Hello all,
I'm happy to report that we are still seeing some progress - a small amount every day, but we'll take it. Scott had his third radiation treatment on Friday, and will not have any other radiation over the weekend. The pain is starting to decrease slowly. He still cannot move his leg without assistance and cannot walk, but he can do a little more. I guess the best way to explain it is that he feels a little more "comfortable". A week ago, just sitting still was excruciating - now he can be a little more comfortable.
The irriatiation at being here a week now is starting to show - it's so hard on him. He wants to be home with his doggies and his surroundings. The staff at Sylvester is great and are taking good care of him. These are not private rooms like at UM Hospital - he had a "jack ass" of a neighbor earlier in the week, but he has a nice one now. I don't know his name, but this man has obviously been a fighter. I'm not sure exactly what kind of cancer he has (he has a heavy accent and it's hard for me to fully understand him), but he told me that his first cancer diagnosis was at 27. This is his 3rd reoccurance and he's 72 now - he must be a very brave man.
We're not totally sure if the epidural is part of what is helping, or if it's the right combination of doses of pain meds, or if it's radiation - I'm not sure that we could know - so we'll just keeping doing everything we're doing. He still has 7 radiation treaments. If the epidural doesn't appear to be working, they may try another one higher up (a lumbar epidural), and if radiation doesn't significantly reduce the pain, a "pain pump". The pump is inserted inside of his body (just under the skin), much like his port. It will allow the medicine to be inserted directly into this spine. Using this technique, much less medicine is needed to alleviate the pain. Again, this will only be looked at if radiation isn't working - that should not need to be the case.
His fevers are still coming and going. They are very likely from the tumor and/or the pain, but they cannot risk infection, so he will have to give him more antibiotics just to be safe.
Today has been pretty uneventful and tomorrow should be the same.
The one thing I hear most from everyone (besides the prayers, well wishes and loving thoughts) is "I feel so helpless". I understand this well. Neil and I are by his side all the time and even we feel helpless. This past week was the most difficult (and scary) time of this journey yet and everyone wishes there was something they could do to help. Some of you are in a position to help with the dogs and we thank you so much for doing so.
Besides that, all I can say to you is to keep sending him your love. Don't feel bad about being unable to help - we know you want to and we love you all for it. Thank you for staying involved and caring about Scott and his progress - you are helping more than you know.
I'll send another update in a few days.
Love,
Amy
Saturday, February 18, 2012
Wednesday, February 15, 2012
Seeing progress!
Hello all,
Thank you so much for the kind words and comments you send to Scott. I'm sorry I haven't gotten to reply to all the wonderful comments, emails, cards, etc that you all are sending, but please know he is getting them and we are grateful! They really do make him smile and feel good.
We are finally seeing progress today! The pain medicines are starting to make a difference. There are several of them, and the manner in which they are given is a carefully orchestrated regimen - but the Doctors know what they are doing. One in particular, the Fentanyl nasal spray, makes a big difference in breakthrew pain control needed for a major push - like having to get through radiation. And he did just that today - he got through radiation! It was not easy on him, but it was much easier than yesterday. He will hopefully continue to be able to receive his radiation treatments and we'll see the tumor starting to shrink soon. This is radiation treatment 1 of 10 for the next two weeks.
He is also going to get an Epidural tomorrow. It may take a couple days to fully take affect, but hopefully it will last for a couple days and help significantly. The Doctors hope that by the time it starts to wear off, the tumor will have started to shrink and things well even out.
He's still running mild fevers on and off, but that is expected because of the tumor and the pain his body is fighting.
Another positive piece of information is that Scott's pelvic bone with the tumor (the Ilium) still looks very good on xrays, considering there is a large tumor there. What bone is there looks solid and strong and that means that the bone should be successful in filling back in once the radiation starts shrinking the tumor. Also, if the tumor responds well to the radiation, they may be able to radiate the liver tumors. Scott's type of Cancer typically responds well to radiation - unfortunately, other types of Sarcomas do not. Getting back on chemo is still the major goal.
