Rheza Christian from Indonesia - Dx 2010 - RIP 13/09/2011
Re: Rheza updates
I just did some browsing, i think we have pazopanib or votrient here.. will check again in the afternoon. Hopefully they have a donation program...
Re: Rheza updates
the scan
- lung
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- head.jpg (49.43 KiB) Viewed 11379 times
Re: Rheza updates
Hey Rheza
You haven't posted any updates for a while. How are you doing?
Ivan
You haven't posted any updates for a while. How are you doing?
Ivan
Re: Rheza updates
Sorry it's been so long since the last time I updated.
After the scan, I ask my doctor for amputation. And after break on sutent for 2 weeks, I had my right leg above knee amputation on 28th of March.
Currently I'm back resting at home and starting sutent 25 mg without break.
The differences between before and after amputation are mostly on overall body condition. I no longer feel cold all the time, less pale and body fells much powerful.
So, what is my next step?
After the scan, I ask my doctor for amputation. And after break on sutent for 2 weeks, I had my right leg above knee amputation on 28th of March.
Currently I'm back resting at home and starting sutent 25 mg without break.
The differences between before and after amputation are mostly on overall body condition. I no longer feel cold all the time, less pale and body fells much powerful.
So, what is my next step?
Re: Rheza updates
You are feeling better at least?Rheza wrote:Sorry it's been so long since the last time I updated.
After the scan, I ask my doctor for amputation. And after break on sutent for 2 weeks, I had my right leg above knee amputation on 28th of March.
Currently I'm back resting at home and starting sutent 25 mg without break.
The differences between before and after amputation are mostly on overall body condition. I no longer feel cold all the time, less pale and body fells much powerful.
So, what is my next step?
Do you continue having a response to sunitinib, and have you had scans since February?
Also I wanted to say that I very much admire your courage and will to fight - keep it up
Re: Rheza updates
Rheza - good to hear from you. It should be easier for the body now as this huge constantly inflamed and rotting wound in your leg is gone now. Are you going to have the prosthetic leg?
What about the brain met, did you have any additional scanning for it and how do you feel it, are you taking any steroids for the brain situation? You could treat it too before you are back on sutent.
What about the brain met, did you have any additional scanning for it and how do you feel it, are you taking any steroids for the brain situation? You could treat it too before you are back on sutent.
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
Dear Rheza,
It was so good to hear from you as I have been so concerned about you. I am so very sorry that this cruel cancer has now taken your leg, but am grateful that the amputation went well, that you are now resting and recovering from the surgery, and that your body is feeling better and regaining strength. Like Ivan, I deeply admire your great courage and your strong will to fight this disease which is so vitally important with this challenging battle. You are an inspirational young man. My continued most caring thoughts and very best wishes are with you as you recover from your surgery, and for a very postiive response and outcome to your renewed Sutent treatment. Hopefully with the large leg tumor having now been removed greatly reducing your body's tumor burden, it will enable the Sutent to be more effective in shrinking your other tumors and stabilizing the progression of your disease. Please take good care of yourself dear Rheza, give yourself a gentle hug from me, and keep this Board updated on your recovery progress and Sutent treatment experience and results as you are able.
With deepest caring, special healing wishes, and continued Hope,
Bonni
It was so good to hear from you as I have been so concerned about you. I am so very sorry that this cruel cancer has now taken your leg, but am grateful that the amputation went well, that you are now resting and recovering from the surgery, and that your body is feeling better and regaining strength. Like Ivan, I deeply admire your great courage and your strong will to fight this disease which is so vitally important with this challenging battle. You are an inspirational young man. My continued most caring thoughts and very best wishes are with you as you recover from your surgery, and for a very postiive response and outcome to your renewed Sutent treatment. Hopefully with the large leg tumor having now been removed greatly reducing your body's tumor burden, it will enable the Sutent to be more effective in shrinking your other tumors and stabilizing the progression of your disease. Please take good care of yourself dear Rheza, give yourself a gentle hug from me, and keep this Board updated on your recovery progress and Sutent treatment experience and results as you are able.
