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

[Rheza]

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!

Thanks for the support Amanda! I'm getting better everyday.. ^^

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?

I'm still on 25 mg now. So far my body responds well. The side effect is bearable and life is much enjoyable. About the fracture on both of my humerus, I still unable to use both of my arms but I believe it heals even though by bit, as now I experience less pain and able to sleep longer than usual. I will consult my doctor about radiation while on Sutent. Btw, if I'm taking radiation, do you suggest me taking 37.5 mg instead of 25 mg?

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?

Thank for your support Ivan! - Currently, my doctor sees good result of me taking Sutent that she thinks resection might be unnecessary. I will inform my doctor about this information. Btw, if I'm planning to get my tumors resected, I should stop Sutent for 3 weeks before the surgery am I right?



One more thing to ask, I need forum's suggestion..
Recently, I consulted with a doctor representative from Guang Zhou Modern Hospital (China) http://www.asiancancer.com/ - the doctor I consulted with seems confidence that if I go to the hospital to take the treatment, I will show good result. He himself doesn't know about ASPS, but there's chinese translation for ASPS so I assume the sarcoma specialist there in Guang Zhou should know about ASPS.
The technology there is of course more advance than here in Indonesia, but I'm still unsure.

The technology they might be using are :
- Planting particle that radiates gamma ray
- Direct chemotherapy to the tumor through catheter
- Dendritic Cell Vaccine
- RFA
- Cryosurgery

If somehow my family can support me to go there, should I go?

Sorry for asking so many questions..

[Olga]

Hi Rheza, good to hear from you.
There list of the offered treatment from China are the local treatments for the tumors (except the vaccine that is the systemic treatment but usually you need the tumor tissue to prepare the vaccine and to have a surgery to resect some of the mets).
What mets they are going to treat using these treatments? The ones in the shoulders? Our members have the experience with almost all the types of the treatments that you listed (may be except the implanted seeds irradiation as ASPS is a very radiation resistant disease), we even have one member that had this isolated limb perfusion by the chemotherapy when the chemo is given directly to the vessels feeding the tumor (Jordanne - it was in her leg so they did this procedure before to resect it in attempt to shrink it, to make the surgery easier, and they actually damaged the nerve in that leg).
I think that isolated chemoperfusion can not be done if there are fractures in the bone in this area.
We have an experience with the RFA and cryo, with vaccine too (they are very different and I can not even imagine which type they use there and there is no way to know if it might be of any efficacy). All these modalities have their limitations (RFA and cryo are limited by the size they can completely ablate...). Do you think that these technologies are not avail. in you own country? I personally think that what can be resected should be resected first and then you can reassess the situation. You probably can be on any dose of the sutent for the radiation but I have realized that you already had the radation treatment to these tumors in your shoulders? How big are they now, it is really to bad that the fractures are still there and you can not use the arms. You are correct that sutent has to be stopped before of the surgery in about 3 week, if you are thinking to go for the surgery, you can request the company producer of Sutent for an updated info re. how early before of the surgery it has to be stopped as it might be not that long like we think?

[Rheza]

Hi Olga,

I followed your suggestion so I went to my doctor and told her that I wanted to get my tumors resected.. She suggested me to go to Singapore for the best result.. ( www.nccs.com.sg)

I discussed with my family and they agreed for me to go there for check up.

Meanwhile I will try the sutent and radiation combo on my calf.

About my shoulders, the size of the mets are smaller about 50% than it was before I took Sutent.

Unfortunately the one in the calf grows back to its original size. Its not painful as before and its hardened

If I go to Singapore, what is the to do guideline? What I should tell the doctors?

Many thanks in advance!
>

[Olga]

Well, consider it going there for a second opinion re. how to manage your situation in a best possible way. Contact them to set up an appointment, they will let you know what they want to see, but generally:
You should bring over there:
1. The pathology report from one of the surgeries - anything when ASPS diagnose was done, you can also ask for the slides at the hospital - these are small blocks with the pieces of tumor in them, just to confirm the Dx.
2. All copies of the scans that you had at your local hospital burned on a CD - CT scan of the chest, scans of the shoulders, MRI of anything you had - ask at the radiology department what they have on file. The oncologist should probably make a formal request to release these scans to you - I do not know how it is regulated there.
3. Ask the oncologist to write a referral letter with the detailed history of your disease.
Is it far away from you? Do you need a visa to get there? In some cases you need to obtain the preliminary agreement from the facility that they are going to see you and that will be enough of the justification to get the entry visa.
I checked the web-site you provided and it looks good to me, they even have all the newest radiosurgical units there - Novalis, Trilogy...I also liked that they have aggressive surgical policy at their Department of the Surgical Oncology. I hope that they are familiar with the ASPS sarcoma being slow growing and therefore justifying the more daring treatment then the rest of the metastatic cancers.
There is a link they have for the foreign patients for the start:
http://www.nccs.com.sg/pat/06_01.htm

