be with you. Love, Tiff
Wednesday, January 20, 2010
Update After Surgery
Hi everyone. I just wanted to post that everything went very well with Jon's surgery on Tuesday morning and today his pain is very well controlled. The surgery was alot more complicated then the Drs. had originally thought. The cancer on Jon's shoulder that was removered for the TIL harvest was actually under a major muscle and in between another, so in order for the Drs. to get to the tumor they had to resection and take a large amount of two muscle groups on his shoulder out. Because of this complication they wanted Jon to stay a few more nights in the hospital to get the pain and everything else under control before getting on the airplane to go home. If everything is on schedule we should be able to go home on Friday night which we are very much hoping because this has been alot longer then we had hoped and we are both so home sick for our kids. Thank you everyone for your support you have shown to us. We are so happy and lucky to have such a strong support system that has backed us up every step of the way. We appreciate everyone remembering us in their prayers.
I just found out a couple nights ago that My sister's father-in-law Ken Marshall passed away after his long battle with his cancer. Jon and I are so sad for his family. I know it was expected and Ken was ready to return to his heavenly father, but at the same time it's hard for us here on earth who will greatly miss him. My prayers are with you Maxine. Ken was a wonderful person who was always kind and very friendly to Jon and I. He will be missed.
Take care and may everyone have the spirit to be with them.
I just found out a couple nights ago that My sister's father-in-law Ken Marshall passed away after his long battle with his cancer. Jon and I are so sad for his family. I know it was expected and Ken was ready to return to his heavenly father, but at the same time it's hard for us here on earth who will greatly miss him. My prayers are with you Maxine. Ken was a wonderful person who was always kind and very friendly to Jon and I. He will be missed.
Take care and may everyone have the spirit to be with them.
Saturday, January 16, 2010
Maryland.
Hi everyone we are still in Maryland and will be until Wednesday night of next week. Everything has been going very well. I know that some people know what is going on and what happened at the hospital and some don't so, I will just quickly fill everyone in.
We saw the Doctors and Nurses at NIH on Thursday and nothing could have gone better. They approved Jon on Friday for the Tumor Infiltrating Lymphocytes (TIL) harvesting and treatment and he became their patient :>
We are so happy and feel so so blessed. So many people in our same situation were turned down, so its kind of a happy sad thing. We are happy it was us, but sad that everyone can't get this new treatment. They are starting quickly on his cell harvesting and have scheduled for one of the cancer tumors on his shoulder to be removed on Tuesday morning. Sadly, he will have to be in the hospital starting Monday night and going through Wednesday. Both of us are not too happy about this, but what can you do. It's for safety issues and to make sure the cancer and pain are both controlled.
The Doctors have explained the TIL treatment to us as followed which is a little different then we were expecting but still okay because we are getting the treatment right?
The tumor and cells are harvested in a lab and clinically enhanced into TIL cells which takes anywhere between 4-6 weeks. After they are grown out into the millions they are then put back into Jon's body, but first they will be giving Jon inpatient chemotherapy drugs for one week solid to clear out his own immune system and pretty much completely put him at zero. After that one week in the hospital they will start infusing the TIL cells into his body followed then by some Interleukin II treatment. After another week of this treatment, he will then have to stay in the hospital an addition two weeks in order for the immune system to calm down a little and get some strength up and get over all the side effects.
The Doctors have said that this treatment is a one time deal and that its strong enough and made to be once in a life time and hopefully put you in full remission for a while. Because this is not FDA approved and still in phase 2 of the clinical trial process this treatment is not certain to work and the numbers are not clear enough if it is a long term survival treatment, but.. BIG BUT, this treatment has been out for a few years with testing and has shown to have great results with Melanoma cancer and so we are happy to receive it and hope for the best.
One thing we are very scared about is not receiving any treatment on the cancer for another month. We don't want the cancer getting out of controll and taking over Jon's body before this treatment is given, but the doctors have tried to reassure us that the TIL cell treatment will work and take care of everything and that it's not a big deal to wait the 4-6 weeks but I see Jon getting weaker and think we need something now. Unfortuately because of the clinical trials you cannot have any treatments for 6 weeks prior to this one. They call it a "Wash out period". So please keep praying for us to get this under control and strength to go on. We will be very happy to be coming home and be with our children again. Thanks for everyone's support and prayers.
We saw the Doctors and Nurses at NIH on Thursday and nothing could have gone better. They approved Jon on Friday for the Tumor Infiltrating Lymphocytes (TIL) harvesting and treatment and he became their patient :>
We are so happy and feel so so blessed. So many people in our same situation were turned down, so its kind of a happy sad thing. We are happy it was us, but sad that everyone can't get this new treatment. They are starting quickly on his cell harvesting and have scheduled for one of the cancer tumors on his shoulder to be removed on Tuesday morning. Sadly, he will have to be in the hospital starting Monday night and going through Wednesday. Both of us are not too happy about this, but what can you do. It's for safety issues and to make sure the cancer and pain are both controlled.
The Doctors have explained the TIL treatment to us as followed which is a little different then we were expecting but still okay because we are getting the treatment right?
The tumor and cells are harvested in a lab and clinically enhanced into TIL cells which takes anywhere between 4-6 weeks. After they are grown out into the millions they are then put back into Jon's body, but first they will be giving Jon inpatient chemotherapy drugs for one week solid to clear out his own immune system and pretty much completely put him at zero. After that one week in the hospital they will start infusing the TIL cells into his body followed then by some Interleukin II treatment. After another week of this treatment, he will then have to stay in the hospital an addition two weeks in order for the immune system to calm down a little and get some strength up and get over all the side effects.
The Doctors have said that this treatment is a one time deal and that its strong enough and made to be once in a life time and hopefully put you in full remission for a while. Because this is not FDA approved and still in phase 2 of the clinical trial process this treatment is not certain to work and the numbers are not clear enough if it is a long term survival treatment, but.. BIG BUT, this treatment has been out for a few years with testing and has shown to have great results with Melanoma cancer and so we are happy to receive it and hope for the best.
One thing we are very scared about is not receiving any treatment on the cancer for another month. We don't want the cancer getting out of controll and taking over Jon's body before this treatment is given, but the doctors have tried to reassure us that the TIL cell treatment will work and take care of everything and that it's not a big deal to wait the 4-6 weeks but I see Jon getting weaker and think we need something now. Unfortuately because of the clinical trials you cannot have any treatments for 6 weeks prior to this one. They call it a "Wash out period". So please keep praying for us to get this under control and strength to go on. We will be very happy to be coming home and be with our children again. Thanks for everyone's support and prayers.
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