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| Chris, Angie, Brooke and Samantha at the front door of our new home. |
Thurs 7/17 - We have gotten Chris' schedule for treatment. He starts the test dose of Bexxar one week from today. There are two scans and then he receives the dose. That will take place on the July 31st.
Though still dealing with pain, Chris had been feeling energetic enough to go into work for a few hours this week. Today, it seems to be catching up to him. He has been very fatigued today; deciding to stay home.
Fri 7/25 - Chris received his test dose of Bexxar yesterday. Time consuming, but uneventful really. When asked if Chris could expect any relief with this test dose, the radiologist said "it would be quite interesting" to see if he did, but not to expect any. Contrary to what a friend of ours read while doing some research. So our roller coaster ride goes. While we are not expecting any beneficial effects from this test dose, we'd sure welcome any. Chris' pain has been getting worse and he's soaking the bed with sweat every night.
There will be two scans before Chris gets the therapeutic dose of Bexxar; one Monday and another on Wednesday. Thursday he gets the dose of Bexxar. His blood counts are expected to drop. Because he's has such low counts already, I would expect that more transfusions will be necessary. He will be radioactive for a couple weeks after the big dose on Wednesday. Close prolonged exposure to him is to be avoided. Not that we can't hug him. (He will still get lots of hugs.) Just that sitting next to him in a movie theater or on a long car ride is not a good idea.
Tues 7/29 -Chris could not get over having mouse antibodies running around inside of him. I started to call them the Mouse Army, and we've been having fun visualizing the "Mouse Army" on the attack. Chris still is in a good amount of discomfort. The test dose really hasn't given him any relief. The results of the scan yesterday went well. His physicist called (yes, a physicist. Pretty impressive, eh?) to let him know he's "within range". There is one more scan tomorrow. These scans are to help determine how fast the test dose leaves the body. The size of the therapeutic dose is based on the results. I'm probably not explaining that quite right. Suffice it to say that everything is going as planned. He will get the therapeutic dose on Thursday. Now instead of your standard furry little Mouse Army, there will be a glowing super Mouse Army with bulging muscles and major weapons that will not back down to anything!!
Thurs. 7/31 - Chris is full of little radiated antibodies, aka the Super Mouse Army. The procedure went well and he's feeling good.
If you missed the explanation on Radioimmunotherapy (Bexxar and Zevalin), here is the link again to a good video on it. Chris is only 1 of 15 or 16 people to have received Bexxar at Lutheran (possibly in the whole state) in the last couple years.
Tues 8/12 - Chris is officially non-radioactive. The progress from this treatment is expected to be slower than effects he's experienced with Chemo in the past. But to me it seems the pain is subsiding a little bit. He still can't eat very much at one sitting before it starts to hurt, though. He has been pretty active the last couple days. An encouraging sign. His next PET scan will take place in a few weeks.
Sat 8/16 - Chris' radiologist says the treatment seems to be working. Chris is still in a great deal of pain, but he has had some pretty good days. We are hopeful that in the next few weeks, the pain will decrease. A PET scan is scheduled for mid-September.
Fri 9/5 - After several days of badgering Chris to get his blood tested, I finally put my foot down today. And it was a good thing I did. His platelets are extremely low at 1! And his ANC (the white cells that fight infection) is 200. He has a transfusion in the morning. For the most part, he's been feeling ok. He has had a hard time with pain after eating. But the last few days that seems to have gotten better. He's been able to eat a lot more at one sitting. He's also been a lot more active the passed couple weeks. There is still another week before the next PET scan and he is scheduled to see the radiologist right after that.
We did get some heartbreaking news last week. Chris' oldest sister was diagnosed with multiple myeloma; a cancer that their dad also had. Needless to say, we are all pretty upset by the news.
Fri 9/12 - Despite the platelet transfusion last Friday, today's blood counts show very little change in his platelets. Most of his counts are extremely low. His PIC line looks like it may have become infected. He's been placed on antibiotics and is undergoing a platelet this afternoon and whole blood transfusion tomorrow morning. After a flourish of activity for the past few weeks, everything seems to have caught up to him. He spend all day in bed yesterday too weak to do anything but sleep.
Fri 9/19 -
After months of failed chemo treatment and bad PET scans, we were not looking forward to yesterday's meeting with the radiologist. Chris had his first PET scan since the Bexxar treatment on Tuesday. The PET scan before this was back in June and showed the lymphoma had increased in activity and spread in spite of all the previous treatments. Since Chris is still experiencing quite a bit of pain and is running on empty most of the time, we really were not very optimistic.
