Talk Cancer

Question:

Hi, Special prayers for both of you. What terrible luck, so rare, only seen one and it was a knee joint. Never have I heard on of one on the hand. Special prayers for Howard and for you.

Thank you Mu.  Most of the time it shows up in the lower body, and the knee is the most common site.  In searching I found a few more in the hand, but they’re rare. Take care, Carmen

Response:

Hi, Thanks for the update. Sorry you and Sarge are going through this, the waiting must be dismal. Glad to hear his lungs are clear though, that’s great news. Good on you for insisting he get it checked out when he did and not letting the army play russian roulette with his life. Sending loads of positive thoughts your way.

Thank you Rachel.  :-) Take care, Carmen

Response:

Carmen, I’ll make certain that your family, and you, are in my family’s prayers. — JJ.

– Hide quoted text — Show quoted text – Hi Rosie, will remain in my thoughts and prayers! Thank you Rosie. Take care, Carmen

Response:

We ought to find out the bone scan results tomorrow and I’ll post those too.  It’s kind of odd because if his bones are clear then the hand needs to come off for the best chance of a cure.  If they aren’t clear then there’s no sense to removing the hand since the cancer will have already left the original tumor site.  He’d get to keep it.  What do you wish for?  Weird….

That’s pretty crummy, Carmen.  :-(  Better to lose your hand than your life, but it’s going to be so hard…. — Jean B.

Response:

My thoughts are with you, sweetie. eff

Response:

Thanks for the update, Carmen. I AM one of those ‘geeks’ (genetics was my major) so getting the details was interesting.  Thank you for including them. I’m SO glad the lung scan came back clean.  That’s got to be a huge relief for you.  I hope the rest of the scan comes back equally good news. I’ll be continuing to keep you both in my thoughts and sending Healing Vibes to Sarge for the best possible outcome.  In the meantime I hope he continues to feel well. Aramanth

Response:

Special prayers for both of you. What terrible luck, so rare, only seen one and it was a knee joint. Never have I heard on of one on the hand. Special prayers for Howard and for you. Mu – Hide quoted text — Show quoted text -You asked about Sarge’s health issues, and since I’ve gotten some other requests I’ll just post the answer here. The tumor in his left palm was officially diagnosed as a synovial sarcoma based on the immunohistochemical testing BUT the pathology lab did not perform a karyotype to ascertain the tumor’s genetics.  This sort of cancer has a specific mutation associated with it.  For the geeks in the group it’s a reciprocal translocation of SYT on 18p 11.2 with (most often) SSX1 or SSX2 on Xq 11.2.  For the nongeeks that means that the SYT (synovial tumor gene – imaginative, huh?) gene on the short arm of chromosome #18 switches out for the SSX1 or SSX2 (synovial sarcoma gene 1 or 2) on the long arm of the "X" chromosome. I’ve asked that the karyotype be performed for a couple of reasons. First, the Armed Forces Institute of Pathology at Walter Reed only sees an average of two cases of synovial sarcoma annually – it’s a rare cancer.  Secondly, people make mistakes.  Treatment will be predicated on the type of cancer we’re up against and in Sarge’s case the stakes are high.  Since synovial sarcomas are aggressive cancers and often recur at the site of the primary tumor a "wide excision" is the front line treatment.  Due to location that will mean amputation of his left hand, followed by chemotherapy.  The specific mutation is *only* seen in synovial sarcoma, so that would remove the last niggling doubt in my mind.  One more reason for wanting the kryotype done is there are prognosticative differences in the cancers correlated with *which* SSX gene is involved.  SSX1 corresponds with a deadlier form of the disease, and would militate towards the most aggressive treatment decisions. The first spot this cancer likes to vacation is the lungs.  About 25% of the time it does it.  Howard’s lungs have checked out clean (yeah!), and we’re awaiting the results of the full body bone scan he had Thursday. At this point we’re waiting for the bonescan results as well as an answer as to whether or not AFIP will perform the karyotype.  His surgeon down at Eisenhower is going to relay the request, but cannot promise it’ll be granted.  Waiting sucks. In the meantime he feels great.  :-) I’ll post more updates when they happen. Take care all, Carmen

http://antwrp.gsfc.nasa.gov/apod/ap970210.html Lift well, Eat less, Walk fast, Live long.

