Sarah from Pakistan - Dx 2017

[D.ap]

Hi Sara

I’m sure sorry to hear of the vomiting .
Small means can help is my understanding .
You aren’t experiencing things like vomiting blood up and or chest pains ?
Pazopanib is known to cause vomiting however don’t let your guard down and contact your docs to let them know.
Are you getting pelvic scans as well?
Hope you get some relief soon

Love

[Bonni Hess]

Dear Sarah, My very best wishes, most positive thoughts, and greatest Hope will be with you for good news results from your tomorrow's chest CT scan. Will you also be having a critically important monitoring abdominal/pelvic CT or MRI and a brain MRI to determine and assure that there are no mets in those areas? Regarding your Pazopanib related increased vomiting, I strongly encourage you to pursue obtaining bi-monthly intravenous saline re-hydration to pro-actively replace the fluids you lose through the diarrhea. This has been very successful for Brittany for the past several years after we requested it for her because she was having Cediranib related dehydration that then caused severe headaches, nausea, and vomiting that required emergency hospitalization almost every two months. Since beginning the re-hydration regimen, she has thankfully not had any severe uncontrollable vomiting episodes. We don't understand why doctors don't pro-actively recommend this preventative regimen tor their TKI patients, and why it took us having to request it! I Hope this information is helpful to you and that you will discuss and pursue a re-hydration regimen with your doctor as soon as possible. Take care dear Sarah and please update the Board with your scan results when you are able. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

[arojussi]

Hi and good luck.

[Sarah Ti]

Hello everyone.Sorry for being late in updating as I was travelling back to Pakistan.Well the CT (chest+abdomen,pelvic) showed stability.Thankfully there is no new growth or increase in lung mets size.My oncologist in Houston says to remain on Votrient as long as its working.While,my oncologist here in Pakistan suggests that ASPS is slow growing and its better that I should get it ablated by RFA.Because a/c to him votrient will stop working at some point of time and in Pakistan immunotherapies are not available.And without insurance I can never afford the immunotherapies or trails.So I wouldn't be left with much options.This is quite a hard decision to make.Has anyone had RFA here? How much successful is it and does it really kill the met completely?
My all mets are under 1 cm and there are around 10-13 mets.Few are dim and dull.It would be great if you guys can tell me about your experiences.I hope Im able to make right decision.

[arojussi]

I had rfa for one lung met. Yes ablation can kill ablated met completely if it is succesfull. I dont see any reson to wait until Votrient stops working.

[Olga]

Hi Sarah, stability is good for now. Immunotherapy might get approved soon for ASPS and then it might be avail. for you in Pakistan, no?
re. RFA. It is one of the ablation techniques, our patients usually prefer to use cryoablation as it is less damaging. If RFA is done by the very experienced doctor and the location allows it - not close to the trachea or major vessels, heart, nerves, chest wall - somewhere inside - it can be done and if there is no cryo doctor there, you could go for it.
re. Votrient. It has to be temporarily stopped for any ablation or surgery to avoid an excessive bleeding, but probably it is ok. The reason you might want to start ablating the bigger more dangerously located ones is pure;y strategic - if the resistance to Votrient develops and all of them start to grow, you will not be able to ablate all of them at once - only 1 or 2 in 2-3 months time.
re. immunotherapy strategies - there is a combined cryoablation+1 intra tumoral injection of the immunotherapy drug in Spain, or patient Seth is having it there - it is much cheaper than the immunotherapy course and may work, we do not know yet if it is able to create a tumor specific immunological response. But still is very expensive for someone outside of Europe, I understand, but just wanted to let you know.

[D.ap]

Hi Sarah

It sounds as tho your doc has good knowledge of Asps.
:)

The injection to the tumor of immune therapy meds , is seen in Seth’s post .( As Olga pointed out)
His treatment was to his lungs too.

http://www.cureasps.org/forum/viewtopic ... =75#p13067

Are you getting lower pelvic scans as well as lung scans ?

[Sarah Ti]

Thank you for the information.Baiscally,just like immounotherapy,cryoablation is also not available in pakistan.But RFA is available.Well I did see this link of Seth and the cost he wrote is gonna be too expensive for me.You guys have an idea that other than disease,money has to be managed too.I will see another lung surgeon on coming weekend who will tell if getting RFA from here is safe or i should go to US.
Plus for around 13 mets,the RFA would need to be done 2,3 times as 2-3 can be ablated at one time?Right? So ultimately it would cost me more:(
I heard that keytruda or some other immunotherapy can be accessed for compassionate use from some companies like Merck.
The only fear is of RFA surgeon's expertise.Its not very commonly done here in Pakistan.And I dont want to loose the good condition I have now by some complication thru RFA :)

[Olga]