Neil is still at the hospital with Scott. I don't know what I would do without Neil and Holly - it's truly a team effort. Neil stays overnight with him when I have to come home and take care of the dogs and does everything for Scott. Holly is doing all the administrative work to research and apply for clinical trials. If I had to do that, I would manage, but I'm so grateful she is taking care of that. She is also taking many calls for updates that I cannot get too. Another big thank you to her and my friends that are helping take out the dogs during the day. We very much appreciate it.
Sending our love,
Scott and Amy
Thank you so much for the kind words and comments you send to Scott. I'm sorry I haven't gotten to reply to all the wonderful comments, emails, cards, etc that you all are sending, but please know he is getting them and we are grateful! They really do make him smile and feel good.
We are finally seeing progress today! The pain medicines are starting to make a difference. There are several of them, and the manner in which they are given is a carefully orchestrated regimen - but the Doctors know what they are doing. One in particular, the Fentanyl nasal spray, makes a big difference in breakthrew pain control needed for a major push - like having to get through radiation. And he did just that today - he got through radiation! It was not easy on him, but it was much easier than yesterday. He will hopefully continue to be able to receive his radiation treatments and we'll see the tumor starting to shrink soon. This is radiation treatment 1 of 10 for the next two weeks.
He is also going to get an Epidural tomorrow. It may take a couple days to fully take affect, but hopefully it will last for a couple days and help significantly. The Doctors hope that by the time it starts to wear off, the tumor will have started to shrink and things well even out.
He's still running mild fevers on and off, but that is expected because of the tumor and the pain his body is fighting.
Another positive piece of information is that Scott's pelvic bone with the tumor (the Ilium) still looks very good on xrays, considering there is a large tumor there. What bone is there looks solid and strong and that means that the bone should be successful in filling back in once the radiation starts shrinking the tumor. Also, if the tumor responds well to the radiation, they may be able to radiate the liver tumors. Scott's type of Cancer typically responds well to radiation - unfortunately, other types of Sarcomas do not. Getting back on chemo is still the major goal.
Neil is still at the hospital with Scott. I don't know what I would do without Neil and Holly - it's truly a team effort. Neil stays overnight with him when I have to come home and take care of the dogs and does everything for Scott. Holly is doing all the administrative work to research and apply for clinical trials. If I had to do that, I would manage, but I'm so grateful she is taking care of that. She is also taking many calls for updates that I cannot get too. Another big thank you to her and my friends that are helping take out the dogs during the day. We very much appreciate it.
Sending our love,
Scott and Amy
Tuesday, February 14, 2012
Pain Management & Radiation
Hi all,
Sorry for the delay in posting - the last several days have been very hectic.
It turned out that we had to delay chemo again - Scott was admitted on Sunday in order to get his pain under control. Last Wednesday night, he was trying to shimmy into bed and felt a sharp pain again - similar to what happened about a month ago after getting sick. He couldn't move again and spent days like that. His Dad brought over a recliner and Scott was able to get a tiny bit more comfortable, but the pain grew to be unmanagable - plus he started running fevers at night again - so we talked to the Doctors over the weekend and he was admitted.
He is still at the hospital (Sylvester inpatient wing) and probably will be for the rest of the week. These past several days have been the hardest on him, by far. The process of getting the pain under control is not easy and takes quite a bit of time. They have to find the right medicines, the right doses, and increase in such a way that does not cause other problems. In order to go through xrays, he had to get up on a hard, flat, high xray table and that was horrible - but he had to do it to make sure no bones are broken. (They are not, thankfully) They still don't know exactly what's causing the pain, other than the assumption that the tumor has grown and is pushing up against many nerves. I've discussed this on the blog before - the tumor is surrounded by major nerves, like the Siatica. They are trying medicines - more than I want to list out here - and not much is working so far. One of the likely next steps is some sort of injection - either local nerve blocking or even an epidural. They have to do something significant to get Scott out of pain, able to move at least a little bit, and be able to get through his treatments. There was no way he could get to and through chemo sessions in the condition he was in.