[Rheza]

I emailed them this :

Hi, I`m Rheza 27 years old male. Im an Indonesian and I`m diagnosed as Alveolar Soft Part Sarcoma patient. My doctor here suggest me to go to NCCS as my type of sarcoma is considered very rare, and unknown here in Indonesia. What I would like to ask through this email is : - have NCCS happen to treat this type of cancer before? - if I go there for further diagnostic, approximately how many days I should spend? - what is the estimated cost? Btw, I`m willing to participate in clinical trial if needed.. Many thanks in advance for your concern.. Regards, Rheza Christian rheza.christian@gmail.com Bandung, Indonesia +6287821449080

--------------------------------------------------------------------------------------------

And this is the reply :

Dear Rheza

Thank you for your enquiry with National Cancer Centre Singapore (NCCS).

We seek your understanding that each treatment is individualized and treatment management should not be advised through email.The duration, schedule or cost estimates of a patient's treatment plan will depend on the exact nature of the patient's medical condition which is determined during the consultation session. The general information provided by the oncologist is selective and does not cover all treatment options as we do not encourage treatment over email. It is not a substitute for medical advice.

Below is comment from our oncologist:

"Yes, we definitely do. We are probably one of the few centers in the region with this expertise. Patient can come see me first, allow me to make an assessment. Pending review, patient may require repeat surgery (not confirmed). If surgery is needed, patient can return for review 1 week after surgery. Patient would also need CT scans and a PET scan."

For arrangement of appointment, please provide us with the following particulars of the patient:-

Patient Details

Name as per passport :
Gender :
Date of Birth :
Nationality :
Home Address :
City in Country :
Mobile Number :
Home Number :
Question : How did you get to know about Foreign Patient Service Dept (FPS) ?


Arrangement of appointment has to be made in advance. Please advise us on your preferred and alternative dates of consultation appointment in case our clinic sessions are fully booked.

We are pleased to inform that the Foreign Patient Service Department at the NCCS also provides assistance in the following areas:-
General Enquiries
Medical Referrals & Appointment
Accommodation Arrangement
Visa Extension
Ambulance Services
Interpreter/Translator Services

Hope this information is useful, please feel free to contact us should you need further clarification or assistance with arranging for an appointment.

Regards
Evelyn Lee

I think this is the best I can get. What do you think?

[Olga]

I think that it looks good. Did you note that they suggest that you will need to be scanned there again (CT and PET)? Provide them with all they ask first and go for the consultation appointment, take the scans with you may be they will like to see them.
Is it far away from you?

[Rheza]

Its near.. approx. 1 hour flight. I might go there end of this month. Will inform you if there's further information..

Thanks for your concern Olga!

[Olga]

Rheza - On the BBC they said that because of the volcano eruption there are no flights from Indonesia to Singapore, how are you going to fly there? And another thing - there seems to be very strict policy re. border crossing when enter to Singapore for carrying the drugs containing morphine, if you are on any strong pain killers, make sure that everything is properly documented.

[Rheza]

http://www.multiupload.com/O7IJU9HPWK

http://www.megaupload.com/?d=C9UVR5WA

with this post i attached a singapore's doctor medical report about me.

They suggest me to take 37.5 mg of sutent everyday without break, because whenever i stop the tumors grows back.
Now i'm taking it for another 2 months, after 2 months i will go for limb MRI then sent the CD to Singapore and the doctor will decide what to do with my right leg since now i can not use it to walk or even stand. The options might be leg amputation or bone replacement without removing the tumor on my calf.

What do you think would be the best option? thank you in advance for your suggestion.

Regards,
Rheza Christian

[Rheza]

Btw, the doctor suggest whole brain radiation when MRI detected that i have a brain met. But i read some article here that WBR is not recommended.

O ya, the doctor found about my brain met because when I was in Singapore l had an epilepsy. The doctor gave me keppra to avoid the epilepsy.

I need suggestions what to do next. Thanks..

