Kathy and Tom
I am so glad to hear that Tom is well and home .
We will be with you in spirit on Monday.
Thank you for the update
All our love
Debbie and family
Tom from Pennsylvania - Dx 2002, RIP 2021
Re: Tom from Pennsylvania - Dx 2002
Kathy, when the brain scanning was done last time - was it done at the same hospital where the abdominal surgery and possible skull lump biopsy is going to be done? If not, and they need to review it, you should get a copy on the CD to take with you. We now have all disks with Ivan's CT and MRI scans at home, makes it easier to consult different drs.
Good for Tom to be finally operated on the the bleeding source, hopefully it will be fixed. It looks like Ivan might have to have an abdominal surgery too as he is having a recurrence post adrenal cryoablation, I'll post more in his topic after we know the plan - very hard to make a right decision with drs responding slowly, lots of people on vacation.
Good for Tom to be finally operated on the the bleeding source, hopefully it will be fixed. It looks like Ivan might have to have an abdominal surgery too as he is having a recurrence post adrenal cryoablation, I'll post more in his topic after we know the plan - very hard to make a right decision with drs responding slowly, lots of people on vacation.
Olga
Re: Tom from Pennsylvania - Dx 2002
Hi Kathy and Tom
I hope answers were good ones with the endoscopy procedure and Tom is feeling less pain
Write when you are able
Much love
Debbie
I hope answers were good ones with the endoscopy procedure and Tom is feeling less pain
Write when you are able
Much love
Debbie
Debbie
Re: Tom from Pennsylvania - Dx 2002
Kathy, I've seen on a Facebook that the brain scan was moved to Sept. 11, what is the reason? Also what surgeon said post surgery re. pathology report, is it already aviailable?
Olga
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tom from Pennsylvania - Dx 2002
Dear Kathy,
I Hope that Monday's surgery went well and that Tom is now Home recovering, resting, and regaining strength and energy. My most caring thoughts and very best wishes are with both of you and I am anxiously awaiting an update when your time and schedule allow. In the meantime, please take good care of yourselves and know that you and your family are held very close in my heart.
With special hugs, deepest caring, positive thoughts,healing wishes for Tom, warm friendship, lots of love, and continued Hope,
Bonni
I Hope that Monday's surgery went well and that Tom is now Home recovering, resting, and regaining strength and energy. My most caring thoughts and very best wishes are with both of you and I am anxiously awaiting an update when your time and schedule allow. In the meantime, please take good care of yourselves and know that you and your family are held very close in my heart.
With special hugs, deepest caring, positive thoughts,healing wishes for Tom, warm friendship, lots of love, and continued Hope,
Bonni
Re: Tom from Pennsylvania - Dx 2002
Hi Everyone,
On Monday the 25th Tom had surgery to remove 30cm of his small intestine. 10 of which they was Sarcoma and they said 15 was concerning so they took it. All told they took 30cm. The surgeon looked around thoroughly and saw nothing else. Tom had this done by Dr. Choudrey at upmc Hillman Cancer Institute. A cat scan and mri were done on the brain. The ct showed a 1 x 1.5 mass involving skull and scalp. We do not have results from the mri but we know we have reason to be very concerned as they want us to follow up with Dr. Tawbi a sarcoma specialist at Hillman and the oncologist covering in the hospital already mentioned chemo. As you can imagine we are terrified. I am to call Tuesday to set something up. We are still waiting for pathology. The lump on his head is at the very top of his head between front and center. Thoughts?
On Monday the 25th Tom had surgery to remove 30cm of his small intestine. 10 of which they was Sarcoma and they said 15 was concerning so they took it. All told they took 30cm. The surgeon looked around thoroughly and saw nothing else. Tom had this done by Dr. Choudrey at upmc Hillman Cancer Institute. A cat scan and mri were done on the brain. The ct showed a 1 x 1.5 mass involving skull and scalp. We do not have results from the mri but we know we have reason to be very concerned as they want us to follow up with Dr. Tawbi a sarcoma specialist at Hillman and the oncologist covering in the hospital already mentioned chemo. As you can imagine we are terrified. I am to call Tuesday to set something up. We are still waiting for pathology. The lump on his head is at the very top of his head between front and center. Thoughts?
