Rheza - I would advocate the brain met resection as this one if a life threatening met. Assuming it is located in a well accesible location and can be resected of course - what did the doctor say re. MRI result, did it grow, can they do the surgery?
Then the leg. Can you arrange to have both the surgeries in these two weeks that you are planning to be off Sutent? As I remember the requirement was about 3 weeks off Sutent or any TKI class drugs (cediranib as well) before of the any major surgery, can anyone comment who had to go off these drugs to have the surgery?
Rheza Christian from Indonesia - Dx 2010 - RIP 13/09/2011
Re: Rheza updates
Olga
Re: Rheza updates
Thanks for the reply bonni and olga.. the scan is not out yet. Hopefully its resectable.
If im going to do both surgery, is it suppose to be at the same time?
If im going to do both surgery, is it suppose to be at the same time?
Re: Rheza updates
Lets wait for the scan results now. Then discuss. I know that in your head you try to figure out all the "If - than" but really until we know the result it is just a general discussion.
In general, brain met resection and leg resection is not done at once. It takes 2 different surgeons and 2 different teams to do these two very different types of the surgeries.
In general, brain met resection and leg resection is not done at once. It takes 2 different surgeons and 2 different teams to do these two very different types of the surgeries.
Olga
Re: Rheza updates
I'll get the result latest by tomorrow.. will post the board the result and upload the scan if possible..
Btw I'm curious. What diet I suppose to do? People are saying that I shouldn't eat meats, but when I ask doctors, they said it's ok. The doctor only ask me not to eat star fruit, grape fruit l.
Btw I'm curious. What diet I suppose to do? People are saying that I shouldn't eat meats, but when I ask doctors, they said it's ok. The doctor only ask me not to eat star fruit, grape fruit l.
Re: Rheza updates
The scan is out.. btw when i was going for MRI it happened that my city don't have the technology. So I did ct scan instead.
The result says that my lung is getting worse.. so do my calf. But both of humerus shrink by a lot.. about the brain, the doctor here said it's an abcess not tumor... the abcess is caused by av-shunt in my calf.
If i see the scan.. the one in the brain does look different.. its big but not white in color.. its dark...
What do you guys think?
Nb:
I'm not a native English speaker, so please pardon my English. Many thanks in advance.
The result says that my lung is getting worse.. so do my calf. But both of humerus shrink by a lot.. about the brain, the doctor here said it's an abcess not tumor... the abcess is caused by av-shunt in my calf.
If i see the scan.. the one in the brain does look different.. its big but not white in color.. its dark...
What do you guys think?
Nb:
I'm not a native English speaker, so please pardon my English. Many thanks in advance.
Re: Rheza updates
Rheza, it is really hard to say what is really going on there. As I understand, the doctor suspect that you had a stroke caused by the blood cloth caused by the IV shunt in your leg that traveled via the blood stream to your brain and blocked the artery there (do you have anything in your leg?) - and we here have no means to know if this is a brain met or a stroke although when it is the sudden stroke versus slowly growing brain met you have other sudden onset symptoms like may be the opposite half side paralysis or difficulty speaking etc. If he is right and this area in the brain was caused by the blood cloth from the primary tumor, then looks like we were right advocating removal of the bulky primary tumors as soon as possible as they are a danger to a patient life by themselves, not to say about the constant pain and low quality of life from having them.
What is the situation in the lungs, how bad is it - what is the biggest size of any met you have and how many are there? Or they do not tell?
What is the situation in the lungs, how bad is it - what is the biggest size of any met you have and how many are there? Or they do not tell?
Olga
Re: Rheza updates
The lung biggest met is
-36 x 30 left lung
-40 x 30 right lung..
I suspect its not a tumor because:
- i never had any symptoms since i had my first stroke maybe because i consume sutent and sutent always shrink and calm the main met in my right calf.
- i dont experience paralisis or headache although the scan size says it's size is pretty large. (6x4x4) cm
- my right handside of the head's nerve is visibly twitching, while the left one doesnt. (The abcess is in the right handside of the brain)
- usually ct scan with contrast shows met in bright white color, this one is dark. Its visible in the scan because it has a thin white wall, but inside its dark..
- i attach pic of my right tumor calf which you will see that the av shunt there is pretty terrible.
http://www.mediafire.com/?1ta0b85cc44usa2
http://www.mediafire.com/?fawbu31tbxq4mj0
-36 x 30 left lung
-40 x 30 right lung..
I suspect its not a tumor because:
- i never had any symptoms since i had my first stroke maybe because i consume sutent and sutent always shrink and calm the main met in my right calf.