The other change is that the Doctors want to start radiation as soon as possible. We're still trying to understand the differences, but this is not the full 6-week radiation course that we discussed months ago - this is daily high-dose radiation to shrink the tumor and get him out of pain. We're hoping the radiation works well, starts shrinking the pelvic tumor and, after a few weeks to recover, start chemotherapy again (the new protocal he was going to start on Monday). As you've seen, plans are subject to change daily and we'll have to see what happens after pain management and radiation for a couple weeks. The last time I mentioned radiation here I said it wasn't an option because there is a change that too much radiation could prevent more chemo later. That's still a chance, but one we have to take right now. The most important thing right now, by far, is getting him out of the unbearable pain he is in.
The tumors in his liver are not being addressed by radiation right now - the pelvic tumor is the major priority, and again, if he can get back on chemo that will start to fight those.
He is tired and so so so over the pain, but he's still fighting hard. He has endured more than anyone should ever have to and still has more to go, but he's done amazing. So amazing. He's so strong, and even though the pain is getting to him, Neil and I are trying to keep him strong and positive. One of us is with him all the time.
We're hoping that they can manage the pain enough to start radiation tomorrow. I'll write again in a few days with an update. Please keep your words of encouragement coming for him - he needs to fight and stay strong, and the love of his family and friends helps him do that.
Thanks for your love and support.
Amy
Sorry for the delay in posting - the last several days have been very hectic.
It turned out that we had to delay chemo again - Scott was admitted on Sunday in order to get his pain under control. Last Wednesday night, he was trying to shimmy into bed and felt a sharp pain again - similar to what happened about a month ago after getting sick. He couldn't move again and spent days like that. His Dad brought over a recliner and Scott was able to get a tiny bit more comfortable, but the pain grew to be unmanagable - plus he started running fevers at night again - so we talked to the Doctors over the weekend and he was admitted.
He is still at the hospital (Sylvester inpatient wing) and probably will be for the rest of the week. These past several days have been the hardest on him, by far. The process of getting the pain under control is not easy and takes quite a bit of time. They have to find the right medicines, the right doses, and increase in such a way that does not cause other problems. In order to go through xrays, he had to get up on a hard, flat, high xray table and that was horrible - but he had to do it to make sure no bones are broken. (They are not, thankfully) They still don't know exactly what's causing the pain, other than the assumption that the tumor has grown and is pushing up against many nerves. I've discussed this on the blog before - the tumor is surrounded by major nerves, like the Siatica. They are trying medicines - more than I want to list out here - and not much is working so far. One of the likely next steps is some sort of injection - either local nerve blocking or even an epidural. They have to do something significant to get Scott out of pain, able to move at least a little bit, and be able to get through his treatments. There was no way he could get to and through chemo sessions in the condition he was in.
The other change is that the Doctors want to start radiation as soon as possible. We're still trying to understand the differences, but this is not the full 6-week radiation course that we discussed months ago - this is daily high-dose radiation to shrink the tumor and get him out of pain. We're hoping the radiation works well, starts shrinking the pelvic tumor and, after a few weeks to recover, start chemotherapy again (the new protocal he was going to start on Monday). As you've seen, plans are subject to change daily and we'll have to see what happens after pain management and radiation for a couple weeks. The last time I mentioned radiation here I said it wasn't an option because there is a change that too much radiation could prevent more chemo later. That's still a chance, but one we have to take right now. The most important thing right now, by far, is getting him out of the unbearable pain he is in.
The tumors in his liver are not being addressed by radiation right now - the pelvic tumor is the major priority, and again, if he can get back on chemo that will start to fight those.
He is tired and so so so over the pain, but he's still fighting hard. He has endured more than anyone should ever have to and still has more to go, but he's done amazing. So amazing. He's so strong, and even though the pain is getting to him, Neil and I are trying to keep him strong and positive. One of us is with him all the time.
We're hoping that they can manage the pain enough to start radiation tomorrow. I'll write again in a few days with an update. Please keep your words of encouragement coming for him - he needs to fight and stay strong, and the love of his family and friends helps him do that.
Thanks for your love and support.