Response:

Carmen, I hope that the clear lungs are a harbinger of test results to come:)Robyn

Response:

Hi Carmen Thanks for the update. Sorry you and Sarge are going through this, the waiting must be dismal. Glad to hear his lungs are clear though, that’s great news. Good on you for insisting he get it checked out when he did and not letting the army play russian roulette with his life. Sending loads of positive thoughts your way. cheers Rachel (New Zealand)

Response:

Carmen and Sarge, I apologize for not sending you both my prayers and positive thoughts until now.  Carmen, you sound like a very strong person…I admire that in you, and I feel that Sarge is a lucky man to have your love, support, and devotion.  Best wishes for both of you. Tee http://www.geocities.com/tee_king Remove -no-spam- to email me.

Response:

Sending prayers and thoughts your way. Linda

Response:

Since synovial sarcomas are aggressive cancers and often recur at the site of the primary tumor a "wide excision" is the front line treatment.  Due to location that will mean amputation of his left hand, followed by chemotherapy.  

Sorry to hear about this.  That’s a tough road to go down. The first spot this cancer likes to vacation is the lungs.  About 25% of the time it does it.  Howard’s lungs have checked out clean (yeah!), and we’re awaiting the results of the full body bone scan he had Thursday.

Hope he gets clean results. At this point we’re waiting for the bonescan results as well as an answer as to whether or not AFIP will perform the karyotype.  His surgeon down at Eisenhower is going to relay the request, but cannot promise it’ll be granted.  Waiting sucks.

Waiting on test and news are their special hell.  Knowing and dealing with issues are hard but something your can *DO* — waiting to known is a helpless pain. In the meantime he feels great.  :-) I’ll post more updates when they happen.

Thanks, and let us know when you can.  Thoughts and hopes are with you. — Rudy – Remove the Z from my address to respond. "It is better to die on your feet than to live on your knees!"   -Emiliano Zapata Check out the a.s.d.l-c FAQ at:  http://www.grossweb.com/asdlc/faq.htm

Response:

Hi Rosie, will remain in my thoughts and prayers!

Thank you Rosie. Take care, Carmen

Response:

Hi Jean, Thanks for the update, Carmen.  I’m glad to hear Sarge’s lungs are clear.  I hope you get the test done and that it indiactes the better of the two scenarios.

We ought to find out the bone scan results tomorrow and I’ll post those too.  It’s kind of odd because if his bones are clear then the hand needs to come off for the best chance of a cure.  If they aren’t clear then there’s no sense to removing the hand since the cancer will have already left the original tumor site.  He’d get to keep it.  What do you wish for?  Weird…. Take care, Carmen

Response:

Hi, I’ll post more updates when they happen. please do, and know that you have my bestest wishes for a positive outcome.

Tomorrow we should get the bone scan results, and I’ll post those. Thanks.  :-) Take care, Carmen

Response:

Hello, My thoughts are with you and your family. Your positive attitude through all this will certainly make a difference in the outcome.

My goal is to do whatever it takes to get him healthy, and if that doesn’t work then to do my best to make him happy despite being sick. Thank you. Take care, Carmen

Response:

Hi Eff, My thoughts are with you, sweetie.

Thank you Eff.  :-) Take care, Carmen

Response:

Hello, I hope that the clear lungs are a harbinger of test results to come:)Robyn

Thank you Robyn.  So do we.  :-) Take care, Carmen

Response:

I’ll be thinking of you and yours Carmen, and wishing you all the best. — Cheri Type 2, no meds for now. – Hide quoted text — Show quoted text – Hi Rosie, will remain in my thoughts and prayers! Thank you Rosie. Take care, Carmen

Response:

Hi, I AM one of those ‘geeks’ (genetics was my major) so getting the details was interesting.  Thank you for including them.

I knew there’d probably be a few.  Despite the impact it has on Howard and the rest of the family I can’t help but be interested in the details. Perhaps that’s my way of getting some sense of "control" in a situation where it’s pretty hard to come by. I’m SO glad the lung scan came back clean.  That’s got to be a huge relief for you.  I hope the rest of the scan comes back equally good news.

So far, so good.  If the bone scan is negative too then we aren’t out of the woods – he”l end up with his left hand amputated – but we’ll have the best setup for a good longterm outcome. I’ll be continuing to keep you both in my thoughts and sending Healing Vibes to Sarge for the best possible outcome.  In the meantime I hope he continues to feel well.

