Please help about "Votrient or Methotrexate"

Traditional cytotoxic combos in ASPS
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Mansai
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Please help about "Votrient or Methotrexate"

Post by Mansai »

Hello All,

First of all thanks to this web site due to it is helpful approach about this bed disease.

I have read a lot of stories and to be honestly especially good stories makes our axiology in higher.

Anyway let me tell our story and then I will have some questions. I hope you can share your comments.

My friend has a kidney and liver cancer since jan 2014. In the beginning when this was found first, it was only on kidney and the doctors took one of the kidneys with an immediate surgery. Then first chemotherapy started. At the end of it, the news were great. The controls showed that there was no cancer cell anymore it was completely cleaned. Doctors said to my friend that she would have routine controls in 3 months periods. As you can guess we all were very happy with these news. Then after 45 days from the first control which also means in the middle of control period, my friend has some pains and they were getting bigger day by day. The pains became unbelievable in a few days. She went to doctor and doctor made a scan whether there is new nodules or not. Unfortunately the results were not as we expected. There were a few nodules on kidney and liver area and 2 of them were 8x5 cm. Others were smaller. Her doctor said that this 2 cancer cell has grown up to 8 cm within 45 days which is not very normal. Then the second chemotherapy started.

In the meantime As soon as the second nodules appeared we consulted different doctors to be sure that our doctor’s way is correct. All of them had confirmed that the way is OK. That time the chemotherapy was much heavier than the first one. After it finished, the controls showed that it didn’t work and the nodules were remaining as they are in the beginning. They were again 8 cm. Only the difference was there was no pain anymore. Especially in the beginning of second chemotherapy my friend stayed with morphine bands. Up to here is what we lived up to this week.

With this bad news we again started to ask other doctors what our next step must be. Especially one of them who is very famous professor in my country gave us a different recommendation.

So we have to ways to choose.

Now our doctor, he is also a professor, thinks that our cancer cell is very aggressive by referencing it had grown up to 8 cm in 45 days. Therefore we must use an aggressive treatment. Therefore his opinion is to use methotrexate in third chemotherapy. It will take 1.5 months. He thinks it will effect to nodules faster than Votrient.
Our consultant professor opinion is to use votrient. He thinks Votrient can decrease the nodule. With votrient, the possibility of good results is higher than methotrexate can provide but it needs at least 2.5 months.

I have read a lot of stories and also I have search a lot of websites about both treatment method. I didn’t see any story that says votrient is not working. All of the stories were saying Votrient is working well. Only Mario Arevalo (cachabamba10) (by the way I would like to thank Mario with this opportunity. His writings were very helpful and in these writings there were a lot of question’s answers which I have. )

Many thanks Mario.

All of the stories were saying Votrient is working well. Only Mario said his last scan was not favorable after one year usage. In the beginning it was working. But other side albeit some people say they took good results on methotrexate, there are also a few stories which people say methotrexate is not working or useful for him/her.
Additionally you know our cancer cell is getting bigger very fast. Therefore unfortunately we don’t have time such as 2.5 months that Votrient needs if it will not work.

My questions are :
1. Do you know any story about such a cell that can be grown up so fast?
2. Please share your comments or knowledge about which treatment we should choose.

You know we are in fear, I hope we may choose the correct way. :(

I wish to all a healthy life.

Thank you for your time and for your replies.

Kemal B.
D.ap
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Re: Please help about "Votrient or Methotrexate"

Post by D.ap »

Hello Kembal

I am sorry to hear of your friends cancer and the cancer coming back after surgery .

You sound like a great friend to be writing for your friend and asking advice on their behalf.

How old is your friend ?
The cancer does not sound like ASPS
Write when you can
Debbie
Debbie
Olga
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Re: Please help about "Votrient or Methotrexate"

Post by Olga »

Hi Kemal,
welcome to the forum.
First of all I have to say that it is unlikely that your friend has ASPS (alveolar soft part sarcoma). Was she diagnosed with ASPS by the pathologist? Even if she was, by its clinical behavior it looks like papillary renal cell carcinoma - a rare type of RCC that looks very similar to ASPS under the microscope, we already had a girl that was misdiagnosed with it and later they corrected the diagnosis. They need to redo pathology and get another pathologist second opinion - slides of the tumor are being kept at the pathology lab that done the first diagnosis.
What drugs were used for the first two chemotherapy treatments?
About Votrient - it is a targeted therapy drug, TKI inhibitor, and the pretty much the same story for everyone who uses it - it is often active in the beginning and tumors shrink but then the resistance develops and they grow again. Some people use the moment when the tumors shrink as a window of opportunity to resect or ablate (cryo or RFA, they need to be reduced to at least 30 mm for the procedure to work) the tumors while their size allows.
About Methotrexate - it is a traditional chemotherapy drug which is used for osteosarcoma treatment, people say it is a very toxic drug, very hard to tolerate. I have no information about its expected efficacy in ASPS or RCC either.
Olga
Mansai
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Re: Please help about "Votrient or Methotrexate"

Post by Mansai »

Hi everyone ,

I'm sorry if I wrote this subject to a wrong website or a wrong location but to be honestly we dont know if it is ASPS or RCC. I had also searched this, before wrote here but I couldn't be sure. In pathology report, it says epiteloid variant of high grade miksofibrosarkoma. (Unfortunately the report is not english, therefore this is my translation. Maybe original name is different) and nothing about RCC or ASPS. Sorry about this. We can ask this to our doctor on Monday.