- i dont experience paralisis or headache although the scan size says it's size is pretty large. (6x4x4) cm
- my right handside of the head's nerve is visibly twitching, while the left one doesnt. (The abcess is in the right handside of the brain)
- usually ct scan with contrast shows met in bright white color, this one is dark. Its visible in the scan because it has a thin white wall, but inside its dark..
- i attach pic of my right tumor calf which you will see that the av shunt there is pretty terrible.
http://www.mediafire.com/?1ta0b85cc44usa2
http://www.mediafire.com/?fawbu31tbxq4mj0
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Rheza updates
Dear Rheza,
I am very glad and relieved that the brain scan indicates that you apparently don't have a brain met. I do wish that you could have a brain MRI since the MRI is more definitive, but at least the CT shows that the area of concern is dark instead of white which certainly seems to indicate that it is not a tumor, or if it is/was one, it has become necrotic which is what occurs when brain mets are dead. Hopefully there is an easy treatment to try to resolve the large brain abcess so that you won't experience anymore strokes, and so that it doesn't continue to get larger and create other neurological problems or deficits. Was a comparison made with the previous brain CT that you had in Singapore to determine if the abcess has increased in size between the time of the two scans? If the brain met has been definitely ruled out, will you now be discontinuing your Sutent so that you can have the required two weeks off of the medication before proceeding with your leg surgery? Also, since the tumors in your humerous are shrinking, but not the one in your calf, will you still need to have an amputation of your leg, or is it possible to just resect the tumor in the calf?
Regarding your questions about diet, I am unfamilair with any restrictions about eating meat when you are on an anti-angiogenic drug like Sutent, but Brittany was told to definitely not eat grapefruit, kiwi, and pomegranate as well as to not drink red wine and green tea extract because all of these things can possibly interfere with the effectiveness of the medication. I will be anxious to hear what the next step in your treatment plans are, and am Hopeful that you will be able to move forward with your leg surgery as soon as possible to provide you with pain relief and to help you regain mobility. In the meantime, please take care Rheza and know that my very best wishes and most caring thoughts are with you,
With deepest caring, healing wishes, and continued Hope,
Bonni
I am very glad and relieved that the brain scan indicates that you apparently don't have a brain met. I do wish that you could have a brain MRI since the MRI is more definitive, but at least the CT shows that the area of concern is dark instead of white which certainly seems to indicate that it is not a tumor, or if it is/was one, it has become necrotic which is what occurs when brain mets are dead. Hopefully there is an easy treatment to try to resolve the large brain abcess so that you won't experience anymore strokes, and so that it doesn't continue to get larger and create other neurological problems or deficits. Was a comparison made with the previous brain CT that you had in Singapore to determine if the abcess has increased in size between the time of the two scans? If the brain met has been definitely ruled out, will you now be discontinuing your Sutent so that you can have the required two weeks off of the medication before proceeding with your leg surgery? Also, since the tumors in your humerous are shrinking, but not the one in your calf, will you still need to have an amputation of your leg, or is it possible to just resect the tumor in the calf?
Regarding your questions about diet, I am unfamilair with any restrictions about eating meat when you are on an anti-angiogenic drug like Sutent, but Brittany was told to definitely not eat grapefruit, kiwi, and pomegranate as well as to not drink red wine and green tea extract because all of these things can possibly interfere with the effectiveness of the medication. I will be anxious to hear what the next step in your treatment plans are, and am Hopeful that you will be able to move forward with your leg surgery as soon as possible to provide you with pain relief and to help you regain mobility. In the meantime, please take care Rheza and know that my very best wishes and most caring thoughts are with you,
With deepest caring, healing wishes, and continued Hope,
Bonni
Last edited by Bonni Hess on Fri Feb 18, 2011 5:43 pm, edited 1 time in total.
Re: Rheza updates
Hi Bonni, have you seen the pic i attached? The blood vena and arteri is in a very bad condition of av shunt.. Its not possible to only resect the met especially the bone is badly destructed.. I think i will do amputation as it remove the main tumor, the av shunt and the destructed bone.. Im so ready for amputation as using prosthesis leg seems good... What do you think?
Re: Rheza updates
Rheza - if the bone is destructed for a long time and everything is a mess there, I would remove the leg. I told you already before - there are cases when people really get the great relief from removing the limb that could not be saved anyways. Just use the most experienced surgeon in the area where you live, the one that will try to save the leg but will do the right thing in the end. In will most probably improve your quality of life as you really do not have that leg already and what you have makes your life miserable and damages you body further. You are off the sutent now, right?
Further question:
Is there any way to do a brain MRI in the area where you live?
Further question:
Is there any way to do a brain MRI in the area where you live?