So, we took a deep breath and listened as Chris' radiologist, Dr. Schewe, read the report to us. He started off with a mention that Chris was very lucky to have had him (Schewe) be able to administer the Bexxar treatment at all due to the difficult nature of his lymphoma. With that preamble in mind, we were even more nervous at the start, but the results wound up being all-in-all pretty upbeat; a bit of a mixed bag but a net gain. Basically, almost all of the established tumor activity has gone down, but there is one new tumor area as well as a section of Chris' lungs which is particularly worrisome. No one seems to know just what is going on there but the doctor thinks it's a stubborn infection of some kind. Bottom line is the report was positive, a far cry from hearing the cancer has spread and growing in intensity which we have become used to hearing. Another PET scan is scheduled in 6 weeks. It will be the one to determine
which way things are really going. Truly, the scary one.
The radiologist has done all he can do thus far and we have a meeting on Monday with the bone marrow transplant doctor and wi?ll see what direction he wants to go. Whether he wants to wait for the results of the next PET scan or he wants to proceed with the next transplant right away. Things are not dull at the moment.
In the meantime, Chris' blood counts continue at an extremely low level. He had another platelet transfusion on Monday. This seems to be a direct side effect of the Bexxar. According to Dr. Schewe, in a person with uncompromised bone marrow (non-transplant), counts can be expected to go down by half with Bexxar. Chris had very low counts going into the treatment, so it was expected that his counts would bottom out. So, it is another 6 weeks of watching his counts and hoping there is more progress in the right direction.
Thurs 9/24 - Our scheduled meeting with the bone marrow transplant doctor was postponed from last Monday to tomorrow. This was to give the doctor a chance to circulate the PET scan results among the whole transplant team.
Chris' blood counts continue to remain low. He had another platelet transfusion yesterday and 3 units of whole blood today. Another unit of blood and possibly platelets will be given to him tomorrow after the meeting with the transplant doctor.
Fri 10/10 - It has been a while between updates, but there hadn't been too much to report until today. Though experiencing an increase in pain and discomfort, Chris seemed to be holding his own. And it seemed to us that Chris' blood counts were on the way up. As it turns out, we were only half right. His white count and platelets have improved. His red count, however, has not and in fact got dangerously low. Chris had been feeling very fatigued and was having trouble concentrating yesterday. At first I thought it was both a lack of sleep (pain has been keeping him up at night) and some new pain meds he had just been prescribed. Then it occurred to me that it could be low blood counts and I was able to talk him into having his counts checked this morning. And it may have been in the nick of time. I don't think I've ever seen his oncologist so worried. He just stared at him when Chris tried to make light of things. Chris' red count was so low, the infusion center at the hospital sent him to Emergency for the transfusion for fear he'd go into shock. He was admitted and is being transfused overnight. I hope to have him back home tomorrow afternoon.
Sat 10/11 - Chris had 4 units of red cells overnight and is getting 2 more today. It now looks like they will keep him one more day. They think that he has bleeding in his intestines somewhere and that is were the blood it going. They may do a colonoscopy sometime today or tomorrow in hopes of finding and repairing the problem. In any case, he will not be coming home today after all.
Chris had an endoscopy this afternoon. Some general bleeding was found in the small intestines. It was not known if it was stopped completely. Another scan may be needed in a few days.
Sun 10/12 - When I left the hospital tonight, Chris was in good spirits and feeling much better. He was given 2 more units of blood and a bag of platelets today. His red cell count tomorrow morning should determine whether the bleeding in his intestines was stopped. During the endoscopy yesterday, a mass in the area of the bleeding was discovered. At this time it is not known if it is a lymphatic tumor or not. A biopsy was performed and we should have the results tomorrow afternoon.
Mon 10/13 - Chris has now stablized and will be leaving the hospital this morning.
Mon 10/20 - Chris has been home a week now and is doing much better. He started radiation treatment to shrink tumors and control the bleeding. His treatments are everyday for the next 3 to 4 weeks and last about 15 minutes. He's also getting blood tests on a regular schedule of twice a week now. Yet another chemo drug has been suggested by the oncologist. Chris has to finish the radiation first before that happens.
Mon 10/27 - Chris continues to get radiation treatments every day. Sixteen more to go after today. His blood counts have been rebounding. They are still low, but no longer at dangerous levels. It is still painful when he eats, but he gives it his best shot. He wants to and he needs to. His weight is now down to 150. We are hopeful that the pain will get better as the radiation continues.
Mon 11/17 - Chris has not had radiation since last Wednesday due to low blood counts. His counts are starting to fall. Not a lot, but enough for the radiologist to stop radiation until they come up again. The counts need to come up in order for Chris to receive the next chemo also. He has another blood test scheduled for Thursday.