Thank you.  It’s ironic that he won’t feel bad until the medical folks start the treatments.  I hope that his stellar good health holds up to the rigors to come. Take care, Carmen

Response:

Hello Rudy, You asked about Sarge’s health issues, and since I’ve gotten some other requests I’ll just post the answer here. The tumor in his left palm was officially diagnosed as a synovial sarcoma based on the immunohistochemical testing BUT the pathology lab did not perform a karyotype to ascertain the tumor’s genetics.  This sort of cancer has a specific mutation associated with it.  For the geeks in the group it’s a reciprocal translocation of SYT on 18p 11.2 with (most often) SSX1 or SSX2 on Xq 11.2.  For the nongeeks that means that the SYT (synovial tumor gene – imaginative, huh?) gene on the short arm of chromosome #18 switches out for the SSX1 or SSX2 (synovial sarcoma gene 1 or 2) on the long arm of the "X" chromosome. I’ve asked that the karyotype be performed for a couple of reasons. First, the Armed Forces Institute of Pathology at Walter Reed only sees an average of two cases of synovial sarcoma annually – it’s a rare cancer.  Secondly, people make mistakes.  Treatment will be predicated on the type of cancer we’re up against and in Sarge’s case the stakes are high.  Since synovial sarcomas are aggressive cancers and often recur at the site of the primary tumor a "wide excision" is the front line treatment.  Due to location that will mean amputation of his left hand, followed by chemotherapy.  The specific mutation is *only* seen in synovial sarcoma, so that would remove the last niggling doubt in my mind.  One more reason for wanting the kryotype done is there are prognosticative differences in the cancers correlated with *which* SSX gene is involved.  SSX1 corresponds with a deadlier form of the disease, and would militate towards the most aggressive treatment decisions. The first spot this cancer likes to vacation is the lungs.  About 25% of the time it does it.  Howard’s lungs have checked out clean (yeah!), and we’re awaiting the results of the full body bone scan he had Thursday. At this point we’re waiting for the bonescan results as well as an answer as to whether or not AFIP will perform the karyotype.  His surgeon down at Eisenhower is going to relay the request, but cannot promise it’ll be granted.  Waiting sucks. In the meantime he feels great.  :-) I’ll post more updates when they happen. Take care all, Carmen

Response:

will remain in my thoughts and prayers! — read and post daily, it works! rosie

– Hide quoted text — Show quoted text – Hello Rudy, You asked about Sarge’s health issues, and since I’ve gotten some other requests I’ll just post the answer here. The tumor in his left palm was officially diagnosed as a synovial sarcoma based on the immunohistochemical testing BUT the pathology lab did not perform a karyotype to ascertain the tumor’s genetics. This sort of cancer has a specific mutation associated with it.  For the geeks in the group it’s a reciprocal translocation of SYT on 18p 11.2 with (most often) SSX1 or SSX2 on Xq 11.2.  For the nongeeks that means that the SYT (synovial tumor gene – imaginative, huh?) gene on the short arm of chromosome #18 switches out for the SSX1 or SSX2 (synovial sarcoma gene 1 or 2) on the long arm of the "X" chromosome. I’ve asked that the karyotype be performed for a couple of reasons. First, the Armed Forces Institute of Pathology at Walter Reed only sees an average of two cases of synovial sarcoma annually – it’s a rare cancer.  Secondly, people make mistakes.  Treatment will be predicated on the type of cancer we’re up against and in Sarge’s case the stakes are high.  Since synovial sarcomas are aggressive cancers and often recur at the site of the primary tumor a "wide excision" is the front line treatment.  Due to location that will mean amputation of his left hand, followed by chemotherapy.  The specific mutation is *only* seen in synovial sarcoma, so that would remove the last niggling doubt in my mind.  One more reason for wanting the kryotype done is there are prognosticative differences in the cancers correlated with *which* SSX gene is involved.  SSX1 corresponds with a deadlier form of the disease, and would militate towards the most aggressive treatment decisions. The first spot this cancer likes to vacation is the lungs.  About 25% of the time it does it.  Howard’s lungs have checked out clean (yeah!), and we’re awaiting the results of the full body bone scan he had Thursday. At this point we’re waiting for the bonescan results as well as an answer as to whether or not AFIP will perform the karyotype.  His surgeon down at Eisenhower is going to relay the request, but cannot promise it’ll be granted.  Waiting sucks. In the meantime he feels great.  :-) I’ll post more updates when they happen. Take care all, Carmen

Response:

