Hey tschmith (terrie) hope your scans were what you hoped for

Hi Artie and Brian!

     Thank you for thinking of me!  I'm actually still waiting for the official results of my MRI and scans but Dr. Atkins took a look at the scans and said he saw nothing of concern.  He said that a soft tissue mass that I had was gone.  Not surprising to me is that he said there's inflammation around the L2 where I had surgery last October as my back tends to bother me.  It gets tight and feels tired.

     The whole day was a trainwreck!  The DC traffic was even more horrible than usual. When I arrived for my MRI, they told me that I was scheduled for October 30th not September 30th.  I had the orders sent to me by my doctor's office which said Sept 30th so then they had to work me in to both the MRI and CT scan schedules.  Lots of waiting around.  I saw my doctor (Dr. Atkins) much later than scheduled and then had to get my 5th infusion.  They didn't have my radiology reports yet or previous scans to compare them with. I had given them the disc I had from NIH but had to sign another release from NIH as they either wanted more information or lost the disc…don't really know because by then I was in the infusion center.  The next day NIH called and wanted to verify that I was indeed the person who signed the release because they said the S in Schmith looked a little different.  I was getting my infusion when they asked me to sign the fax so my S might not have been as pretty as usual.  GEEEZZZZ!!!  Enough…just get them the scans that I thought they had to begin with.

    On the bright side, I like Dr. Atkins and trust him.  Communication isn't the greatest with Georgetown, but Lombardi Cancer Center (part of Medstar Georgetown) was where I could get into the EAP back in early July.  My original doctor, Dr. Lipson  from Hopkins, referred me to them because Hopkins had yet to get Pembro.  He also has great respect for Dr. Atkins and felt I would be in good hands.  I will get one more infusion through EAP.   Artie, did you get 6 before billing your inusrance will begin?

    Oh, my LDH has dropped considerably.  534 in June, 184 in September. My eyelashes and eyebrows are quickly turning white. but my side effects have been mild…some fatigue and skin changes.  Also rather grumpy after Tuesday's nonsense.

Will update next week when hopefully I get some real results!!!  How is the radiation going, Artie?

Terrie

Geez Terrie!  What a heck of a day.  Don't these people know that stress is not good for our immune systems!  I used to live in Northern Virginia and I know what you mean about the traffic.  I loved the area but certainly don't miss the traffic.  The signature thing with NIH is kinda annoying and encouraging at the same time.  Glad to see they really take patient privacy seriously. 

I tell you what Terrie, those LDH numbers sure do sound promising.  Hopefully that's a good sign.  Look forward to hearing your results next week.

Brian

Geez Terrie!  What a heck of a day.  Don't these people know that stress is not good for our immune systems!  I used to live in Northern Virginia and I know what you mean about the traffic.  I loved the area but certainly don't miss the traffic.  The signature thing with NIH is kinda annoying and encouraging at the same time.  Glad to see they really take patient privacy seriously. 

I tell you what Terrie, those LDH numbers sure do sound promising.  Hopefully that's a good sign.  Look forward to hearing your results next week.

Brian

Geez Terrie!  What a heck of a day.  Don't these people know that stress is not good for our immune systems!  I used to live in Northern Virginia and I know what you mean about the traffic.  I loved the area but certainly don't miss the traffic.  The signature thing with NIH is kinda annoying and encouraging at the same time.  Glad to see they really take patient privacy seriously. 

I tell you what Terrie, those LDH numbers sure do sound promising.  Hopefully that's a good sign.  Look forward to hearing your results next week.

Brian

Hi Artie!   

