Yesterday was one of those important days when I have to get a PET scan to check on the progress of my treatment. The day started out pretty normal with my usual clinic appointment. I felt the GVHD I've been experiencing hadn't really changed much, and I was feeling pretty good after the coughing and runny nose from the previous week. The doctor who saw me shared that the virus I had last week was adeno virus. She was surprised that I was feeling so well, because she said it knocks most people off of their feet. While I did feel less energy than normal, I was still pretty active over the last week. Must be good news that I felt reasonably well despite that virus.
The doctor also examined my mouth and skin for GVHD, and felt my mouth had improved over the last week. My mouth is feeling better, and its nice to have her opinion that it is visually improved as well. My skin is pretty splotchy on my upper body, especially on my neck. I don't feel the desire to itch that much, but its definitely noticeable. I'll have a biopsy on Monday with the dermatologist.
After my clinic appointment I went to the dentist to have an oral biopsy. I filled out a few quick surveys about my mouth, the dentist examined the GVHD in my mouth, and then took a snip from inside my cheek. The site of the biopsy bled for a bit while I bit down on some gauze. However, a day later I haven't even noticed where it was taken from. The dentist wanted me to pay particular attention to under my tongue while applying the ointment to treat the GVHD. Apparently the rest of my mouth doesn't look so bad.
Then came the PET scan which has become very commonplace. I was sitting with my mother before the scan, and counted 11 PETs that I've had since this whole process began almost two years ago. It was uneventful, and I went to the day hospital to wait for my doctors to report back on the results. My parents and I waited a while, and two of my doctors eventually came with a not so pleasant look on the lead doctor's face.
Don't get too worried. He didn't really have bad news, but was kind of upset that he hadn't been able to view the results of the scan before meeting with us. He had a hectic day with the usual outpatient clinic in the morning, as well as duties with his in-patient rotation as well. When he went to view the scan, the radiologist had already left for the day. He was able to tell us what the preliminary report had stated, but not what his own opinion was from the scan. The radiologist's report showed a small uptake in the chest. Its always disheartening to hear about any uptake on a PET scan, but the doctor was not too worried because my recent respiratory virus could have lead to an increase in activity in the lung. He also shared that the CT scan I had last week when I came in with the symptoms of the virus had not shown any growth in the tumor mass. He was pretty confident that this wasn't any cancerous growth, but he could not say that with certainty because of the uptake on the PET.
So the doctor called back today after viewing the PET scan himself. His opinion was that at worst...the tumor mass had stayed the same. Yesterday's scans showed three other spots that had increased activity, although their SUVs were very low. He didn't think these areas were cancerous, but he wanted to compare these spots to PET scans from back in 2008. He was unable to do that today because the files are too large to be kept readily available on computers.
So what does all of this mean?The plan for now is to continue to taper the immune suppressant drugs I am on. This decision is standard for the protocol. What the taper will do will allow my immune system to fight the remaining tumor cells a bit more effectively. The drawback to this is the potential for more Graft Versus Host Disease. If there was a clear decrease in cancer cells on the PET then the transplant team might have decided to keep my current levels of immune suppressant drugs the same. However, the doctors feel the increased graft versus tumor effect is worth risking a greater chance of GVHD.
If there had been clear growth of the cancerous cells, the doctors would have quickened the tapering process, exposing me to greater risk of GVHD complications while also giving my immune system the maximum ability to fight the cancer cells. So for now I am taking a lower dose of the immune suppressant drugs, and I'll have to be even more careful to monitor my GVHD. I'll have another PET scan in a month to see how things have progressed on this lower level of immune suppression.
All of this information can seem intense, but the bottom line is that I am still doing well. There is no regrowth, and while the progress isn't as quick as I would like, it is still being made. There is a constant need to remind myself that this is a long process and that the result we want will eventually come.
Some good news is that my doctor had no problems with my plans to visit Milwaukee for my brother Tim's graduation next month! That is very important to me, so I am happy for that. He is also supportive of me returning to work, and I anticipate that I'll be getting back to work at some point in May. Those are two very tangible events that I have to look forward to, which is a huge blessing. Today is Kate's birthday, so that is another reason to celebrate. She and I continue to get old, and we are both happy that I'll be healthy enough to celebrate tommorow.
Saturday, April 25, 2009
Friday, April 17, 2009
Day +119
Spent a little more time at NIH this week than I was planning on. I developed a cough and runny nose earlier in the week, and it wasn't really getting better after a day or so. On Tuesday I went in to NIH and was seen by the PA. I chekced out alright, but she had blood drawn and some other quick tests run. She sent me home with some cough medicine and Zyrtec, and wanted me to come back the next day for a CT scan.
Wednesday's CT scan showed that my lungs were pretty clear and that there was some irritation in my sinuses. However, the PA and one of my doctors noted that there wasn't any pus, which means it likely was not sinusitis. Their opinion was that I was dealing with allergies.
After those two visits this week I went to my scheduled appointment yesterday. While I was there, the results from one of Tuesday's tests came back that showed I had a respiratory virus. So I guess it was something else besides simple allergies. They don't know what type of virus it is yet, and they haven't changed my treatment at all. For now they just want me to wear masks if I am out in public, and to monitor my temperature for fevers a bit more carefully than usual.