Re: Tom from Pennsylvania - Dx 2002
Hi Kathy and Tom
I hope you both are doing well and able to get some much needed rest.
The 1 x 1.5 mass involving skull- I assume that it is in centimeters?
Between the outer skin and skull or under skull to brain ?
The following is an article called "brain tumors and symptoms"
It also goes into some detail of how in general the tumors can be treated as it really depends on where they are located to the risks?
Lynette and George have a wealth of info on their personal writings
PM Lynette and I know she will respond
Also go to the search section and enter in brain tumors
Anyway I sure hope your wrong about feeling that there is bad news on the MRI results
Write when you can
Much love
Debbie
The article is presented thru Cedar Hills Sinai medical campus-
It appears that neurosurgery is their speciality ?
Maybe they have seen ASPS
LOCATIONS:
Medical Campus
Cedars-Sinai Medical Group
150 Robertson Building
150 North Robertson Boulevard, Suite 110
Beverly Hills, CA 90211
La Cienega Center
99 North La Cienega Boulevard
Beverly Hills, CA 90211
250 North Robertson Boulevard
250 North Robertson Boulevard
Beverly Hills, CA 90211
Wilshire LeDoux Medical Plaza
8536 Wilshire Boulevard
Beverly Hills, CA 90211
The link:
http://www.braintumortreatment.com/Brai ... ptoms.aspx
I hope you both are doing well and able to get some much needed rest.
The 1 x 1.5 mass involving skull- I assume that it is in centimeters?
Between the outer skin and skull or under skull to brain ?
The following is an article called "brain tumors and symptoms"
It also goes into some detail of how in general the tumors can be treated as it really depends on where they are located to the risks?
Lynette and George have a wealth of info on their personal writings
PM Lynette and I know she will respond
Also go to the search section and enter in brain tumors
Anyway I sure hope your wrong about feeling that there is bad news on the MRI results
Write when you can
Much love
Debbie
The article is presented thru Cedar Hills Sinai medical campus-
It appears that neurosurgery is their speciality ?
Maybe they have seen ASPS
LOCATIONS:
Medical Campus
Cedars-Sinai Medical Group
150 Robertson Building
150 North Robertson Boulevard, Suite 110
Beverly Hills, CA 90211
La Cienega Center
99 North La Cienega Boulevard
Beverly Hills, CA 90211
250 North Robertson Boulevard
250 North Robertson Boulevard
Beverly Hills, CA 90211
Wilshire LeDoux Medical Plaza
8536 Wilshire Boulevard
Beverly Hills, CA 90211
The link:
http://www.braintumortreatment.com/Brai ... ptoms.aspx
Debbie
Re: Tom from Pennsylvania - Dx 2002
Looks like you have the oldest neurosurgical facility in your neck of the woods, too in Phili 
http://www.pennmedicine.org/health-system/about/
http://www.pennmedicine.org/health-system/about/
Debbie
Re: Tom from Pennsylvania - Dx 2002
Kathy, thanks for an update. It looks like the surgery was a success - small intestine is the longest part of your digestive system - about twenty feet long - and loosing 30 cm is really not a problem! I am glad that Tom is recovering very well, now with the source of bleeding finally found and removed, he is going to feel much better.
Now about the 1 x 1.5 scalp/skull met. You know that we had few people with the met location like that, and if this is a met - I would just go and remove it, Ivan had a craniotomy to remove about the same size brain met and it was easy, and with the location Tom has it should be even easier, it is good that it is found when the size is still very small, they will repair the skull (cranioplasty) with something probably titanium part and it will not be visible at all...Alternatively, proton radiotherapy might be used for the surface located metastasis
http://www.floridaproton.org/cancers-treated/sarcoma
but really, it might happen to be just resectable at the size like this, you can start consulting the proper surgeons, do not loose the time - ask the radiologist that did the radiosurgery at Tom's brain mets before to give him a referral.