With deepest caring, special healing wishes, and continued Hope,
Bonni
Re: Rheza updates
Wow. Thanks for the support Ivan, Olga, and Bonni! It means a lot for me.
The amputation do make my body feels better by a lot. Before the amputation I always feel cold. Wear thick jacket all the time. Now after the amputation, I'm back to normal. And now after taking 1 week of 25 mg sutent, I feel that I cough less. I hope that it's a sign that now sutent works better on my lung. For sutent, I'm taking 25 mg without break.
As for prosthesis leg, yes I'm going for it about 2-3 months later. The doctor said I must wait until the wound heal. Prosthesis leg is one of the reason why I want the amputation. I was unable to walk before the amputation.
About the brain met, the mass that singapore doctor detected, isn't a met. It's a 4x6 cm abcess on my right brain and my neuro surgeon he can do small operation to sick the brain abcess. But I will still take brain MRI soon.
Thanks for the board attention! Please don't be bored to give me advices.
The amputation do make my body feels better by a lot. Before the amputation I always feel cold. Wear thick jacket all the time. Now after the amputation, I'm back to normal. And now after taking 1 week of 25 mg sutent, I feel that I cough less. I hope that it's a sign that now sutent works better on my lung. For sutent, I'm taking 25 mg without break.
As for prosthesis leg, yes I'm going for it about 2-3 months later. The doctor said I must wait until the wound heal. Prosthesis leg is one of the reason why I want the amputation. I was unable to walk before the amputation.
About the brain met, the mass that singapore doctor detected, isn't a met. It's a 4x6 cm abcess on my right brain and my neuro surgeon he can do small operation to sick the brain abcess. But I will still take brain MRI soon.
Thanks for the board attention! Please don't be bored to give me advices.
- Attachments
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- A day after the amputation.
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- A few days after the amputation.
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Re: Rheza updates
I think that you should try to gain some weight now, do you get protein drinks etc.? May be you will gain some weight spontaneously just because you removed that big tumor as it is highly metabolic. How are you hands, can you use them at all?
Olga
Re: Rheza updates
Man, you are so skinny 
Once you get checked out of the hospital you should go outside and get some suntan as well. I feel it's very important - at least for me - and makes me feel better.
You should probably get rid of the abscess soon, because it will make you feel better too.
1) When was your last lung CT?
2) How are your arms?
Also, have you had any chance to try and locate other drugs like Cediranib, or maybe Crizotinib? Just so that you have something to switch to right away if sutent stops working.
Once you get checked out of the hospital you should go outside and get some suntan as well. I feel it's very important - at least for me - and makes me feel better.You should probably get rid of the abscess soon, because it will make you feel better too.
1) When was your last lung CT?
2) How are your arms?
Also, have you had any chance to try and locate other drugs like Cediranib, or maybe Crizotinib? Just so that you have something to switch to right away if sutent stops working.
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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,
Thank you for sharing these special pictures. It is always so good to be able to put a face to a name when you are communicating with someone who you only know through writing. It looks like you are surrounded by lots of special caring, love, strengthening support, and uplifting smiles from a lot of people
. Are they your family or friends or both? Like Olga and Ivan, I am also concerned about you being so thin, especially since weight loss can be an issue with Sutent and Cediranib as a result of the common side effects of nausea and lack of appetite, so I Hope that you are able to eat, take some nutritional supplements, and gain some weight to help re-gain and then maintain your strength and energy. One of the only things that has worked for Brittany and which is approved by all of her doctors to help stimulate her appetite and reduce nausea to help her maintain her weight is legal medical marijuana. I don't know if it is legally available to you there, but if not, Marinol, which is the pharmaceutical equivalent of marijuana, can also be effective and I think that your doctors should be able to write a prescription for it for you. Do you have any other surgeries or treatment procedures planned for your tumors in your shoulders once you recover from your leg surgery, or are the doctors waiting to see if the Sutent is able to shrink/destroy the tumors? I do think that it will be important to have your brain abcess treated as soon as you have sufficiently recovered from your surgery in order to prevent any more of the stroke type episodes that you previously experienced. I am holding very tight to Hope that the Sutent will stabilize your disease and shrink your shoulder and lung mets, and I will be anxiously awaiting the results of your next scans. In the meantime, please give yourself a gentle hug from me, try to eat as much as you able to try to regain some weight, continue to feel better and stronger each day, keep the Board updated as you are able, and know that my most caring thoughts and very best wishes are with you.