Hi Debbie ,
Thank you for your reply. She and her husband are my best friends since 1997 while we were in university. Infact their english is not well enough to write here. That is why I'm writing. But they are following the site very closely.

Please find the answers below. Many thanks.
How old is your friend ? she is 39 years old.
The cancer does not sound like ASPS. Sorry we dont know this.


Hi Olga ,
Thank you for your reply. I will check for the type.

Please find the answers below. Many thanks.
Was she diagnosed with ASPS by the pathologist? Sorry again. We don't know this.
What drugs were used for the first two chemotherapy treatments? in first chemotherapy it was ima protocol and in second chemothrapy it was gemcitabine docetaxel protocol

Thank you for your time and replies.
Kemal B.
D.ap
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Joined: Fri Jan 18, 2013 11:19 am

Re: Please help about "Votrient or Methotrexate"

Post by D.ap »

Hello Kembal,

My gut feeling was that it was Rcc after searching kidney and alveolar soft part sarcoma as Olga so graciously offered.
I'd be interested how the appointment goes on Monday and if there has been a definent diagnosis from a pathologist and doctors.
When our family first embarked on our search to make sure that the cancer we were looking at was indeed ASPS as it is SO rare , we had our slides looked at by 3 different doctors and they all agreed with the first dx.
Found this link that defines , and concludes with ways to manage the cancer
8cm is fairly large in comparison to the size of kidney but your doctor can answer whether a portion of the kidney could be removed or ablated through a laproscopic surgery.


http://en.m.wikipedia.org/wiki/Renal_cell_carcinoma

Our best wishes for your friend
Debbie
Ps our son is 34
Debbie
Olga
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Re: Please help about "Votrient or Methotrexate"

Post by Olga »

The diagnosis is probably Epithelioid variant myxofibrosarcoma, very recently described variant.

Epithelioid variant of myxofibrosarcoma: expanding the clinicomorphologic spectrum of myxofibrosarcoma in a series of 17 cases.
http://www.ncbi.nlm.nih.gov/pubmed/17197925
it is really hard to say what could be effective here, she might as well trying both these drugs in a sequence, but stay active with the scanning so if it does not work soon switch to another and watch for the window of opportunity to ablate if gets smaller.
Olga
D.ap
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Joined: Fri Jan 18, 2013 11:19 am

Re: Please help about "Votrient or Methotrexate"

Post by D.ap »

Also located a really good link for the doctors both oncologist and pathologist to read and possibly utilize if the cancer turns out to be myxofibrosarcoma
http://www.thedoctorsdoctor.com/disease ... arcoma.htm
Debbie
Mansai
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Re: Please help about "Votrient or Methotrexate"

Post by Mansai »

Hi All ,
Thank you for your sharings.
Today we asked our doctor if it is a RCC or ASPS and he said this not RCC or ASPS, this is Soft Tissue Sarcoma.
Meanwhile we started Methotrexate today. She will stay in hospital for a few days. I hope it will work.
Additionally today we took another bad news. After second chemothrepy there had been 2 big parts in scan results which I mentioned 8 cm in my first written but we hadnt receive the report of it while I was writting. Today we received the report. Report says one of 8 cm has become 11 cm and the cancer cell has spreaded to lungs. :(
This means the second chemothrapy didnt effect anything.
As far as my understanding, this Epithelioid variant myxofibrosarcoma is a very new type of Sarcoma. Doctors also are experiencing it patient by patient. It is not completely described that which medicine will be the best , yet. During this period, only we can do is, pray and hope methotrexate to work.
Thank you for your time.
Kemal B.
D.ap
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Joined: Fri Jan 18, 2013 11:19 am

Re: Please help about "Votrient or Methotrexate"

Post by D.ap »

Prayers are always there my friend . My fellow care taker
Write to us , me anytime

Love
Debbie
Debbie
D.ap
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Re: Please help about "Votrient or Methotrexate"

Post by D.ap »

Kemal
This is a link to the world health organization , WHO, on tumors on record from around the world that the doctor can search and maybe network with to help your friend
Love
Deb

http://www.iarc.fr/en/publications/pdfs ... b5/BB5.pdf
Debbie
Mansai
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Re: Please help about "Votrient or Methotrexate"

Post by Mansai »

Hello Deb , Hello friends

Thank you for the link. I wrote to Professor Fletcher and he said It would be very, very unusual for epithelioid myxofibrosarcoma to arise in the kidney or even within the abdomen - so perhaps this could be something different. He requested me to send a parafin block. We are now working on this request.

Thank you everybody for their support.

Best Regards...

Kemal B.
D.ap
Senior Member
Posts: 4138
Joined: Fri Jan 18, 2013 11:19 am

Re: Please help about "Votrient or Methotrexate"

Post by D.ap »

Kemal

It truly is the signs of a good doctor who takes the time to respond to a request as you have made.
Let us know
Love
Debbie
Debbie
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