The other issues I've been dealing with are the minor GVHD symptoms in my mouth and skin. I've noticed my skin clearing up and I'm not itching that much compared to last week. So I reported that I thought things were clearing up, only to have the doctors say they thought it looked worse. Hmm...this might be one of the instances when I trust my memory more than thiers. The acne-like rash is gone, but they were concerned about some discoloration of the skin. I guess I'll continue to use the creams the dermatologist prescribed, and I'll be cautious about my sun exposure. However, I'm feeling positive as long as I'm not itching that much.
The sores in my mouth the previous week stopped bothering me two days after taking the ointment prescribed by the dentist. My mouth feels a lot better, but again one of the doctors thought my mouth looked worse. What I feel is obviously most important to me, but I figure the doctors are more comfortable with what they can personally observe. A dental consult was set up yesterday morning so they could take a biopsy and verify the GVHD. The dentist examined my mouth and felt it looked better when comared to the photos that were taken of my mouth a week earlier by the other dentist. She opted not to take a biopsy, and left that up to the dentist who I will see for a follow up in two weeks. So not much was accomplished with the whole process.
The good news is that my blood counts are still coming back looking excellent. The minor GVHD isn't bothering me right now, and thats fine by me. Next week I'll have another PET scan to see how the cancer in my body is acting. Those results are always big news, but until then I guess things will just go on as usual.
Wednesday's CT scan showed that my lungs were pretty clear and that there was some irritation in my sinuses. However, the PA and one of my doctors noted that there wasn't any pus, which means it likely was not sinusitis. Their opinion was that I was dealing with allergies.
After those two visits this week I went to my scheduled appointment yesterday. While I was there, the results from one of Tuesday's tests came back that showed I had a respiratory virus. So I guess it was something else besides simple allergies. They don't know what type of virus it is yet, and they haven't changed my treatment at all. For now they just want me to wear masks if I am out in public, and to monitor my temperature for fevers a bit more carefully than usual.
The other issues I've been dealing with are the minor GVHD symptoms in my mouth and skin. I've noticed my skin clearing up and I'm not itching that much compared to last week. So I reported that I thought things were clearing up, only to have the doctors say they thought it looked worse. Hmm...this might be one of the instances when I trust my memory more than thiers. The acne-like rash is gone, but they were concerned about some discoloration of the skin. I guess I'll continue to use the creams the dermatologist prescribed, and I'll be cautious about my sun exposure. However, I'm feeling positive as long as I'm not itching that much.
The sores in my mouth the previous week stopped bothering me two days after taking the ointment prescribed by the dentist. My mouth feels a lot better, but again one of the doctors thought my mouth looked worse. What I feel is obviously most important to me, but I figure the doctors are more comfortable with what they can personally observe. A dental consult was set up yesterday morning so they could take a biopsy and verify the GVHD. The dentist examined my mouth and felt it looked better when comared to the photos that were taken of my mouth a week earlier by the other dentist. She opted not to take a biopsy, and left that up to the dentist who I will see for a follow up in two weeks. So not much was accomplished with the whole process.
The good news is that my blood counts are still coming back looking excellent. The minor GVHD isn't bothering me right now, and thats fine by me. Next week I'll have another PET scan to see how the cancer in my body is acting. Those results are always big news, but until then I guess things will just go on as usual.
Thursday, April 9, 2009
Day +112
Its been a good week and I'm continuing to do well. I'm home alone right now, and I think thats a sign of my progress. Kate and Isaiah took a trip up to her home in New York this week, which is great since she hasn't been able to get back there in a long time because of this situation. Having my health in a place where it doesn't feel uncomfortable for me to be on my own is a great thing.
So I had a dental appointment at NIH this morning at 9:00. That was a good thing, because the regular clinic visit was sped up to fit me in, and there wasn't a lot of waiting around. The rash on my face, chest, and back continued to clear up and its hard to really see it now. I explained that I do continue to itch at times, and occasionally have a sensation on my skin that feels like pin pricks. Both of these issues are around my chest and upper back, so they are in the same spots I had some of the rash earlier. The doctor gave my skin a good look, but really couldn't see much.
The other sign of GVHD that the transplant team had noticed was in my mouth. My mouth has felt dry at times over the past week, but I probably wouldn't have even noticed it if I hadn't been aware to notice it. I am definitely aware of a couple of sores that have developed under my tongue. One doctor felt the inside of my cheek was improved, so she thought it was somewhat good that my dental consult was today. Having the sores gives the dentist something a little better to look at.
So the dentist played around inside my mouth and took a bunch of pictures to document what it looks like. She explained that both the inside of the cheek and the sores under the tongue look like minor GVHD. She noted that I had a lot of saliva and that my gums appeared in good shape. Those were two positives in terms of the GVHD. I was prescribed a steroid cream to apply to the affected areas. She felt that should do a good job of clearing things up, and I'll follow up with her in three weeks.