Dr. Atkins thinks that the t-cells I received while in the MAGE TCR trial at NIH (March and April) might have given Keytruda an extra kick.  A soft tissue mass that I had near my scapula responded after the first infusion and my LDH dropped by 200 in the first three weeks. This is only a possibility but who knows!!!!  Another patient who had a t-cell infusion responded quickly too. I'm concerned about the inflammation around my L2 and pain in my right hip, but I feel much better than I did in June.  I hope the radiation works for you.  I had radiation to my L2 before I had surgery last Halloween.  They couldn't remove all the tumor and it didn't respond to the radiation. I bet I'll end up having more radiation unless the inflammation is being caused by the 2 rods and 6 screws in my back.  Maybe I'll respond better with the help of the t-cells (if they're still alive) and Keytruda. You really seem to understand radiation whereas I honestly just went with what they planned. If I have to have it again I'm going to ask a lot more questions and be better informed! I also had stereotactic radiosurgery after my brain tumor was removed.  So far, so good…at least they didn't say anything about a recurrence last Tuesday.  On the other hand, I didn't get much info but will be expecting it tomorrow.  I'll be on the phone if I don't! 

Keep the faith because i really think Keytruda and it's cousins are going to keep us going for many years.  Oh…I asked Dr. Atkins if I should get a flu shot and he said no.  Keytruda protects us from the flu.  Wasn't sure if you'd been told that.  I wasn't … and I didn't see anything about it in my paperwork.

Take care!

Terrie

Hi Artie!   

Dr. Atkins thinks that the t-cells I received while in the MAGE TCR trial at NIH (March and April) might have given Keytruda an extra kick.  A soft tissue mass that I had near my scapula responded after the first infusion and my LDH dropped by 200 in the first three weeks. This is only a possibility but who knows!!!!  Another patient who had a t-cell infusion responded quickly too. I'm concerned about the inflammation around my L2 and pain in my right hip, but I feel much better than I did in June.  I hope the radiation works for you.  I had radiation to my L2 before I had surgery last Halloween.  They couldn't remove all the tumor and it didn't respond to the radiation. I bet I'll end up having more radiation unless the inflammation is being caused by the 2 rods and 6 screws in my back.  Maybe I'll respond better with the help of the t-cells (if they're still alive) and Keytruda. You really seem to understand radiation whereas I honestly just went with what they planned. If I have to have it again I'm going to ask a lot more questions and be better informed! I also had stereotactic radiosurgery after my brain tumor was removed.  So far, so good…at least they didn't say anything about a recurrence last Tuesday.  On the other hand, I didn't get much info but will be expecting it tomorrow.  I'll be on the phone if I don't! 

Keep the faith because i really think Keytruda and it's cousins are going to keep us going for many years.  Oh…I asked Dr. Atkins if I should get a flu shot and he said no.  Keytruda protects us from the flu.  Wasn't sure if you'd been told that.  I wasn't … and I didn't see anything about it in my paperwork.

Take care!

Terrie

Hi Artie!   

Dr. Atkins thinks that the t-cells I received while in the MAGE TCR trial at NIH (March and April) might have given Keytruda an extra kick.  A soft tissue mass that I had near my scapula responded after the first infusion and my LDH dropped by 200 in the first three weeks. This is only a possibility but who knows!!!!  Another patient who had a t-cell infusion responded quickly too. I'm concerned about the inflammation around my L2 and pain in my right hip, but I feel much better than I did in June.  I hope the radiation works for you.  I had radiation to my L2 before I had surgery last Halloween.  They couldn't remove all the tumor and it didn't respond to the radiation. I bet I'll end up having more radiation unless the inflammation is being caused by the 2 rods and 6 screws in my back.  Maybe I'll respond better with the help of the t-cells (if they're still alive) and Keytruda. You really seem to understand radiation whereas I honestly just went with what they planned. If I have to have it again I'm going to ask a lot more questions and be better informed! I also had stereotactic radiosurgery after my brain tumor was removed.  So far, so good…at least they didn't say anything about a recurrence last Tuesday.  On the other hand, I didn't get much info but will be expecting it tomorrow.  I'll be on the phone if I don't! 

Keep the faith because i really think Keytruda and it's cousins are going to keep us going for many years.  Oh…I asked Dr. Atkins if I should get a flu shot and he said no.  Keytruda protects us from the flu.  Wasn't sure if you'd been told that.  I wasn't … and I didn't see anything about it in my paperwork.

Take care!

Terrie

Hi Artie and Brian!