With deepest caring, healing wishes, and continued Hope,
Bonni
Thank you for sharing these special pictures. It is always so good to be able to put a face to a name when you are communicating with someone who you only know through writing. It looks like you are surrounded by lots of special caring, love, strengthening support, and uplifting smiles from a lot of people
. Are they your family or friends or both? Like Olga and Ivan, I am also concerned about you being so thin, especially since weight loss can be an issue with Sutent and Cediranib as a result of the common side effects of nausea and lack of appetite, so I Hope that you are able to eat, take some nutritional supplements, and gain some weight to help re-gain and then maintain your strength and energy. One of the only things that has worked for Brittany and which is approved by all of her doctors to help stimulate her appetite and reduce nausea to help her maintain her weight is legal medical marijuana. I don't know if it is legally available to you there, but if not, Marinol, which is the pharmaceutical equivalent of marijuana, can also be effective and I think that your doctors should be able to write a prescription for it for you. Do you have any other surgeries or treatment procedures planned for your tumors in your shoulders once you recover from your leg surgery, or are the doctors waiting to see if the Sutent is able to shrink/destroy the tumors? I do think that it will be important to have your brain abcess treated as soon as you have sufficiently recovered from your surgery in order to prevent any more of the stroke type episodes that you previously experienced. I am holding very tight to Hope that the Sutent will stabilize your disease and shrink your shoulder and lung mets, and I will be anxiously awaiting the results of your next scans. In the meantime, please give yourself a gentle hug from me, try to eat as much as you able to try to regain some weight, continue to feel better and stronger each day, keep the Board updated as you are able, and know that my most caring thoughts and very best wishes are with you.With deepest caring, healing wishes, and continued Hope,
Bonni
Re: Rheza updates
Bonni, Indonesia has extreme drug laws, so sadly I don't think that option will be available. Perhaps he can order some cookies or something along those lines from here - http://nutritionfortheworld.wetpaint.co ... ngredients - that seems to be legal
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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
Thank you Ivan. It is very hard to understand why addictive strong opiate drugs like oxycodone, oxycontin, fetanyl, and morphine are legal when prescribed by a doctor, but that an herbal remedy like marijuana isn't! Perhaps marinol would still be a possibility since it is a prescription drug.
With special caring thoughts and continued Hope,
Bonni
With special caring thoughts and continued Hope,
Bonni
Re: Rheza from Indonesia - Dx 2010
Rheza, what are you up to?
Re: Rheza from Indonesia - Dx 2010
Hi,
i'm a friend of rheza on facebook and i know that he's active on this board. I would like to ask for help in praying from all of you. He's currently hospitalized at dharmais hospital in jakarta. His MRI result shows there're new mets on the right and left brain side and he's lost some of his eyesight. The doctor said there's nothing he can do about the mets in his brain. The doctor is currently treating his gastric infection (on tuesday he vomitted green blackish liquid) and he has tube inserted through the nose to help get the liquid out. Hopefully he can recover from the infection and be treated back at his hometown where he can be closed to his friends. please pray to give him and his family strength to overcome this. God bless. Thank you.
i'm a friend of rheza on facebook and i know that he's active on this board. I would like to ask for help in praying from all of you. He's currently hospitalized at dharmais hospital in jakarta. His MRI result shows there're new mets on the right and left brain side and he's lost some of his eyesight. The doctor said there's nothing he can do about the mets in his brain. The doctor is currently treating his gastric infection (on tuesday he vomitted green blackish liquid) and he has tube inserted through the nose to help get the liquid out. Hopefully he can recover from the infection and be treated back at his hometown where he can be closed to his friends. please pray to give him and his family strength to overcome this. God bless. Thank you.