I found an article for you to read - note the free full text avail.
http://www.ncbi.nlm.nih.gov/pubmed/22993680
and another one - the sarcoma is different - LMS - the similarity is that it is also often slower growing sarcoma:
Metastatic leiomyosarcoma of the skull--case report.
http://www.ncbi.nlm.nih.gov/pubmed/7516048
Now about the 1 x 1.5 scalp/skull met. You know that we had few people with the met location like that, and if this is a met - I would just go and remove it, Ivan had a craniotomy to remove about the same size brain met and it was easy, and with the location Tom has it should be even easier, it is good that it is found when the size is still very small, they will repair the skull (cranioplasty) with something probably titanium part and it will not be visible at all...Alternatively, proton radiotherapy might be used for the surface located metastasis
http://www.floridaproton.org/cancers-treated/sarcoma
but really, it might happen to be just resectable at the size like this, you can start consulting the proper surgeons, do not loose the time - ask the radiologist that did the radiosurgery at Tom's brain mets before to give him a referral.
I found an article for you to read - note the free full text avail.
http://www.ncbi.nlm.nih.gov/pubmed/22993680
and another one - the sarcoma is different - LMS - the similarity is that it is also often slower growing sarcoma:
Metastatic leiomyosarcoma of the skull--case report.
http://www.ncbi.nlm.nih.gov/pubmed/7516048
Olga
Re: Tom from Pennsylvania - Dx 2002
Hi Kathy,
Thank you for the update. We're very glad that the surgery is very successful and the surroudings are check to be clear. I hope Tom's anemia willgo away very soon with the small intestine mets resection.
I'm sorry to hear about the mass involving skull and scalp. I saw a few people here with scalp met which was not diagnosed as ASPS at the beginning, but the pathology report after the resection all reveal ASPS. However, I truely hope it's not ASPS and the brain MRI is clear.
Wish Tom a quick recovery,
Lynette
Thank you for the update. We're very glad that the surgery is very successful and the surroudings are check to be clear. I hope Tom's anemia willgo away very soon with the small intestine mets resection.
I'm sorry to hear about the mass involving skull and scalp. I saw a few people here with scalp met which was not diagnosed as ASPS at the beginning, but the pathology report after the resection all reveal ASPS. However, I truely hope it's not ASPS and the brain MRI is clear.
Wish Tom a quick recovery,
Lynette
Re: Tom from Pennsylvania - Dx 2002
Good morning Kathy and Tom and family
How is Tom feeling today ?
How long is he suppose to be to resume to lifting and more solid diet?
I tried my suggestion for searching the forum on brain tumors but failed. I am sure OP(operator error)
So I am linking a discussion and post that has Olga's suggestion and links in it. There is also a discussion link to Connie and Kevin's post to refer to an earlier discussion . Granted they were at the time experiencing multiple tumors in the brain.
Any way. Click on it and I am sure it will make sense
Was Toms surgery performed by a laparoscopic procedure or was it more a major incision ?
I agree with Olga to be proactive in knowing of a good neurosurgeon in advance
Just in case needed.
Also consider just surgery or ablation , if that's what looks to be the answer over chemo etc.
Much love
Debbie
http://www.cureasps.org/forum/viewtopic.php?f=8&t=872
How is Tom feeling today ?
How long is he suppose to be to resume to lifting and more solid diet?
I tried my suggestion for searching the forum on brain tumors but failed. I am sure OP(operator error)
So I am linking a discussion and post that has Olga's suggestion and links in it. There is also a discussion link to Connie and Kevin's post to refer to an earlier discussion . Granted they were at the time experiencing multiple tumors in the brain.
Any way. Click on it and I am sure it will make sense
Was Toms surgery performed by a laparoscopic procedure or was it more a major incision ?
I agree with Olga to be proactive in knowing of a good neurosurgeon in advance
Just in case needed.
Also consider just surgery or ablation , if that's what looks to be the answer over chemo etc.
Much love
Debbie
http://www.cureasps.org/forum/viewtopic.php?f=8&t=872
Last edited by D.ap on Mon Sep 01, 2014 11:32 am, edited 2 times in total.