Thurs 11/20 - The blood counts from today showed a raise in white cells to the normal range. This due to the Neulast shot we gave Chris on Tuesday. But his platelet count has fallen significantly in the last week. Which meant a platelet transfusion today. Chris may be able to continue radiation tomorrow.
Thurs 11/27 - The white cell count is holding in the normal range. Chris' red count has dropped slightly, but enough to require the transfusion of red cells. That will take place on Saturday morning. His platelet count dropped also. He is getting a platelet transfusion this morning. The last radiation treatment is Tuesday. It is hoped that his counts start moving up again once that is over.
Thurs 12/4 - Chris finished up his radiation yesterday. It has had positive effects with regard to pain. He's actually been able to finish a meal without any problems and his appetite has been very good. His platelet count continues to fall, however. It was down to 5 (thousand) today. He will be getting another platelet transfusion tomorrow morning. Now that the radiation is over, the hope is that all his counts will start to come up. To receive the next chemo treatment, his platlet count has to reach at least 100. All we can do is wait for that to happen.
Sun 12/14 - Chris' energy level has been up and down. He underwent another platelet transfusion at the end of last week. His red and white counts were holding. There is another blood count on Wednesday and a follow-up with the radiologist next week.
Mon 12/22 - Chris had yet another platelet transfusion on Friday. His counts will be checked again right after Christmas.
Sat 1/3/2209 - Chris has been having his blood counts checked weekly. There has been no change in his counts - both good and bad. His counts remain at very low levels. The fact that they are not going down further is good, but in order to get the next treatment, his platelets have to be at least 100,000. They are holding at 8,000. How Chris will feel from day to day has been unpredictable. He seems to just hit a wall at some point during the day or evening when he just has to go to bed. When he will reach that point varies. Christmas Eve night was particularly bad for Chris. He suffered a great deal of pain all night which lasted through most of Christmas Day. He tried very hard to keep it from spoiling the holiday especially because his daughter was here to spend it with us. The day after Christmas and through the rest of the week, he was much better. So, it was a happy visit for her. Now, all we do is watch his counts and hope that they move upwards.
Fri 1/16/2009 - There hasn't been too much that has changed since the last posting. Chris has been experiencing some severe pain in the side of his face and down into his neck. Our suspicion is that it is being caused by an involved lymph node at the base of his neck. These episodes seem to happen mostly at night. Through out the day he seems fine. Another PET scan is being scheduled. On a more up note, his last blood test showed an increase in platelets to 11,000. Not a huge improvement, but at least it is moving in the right direction. His other counts remain the same.
Fri 2/6/2009 - As I mentioned in the last post, Chris has been experiencing some severe pain in the side of his head and into his neck. These episodes have been increasing in frequency and severity. The latest PET scan shows the tumor at the base of his neck has grown to a huge, very active mass. His neck on that side also appears swollen and it is starting to effect his swallowing. This is the first affected lymph node that is actually visible. Up till now, they have all been internal.
These last few weeks, we'd been waiting for Chris' platelet count to return closer to normal so that he could go through a newly approved Chemo treatment. With this new aggressive activity, his oncologist is anxious to do something and has been trying to come up with a treatment that won't be hard on his blood counts. The consensus is that Chris should be given Rituxan again. Yes, he has had Rituxan, however, it was part of the RICE regimen he went through right before the bone marrow transplant. And it was effective. The thought is that since it has been so long since he had it, it may be effective once again. We are looking forward to that. So, Chris starts that on Wednesday.
In the meantime, to relieve Chris' pain, we hope to schedule radiation treatments again. The tumors that were targeted for radiation last time, have shrunk, allowing Chris to eat without pain. And eat his does. His weight is up to 171 now. Radiation on the new area should have a drastic effect also. We meet with the radiologist this afternoon.
All of this is very touchy considering his low blood counts. We just cross our fingers in the hopes that all goes well!
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Mon 2/9/2009 - Here is an image from Chris' latest PET scan. The dark sections on either side in the mid-abdomen are his kidneys which are fine. Note the large tumor on the left side of his neck. This is the one that is giving him such a hard time. The area below his diaphragm that was targeted with radiation already seems to be clear as does the spot on his lung. |
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| Chris wears this mask during radiation to keep his head still. It was custom formed to his face. "Doesn't look quite as bad as it feels to go through it, but still looks a little hideous!". |
Mon 2/16/2009 - It has now been a week since Chris started radiation. It seems to be going very well. The painful episodes he was experiencing have pretty much disappeared. It isn't nearly as uncomfortable for him to lie down during the radiation sessions. And he seems to be sleeping better. The radiologist is also targetting another tumor in the same vicinity. There are three more weeks of radiation left.