Amy
Wednesday, February 8, 2012
Time for a new plan
Hello all,
Unfortunately, today's MRI results and Doctor's visit brought more bad news. The pelvic tumor has not been responding to the new chemo. In fact, it has grown 10 - 15% since the last scan a month ago. So instead of proceeding with chemo today, we have a new chemo plan - Scott is being moved to a new chemo protocal that is used by Ewings patients when the first protocal is not creating a positive response. These will be two brand new chemo drugs to Scott. He'll start this treatment on Monday. It will be for 5 days, but it will be a shorter duration of time to treat, so he can have the treatments in the Deerfield office and come home each night. One of the chemo drugs will be administered via IV, the other via tablets. He'll do this next week, and then again in hopefully 3 weeks (4 if his counts are too low). After these two cycles, we will again see if the tumor has stopped growing, or even better, starting to shrink. If there is a positive response - he will likely keep going with chemo as much as he can tolerate. His Doctor says there's a 50/50 chance the new drugs will have at least some positive affect. If there is not a positive response, our options are very limited. Really, the only option at that point may be a clinical trial.
If we go with a clinical trials, there are no guarantees and it appears the only active ones in which Scott meets that criteria are out of state. We would have to either travel to there frequently or relocate during the trial. It will be hard, but I know we'll make it work - we have to. I know you guys are asking me through the monitor "what about surgery or radiation??" Surgery is not recommended by his Doctor because of how long he would have to be off of chemo in order to prepare and recover - and he will need a lot of recovery time. He said there's really no point to surgery if the cancer is living elsewhere in his body, and we understand that rationale. As for radiation, he cannot have radiation and chemo at the same time - it will be too toxic. Additionally, he'll have the same issue with being off of chemo for too long and the added risk that the extensive amount of radiation he'd need will prevent him from being able to receive more chemo afterwards, if he needs it.
We are also looking at second opinions and may soon travel to the Moffitt Cancer Center in Tampa for a consultation - they have a Sarcoma Center and they apparently have a Ewings Specialist. I don't yet know how much he's worked with adults versus children, but we're trying to get them to evaluate Scott's records without have to make an very painful car ride for Scott. If they recommend other options - we would then head over there. Sylvester in Miami and a very good place for treatment, and we know his Doctor is following all the known protocals that produce results for Ewings patients - it's just that Scott's body did not respond to the first round and probably built up a resistance to those drugs. We're going to explore all the options we need to to save his life. Scott's battle is getting even more complicated, but is by no means over.
So far, we're still doing okay and don't really need assistance. If the time comes that we travel for a clinical trial, you guys may see the requests for help coming pouring in. :) Please keep sending your prayers, positive energy and crossing your fingers.
We love you all and are so grateful for your support. Just keep swimming!
~Amy & Scott
Unfortunately, today's MRI results and Doctor's visit brought more bad news. The pelvic tumor has not been responding to the new chemo. In fact, it has grown 10 - 15% since the last scan a month ago. So instead of proceeding with chemo today, we have a new chemo plan - Scott is being moved to a new chemo protocal that is used by Ewings patients when the first protocal is not creating a positive response. These will be two brand new chemo drugs to Scott. He'll start this treatment on Monday. It will be for 5 days, but it will be a shorter duration of time to treat, so he can have the treatments in the Deerfield office and come home each night. One of the chemo drugs will be administered via IV, the other via tablets. He'll do this next week, and then again in hopefully 3 weeks (4 if his counts are too low). After these two cycles, we will again see if the tumor has stopped growing, or even better, starting to shrink. If there is a positive response - he will likely keep going with chemo as much as he can tolerate. His Doctor says there's a 50/50 chance the new drugs will have at least some positive affect. If there is not a positive response, our options are very limited. Really, the only option at that point may be a clinical trial.
If we go with a clinical trials, there are no guarantees and it appears the only active ones in which Scott meets that criteria are out of state. We would have to either travel to there frequently or relocate during the trial. It will be hard, but I know we'll make it work - we have to. I know you guys are asking me through the monitor "what about surgery or radiation??" Surgery is not recommended by his Doctor because of how long he would have to be off of chemo in order to prepare and recover - and he will need a lot of recovery time. He said there's really no point to surgery if the cancer is living elsewhere in his body, and we understand that rationale. As for radiation, he cannot have radiation and chemo at the same time - it will be too toxic. Additionally, he'll have the same issue with being off of chemo for too long and the added risk that the extensive amount of radiation he'd need will prevent him from being able to receive more chemo afterwards, if he needs it.