Debbie
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tom from Pennsylvania - Dx 2002
Dear Kathy,
Thank you for your thoughtful update in the midst of all that you and Tom are going through right now. I am grateful that the surgeon was able to successfully remove Tom's intestinal tumor and I Hope that Tom's bleeding is now resolved and he is recovering well from the surgery. Was the tumor encapsulated and did the pathology confirm that it is an ASPS met? I am so very sorry that the brain CT showed a concerning mass between his skull and scalp which may be an ASPS met, which unfortunately has also been experienced by a couple of other ASPS patients who I am personally familiar with. As Olga said, the lesion sounds to be relatively small and will Hopefully be able to be successfully surgically removed which I personally feel is the best treatment option if it is possible. I will be anxiously awaiting the results of the brain MRI and holding very tight to Hope that it is clear. My most special thoughts will be with Tom and you during the coming days, and I am sending my very best wishes that if it is determined that the concerning skull mass is unfortunately ASPS, that it can be quickly and successfully removed or treated. I know that you are very frightened right now, but it appears that there are thankfully viable treatment options and it sounds like the doctors are being very proactive in moving quickly forward with addressing the situation and concerns. Please know that Tom and you are not alone and that you both have the special caring and support of those of us on this Board to help strengthen you.
Holding Tom and you very close in my heart and most caring thoughts and reaching out to share special hugs, deepest caring, healing wishes for Tom, warm friendship, much love, and continued Hope,
Bonni
Thank you for your thoughtful update in the midst of all that you and Tom are going through right now. I am grateful that the surgeon was able to successfully remove Tom's intestinal tumor and I Hope that Tom's bleeding is now resolved and he is recovering well from the surgery. Was the tumor encapsulated and did the pathology confirm that it is an ASPS met? I am so very sorry that the brain CT showed a concerning mass between his skull and scalp which may be an ASPS met, which unfortunately has also been experienced by a couple of other ASPS patients who I am personally familiar with. As Olga said, the lesion sounds to be relatively small and will Hopefully be able to be successfully surgically removed which I personally feel is the best treatment option if it is possible. I will be anxiously awaiting the results of the brain MRI and holding very tight to Hope that it is clear. My most special thoughts will be with Tom and you during the coming days, and I am sending my very best wishes that if it is determined that the concerning skull mass is unfortunately ASPS, that it can be quickly and successfully removed or treated. I know that you are very frightened right now, but it appears that there are thankfully viable treatment options and it sounds like the doctors are being very proactive in moving quickly forward with addressing the situation and concerns. Please know that Tom and you are not alone and that you both have the special caring and support of those of us on this Board to help strengthen you.
Holding Tom and you very close in my heart and most caring thoughts and reaching out to share special hugs, deepest caring, healing wishes for Tom, warm friendship, much love, and continued Hope,
Bonni
Re: Tom from Pennsylvania - Dx 2002
Hello Everyone,
I want to start by thanking you all for sharing your stories and knowledge. We would not be where we are today without the advice we have received on this forum. Tom has had a very busy few months but for the most part he is doing really well.
In August he had about 30cm of his small intestine removed. It was indeed Sarcoma. The surgeon feels everything else he saw looked good and he was able to get a nice clean resection. The week before surgery Tom found a lump on the top of his head. Further testing in the hospital revealed another mass. It was involving brain, scull and scalp and was about 1.5 cm in size. We consulted with several neurosurgeons at UPMC in Pittsburgh and they all agreed that if they did traditional surgery, they would almost definitely leave cells behind. They opted to do gamma knife on it. This was done two weeks ago. The plan is to get all of his scans done again the first week of December to see how things look.
Until that time, we are trying to get things back to normal for the children. Tom is back to work and school and fall sports are in full swing. Other than fatigue (not as bad as it was) and some intense leg pain (due to the tumor on the l-4 being treated again, swelling = more pain, hopefully temporary), Tom continues to live a normal life (if it ever can be normal). He inspires me everyday, as do all of you.
I know we would be lost without you.
Kathy
I want to start by thanking you all for sharing your stories and knowledge. We would not be where we are today without the advice we have received on this forum. Tom has had a very busy few months but for the most part he is doing really well.
In August he had about 30cm of his small intestine removed. It was indeed Sarcoma. The surgeon feels everything else he saw looked good and he was able to get a nice clean resection. The week before surgery Tom found a lump on the top of his head. Further testing in the hospital revealed another mass. It was involving brain, scull and scalp and was about 1.5 cm in size. We consulted with several neurosurgeons at UPMC in Pittsburgh and they all agreed that if they did traditional surgery, they would almost definitely leave cells behind. They opted to do gamma knife on it. This was done two weeks ago. The plan is to get all of his scans done again the first week of December to see how things look.
