Rheza - the bone that is broken now - is it by the tumor? Did they put the cast on?
It looks like Sutent is actually working, the sound that you heard before was from the blood passing trough the tumor and now the blood vessels are damaged by the Sutent, it is a good sign.
Rheza Christian from Indonesia - Dx 2010 - RIP 13/09/2011
Re: Rheza updates
Olga
Re: Rheza updates
Sorry I didn't explain my condition quite well on my previous post.
The bone that I just fractured is my right arm's bone. I was still able to lift my right hand before the incident though some move hurts. The doctor still unsure if it caused by tumor, or me lacking of calcium, or maybe combination of both. The last scan (4th of may) shows that the tumor was 6.5 x 3.5 x 2.5 cm and located at my right humerus proximal.
My left bone was fractured by soft tissue tumor (the one I heard murnur before) exactly like Ivan expected, the tumor is big and I'm unable to move my left arm since 5-6 months ago. The last scan (4th of may) shows that the tumor was 8 x 5.5 x 6 cm and located at my left humerus proximal.
So currently I'm unable to lift both hand. It's quite frustrating because I can't even eat by my self.
What my next move should be? Thanks for always helping me...
The bone that I just fractured is my right arm's bone. I was still able to lift my right hand before the incident though some move hurts. The doctor still unsure if it caused by tumor, or me lacking of calcium, or maybe combination of both. The last scan (4th of may) shows that the tumor was 6.5 x 3.5 x 2.5 cm and located at my right humerus proximal.
My left bone was fractured by soft tissue tumor (the one I heard murnur before) exactly like Ivan expected, the tumor is big and I'm unable to move my left arm since 5-6 months ago. The last scan (4th of may) shows that the tumor was 8 x 5.5 x 6 cm and located at my left humerus proximal.
So currently I'm unable to lift both hand. It's quite frustrating because I can't even eat by my self.
What my next move should be? Thanks for always helping me...
-
Fictional
Re: Rheza updates
Hi Rheza,
Looks like you have an immediate plan with the Sutent. The fractures will probably try to repair itself unless a surgeon says otherwise. Hopefully the Sutent will shrink the tumors.
Looks like you have an immediate plan with the Sutent. The fractures will probably try to repair itself unless a surgeon says otherwise. Hopefully the Sutent will shrink the tumors.
Re: Rheza updates
-'F'- currently I'm on 37.5 mg and going to take 2 weeks break after each cycle. What do you think?
Btw, my doctor suggest me to go for radiotheraphy on both of my shoulders. She said that it won't shrink the tumor but it helps to ease some pain and helps to heal the fractured bone. So I think my next step would be radiotherapy.
Btw, my doctor suggest me to go for radiotheraphy on both of my shoulders. She said that it won't shrink the tumor but it helps to ease some pain and helps to heal the fractured bone. So I think my next step would be radiotherapy.
-
Fictional
Re: Rheza updates
Hi Rheza,
That is the dose our daughter was on and that's the dose that LCMA (LCMA.blogspot.com) has been on for over one year. If the side effects seem too much at some point, you can always talk to your doctor about daily 25 mg (no breaks) - but otherwise, what you're on is the standard way many oncologists choose to start.
Radiotherapy might help with the pain and scar over things to heal.
That is the dose our daughter was on and that's the dose that LCMA (LCMA.blogspot.com) has been on for over one year. If the side effects seem too much at some point, you can always talk to your doctor about daily 25 mg (no breaks) - but otherwise, what you're on is the standard way many oncologists choose to start.
Radiotherapy might help with the pain and scar over things to heal.
Re: Rheza updates
It's been a while since my last update.
I've finish my first cycle of Sutent, and it shrunk the tumors noticeably. Currently I'm on 2 weeks off, and the tumors starts to grow back. Is it normal?
The tumors now are much stiffer but less painful. Going to start my second cycle this Friday.
I'm still on Radio therapy package and so far it helps with the pain.
I've finish my first cycle of Sutent, and it shrunk the tumors noticeably. Currently I'm on 2 weeks off, and the tumors starts to grow back. Is it normal?
The tumors now are much stiffer but less painful. Going to start my second cycle this Friday.
I'm still on Radio therapy package and so far it helps with the pain.
-
Fictional
Re: Rheza updates
Yes, it is normal to do that. The tumors changed noticeably fairly quickly with our daughters - but after 6 months when the tumors were surgically removed, there was only 5% necrosis (at least in our case) - we were surprised the primary wasn't killed off...I think the softness/ hardness / MRI changes are a bit unreliable in terms of predicting tumor cell death. In our case, we like to think it helped the cells become more dormant, but in our case it did not kill the cells. The met inhibitor (ARQ197 was more effective killing tumor cells, but still only affected a small number tumors (it looked as if the fastest growing ones though by cell proliferation rate).
Because of the increased tumor hardness in the 2 weeks off, some doctors recommend daily lower dose Sutent to avoid rebound growth. In our situation we switched from 37.5 mg x 3 wks (? I think) / 2 wks off, to 25 mg every day. It was much better tolerated and this schedule seemed just as effective as the on/off cycle at least in a trial of renal cell CA.
Because of the increased tumor hardness in the 2 weeks off, some doctors recommend daily lower dose Sutent to avoid rebound growth. In our situation we switched from 37.5 mg x 3 wks (? I think) / 2 wks off, to 25 mg every day. It was much better tolerated and this schedule seemed just as effective as the on/off cycle at least in a trial of renal cell CA.
Re: Rheza updates
I am happy to hear that it's working, and that the pain is better! Did they measure how much the tumors shrunk?Rheza wrote:It's been a while since my last update.
I've finish my first cycle of Sutent, and it shrunk the tumors noticeably. Currently I'm on 2 weeks off, and the tumors starts to grow back. Is it normal?
The tumors now are much stiffer but less painful. Going to start my second cycle this Friday.
I'm still on Radio therapy package and so far it helps with the pain.
Do you have a plan to resect them if they shrink enough, or do something of that sort?
Re: Rheza updates
-'F'- Thanx for the info! I might change my dose into 25 mg daily.
-Ivan- I'm still not sure. Is it the best option?
btw, my relatives tells me to drink Tahitian Noni. Will it helps? Does it goes along with Sutent? My other relatives also recommend Ukrain. What about it?
-Ivan- I'm still not sure. Is it the best option?
btw, my relatives tells me to drink Tahitian Noni. Will it helps? Does it goes along with Sutent? My other relatives also recommend Ukrain. What about it?
Re: Rheza updates
Rheza - there is no info about Tahitian Noni or Ukrain in sarcomas, I think they are useless and I would not drink any of these when undergoing any treatment esp. radiation, it can interfere with it.
Re.Surgery - if these tumors shrink well enough to be resected, and you can find a doctor willing to do that - do it.
Re.Surgery - if these tumors shrink well enough to be resected, and you can find a doctor willing to do that - do it.
Olga
Re: Rheza updates
Hi Rheza 
I see you lurking hehe How are you?
I hope that all is well and hope you are posting as i type
I see you lurking hehe How are you?
I hope that all is well and hope you are posting as i type
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Rheza updates
Sorry.. its been quite a long time since the last time i updated. Im doing good by the way! Thanks Amanda for asking.
Im currently still on sutent but changed the dose into 25 mg daily without break now. I find it's easier on the body in terms of side effect..
When i was on 37.5 mg, the tumour on my calf shrunk noticably, but during the 2 weeks break it began to be swollen again. Now im on 25 mg. My tumour calf seems dont shrink. Should i take 37.5 mg on my next cycle?
Despite of no shrinking on my calf, the tumour on humerus keep shrinking and its almost gone. The mets on my lung are shrinking too. The last scan shows that the biggest mets has shrunk from 2.9 cm to 2 cm.
Again sorry for the late update.. God bless!
Im currently still on sutent but changed the dose into 25 mg daily without break now. I find it's easier on the body in terms of side effect..
When i was on 37.5 mg, the tumour on my calf shrunk noticably, but during the 2 weeks break it began to be swollen again. Now im on 25 mg. My tumour calf seems dont shrink. Should i take 37.5 mg on my next cycle?
Despite of no shrinking on my calf, the tumour on humerus keep shrinking and its almost gone. The mets on my lung are shrinking too. The last scan shows that the biggest mets has shrunk from 2.9 cm to 2 cm.
Again sorry for the late update.. God bless!
Re: Rheza updates
Hello Reza
WOW YAY!!! I am so glad you posted and let everyone know and thank you i am smiling huge right now!
When i see posts like this i am happy and it also helps others so much!
WOW YAY!!! I am so glad you posted and let everyone know and thank you i am smiling huge right now!
When i see posts like this i am happy and it also helps others so much!
Rheza wrote:Sorry.. its been quite a long time since the last time i updated. Im doing good by the way! Thanks Amanda for asking.
Im currently still on sutent but changed the dose into 25 mg daily without break now. I find it's easier on the body in terms of side effect..
When i was on 37.5 mg, the tumour on my calf shrunk noticably, but during the 2 weeks break it began to be swollen again. Now im on 25 mg. My tumour calf seems dont shrink. Should i take 37.5 mg on my next cycle?
Despite of no shrinking on my calf, the tumour on humerus keep shrinking and its almost gone. The mets on my lung are shrinking too. The last scan shows that the biggest mets has shrunk from 2.9 cm to 2 cm.
Again sorry for the late update.. God bless!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Rheza updates
It is really good to hear that you are doing better now. I have seen that being on the sutent or other tyrosine kinase inhibitor (TKI) can improve the result of the radiation treatment if given in the same time so may be you ask your doctor re. irradiation of the primary tumor in the leg while on sutent? Was it really hard for you to be on the full dose? Did the fractures heal, can you use you arms now?
Olga
Re: Rheza updates
Rheza, we are all very happy for you
Beware that drugs like sutent usually don't work indefinitely. So, while things have shrunk, it's a very good time to try and get them resected for good! I'm talking about your shoulders and your leg. Have you consulted with the doctors to see if they can get clear margins without damaging your body too much now?
Beware that drugs like sutent usually don't work indefinitely. So, while things have shrunk, it's a very good time to try and get them resected for good! I'm talking about your shoulders and your leg. Have you consulted with the doctors to see if they can get clear margins without damaging your body too much now?