Mario and Pazopanib(Votrient)

[cachabamba10]

Hello!!!

Hey everyone, I have been taking Votrient for around 2 and a half months. I am now a patient at MD Anderson in Houston,Texas under the care of Robert Benjamin. My main problem is the lungs, as I now have one tumor in the 40mm size and a couple on the 30mm to 20mm. I have around 10 nodules on one side and 11 on the other.

Since the last time I posted something in here,I was experiencing side effects because of the size of the nodules. I am doing a little bit better now. I started votrient at 400mg and had to stay on that dose for a month because after a week of taking the drug. I caught some kind of virus and it took me 10 days to get that nasty bug out of my system. I had to stop the chemo for 10 days and then resume votrient at 400mg. After the first month, I went up to 600mg and after a week of 600mg, I went up to 800mg. I have been on 800mg for about a month. So far the side effects are nasty headaches (bear in mind that I have migraines all the time, but they have nothing to do with ASPS, I just get them always) stomach pain, Diarrhea, a little bit of high blood pressure (I am taking Carvedilol, I have been on Carvedilol for a year now as a protective measure for my heart),bone ache, and a overall feel like if I have the flu but not too bad.

Okay so on the migraines, I believe that Votrient is not the cause of it. Since I have had migraines since I was a child. It just makes me have more episodes,right now at least once a week if not twice. I take sumatriptan for the migraines. I have also been put on a Morphine ER regimen of 15mg twice a day. The daily Morphine has help me so much is unbelievable. I have fought my doctors for years on taking pain medication. I just do not like it. But, since my illness has progress quite a bit, I just gave up. I have Morphine IR 15mg available too just in case I have a bad day, but so far I haven't use it at all.

Basically, I am doing pretty well on Votrient, I would say its a cake if you compare Cediranib and Votrient. Cediranib did suck.

I still don't know if its working, I have my upcoming appointment on the 14th of May and then I will know for sure. I am really hoping that it works. My future really doesn't look good at all if this doesn't work.

My understanding is, that there is quite a few patients being treated this way by Dr. Benjamin. I hope this info helps and if you or anyone has a questions feel free to PM.

Sincerely;

Mario

[Olga]

Mario, thanks a lot for an update and for sharing your experience with Pazopanib.
I just wanted to tell you that I also take sumatriptan for my migraines and in case if you do not know that, sumatriptan itself may be the cause for the next days migranes - you take it one day, it works in blocking the serotonin but the body detects that there is not enough serotonin and in return produces more then needed again so you get the second round of the migraines and so on - a dream drug for the pharmacies - the more you take, the more you need it, so may be it is unrelated to pazopanib but rather you being on a sumatripan for a long time. I am trying to keep the initial dose of it as low as possible, I take 1/6 of the standard 100mg tablet and it works good for me.
Keep us posted, please.
Olga.

[Bonni Hess]

Dear Mario,
It was so good to hear from you again, and I am so deeply appreciative of your thoughtful update on your Votrient (Pazopanib) treatment experience thus far. Dr. Benjamin is a very experienced, well known, and highly experienced Sarcoma specialist so you should be in good hands with your treatment from him. I am grateful that your symptomatic side effects from your large lung mets have improved and I am holding VERY tight to Hope that the Votrient is working to shrink/destroy the mets and to stabilize the progression of your disease. I am grateful too that you are tolerating the Votrient side effects better than you did when you were taking Cediranib, although they seem to be somewhat similar to the stomach pain, diarrhea, and headaches that Brittany suffers from Cediranib. Have you experienced any of the fatigue, severe insomnia, vomiting, hand foot syndrome, and/or mouth sensitivity that is common with Cediranib and most of the other TKI drugs?
I Hope that Dr. Benjamin's other ASPS patients, as well as any other ASPS patients who are taking Votrient, will also post their treatment experience information and results on this Board because shared anecdotal treatment information is so vitally important to all of us who are closely following this drug and its potential as a viable ASPS systemic treatment option.
My most positive thoughts and very best wishes will be with you on May 14th for very good scan results that show that you are having a very positive and successful response to the Votrient with significant shrinkage/disappearance of your multiple mets , no new tumors, and stabilization of your disease. In the meantime, please take care dear Mario and have a beautiful Springtime.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni

[cachabamba10]

HeY!!!

@olga thanks for that info Olga, I will keep that in mind. I haven't had a migraine episode since I posted here(knock on wood).

@Bonni yes indeed all of those side effects are present.

I had my 3 months check up on the 14th of May, and we got good news. Votrient is working, most tumors on my lungs have decrease in size by a 1/3 in size. Example one that use to be 3.7cm now is 2.5, I am very excited and optimistic about this. At the same time, there are some weird things that pop out on the scans. If you all have follow the updates, I have had a spot in the liver since 2010. This spot has never grown or decrease in size, but this time it decrease in size??? Because of this, the radiologist who read the scan calls it metastatic disease. I do not like this, we have always thought that this spot was just a fatty mass in the liver but now who knows. I have a upcoming appointment with my oncologist here in Arkansas and I will discuss this a little bit more.I was in Cediranib and Sutent and the liver spot did not change size while I was on treatment or off, WHY NOW? Its weird but like I said, I am meeting the oncologist and I will discuss it with her.