Other than the issues that point to some GVHD, I seem to be doing great. My neutrophils and the rest of my blood work came back normal. My energy is up and I've got no complaints at all right now. Thanks to everybody for their recent support, and I hope everybody enjoys their Easter weekend coming up!
So I had a dental appointment at NIH this morning at 9:00. That was a good thing, because the regular clinic visit was sped up to fit me in, and there wasn't a lot of waiting around. The rash on my face, chest, and back continued to clear up and its hard to really see it now. I explained that I do continue to itch at times, and occasionally have a sensation on my skin that feels like pin pricks. Both of these issues are around my chest and upper back, so they are in the same spots I had some of the rash earlier. The doctor gave my skin a good look, but really couldn't see much.
The other sign of GVHD that the transplant team had noticed was in my mouth. My mouth has felt dry at times over the past week, but I probably wouldn't have even noticed it if I hadn't been aware to notice it. I am definitely aware of a couple of sores that have developed under my tongue. One doctor felt the inside of my cheek was improved, so she thought it was somewhat good that my dental consult was today. Having the sores gives the dentist something a little better to look at.
So the dentist played around inside my mouth and took a bunch of pictures to document what it looks like. She explained that both the inside of the cheek and the sores under the tongue look like minor GVHD. She noted that I had a lot of saliva and that my gums appeared in good shape. Those were two positives in terms of the GVHD. I was prescribed a steroid cream to apply to the affected areas. She felt that should do a good job of clearing things up, and I'll follow up with her in three weeks.
Other than the issues that point to some GVHD, I seem to be doing great. My neutrophils and the rest of my blood work came back normal. My energy is up and I've got no complaints at all right now. Thanks to everybody for their recent support, and I hope everybody enjoys their Easter weekend coming up!
Friday, April 3, 2009
Day +105
The past week has been another good one. On Monday I had a dermatology appointment, and by that point my rash had subsided considerably. It still itches occassionally, but the dermatologist thought it had improved. He did prescribe an antibacterial cream to go with the steroid cream already prescribed. However, he wasn't overly concerned, and I'll continue with treatment as usual.
Today my doctor remarked about how the rash had cleared up. Thats a good sign, but he also noted the inside of my mouth looked like minor GVHD. They had wanted a dental consult this past week, but the appointment wasn't made. It'll be scheduled for next week, when they will probably take a biopsy from inside my mouth to check the tissue. I haven't felt any discomfort in my mouth, but its apparently obvious to the doctors. They also took a few swabs of my inner cheek in order to check for any fungal or viral infections.
Other than that issue things appeared fine from the doctor's perspective. My blood results look good, and I've had nothing negative to report. My doctor wants to wait until my immune-suppressant drugs are tapered again before removing my hickman line. That decision will come in two weeks, so that will be another little thing to look forward to.
Some good news is that I spoke with the principal at my job, and he is willing to try and help me return to work with a shift in my responsibilities. He is willing to help me find tasks that involve support of the program without direct student involvement, and limiting my interactions with students to controlled, one on one situations. I shared this with my doctor today and he was happy to hear this news. When I initially brought up my desire to return to work last week with my doctor, he seemed pretty hesitant about it. Today I got the feeling that he was sympathetic to my need to return to work, and was happy that my supervisor and I were creating a plan that would allow me to better control my work environment.
The principal is trying to find out details from human resources about what I need to do to reenter the system. I'm not sure of a time frame for when things will work out, but I feel that the process is moving forward.
In addition to all of the good news with my health, I turned 27 this week. Twenty six was a pretty intense year, but its a blessing to be here for my 27th. It was also great to be able to celebrate my birthday without feeling ill or exhausted.
Today my doctor remarked about how the rash had cleared up. Thats a good sign, but he also noted the inside of my mouth looked like minor GVHD. They had wanted a dental consult this past week, but the appointment wasn't made. It'll be scheduled for next week, when they will probably take a biopsy from inside my mouth to check the tissue. I haven't felt any discomfort in my mouth, but its apparently obvious to the doctors. They also took a few swabs of my inner cheek in order to check for any fungal or viral infections.
Other than that issue things appeared fine from the doctor's perspective. My blood results look good, and I've had nothing negative to report. My doctor wants to wait until my immune-suppressant drugs are tapered again before removing my hickman line. That decision will come in two weeks, so that will be another little thing to look forward to.
Some good news is that I spoke with the principal at my job, and he is willing to try and help me return to work with a shift in my responsibilities. He is willing to help me find tasks that involve support of the program without direct student involvement, and limiting my interactions with students to controlled, one on one situations. I shared this with my doctor today and he was happy to hear this news. When I initially brought up my desire to return to work last week with my doctor, he seemed pretty hesitant about it. Today I got the feeling that he was sympathetic to my need to return to work, and was happy that my supervisor and I were creating a plan that would allow me to better control my work environment.
The principal is trying to find out details from human resources about what I need to do to reenter the system. I'm not sure of a time frame for when things will work out, but I feel that the process is moving forward.
In addition to all of the good news with my health, I turned 27 this week. Twenty six was a pretty intense year, but its a blessing to be here for my 27th. It was also great to be able to celebrate my birthday without feeling ill or exhausted.
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