     Thank you for thinking of me!  I'm actually still waiting for the official results of my MRI and scans but Dr. Atkins took a look at the scans and said he saw nothing of concern.  He said that a soft tissue mass that I had was gone.  Not surprising to me is that he said there's inflammation around the L2 where I had surgery last October as my back tends to bother me.  It gets tight and feels tired.

     The whole day was a trainwreck!  The DC traffic was even more horrible than usual. When I arrived for my MRI, they told me that I was scheduled for October 30th not September 30th.  I had the orders sent to me by my doctor's office which said Sept 30th so then they had to work me in to both the MRI and CT scan schedules.  Lots of waiting around.  I saw my doctor (Dr. Atkins) much later than scheduled and then had to get my 5th infusion.  They didn't have my radiology reports yet or previous scans to compare them with. I had given them the disc I had from NIH but had to sign another release from NIH as they either wanted more information or lost the disc…don't really know because by then I was in the infusion center.  The next day NIH called and wanted to verify that I was indeed the person who signed the release because they said the S in Schmith looked a little different.  I was getting my infusion when they asked me to sign the fax so my S might not have been as pretty as usual.  GEEEZZZZ!!!  Enough…just get them the scans that I thought they had to begin with.

    On the bright side, I like Dr. Atkins and trust him.  Communication isn't the greatest with Georgetown, but Lombardi Cancer Center (part of Medstar Georgetown) was where I could get into the EAP back in early July.  My original doctor, Dr. Lipson  from Hopkins, referred me to them because Hopkins had yet to get Pembro.  He also has great respect for Dr. Atkins and felt I would be in good hands.  I will get one more infusion through EAP.   Artie, did you get 6 before billing your inusrance will begin?

    Oh, my LDH has dropped considerably.  534 in June, 184 in September. My eyelashes and eyebrows are quickly turning white. but my side effects have been mild…some fatigue and skin changes.  Also rather grumpy after Tuesday's nonsense.

Will update next week when hopefully I get some real results!!!  How is the radiation going, Artie?

Terrie

Hi Artie and Brian!

     Thank you for thinking of me!  I'm actually still waiting for the official results of my MRI and scans but Dr. Atkins took a look at the scans and said he saw nothing of concern.  He said that a soft tissue mass that I had was gone.  Not surprising to me is that he said there's inflammation around the L2 where I had surgery last October as my back tends to bother me.  It gets tight and feels tired.

     The whole day was a trainwreck!  The DC traffic was even more horrible than usual. When I arrived for my MRI, they told me that I was scheduled for October 30th not September 30th.  I had the orders sent to me by my doctor's office which said Sept 30th so then they had to work me in to both the MRI and CT scan schedules.  Lots of waiting around.  I saw my doctor (Dr. Atkins) much later than scheduled and then had to get my 5th infusion.  They didn't have my radiology reports yet or previous scans to compare them with. I had given them the disc I had from NIH but had to sign another release from NIH as they either wanted more information or lost the disc…don't really know because by then I was in the infusion center.  The next day NIH called and wanted to verify that I was indeed the person who signed the release because they said the S in Schmith looked a little different.  I was getting my infusion when they asked me to sign the fax so my S might not have been as pretty as usual.  GEEEZZZZ!!!  Enough…just get them the scans that I thought they had to begin with.

    On the bright side, I like Dr. Atkins and trust him.  Communication isn't the greatest with Georgetown, but Lombardi Cancer Center (part of Medstar Georgetown) was where I could get into the EAP back in early July.  My original doctor, Dr. Lipson  from Hopkins, referred me to them because Hopkins had yet to get Pembro.  He also has great respect for Dr. Atkins and felt I would be in good hands.  I will get one more infusion through EAP.   Artie, did you get 6 before billing your inusrance will begin?

    Oh, my LDH has dropped considerably.  534 in June, 184 in September. My eyelashes and eyebrows are quickly turning white. but my side effects have been mild…some fatigue and skin changes.  Also rather grumpy after Tuesday's nonsense.

Will update next week when hopefully I get some real results!!!  How is the radiation going, Artie?

Terrie