Yes the level of expertise is the most important factor when percutaneous ablations are planned - the chance of the lung collapse with the ablations is very high when they have done less than 100 cases. If you finally go to US to ab;ate just a few located in the most concerning areas - for example close to the major blood vessels so the ablation might be possible on a smaller size only and impossible when they get bigger, I would highly recommend going to have a cryo wtih Dr.Littrup (but usually cost more) or Dr.Aoun (excellent team when Dr.Littrup worked before) in Detroit, they are usually cheaper. The cost of cryo and RFA is about the same. Sometimes they are able to ablate 2 in one procedure.
We have the member who only had money for few Keytruda injections, they made the first one a normal dose and few other at the reduced dose but less time in between. He is having an almost compete resolution few years after that. If the money are very tight I would go for few doses anyways.
Find out the offices for Keytruda and Opdvio in Pakistan, contact then re. possible off label use (for non prescribed conditions as ASPS is not yet on a label) and for compassion use (greatly reduced or free cost). Use the ASPS specific text we have in ICI drugs areas to explain to them why you are trying to access it. People are usually have to fight to get it, but in many cases they succeed on a basic of a rare disease.

[arojussi]

Most big drug companies have pd1 or it`s ligand targeting drug. Good thing is that asps is most likely one of the best responding cancer to this type of medication, so more drug company is able to test it`s pd1-inhibitor with asps patients better their drug appears so providing pd1-inhibitor to asps-patient would be beneficial for drug company at least in theory.

[arojussi]

Saw your post on asps facebook pace. I wanted to answer here so more experienced board members can point out possible errors. In medical sense immunotherapy is not curative as there isnt yet enough data bout long term outcomes. But responses in asps seem to be long lasting and radical meaning, that if you have response tumors shrink radically usually 70-80 percent. Tumors starting growing again is theoretically possible, but very unlikely. Often benign lesions and inflammation is confused to cancer progression. It seems, that more than 50 percent of asps patients respond to immunotherapy.

For surgeries, there are risks, but if all visible and future tumors are treated long term survival is possible. This is not the same as cure, but you can life good life despite of cancer.

As surgery will interfere with immunesystem you cant have lung surgeries and immunotherapy at the same time. But you can first try laser assisted thoracotomy for lung mets and if there is new tumors after you can try immunotherapy. Or you can try immunotherapy at first.

Unfortunately votrient you are currently on cant completely kill tumors. Same is true for other tkis. Immunotherapy can and, that is why it has been such a big deal.

I am sorry as I know, this isnt easy to hear, but unfortunately if tki like votrient is stopped, there is a risk of faster cancer progression. So changing treatment strategy at this point is also little risky.

[D.ap]

Hi Sarah
I truly agree that the Jussi and his statement of the expertise on this forum .

Jussi dx’d 2008
Ivan dx’d 2003
Brittany dx’d 2001
Bonni and Olga
And a lot of others , too many to name !

All the above folks have seen the worst but have also seen the best treatments for ASPS and know their stuff.
They have shared unselfishly their failed treatments as well as their successes , so we all could make more informed choices in our care today .
Without their advice and support ,
I can say with certainty our son Josh wouldn’t be alive today.
:)

Love

[Olga]

Sarah, I completely understand that when you have no access to the optimal treatment, you need to plan your treatment anyways, with what is available locally. It is a less known case here, but we actually had a very amazing result with the incomplete lung surgery. The case is posted here under the topic with the name:
CureSearch's daughter - Dx 2003
http://www.cureasps.org/forum/viewtopic.php?f=4&t=47
in short, the girl had multiple lung mets. They tried interferon alfa in the beginning, It did not work out. Then she had an open lung surgery with all visible mets removed, but the surgeon said there were micro mets there that he could not remove as he did not use laser, but just a very good quality conventional surgery. It was a long time ago. Since then her disease stabilized and there was no progression in the lung mets or elsewhere, with no any treatment. So if there is a progression after the systemic treatment options are all used, and there is still no access to ICI drugs - pembrolizumab (Keytruda), nivolumab (Opdivo), no access to cryo and to many mets for RFA etc - I would not hesitate to remove all the visible mets if the surgeon is experienced.
We do what we have to. Only few of us had an access to ICI drugs on a clinical trial. Many of us had to fight the insurance or travel somewhere to get it or pay the last money to survive. Try to contact local offices for Merck and Bristol Meyers - it takes a lot of flight but sometimes they agree to give you a try.

[Sarah Ti]

Thank you all three of you for explaining well like always.I got the immunotherapies vs other treatments different aspects now.The unavailability of immunotherapies in my country is such a dilemma which keeps me at risk of shortage of treatment options.Thats why I keep trying to learn more about the availability/access to different line of treatments too other than tki’s.
Currently,Im on votrient.Just got my scan done two days ago and have to see my oncologist this week.My hair turned white on votrient but since few days my hair are growing black again.It stresses me a bit that if that means the tki isn’t working.Anyways,let see what the oncologist say

[D.ap]

Sarah
Let us know of scan reports .
TKIs ie pazapanib ( targeted chemo therapies , to try to regulate pathways of deregulate vessels ; causing vessels to become regulated ) are very important with ASPS oncologist to know the next step , most times . : )

Have you gotten lower pelivic scans ?
Love