Rheza Christian from Indonesia - Dx 2010 - RIP 13/09/2011

[Bonni Hess]

Dear Rheza,
Your plan sounds good, but I am not a doctor, and the advice that I offer is only my personal opinion based on nine and half years of experience with Brittany's ASPS and extensive research and following of other ASPS patient's anecdotal experiences. Because it has been my experience that ASPS brain mets can grow very rapidly, I think that your brain met needs to be your first and highest priority. It is concerning to me that the brain met grew so large before it was diagnosed, and I am wondering if it is because your oncologist in Indonesia had (inexcusably) neglected to do regular brain MRI's which are critically important given the nature of this disease to metastasize to the brain. If the brain tumor can be surgically removed, you will need to discontinue the Sutent for a specified amount of time ( probably at least two weeks) prior to surgery to prevent brain hemorrage during the surgery. If the tumor is not resectable because of its location in the brain, and radiosurgery is not a treatment option because of the size of the tumor, then it may be best to remain on the Sutent until your next scan is done to determine if the Sutent is shrinking the tumor. My continued best wishes are with you for a very successful response to the Sutent with stabilization of your disease and shrinkage of all of your tumors. Please take care Rheza, and continue to update the board on your treatment plans and results as your time and the situation allow.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Rheza]

Thanks Bonni....
Tomorrow i will meet my oncologist and going to request brain and limb MRI.

will post the board as soon as i get the result.. hopefully the brain met shrink.

Thanks for the concern..

[Olga]

What type of scan did you have in Singapore? A CT? They might need to have it to compare to figure out if the brain met shrunk on a resumed Sutent.

[Rheza]

Im going to do leg and humerus mri with contrast.. then brain ct and lung ct.
The lung ct is is needed for anaesthetic purpose the doctor said.

I was wondering, can sutent shrink my brain met? If yes, is it possible my brain met shrink until its operable with gamma knife?

Thanks for the concern,
Rheza Christian

[Bonni Hess]

Dear Rheza,
I am glad that you have been able to schedule the scans, and Hopefully these will be done as soon as possible, but you need to insist that a brain MRI be done rather than a brain CT because a brain CT is inadequate to diagnose any small brain mets if you have any. If there are any small brain mets present that are too small to be seen by the CT scan , they may grow too large to be successfully resected or treated by radiosurgery as has already unfortunately happened with your large brain met. We heartbreakingly had this experience with Brittany seven years ago when we requested a brain MRI and her then oncologist told us that a brain CT would be adequate. The brain CT was NOT adequate and it tragically missed two small brain mets that could have been successfully treated with Gamma Knife at that time. A year later when Brittany started experiencing symptomatic headaches and we demanded a brain MRI, the brain mets had grown so large that the Gamma Knife treatment was unsuccessful. After the failed Gamma Knife procedure and five months of Brittany going through Hell with increasing brain swelling which caused excruciating headaches, severe vomiting, and seizures, Brittany had to have the tumors surgically removed and she devastatingly lost her peripheral vision. All of this pain, suffering, and partial vision loss could have been avoided if the brain MRI would have been done so that the brain mets were diagnosed at a smaller size. I am not telling you this to frighten you Rheza, but just to emphasize to you and others who are reading this entry how critically important and essential it is with ASPS to have regular brain MRI's done at least once a year if no brain mets have been diagnosed yet, and every three months if you have a history of previous ASPS brain mets. Regarding your question about the possibility of Sutent shrinking your brain met so that it can be Gamma Knifed, I would think that is a possibility but it is certainly something which you will need to discuss with your radiation oncologist. Thank you for your continued updates. Once again, I strongly urge you to schedule a brain MRI instead of the brain CT. I will be anxiously awaiting your update on the results of your scans and your next treatment plans, and holding you very close in my heart and most caring thoughts.
Take care Rheza.
With deepest caring, healing wishes, and continued Hope,
Bonni

[Rheza]

Dear Olga, I'm sorry I didn't read your post. I had ct scan back in Singapore.

Currently I'm suffering because of the sutent's side effect. My mouth is very painful that I barely able to eat. Should I break sutent first? If yes, how long? Ive been taking sutent 37.5 mg without break (just as what the Singapore oncologist suggested.)

[Ivan]

Dear Olga, I'm sorry I didn't read your post. I had ct scan back in Singapore.

Currently I'm suffering because of the sutent's side effect. My mouth is very painful that I barely able to eat. Should I break sutent first? If yes, how long? Ive been taking sutent 37.5 mg without break (just as what the Singapore oncologist suggested.)

Have you spoken with the doctors to see if you can get some prescription to alleviate the side effects?

[Olga]

Rheza, may be you should talk to the doctor about changing to a smaller dose but still non stop? Also I hope that people can share their ways to deal with the mouth sores - it is a very common side effect of the TKI inhibitors like cediranib and sunitinib. When are your scans? You should drink protein shake drinks that the sportsmen use in the meantime with the good nutrition content or eat the baby food...

[jcs2007]

Rheza,
Sorry to hear of your side effects but talk to your doctor about
a compound pharmacy making you a mouth rinse that can
help with mouth sores(atleast some temp releif so you can eat
or drink the protein shakes) Amanda R provided an ingredient
list for the prescription rinse previously but not sure where it
is on the board? Biotene can be bought over the counter but not as effective.
best wishes,
cindy stokes

[Rheza]

Ivan - yes I've consult with my doctor and she prescribed a mouth rinse and some medicine.
Olga - I've consult with my oncologist and he recommended me to take a short break. Then continue with 25.5 mg nonstop.
Cindy - thanks Cindy for the input, I asked my doctor for mouth rinse and so far its good.

Currently I taking sutent break, the mouth is better and I started to eat rice again. It's been 4 days. Tomorrow I will start sutent on lower dose nonstop. Hopefully 25.5 mg can control the tumor. Is it ok? Or I still have to take 37.5 mg?

[Amanda]

Hello Rheza
I have not beeen posting allot but have been reading and watching!
I am so glad you are active now in your treatments and fighting and feeling better today
I hope that this medicine reduction will make this easier for you. But mainly i wanted to give you a
HUGE HUG!
Be strong and keep up the fight <3

[skyflower]

Hi Rheza, Lucio is on Sutent also and also playing around with his dosings. His doctor confirmed that when you are not taking medicine, the tumor has a chance to grow back. So if you were to take scans of every day you are on Sutent, you would probably see shrinkage or stability, and then when you are not taking it for a couple days, there would be slight growth. The dosing schedule is a balance between side effects and how well the drug is working against the tumor. The only way to find out if a lower dosing option is working for you is to have a scan done before and after. If you aren't comfortable with completely lowering it to 25mg, then you can talk to your doctor about alternating between 25mg and 37.5mg (one day 25mg next day 37.5mg) and see how this works for you as well. ***Note to people not on Sutent that are reading this- This is because Sutent only comes in 12.5 and 25mg pills, and this is a way of having averaging an in-between dose.***
note- for Lucio, doctor recommended him to try 25mg and then at the next scan in 3 months if there is shrinkage or growth to decide about going back to 37.5 or staying on 25. But 3 months is a long time if you have active growth, so maybe presenting alternate solutions to your doctor would help with a decision, or maybe waiting until shortly before scan to try a new dose schedule.

[Arch]

Hi Rheza,

My husband is also on 37.5mg sutent(daily without breaks) and this dosage is harsh on the body. He was totally tired by the end of 4 weeks, his doctor didn't want to alter the dose already. Even if you find it difficult to eat,make sure you don't reduce your intake. You could try some nutritious drinks or something soft, pureed if required.

Take care.

Arch

[Rheza]

Hi all.. would like to ask the board opinions. Im currently on 37.5 / 25 sutent just what like you guys suggested. And I still have the side effect.

So I was thinking I want to take efficient break. What I meant is, I wanted to do surgery.. while taking a 2 weeks break before the surgery, I can recover from this side effect.. is it a good idea?

If yes, it's either leg amputation or brain met resection. Which one is the best?

If I do leg amputation, in 3 months I might be able to walk again using prosthesis leg. And it remove my main tumor.. I read removing main tumor will slow the spread..

Thanks in advance dearest board Happy Valentine!


Nb:
I'm not a native English speaker, so please pardon my English. Many thanks in advance.

[Bonni Hess]

Happy Valentine's Day to you dear Rheza
Since you need to be off of the Sutent for two weeks prior to surgery and for about two weeks following surgery it should be a good time to take a break and get some relief from the medication side effects that you have been suffering. Regarding which surgery you should have first, this is something which you will need to discuss with your oncologist. Have you had your brain MRI yet, and if so have you found out what the size and location of the brain tumor is? This is critically important information for you to have in making your treatment decision. I personally think that if the brain tumor is located in an area where it can be successfully surgically removed, or if it isn't resectable but is small enough (less than 2 Cm.) to be treated with radiosurgery like Gamma Knife, it should be your first priority to prevent it from growing any larger and becoming unresectable or too large to successfully respond to radiosurgery. Brain surgery, as frightening as it sounds, is actually a fairly easy and well tolerated procedure with a more rapid recovery than the amputation will be, so once you have recovered from the brain procedure which should be fairly quickly, then you will be able to move forward with the leg surgery soon after. Brittany has said that her brain surgeries were the easiest out of any of the many surgeries that she has undergone. My continued most caring thoughts and best wishes are with you Rheza, and I will be anxiously awaiting your next update regarding the outcome of your discussion with your oncologist and surgeon, and your treatment decision and plans. Take care.
With special caring, healing wishes, and continued Hope,
Bonni