Side Effects have seriously suck since I wrote my post here on the TKI forum. The last month, all the side effects have gone berserk, I am talking about diarrhea,stomach pain,fatigue,insomnia,foot and hand syndrome,skin irritation,vomiting,and overall body ache. What I think happen was, that Votrient is very passable at a 400mg or 600mg dose. 800mg dose is very toxic,but not at the onset. I believe that going from 400 and up help me to get use to the drug and that's why all these side effects where not as bad. Once you take the 800mg dose for more than a couple of months it starts to debilitate your body. If I compare this to Cediranib, Cediranib struck with full force from the beginning but Pazaponib was okay and its just getting worse. I am very happy with the results of the treatment so far and will talk with my oncologist about side effects and how to handle them better.

I hope this info helps and if you all have any questions please feel free to ask. If I do not answer fast I apologize but sometimes I feel really bad. I have my good days and my bad days. I have read some of the updates on the board and to tell you the truth, I feel really sad. So many of the people that I came to talk and care for since 2007 are not with us anymore. I hate this cancer, and fighting this stupid cancer for 6 years now, it just makes me feel tired. I am not giving up and I will continue to fight. I just wish we could all catch a break and be healthy.

[Bonni Hess]

Dear Mario,
Thank you for your very thoughtful update with the VERY good and encouraging news of your successful response to your Votrient treatment which has provided significant shrinkage of your lung mets . I too am perplexed about the apparent shrinkage of your liver lesion which your doctors previously thought was a benign fatty mass, but am grateful that it is shrinking instead of growing, and am wondering if the Votrient could possibly be working to shrink a fatty mass as well as ASPS mets?!? I am anxious to hear your oncologist's opinion about this issue and will be looking forward to your update on the results of your discussion with her.
I am so sorry that your negative and very debilitating side effects from the Votrient have increased so significantly with the increase of your dosage of the drug from 400 mg. to 800 mg. Is there any chance that your dosage could be reduced back to 600 mg? Brittany was originally on 45 mg. of Cediranib but after a couple of months when her side effects became so severe her dosage was reduced to 30 mg. and fortunately she continued to have a successful response to the drug at the lower dosage. Unfortunately, she continues to suffer the negative side effects from the Cediranib, but they are more tolerable and her periodic severe vomiting episodes which required hospitalization have been greatly reduced and mostly alleviated by her having scheduled intravenous re-hydration every two weeks to try to avoid the dehydration caused by her chronic nausea and diarrhea which in turn resulted in severe uncontrollable vomiting. Perhaps scheduled re-hydration is something which you can also discuss with your oncologist.
I so deeply share your great sorrow for the patients who we have devastatingly lost from this Board, and your immense anger towards this insidious disease, but I know that we cannot give up and that we have to try to stay strong, keep fighting, and keep sharing invaluable researched and anecdotal treatment information and strengthening support with each other so that by all working together we WILL Hopefully someday soon be able to win this very challenging battle. In the meantime, please take good care of yourself dear Mario, let Hope lead you through each day, and keep in touch with the Board as you are able.
With deepest gratitude for your update and shared information, special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[Olga]

Mario - there is a well known way to verify if that liver lesion is a met or not - they have to make a MRI scan for that (as I understand the scan that was done is a CT). May be it makes a sense to discuss that with the oncologist?

[cachabamba10]

Olga, I had two MRI done on the chest in 2011 and in 2012. On both MRI's the spot was call something which I forget right now and have to look up but was told by the radiologist that biopsy would be the only definitive way to know for sure. The MRI were order as a routine for my chest. When I was a patient in St. Jude's Children they did Chest MRI every 3 months or 6. The spot never grew or became smaller whether I was in treatment or not. The other thing is I really am against biopsy of this liver spot. I seriously talk to Dr. Spunt back then about doing surgery and just getting rid of the spot,and she was okay with it as long as it grew, but it never did. I still haven't heard back from Dr. Benjamin and will email him again.

Sincerely;

Mario

[cachabamba10]

@ olga
"The previously described enhancing
abnormality in the liver at the junction of the medial and lateral
segments of the left lobe is again noted but only with the benefit
of the prior imaging. This seems to be becoming more subtle"

This was the last interpretation of my last Chest MRI in September 2012. I still have to find exactly what it was call the first time, but basically Dr. Spunt said it means a fatty mass.

[Olga]

I think the scan that was used as a routine for your chest was CT with the contrast (MRI is not used on the lungs although there are some some experimental units out of there but I doubt it?). Clarify with your oncologist or look for the name of the scan at the report's header.