- Hide quoted text — Show quoted text – Hello Rudy, You asked about Sarge’s health issues, and since I’ve gotten some other requests I’ll just post the answer here. The tumor in his left palm was officially diagnosed as a synovial sarcoma based on the immunohistochemical testing BUT the pathology lab did not perform a karyotype to ascertain the tumor’s genetics.  This sort of cancer has a specific mutation associated with it.  For the geeks in the group it’s a reciprocal translocation of SYT on 18p 11.2 with (most often) SSX1 or SSX2 on Xq 11.2.  For the nongeeks that means that the SYT (synovial tumor gene – imaginative, huh?) gene on the short arm of chromosome #18 switches out for the SSX1 or SSX2 (synovial sarcoma gene 1 or 2) on the long arm of the "X" chromosome. I’ve asked that the karyotype be performed for a couple of reasons. First, the Armed Forces Institute of Pathology at Walter Reed only sees an average of two cases of synovial sarcoma annually – it’s a rare cancer.  Secondly, people make mistakes.  Treatment will be predicated on the type of cancer we’re up against and in Sarge’s case the stakes are high.  Since synovial sarcomas are aggressive cancers and often recur at the site of the primary tumor a "wide excision" is the front line treatment.  Due to location that will mean amputation of his left hand, followed by chemotherapy.  The specific mutation is *only* seen in synovial sarcoma, so that would remove the last niggling doubt in my mind.  One more reason for wanting the kryotype done is there are prognosticative differences in the cancers correlated with *which* SSX gene is involved.  SSX1 corresponds with a deadlier form of the disease, and would militate towards the most aggressive treatment decisions. The first spot this cancer likes to vacation is the lungs.  About 25% of the time it does it.  Howard’s lungs have checked out clean (yeah!), and we’re awaiting the results of the full body bone scan he had Thursday. At this point we’re waiting for the bonescan results as well as an answer as to whether or not AFIP will perform the karyotype.  His surgeon down at Eisenhower is going to relay the request, but cannot promise it’ll be granted.  Waiting sucks. In the meantime he feels great.  :-) I’ll post more updates when they happen. Take care all, Carmen

Thanks for the update, Carmen.  I’m glad to hear Sarge’s lungs are clear.  I hope you get the test done and that it indiactes the better of the two scenarios. — Jean B.

Response:

Waiting sucks.

ayuh. In the meantime he feels great.  :-)

i’m very glad to hear it.   I’ll post more updates when they happen.

please do, and know that you have my bestest wishes for a positive outcome.  

Response:

Carmen, My thoughts are with you and your family. Your positive attitude through all this will certainly make a difference in the outcome. Brenda – Hide quoted text — Show quoted text -Hello Rudy, You asked about Sarge’s health issues, and since I’ve gotten some other requests I’ll just post the answer here. The tumor in his left palm was officially diagnosed as a synovial sarcoma based on the immunohistochemical testing BUT the pathology lab did not perform a karyotype to ascertain the tumor’s genetics.  This sort of cancer has a specific mutation associated with it.  For the geeks in the group it’s a reciprocal translocation of SYT on 18p 11.2 with (most often) SSX1 or SSX2 on Xq 11.2.  For the nongeeks that means that the SYT (synovial tumor gene – imaginative, huh?) gene on the short arm of chromosome #18 switches out for the SSX1 or SSX2 (synovial sarcoma gene 1 or 2) on the long arm of the "X" chromosome. I’ve asked that the karyotype be performed for a couple of reasons. First, the Armed Forces Institute of Pathology at Walter Reed only sees an average of two cases of synovial sarcoma annually – it’s a rare cancer.  Secondly, people make mistakes.  Treatment will be predicated on the type of cancer we’re up against and in Sarge’s case the stakes are high.  Since synovial sarcomas are aggressive cancers and often recur at the site of the primary tumor a "wide excision" is the front line treatment.  Due to location that will mean amputation of his left hand, followed by chemotherapy.  The specific mutation is *only* seen in synovial sarcoma, so that would remove the last niggling doubt in my mind.  One more reason for wanting the kryotype done is there are prognosticative differences in the cancers correlated with *which* SSX gene is involved.  SSX1 corresponds with a deadlier form of the disease, and would militate towards the most aggressive treatment decisions. The first spot this cancer likes to vacation is the lungs.  About 25% of the time it does it.  Howard’s lungs have checked out clean (yeah!), and we’re awaiting the results of the full body bone scan he had Thursday. At this point we’re waiting for the bonescan results as well as an answer as to whether or not AFIP will perform the karyotype.  His surgeon down at Eisenhower is going to relay the request, but cannot promise it’ll be granted.  Waiting sucks. In the meantime he feels great.  :-) I’ll post more updates when they happen. Take care all, Carmen

Response: