So far so good. I don't have a lot of energy so this will be short. I finished chemo on tuesday I think. I've had a higher heart rate, but the tests turned up nothing so they are not worried about it. I had been getting quite restless in the hospital. So since I have been doing quite well, they are allowing me to go to outpatient.
I will have daily hospital visits for now so we have to stay in Rochester for the time being. Bone Marrow biopsy is tentively scheduled for May 1st.
Brent and Jessica briought all the kids down on sunday for a visit. It was a special time to see them and have them in my room. I miss them so much when I am away from them. I am praying this treatment works this time. I need to see them grow up,
Mom and Andy have been with me the whole time, i am thankful for that, There is no better comfort then to have them with me through this. i know there are many parying for me. Please keep it coming.
Thursday, April 25, 2013
Saturday, April 20, 2013
AML: Salvage Chemo - Update
So far things are going quite well. When I arrived at Mayo I could barely walk because of pain in my hip and groin areas. My heart rate was also high. A normal resting heart rate for me is about 80-100 beats per minute. When I came in my resting heart rate was about 125. The doctor kept asking me if this was normal but up until now, I hadn't paid attention to what normal was for me.
At first the doctors said it wasn't anything to be worried about but they did order some tests which I have mentioned in my prior post. I was also scheduled to have a CT scan to see if they could find out why my heart rate was so high. In the meantime we started the chemo.
When I woke Friday morning I no longer had pain in my hips. I could walk around with little evidence of the searing pain I had before. In fact, I felt quite well... better then I have since back in October before this all started again. As an added bonus, my heart rate has returned to normal levels.
When the doctors did their rounds Friday morning, they were quite happy that the chemo acted so quickly to relieve the pain and heart rate. Their comments led us (Ira and I) to the conclusion that they were much more concerned about my high heart rate then they originally let on.
I have just started day 3 of chemo. The doctors are impressed that I have not had an nausea or stomach issues yet. They even suggested that if I continue to tolerate the chemo this well I may be able to switch to an outpatient some time next week. The main advantage of being an outpatient is that the food is better. I guess I was spoiled at Sanford. The food here really is quite poor.
Mom and Dad arrived last night. Uncle Mike is watching the cattle so Dad could make the trip (Thanks Mike!). The girls are at the Sioux Falls Storm cheer camp today along with their cousin McKinley. They really enjoy dancing and this is Layla's first time performing with her big sisters. They perform at halftime of tonight's Storm game.
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Today they stopped the IV pain meds. My blood sugars spiked above 300 so I have been getting insulin. I don't generally have blood sugar issues but I was given steroids yesterday and that resulted in the higher sugar levels. The huge piece of Bunnie's coconut cake from the Canadian Honker also might have had something to do with it (Thanks Ellie!).
So far so good seems to be the common answer for how things are going now. Thanks for all the messages. I can feel the love.
At first the doctors said it wasn't anything to be worried about but they did order some tests which I have mentioned in my prior post. I was also scheduled to have a CT scan to see if they could find out why my heart rate was so high. In the meantime we started the chemo.
When I woke Friday morning I no longer had pain in my hips. I could walk around with little evidence of the searing pain I had before. In fact, I felt quite well... better then I have since back in October before this all started again. As an added bonus, my heart rate has returned to normal levels.
When the doctors did their rounds Friday morning, they were quite happy that the chemo acted so quickly to relieve the pain and heart rate. Their comments led us (Ira and I) to the conclusion that they were much more concerned about my high heart rate then they originally let on.
I have just started day 3 of chemo. The doctors are impressed that I have not had an nausea or stomach issues yet. They even suggested that if I continue to tolerate the chemo this well I may be able to switch to an outpatient some time next week. The main advantage of being an outpatient is that the food is better. I guess I was spoiled at Sanford. The food here really is quite poor.
Mom and Dad arrived last night. Uncle Mike is watching the cattle so Dad could make the trip (Thanks Mike!). The girls are at the Sioux Falls Storm cheer camp today along with their cousin McKinley. They really enjoy dancing and this is Layla's first time performing with her big sisters. They perform at halftime of tonight's Storm game.
Today they stopped the IV pain meds. My blood sugars spiked above 300 so I have been getting insulin. I don't generally have blood sugar issues but I was given steroids yesterday and that resulted in the higher sugar levels. The huge piece of Bunnie's coconut cake from the Canadian Honker also might have had something to do with it (Thanks Ellie!).
So far so good seems to be the common answer for how things are going now. Thanks for all the messages. I can feel the love.
Thursday, April 18, 2013
AML: Salvage Chemo
Here's the plan. Tomorrow morning around 10 or 11 my chemo will start. It is called salvage chemo because it is kind of a last effort to kill the AML with chemo. It is only done when multiple treatments have failed. It's the most heavy duty, bad-ass chemo I will have had. I met with Dr. Hogan today and we talked things through. My options were either give this a shot or stop treatments.
I didn't fight through Nov, Dec, Jan & Feb to give up now. So we're on.
The intent it to do the salvage chemo, a bone marrow biopsy at day 14 and then if we have achieved remission, we will try to perfectly time the lymphocyte infusion from my original donor cells (leftovers from transplant) to boost the immune recovery. Then use new immune system to "Smash Camcer!" said in my best incredible hulk voice.
Here's the thing the chemo (carboplatin and topotepan) is going to be nasty. The risk of death during my 5 days of continuous chemo, failure of bone marrow recovery or risk of fatal infection are all much greater then any other treatment I have had. This really is a hail Mary.
I didn't get a real good vibe from the chemo team about this treatment. They will hit me with a high dose. 98% of the time, there are mouth and throat sores as a result of the chemo. If you recall, those same sores from my stem cell transplant were the most painful part of this whole experience. I am scared of the sores and scared of this treatment.
However, I am in a different place then I was in December. My head is on straight. I am coping better and I just physically fell better then I felt back then. As long as we don't fry an internal organ, I can fight through the rest.
I am away from Andy and the kids, but am in good hands. Andy's Dad is here with me and I am so happy that he is here. He has become one of my best friends as we have spent so much time together during all the treatments. Andy will join me Sunday and I am sure I will see Dad and or Mom as soon as the whether and calving let them get away. As a man of 34 years, I am not ashamed so say that I definitely want my mommy.
I miss all friends at Dak who I have been away from for far to long. I give thanks for all the extended family and friends that have lifted me and my family in their prayers and gifts. The strength in those prayers have gotten me this far. I know these continuing prayers will carry me through the new treatment. I am comfortable that no matter what happens now, things will play out as they should. I am at peace with that. I can only promise that I am going to leave it all on the field.
Go figure...The Truman Show is on AMC right now. I like that show. I guess it seems fitting to close this post as he might...
"Good morning, and in case I don't see ya: Good afternoon, good evening, and good night!"
I didn't fight through Nov, Dec, Jan & Feb to give up now. So we're on.
The intent it to do the salvage chemo, a bone marrow biopsy at day 14 and then if we have achieved remission, we will try to perfectly time the lymphocyte infusion from my original donor cells (leftovers from transplant) to boost the immune recovery. Then use new immune system to "Smash Camcer!" said in my best incredible hulk voice.
Here's the thing the chemo (carboplatin and topotepan) is going to be nasty. The risk of death during my 5 days of continuous chemo, failure of bone marrow recovery or risk of fatal infection are all much greater then any other treatment I have had. This really is a hail Mary.
I didn't get a real good vibe from the chemo team about this treatment. They will hit me with a high dose. 98% of the time, there are mouth and throat sores as a result of the chemo. If you recall, those same sores from my stem cell transplant were the most painful part of this whole experience. I am scared of the sores and scared of this treatment.
However, I am in a different place then I was in December. My head is on straight. I am coping better and I just physically fell better then I felt back then. As long as we don't fry an internal organ, I can fight through the rest.
I am away from Andy and the kids, but am in good hands. Andy's Dad is here with me and I am so happy that he is here. He has become one of my best friends as we have spent so much time together during all the treatments. Andy will join me Sunday and I am sure I will see Dad and or Mom as soon as the whether and calving let them get away. As a man of 34 years, I am not ashamed so say that I definitely want my mommy.
I miss all friends at Dak who I have been away from for far to long. I give thanks for all the extended family and friends that have lifted me and my family in their prayers and gifts. The strength in those prayers have gotten me this far. I know these continuing prayers will carry me through the new treatment. I am comfortable that no matter what happens now, things will play out as they should. I am at peace with that. I can only promise that I am going to leave it all on the field.
Go figure...The Truman Show is on AMC right now. I like that show. I guess it seems fitting to close this post as he might...
"Good morning, and in case I don't see ya: Good afternoon, good evening, and good night!"
Tuesday, April 16, 2013
AML: I'm Not Done Yet
I've got a bit of bad news. It turns out the Vidaza treatment didn't keep my cancer away for long. I have relapsed yet again. The treatment itself did go pretty well. My white count was slow to come back but that is how my prior (the bad one) Vidaza treatment went. This alone didn't raise any red flags.
Last Thursday I was to have another bone marrow biopsy (must look like Swiss cheese back there) This was biopsy lucky number 13 if I have counted correctly. The intent was to just confirm remission prior to me returning to Mayo for a checkup. About the same time I started having terrible hip and back pain just like when we first started this journey in Sept 2010.
I got the results yesterday. So in a short timeframe, we had to make arrangements to get to Mayo. Today I checked in to Rochester Methodist Hospital (Mayo) for what they call salvage chemotherapy. I don't have a lot of details yet on my planned treatment. We (Andy's dad Ira is taking first shift this time) arrived about 1:00 and I was settled by two.
After 2:00 today I had 3 blood draws for lab work, an IV line for fluids and pain meds (my hips), a brand new Picc line for treatment, an electrocardiogram, an echocardiogram, X-Rays to see if we can sort out what is up with the intense pain in my hips. Tomorrow is another bone marrow biopsy. They are saying that Thursday they will probably start chemo.
There are a couple of things that the doctors tell me is unusual. First the hip and back pain. But more significantly, my white count is low (1.3) but my hemoglobin and platelets are in the normal range. Hopefully things get a little clearer as we progress through tomorrow.
For now, the pain meds have made me comfortable. I am settled in. The intent of more chemo is to get remission and then do a lymphocyte infusion from my original donor right away.
It's a bummer to be away from Andy and the kids. Andy will join me next week. It's certainly frustrating to have to go through more of this. Still, at least there is something yet to try. After the lymphocyte infusion, we don't have any other options.
I'm hanging in there as best I can.
Last Thursday I was to have another bone marrow biopsy (must look like Swiss cheese back there) This was biopsy lucky number 13 if I have counted correctly. The intent was to just confirm remission prior to me returning to Mayo for a checkup. About the same time I started having terrible hip and back pain just like when we first started this journey in Sept 2010.
I got the results yesterday. So in a short timeframe, we had to make arrangements to get to Mayo. Today I checked in to Rochester Methodist Hospital (Mayo) for what they call salvage chemotherapy. I don't have a lot of details yet on my planned treatment. We (Andy's dad Ira is taking first shift this time) arrived about 1:00 and I was settled by two.
After 2:00 today I had 3 blood draws for lab work, an IV line for fluids and pain meds (my hips), a brand new Picc line for treatment, an electrocardiogram, an echocardiogram, X-Rays to see if we can sort out what is up with the intense pain in my hips. Tomorrow is another bone marrow biopsy. They are saying that Thursday they will probably start chemo.
There are a couple of things that the doctors tell me is unusual. First the hip and back pain. But more significantly, my white count is low (1.3) but my hemoglobin and platelets are in the normal range. Hopefully things get a little clearer as we progress through tomorrow.
For now, the pain meds have made me comfortable. I am settled in. The intent of more chemo is to get remission and then do a lymphocyte infusion from my original donor right away.
It's a bummer to be away from Andy and the kids. Andy will join me next week. It's certainly frustrating to have to go through more of this. Still, at least there is something yet to try. After the lymphocyte infusion, we don't have any other options.
I'm hanging in there as best I can.
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