[cachabamba10]

Hi olga, nope it was a MRI for sure, I think its my fault for not explaining a little bit better. In 2007 when I was diagnose with ASPS my primary was in the outer chest wall, left side in the pectoral muscle. Surgery was done, and I lost most of my pectoral muscle. They scrape two of my ribs instead of taking them out. The way to save the ribs was by doing radiation 55.8 grays to the site after surgery. Since then, I always had a MRI done to follow up on the surgery site of my primary by Dr. Spunt. The chest MRI was never to follow my lungs but instead to follow my surgery site and the development after radiation. Having said all of that, in St. Jude children, I always had done a MRI to the chest and a ct scan to the chest both with contrast every 3 months until 2011 we went to every 6 months. While I was on the cediranib trial they found the liver spot and the ct chest was change to CT scan of chest,lower and upper abdomen. It was better this way to follow up the liver spot, even though the liver spot is fully visible in the chest scans.

Talk to Dr. Benjamin and we will change the CT scan to include the lower and upper abdomen on August. I will also be getting a brain MRI just to make sure. After that we will go back to brain MRI every year instead of every 6 months. I still have to wait on his answer for a MRI of the liver. We will see what happens.

I hope this helps to explain everything, and as I said the above post I made is the radiologist description of the liver spot on the MRI of the chest.

sincerely;

Mario

[D.ap]

Hello Mario

This is Debbie, Joshua's mom.
Josh was DX in Sept 2012 with a mass in his right upper thigh. It has been removed with negative margins. He has had his left lung rid of 77 tumors and hopes to be returning for his right lung sugery to be performed in Germany soon. Its been a whirl wind of activities, education and emotions as I know you can relate with.

I believe I understood you to say that you would be getting a CT scan of the upper and lower adominal regions. I think I maybe missed something..Is this to veiw the surronding areas to create a basis for future scans or is it to make sure everything is good with your ribs? Also, maybe someone with more knowledge than me could answer this question. Is the MRI able to give really good detail of the surounding organs when it is not being focused on the organ to begin with ? This maybe clearer..Let's say the MRI was being focused on the lung and the liver was caght on the image..could the read of the fatty tumor be clearly seen as well.

It's really nice to meet you, Mario
Take care

Sincerely,

Debbie

[D.ap]

PS
Mario, great news on the shrinkage!

Debbie

[Bonni Hess]

Dear Mario,
I Hope that this finds you having had a good summer and continuing to have a very positive and successful response to your Pazopanib (Votrient) treatment with stable disease, no new tumors, and shrinkage/disappearance of your mets. It has now been five months since you last posted an update and I know it would be deeply appreciated by everyone if you could find the time to just quickly let us know how you are doing when your time and the situation allow. In the meantime, please take care, know that you are always held very close in my heart and my most special thoughts even though you may be absent from the Board and out of communication, and keep in touch as you are able.
With special caring, healing wishes, and continued Hope,
Bonni

[cachabamba10]

Hello,

I apologize for not updating everyone sooner,sometimes life can get hectic or you kind of just want to forget about this illness.

I am doing good, I have had my 9 month check up on November the last week in 2013. The scans showed stability. There was some growth but all of it was in the 1mm size and there was some downsizing again all in the 1mm size. Pretty much Dr. Benjamin says is a very good result, to summarize things, first 3 months I had amazing results with some spots decreasing in size up to 15mm. At 6 months again scans showed some improvements but not as good as the first 3 months. Lastly on the 9 months check up there is stability.

The last two months side effects have change a lot. Diarrhea has become less of a problem but pain everywhere in my body and abdominal pain has grown. My hair is turning back to its original color,is not white anymore also. I am eating every 2 hours and that seems to help a lot.

About the spot in my liver, they change the ct scan to a different one. Its still a CT scan but now they give me double the contrast and I spend way more time in the machine. Basically Dr. Benjamin explain that he is following my liver closely but still believes the spot in the liver is not disease. I would rather they just do the MRI, but I have never had so much trouble to get a MRI before. Dr benjamin says that if there is any evidence at all of growth or if the radiologist says it might be disease then we could order the MRI. We will see what happens. In the meantime I had my Brain MRI done which was clean very happy about that and my bone scan done which came back negative also.

I am still taking 800mg everyday and I have my 1 year check up next month on the 27th of February. I am very anxious and just kind of scare since the longest a Systematic treatment has work on me,has been a year which was Cediranib.

I hope this helps everyone on this board.

Mario Arevalo

[Olga]

Mario, hi, thank you very much for a very detailed report with tons of the very useful information. I hope that you will continue to have at least a stability on this drug.
There is an interesting thing about developing resistance to TKI inhibitors - sometimes only some mets develop resistance while the other ones do not (probably they have diff. genetic make up?). Since you are not on the clinical trial anymore, it opens some interesting possibilities to treat the ones that grow and to continue to suppress the ones that are responding. Brittany had one met that would not respond to cediranib, it was surgically resected and she is still stable on the cediranib couple of years after that resection. You can discuss that example with Dr. Benjamin if needed. Brittany is still on a phase 1 Cediranib in Canada (travel from Seattle to get the pills) and since phase 1 trials only study the side effects not the efficacy, they allowed the resection of the non-responding met while staying on this trial (on a phase 2 trial it is not allowed).
Congrats on the brain amd bone scans negative. How long is it now since you was first Dx with the lung mets?