Chris did have a blood transfusion last Thursday. He had been putting that off for a few weeks because unlike when he got his first transfusions, transfusions now make him very lethargic. I think he's weathered it well this time. His white count had fallen also. His oncologist didn't hesitate to order Neulasta. It is too early to tell if the Chemo is working. Chris has his second round this week.
Fri 2/20/2009 - The excitement of watching Chris' platelet count go up was very short lived. They dipped down to 3-thousand. Chris underwent a platelet transfusion yesterday. Today, he is receiving his weekly Chemo. Two more after this.
Mon 3/9/2009 - Chris has been holding his own. He finished the Rituxan treatments last week. Another dose of Vincristine will be given on Wednesday. And there are 10 radiation treatments left. He is and will continue to fight the low blood counts. He was given a platelet transfusion last Saturday. His energy levels are pretty good considering.
Thurs 3/12/2009 - Chris' blood counts are once again at critical levels. He is scheduled for a blood transfusion tomorrow.
Fri 3/20/2009 - Platelet transfusions are starting to get routine. Chris had yet another one last Tuesday. The negative effects of the radiation are starting now. There is some skin irritation on his neck. But worse is that his throat is very sore making it very hard to swallow. His last day of radiation is next Thursday.
Thurs 3/26/09 - Chris' radiologist has been holding off on the rest of Chris' treatment to give Chris a chance to recover from the recent unpleasant effects. The medication his radiologist has given him started working right away, so those last few treatments should continue soon. Chris' weekly visit for blood work was good this week. His platelet count has gone up a little and his red count is good. His white count is down again making him suspeptible to colds and infections. He should wear a mask when he goes out, but he doesn't. I don't blame him. It is a little dorky. If they made one that didn't call attention to you, we'd all be more likely to wear one. Maybe a flesh color instead of white or bright yellow.
Wed 4/1/09- Chris finished radiation yesterday. He'd been feeling very good and energetic the last few days. He even put in a full day at the office yesterday and has been intent on going in on a full time basis. But today has been a much different story. He has been feeling miserable since getting up this morning. He may spend the rest of the day in bed. Looks like he just isn't up to going at things full speed.
Mon 4/13/09- I didn't realize how long it has been since the last entry. Chris has been trying to go to work even when he wasn't up to it. He really hasn't regained any of that energy he had a couple weeks ago. His blood counts haven't changed that much. They are still very low. He got a Vincristine Chemo treatment on Thursday. Those two things alone may be contributing to his energy level. It is hard to tell.
Fri 4/17/09 - Chris underwent a platelet transfusion on Wednesday and a whole blood transfusion yesterday. He has been feeling weaker as this week has gone on. We are hopeful that the transfusion will perk him up.
Wed 4/22/09 - The transfusion helped a little to raise Chris' energy level. But he is still feeling constantly tired.
Thurs 4/30/09 - I've been gone all week visiting my kids and Mom in Illinois. Chris' sister, Mary and her boys stayed with Chris while I was gone. And his good friend, Luke was in town for a couple days also. It was one of Chris' better weeks. I think they did wonders to lift his spirits also. Today wasn't quite as good a day. He's been experiencing some pain and has a slight fever.
He had a PET scan this morning. And he sees the doctor tomorrow morning.
Fri 5/1/09 - Chris' chest discomfort and fever continued through the night. His doctor ordered a Neulasta shot as his white count was low. Blood cultures and a chest x-ray were ordered. And an antibiotic was prescribed. Chris also had a platelet and whole blood transfusion today. We have not gotten the results of the x-ray yet, but the initial diagnosis is possible pneumonia. We should know for sure when we hear what the x-ray shows.
Wed 5/6/09 - Chris is slowly recovering from what officially is pneumonia. His energy level still isn't great. He's having to rest more often which is hard on him because he wants to do so much. The PET scan he had recently shows an increase in activity in his abdomen. That same tumor that just keeps coming back.
Fri 5/15/09 - The pneumonia seems to be persisting. Although Chris is no longer running a fever, the cough and chest discomfort continue. He is napping a lot more and he's been sleeping better at night. He should be able to lick it.
Fri 5/22/09 - Chris underwent another blood and platelett transfusion yesterday. He also go a follow-up x-ray to make sure the pneumonia has cleared up.
NEW Sat 6/6/09 - Chris' last blood test showed a slight increase in both his red count and platelets. No transfusion for him this time.
A consult is being set up for July at a cancer center in Omaha. More as it develops.
Sat 6/20/09 - Chris has been doing surprisingly well. He feels good and seems to be free of pain. We even managed a short trip to Las Vegas for his cousin's wedding. He made the trip without incident. His blood counts have risen slightly. Still at critical levels, but moving in the right direction.