We are also looking at second opinions and may soon travel to the Moffitt Cancer Center in Tampa for a consultation - they have a Sarcoma Center and they apparently have a Ewings Specialist. I don't yet know how much he's worked with adults versus children, but we're trying to get them to evaluate Scott's records without have to make an very painful car ride for Scott. If they recommend other options - we would then head over there. Sylvester in Miami and a very good place for treatment, and we know his Doctor is following all the known protocals that produce results for Ewings patients - it's just that Scott's body did not respond to the first round and probably built up a resistance to those drugs. We're going to explore all the options we need to to save his life. Scott's battle is getting even more complicated, but is by no means over.
So far, we're still doing okay and don't really need assistance. If the time comes that we travel for a clinical trial, you guys may see the requests for help coming pouring in. :) Please keep sending your prayers, positive energy and crossing your fingers.
We love you all and are so grateful for your support. Just keep swimming!
~Amy & Scott
Tuesday, January 31, 2012
Saturday, January 28, 2012
Another setback
Scott was able to have chemo on Wednesday - his labs showed that his counts rallied enough. That's great news - he needs to be able to receive his chemo treatments every two weeks. The bad news, is that the PET Scan on Tuesday showed that the cancer has metastasized to his liver. There are two small masses on his liver now - but "small" is an important word - and they may be able to be surgically removed them at a later time. This was not the news we wanted to hear, but these two small masses are not the worst case scenario, either. Scott's Doctors hope the chemo will also shrink these, or at least keep them at bay, and the focus will continue to be on the large tumor in his pelvis.
Scott's major challenge right now is being able to push through the pain. He's amazing - he's been so strong and is trying to do what he can, despite the pain. Things got very complicated in the beginning of the week - he has been getting sick on and off for the past couple weeks, and one time after/during getting sick, he felt a very sharp pain around the site of his pelvic tumor. He literally couldn't move for hours. The Doctor's were afraid he may have fractured his pelvis, but thankfully, an xray showed that wasn't the case. They still aren't sure what happened - it may have been a pinched nerve in the area. The next day or two, he was able to get around with a walker, but his mobility is challenged right now. Today was a better day - only the cane was used for parts of it and he was able to lay down flat for a bit. We think the Fentanyl patches are the culprit for the nausea, so he's looking forward to ending those and, instead, increasing the dosage of Morphine he's taking. (Ok, not looking forward to it, necessarily, but anxious to not be sick anymore!) We know that if he can get past the vomiting and subsequent pain, he will regain some strength to keep battling.
If the pain hasn't started decreasing after this chemo session, he's going to have another MRI before the next chemo session on the 8th. (MRI on the 7th). The Doctor's will see if the chemo is having a positive response on the tumor at that time. If not, they will likely try a different chemo regimen, and there's a very good possibility of starting radiation in conjunction with chemo. Surgery is just not an option in the near future - he's body and counts are not strong enough and he can't stop the chemo for as long as he would need to in order to recover from the surgery. We're reminded that cancer is like many other illnesses - there is sometimes some experimentation with medicine required in order to see what a particular person will respond to. Once they find the chemo drugs that stop the cancer from growing (and radiation to shrink the tumor), then we'll see some progress in the right direction.
You all would be so impressed with him - many people would not be so strong. He tries to laugh and make jokes when he can, and he just pushes through. In discussion with his Doctors last week, they said how surprised they were that he was still working in between treatments. Many people in his shoes would have taken disability, but he's still working. I'm not sure if the mobility challenges will change things, but I pray they won't. Being at work makes him happy and he loves his coworkers - they help keep him strong and positive (and the distraction doesn't hurt).
I also wanted to thank you all for your continued offers of assistance. I truly wish there was something you could do - something tangible we could ask for - but there really isn't at this time. What we DO need from you is your continued positive thoughts, prayers and crossed fingers. Please keep those coming. :)
We probably won't have an update until around the 8th and I promise to write an update then.