Until that time, we are trying to get things back to normal for the children. Tom is back to work and school and fall sports are in full swing. Other than fatigue (not as bad as it was) and some intense leg pain (due to the tumor on the l-4 being treated again, swelling = more pain, hopefully temporary), Tom continues to live a normal life (if it ever can be normal). He inspires me everyday, as do all of you.
I know we would be lost without you.
Kathy
Re: Tom from Pennsylvania - Dx 2002
Hi Kathy and Tom
Such great news you all must be so relieved. I can only imagine . Keep an eye on the incision!
Please keep us updated On Toms progress and your kids progress. Whether PM or whatever method
With the gamma method. What are the follow up methods to look for a successful treatment other than scans? Swelling etc?
Much love AND faith
Debbie
Such great news you all must be so relieved. I can only imagine . Keep an eye on the incision!
Please keep us updated On Toms progress and your kids progress. Whether PM or whatever method
With the gamma method. What are the follow up methods to look for a successful treatment other than scans? Swelling etc?
Much love AND faith
Debbie
Debbie
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tom from Pennsylvania - Dx 2002
Dear Kathy,
I am so very sorry for all that Tom, you, and your family have been through the past couple of months, but am deeply grateful that the abdominal mets were able to be successfully resected and that the brain/skull/scalp met has now been Gamma Knifed which will Hopefully begin to shrink and ultimately completely destroy the tumor. Based on our experience with Brittany's several Gamma Knife procedures, it takes time for the treated tumor to shrink and completely disappear and it can even appear larger on the initial post Gamma Knife scans from the Gamma Knife caused swelling so don't get discouraged if it doesn't show an immediate response. Has Tom developed any post Gamma Knife brain swelling, and if so, has he been prescribed steroids to try to reduce it and to prevent/alleviate the brain swelling associated headaches/nausea/vomiting?
In view of the diagnosis of Tom's disease progression with abdominal and brain mets, are any plans being made for Tom to begin some type of systemic treatment to try to stabilize the progression of his disease?
Tom and you truly are an inspiration in the way that you continue to pro-actively fight his disease while trying to maintain a sense of normalcy for your family and with work despite all of the pain and suffering that Tom courageously endures and the great heartache and worry that I know you are going through.
Please give Tom and yourself gentle hugs from me dear Kathy, take care of yourself while caring for Tom and your family, know that all of you are being held very close in my heart and most caring thoughts, and keep in touch with the Board as you are able.
Heart to heart with deepest caring, healing wishes for Tom, positive thoughts, love, and continued Hope,
Bonni
I am so very sorry for all that Tom, you, and your family have been through the past couple of months, but am deeply grateful that the abdominal mets were able to be successfully resected and that the brain/skull/scalp met has now been Gamma Knifed which will Hopefully begin to shrink and ultimately completely destroy the tumor. Based on our experience with Brittany's several Gamma Knife procedures, it takes time for the treated tumor to shrink and completely disappear and it can even appear larger on the initial post Gamma Knife scans from the Gamma Knife caused swelling so don't get discouraged if it doesn't show an immediate response. Has Tom developed any post Gamma Knife brain swelling, and if so, has he been prescribed steroids to try to reduce it and to prevent/alleviate the brain swelling associated headaches/nausea/vomiting?
In view of the diagnosis of Tom's disease progression with abdominal and brain mets, are any plans being made for Tom to begin some type of systemic treatment to try to stabilize the progression of his disease?
Tom and you truly are an inspiration in the way that you continue to pro-actively fight his disease while trying to maintain a sense of normalcy for your family and with work despite all of the pain and suffering that Tom courageously endures and the great heartache and worry that I know you are going through.
Please give Tom and yourself gentle hugs from me dear Kathy, take care of yourself while caring for Tom and your family, know that all of you are being held very close in my heart and most caring thoughts, and keep in touch with the Board as you are able.
Heart to heart with deepest caring, healing wishes for Tom, positive thoughts, love, and continued Hope,
Bonni