[Olga]

Rheza - good to hear from you. I think that what they say make a sense but only if you see that - when you take Sutent the tumors stop to grow, may be it has already develop resistance to it and you need to change the meds? In that case you would need to stop, do a surgery and then go back on the next med after the surgery, LCMA from our board is taking sorafenib now and it seems to stabilize her mets and the drug is avail. on the markets. Do you know why they propose an amputation instead of the tumor removal? Did it crash the bone? Is the tumor in the calf? In some cases it is a relief for the people to have the affected part of the leg amputated and I know few people with sarcoma that have very good mobility and no problem with the walking at all after the below the knee amputation.
Regarding the brain met. What size is it? If it is small you can request a radiosurgery - preferably GammaKnife as we have very good results with treating by it small ASPS brain mets. It might be avail. in Indonesia but it is also avail. at that clinics in Singapore - I saw they mentioned it on their web-site. I hope that you can afford it or you have an insurance for it, but it needs to be done soon.

[Rheza]

Thanks for the fast reply Olga.. my brain met was 4.5 x 4.5 cm.. i think it's not small right?
What about the brain radiation I'm under now? Should i stop?

So my next step are,

stop brain radiation,
continue sutent until next month,
MRI
send the scan to Singapore
Do the surgery.
Recover,
change medical plan.

Am i correct?

Btw the doctor suggested amputation because the latest scan showed that the tumor has eaten my knee bone.. why they wont remove the tumor is that because the tumor is too close to my vein. They will reconsider what prosedure going to be made once i send the latest scan..

About the bone replacement i was wrong... what they will do is scrap the sarcoma on my knee cap, put bone cement, then screw platinum plate to cover the knee cap.

Btw I watched some youtube about prosthesis leg, and i think if amputation would be the best option, i will take it..

Thank God I found this forum.. i would be so stressful if i didn't..

[Olga]

This brain met is to big for the radiosurgery, they should do you a surgery now, if this met is accessible from the surface. How the whole brain radiation could be of help if none of your tumors responded to it before - as I remember you had it for the other locations and it did not work? Is there only one brain met?

[Bonni Hess]

Dear Rheza,
Thank you for your detailed updates and sharing of your medical reports which is very helpful in being able to better understand the current situation with your disease and treatment. I too am grateful that you found your way to our Web site and that you have reached out for information, advice, and support. I am grateful too that you are now receiving medical care from Singapore, and I am Hopeful that the Sutent will be able to stabilize the progression of your disease and shrink your tumors. I am so very sorry about the tumor in your right leg having invaded your knee bone, but I am grateful that there are some treatment options which will be explored following your next MRI as it is critical that the issue of this tumor be addressed as soon as possible. I am additionally deeply sorry that you have also now been diagnosed with a relatively large brain met. Resection of the brain tumor would be the best treatment option, but if the tumor is located in an area of the brain where it is not surgically removable, the next best treatment option would be radiosurgery with Gamma Knife or Cyberknife to try to shrink and destory the tumor. Unfortunately, as Olga said, your brain met may be too large for a successful response to radiosurgery because radiosurgery is more successful for smaller brain mets (usually less than 2 Cm.), but this is certainly something which you need to discuss with your oncologist immediately. Because ASPS is so notoriously radiation resistant, Whole Brain Radiation (WBR) does not seem to have been successful for ASPS patients because, unlike Gamma Knife or Cyberknife which can target and deliver extremely high dose radiation to a single tumor, WBR can not give a high enough dose of radiation to kill the tumor without damaging the rest of the brain tissue. If surgical removal of the brain tumor or radiosurgery are not viable treatment options, a strong systemic which can cross the blood brain barriar is needed to try to shrink and kill the tumor. Sutent can cross the blood brain barriar, but unfortunately it apparently has not been able to prevent the growth of your brain met, so another systemic treatment which can cross the blood brain barriar such as Cediranib may need to be pursued. I know that you are facing many difficult challenges right now dear Rheza, and my heart breaks for all that you are going through, but please know that you are not alone in your battle and that I and others in the ASPS Community and on this Board are here to try to help in any way that we can with shared information and strengthening support and encouragement. Please take care, hold tight to Hope, and keep the Board updated as you are able.
With deepest caring, special healing thoughts and wishes, and continued Hope,
Bonni

[Rheza]

Thanks Bonni for the reply..

Reading what Olga and Bonni's post, i assume i will

- stop WBR since it wont do anything to the brain met,
- continue sutent
- mri
- proceed with the leg surgery
- recover
- change systematic treatment

Or is it important to treat my brain met 1st? So far, as long i take sutent, the brain met doesn't give any problem (i think)

Please give me guideline what to do next..

Thanks in advance...