Love,
Amy
Scott's major challenge right now is being able to push through the pain. He's amazing - he's been so strong and is trying to do what he can, despite the pain. Things got very complicated in the beginning of the week - he has been getting sick on and off for the past couple weeks, and one time after/during getting sick, he felt a very sharp pain around the site of his pelvic tumor. He literally couldn't move for hours. The Doctor's were afraid he may have fractured his pelvis, but thankfully, an xray showed that wasn't the case. They still aren't sure what happened - it may have been a pinched nerve in the area. The next day or two, he was able to get around with a walker, but his mobility is challenged right now. Today was a better day - only the cane was used for parts of it and he was able to lay down flat for a bit. We think the Fentanyl patches are the culprit for the nausea, so he's looking forward to ending those and, instead, increasing the dosage of Morphine he's taking. (Ok, not looking forward to it, necessarily, but anxious to not be sick anymore!) We know that if he can get past the vomiting and subsequent pain, he will regain some strength to keep battling.
If the pain hasn't started decreasing after this chemo session, he's going to have another MRI before the next chemo session on the 8th. (MRI on the 7th). The Doctor's will see if the chemo is having a positive response on the tumor at that time. If not, they will likely try a different chemo regimen, and there's a very good possibility of starting radiation in conjunction with chemo. Surgery is just not an option in the near future - he's body and counts are not strong enough and he can't stop the chemo for as long as he would need to in order to recover from the surgery. We're reminded that cancer is like many other illnesses - there is sometimes some experimentation with medicine required in order to see what a particular person will respond to. Once they find the chemo drugs that stop the cancer from growing (and radiation to shrink the tumor), then we'll see some progress in the right direction.
You all would be so impressed with him - many people would not be so strong. He tries to laugh and make jokes when he can, and he just pushes through. In discussion with his Doctors last week, they said how surprised they were that he was still working in between treatments. Many people in his shoes would have taken disability, but he's still working. I'm not sure if the mobility challenges will change things, but I pray they won't. Being at work makes him happy and he loves his coworkers - they help keep him strong and positive (and the distraction doesn't hurt).
I also wanted to thank you all for your continued offers of assistance. I truly wish there was something you could do - something tangible we could ask for - but there really isn't at this time. What we DO need from you is your continued positive thoughts, prayers and crossed fingers. Please keep those coming. :)
We probably won't have an update until around the 8th and I promise to write an update then.
Love,
Amy
Sunday, January 22, 2012
Surgery has been postponed....
I wanted to give everyone an update on where things are with my treatment.
We found out that in early January that the tumor is not "dead" like we thought, and it has grown significantly. As many of you know, the pain is almost, if not more painful then when first diagnosed. So they sent me for an MRI and CT Scan. We went to see the Doctors today to figure out what to do next.
Most importantly, the cancer hasn't spread other than the tumor growing. There is a new small spot on my liver that was never there before, but it may not be anything - they will continue to monitor it. The three small spots on my lungs have not grown and they will continue to monitor them, as well. They gave me new meds for the pain (Fentanyl patches supplemented with Percocet) and advised me to start walking with a cane to take pressure off of the area. The pain is from the bone right now, and as you know, bone pain is tremendous.
Chemo started again on Wednesday, January 11. They plan on a total of three (3) chemo cycles (1 every 2 weeks), just like the outpatient sessions I had before. They are going to try every two weeks as long as my body can handle it (it's a pretty aggressive treatment). The main goal right now is to prevent the tumor from growing and to prevent the cancer from metastasizing. In 6 weeks, they'll do more scans and evaluate the next step. It will be either radiation, surgery or possibly more chemo - we won’t know until then. Probably the hardest news is that surgery is going to be much, much harder than anticipated. Unless the tumor shrinks, they are now going to have to take the entire left side of my pelvis, as well as the hip socket (they will use bone grafts and plates in place of those). After surgery, I'll be monitored in ICU for several days, a week in the hospital, and 6 - 8 weeks of rehabilitation. Also, the likelihood of chemo and/or radiation after recovery from surgery is good.
We definitely could have gotten worse news today, so we'll take this the best we can. I’m not giving up.
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