Olga
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Rheza updates
Hello again Rheza,
I am not a doctor, but from what the scan shows and what you have said regarding the invasion of the tumor and destruction of the bone, if limb salvaging surgery cannot be done it seems that amputation is your best and perhaps your only option. You seem to have a very good and positive attitude about the prospective amputation which will be very important in your recovery and your ability to move forward with your Life. I do think that if your doctors feel that this is the best course of action and you decide to proceed with amputation, that you should schedule and do it as soon as possible once you have discontinued Sutent for the required amount of time prior to the surgery. Where will the surgery be done, and is the surgeon an oncology surgeon with experience with Sarcoma? Do you plan to resume Sutent once your surgery has been completed and you have recovered for the amount of time specified/required before you begin taking the medication again? Hopefully once your large primary tumor is removed, Sutent or whatever other systemic treatment you pursue will be able to be more effective in stabilizing the progression of your disease and shrinking your other tumors because your body will have a lower tumor burden which should strengthen your immune system and enable it to work with the systemic treatment to better fight the cancer.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
I am not a doctor, but from what the scan shows and what you have said regarding the invasion of the tumor and destruction of the bone, if limb salvaging surgery cannot be done it seems that amputation is your best and perhaps your only option. You seem to have a very good and positive attitude about the prospective amputation which will be very important in your recovery and your ability to move forward with your Life. I do think that if your doctors feel that this is the best course of action and you decide to proceed with amputation, that you should schedule and do it as soon as possible once you have discontinued Sutent for the required amount of time prior to the surgery. Where will the surgery be done, and is the surgeon an oncology surgeon with experience with Sarcoma? Do you plan to resume Sutent once your surgery has been completed and you have recovered for the amount of time specified/required before you begin taking the medication again? Hopefully once your large primary tumor is removed, Sutent or whatever other systemic treatment you pursue will be able to be more effective in stabilizing the progression of your disease and shrinking your other tumors because your body will have a lower tumor burden which should strengthen your immune system and enable it to work with the systemic treatment to better fight the cancer.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Rheza updates
Olga - will do your advice... about the scan i will found more info. Maybe the other hospital has it. Or i go to jakarta which is the capital oh indonesia and only 2 hours away by car
Bonni - i havent consult about the amputation, so still no surgeon.. if sarcoma surgeon needed, i will go jakarta.. about the amputation, im so ready for it. In fact i cant wait to do it. I also will continue sutent after recovery.. maybe in lower dose first..
Btw, how long i have to break on sutent before the amputation? And is it possible to do amputation with local anaesthetic? Because i don't think my lung can handle full anaesthetic
Bonni - i havent consult about the amputation, so still no surgeon.. if sarcoma surgeon needed, i will go jakarta.. about the amputation, im so ready for it. In fact i cant wait to do it. I also will continue sutent after recovery.. maybe in lower dose first..
Btw, how long i have to break on sutent before the amputation? And is it possible to do amputation with local anaesthetic? Because i don't think my lung can handle full anaesthetic
Re: Rheza updates
As I remember it was 2 week min - there has to be an info page that comes with the drug, how long are you off the sunitinib as of now?
Can you check in the meantime if there are any other TKI (tyrosine kinase inhibitors) became avail. in Indonesia - like phazopanib or sorafenib or may be there is a clinical trial with any combination of the cediranib has been opened. You had good response to the sunitinib and may benefit for the new TKI after the surgery instead of starting the sunitinib again although I have seen cases when the drug was active again for awhile after the break.
Can you check in the meantime if there are any other TKI (tyrosine kinase inhibitors) became avail. in Indonesia - like phazopanib or sorafenib or may be there is a clinical trial with any combination of the cediranib has been opened. You had good response to the sunitinib and may benefit for the new TKI after the surgery instead of starting the sunitinib again although I have seen cases when the drug was active again for awhile after the break.
Olga
Re: Rheza updates
Today is my 6th day of sutent.. will arrange the surgery 1-2 weeks ahead.
As for TKI there's sorafenib here.. nevaxar by bayer if im not mistaken... will find info about it..
Olga, what about the anaesthetic? Can i go local anaesthetic?
As for TKI there's sorafenib here.. nevaxar by bayer if im not mistaken... will find info about it..
Olga, what about the anaesthetic? Can i go local anaesthetic?
Re: Rheza updates
I do not know about the local anesthesia for the major surgery like an amputation, you should find a very good orthopedic surgeon and talk to him - surgeon is sarcoma patient's best friend:(
We have one member here that was on a Sutent before and she developed resistance to it as well and moved on a sorafenib after, her first update was a sable disease, may be there will be the next one coming soon so you can think about it as well. Are you sure that there is no pazopanib avail. in the area?
We have one member here that was on a Sutent before and she developed resistance to it as well and moved on a sorafenib after, her first update was a sable disease, may be there will be the next one coming soon so you can think about it as well. Are you sure that there is no pazopanib avail. in the area?
Olga