Mario from Arkansas - Dx 2007

ASPS patients post updates here, including tales of success :)
Ivan
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Re: Mario

Post by Ivan »

Mario, I think you have a good plan. Just make sure don't wait too long if it does start growing. Dr. Rolle is a very good option :)
Bonni Hess
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Re: Mario Ernesto Arevalo Melendez

Post by Bonni Hess »

Dear Mario,
Thank you for finding your way to a computer to post an update. Thank you too for the shared information on rebound following Avastin treatment, and about the promising new anti-angiogenic drug Tivozanib (AV-951). The information in the link that you provided for Tivozanib indicated that it has shown success for renal cell carcinoma and several other types of cancer, but it did not mention ASPS, sarcoma, or soft tissue cancers. Also, it will be a Phase 3 Trial which is usually a randomized or double blind study where some patients receive the Trial medication and some receive a placebo, so you may not even receive the Tivozanib medication in this Trial which would waste valuable time without providing you with any medication benefit. Therefore unless there is a different Phase 2 Tivozanib Trial available that includes patients with ASPS, sarcoma, or soft tissue cancers I don't think that the Phase 3 Tivozanib Trial is an appropriate choice for you. I agree with Ivan that you seem to have a good plan in taking a break from the Cediranib as long as you are watchful of any symptoms that may indicate rebound and progression, and it also seems to be a good plan to explore and pursue laser resection of your lung mets with Dr. Rolle.
Enjoy your vacation from treatment, have a very happy and healthy Spring with lots of sunshine, R&R, and beach time, and know that my very best wishes are with you for good news on your May 1st scans with results that show that your disease has remained stable with no rebound and progression.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Ivan
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Re: Mario from Arkansas - Dx 2007

Post by Ivan »

Mario, did you have your check up on May 1, as planned?
cachabamba10
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Re: Mario from Arkansas - Dx 2007

Post by cachabamba10 »

Everyone!!!

Hi, I have quite a lot to update since last time I wrote. I had my check up done on May and it show growth of two nodules. One was what they would call a dominant met, it grew from 1.7 to 2.5 CM in about 4 months. This sucker was actually in a pretty dangerous position, more on that later. The other one was on the other lung and it grew from .7mm to 1.1 CM. Everything else stable.

Knowing this I decided to contact Dr. Littrup at the Karmanos Cancer Center. It took some time to get a hold of Dr. Littrup and Barbara, and then it took even more time to set everything up. on June 21 I had my first Cryoablation done. They took care of my 2.5 cm met, that was actually close to the aorta and kind of resting by the stomach. After that everything that could have gone wrong, I think went wrong. The procedure was fine and I was out the same day but I had a ct scan schedule two days after. We found out that I had some liquid on the ablation lung. I wasn't having any pain at all so we decided to let it go.

Next, the scans show that three mets on my right lung had all grown about one or two mm, including the other one which I said earlier grew from .7 to 1.1cm. So, Dr. Littrup tells me that he wants to go ahead and try to treat those three at the same time using microwave technology, instead of cryo. He explained to me that, he had a new machine which had wayyy smaller needles and that he was able to control the burn better. I told him lets do it. But when he tried, he discover that the fluid on my other lung was way more than previously seen in the first scan, so he decides to take out the fluid before the procedure. and when he does my lung collapses completely. so Microwave ablation was a no no that time, he had to balloon my lung and make sure it was allright.

next I get a delayed pneumothorax from my first cryo, and that lands me in the hospital. After two days everything was okay and we decide to give it a try again. we wait a week and give it a try and again my left lung collapses for some unknown reason. Microwave treatment again was a no no. Two days later I have another Pneumothorax and that lands me in the hospital again.

So, I am back home feeling a little bit better but still kind of sore in the chest area. I am a little bit dissapointed by the fact that we weren't able to do all that I had hoped for. We use a lot of resources and spent a whole month in Michigan. Yet we did take care of the biggest met I had in my lung and now I will be having a check up at St. Jude's on the 1st of August. We will see what we decided to do. I know that there is growth but so far the only rebound was the two spots I mention at the beginning.

I am good though, just a little bit tired of hospital food it SUCKS. Well, I can't complain much though, Dr. Littrup, Barbara and Regina are the best though. I will let you all know what happens next.

Sincerely;

Mario E. Arevalo

ps Dr. LIttrup wants a copy of my upcoming scans on August as he really wants to do the microwave procedure, I will let you all know what happens.
Amanda
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Re: Mario from Arkansas - Dx 2007

Post by Amanda »

Hi mario,
wow thats alot you went thru! An what a wild journey that was! I am so happy the 2.4 cm evil is gone! Please, post back I hope that the CT shows stable still and lets you do the other treatment needed soon so you can get it over with an on with other things an not hospitals and there food... hate there food!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Olga
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Re: Mario from Arkansas - Dx 2007

Post by Olga »

Mario - I really felt that something is going on not good when you did not answer to my last PM, but I could not even imagine that you had to much troubles in the mean time. I actually have heard about the cases when during the ablation for one lung the contra-lateral lung would collapse by the unknown reason - Brittany had is when her lung mets were RFA ablated, I hope that Bonni will correct me if I am wrong. For some people lungs collapse very easy, probably it has something to do with the thin walls of their air-bubbles. May be if there is more time between the ablations, it might be easier?
Ivan spent almost 4 weeks with the tubes 5 years ago after he had a delayed pneumothorax a month after his first lung laser assisted surgery in Germany, a week in a hospital with the smaller tube evacuating fluid trying to get the lung up, then a full size surgery to repair the tear after an attempt to use VATS failed and then 2 weeks with the persistent airleak after that repair - everything was healing nicely until his darling GF came to visit him wearing some kind of parfume - they had the "scans free building" everywhere at the hospital! - so he snoozed hard and tore the stitches again...that was a nightmare...
It is really better to ablate everything on a 15 mm size instead of 25 mm, makes the ablation zone much smaller and the surrounding lung destruction less dangerous. There is lesson to everyone - if planning to do an ablation, do it better earlier than later, do not wait for Barb and Dr.Littrup to review the scans, sit on the phone and shake them up or even fly there to look them in the eyes...It always takes an awfully long to review the scans for them, I know that they are busy for a reason, so do not wait until the mets are to big and you do not have a time to wait for their review.
Did you think about going to Germany - although it is expensive and if Dr.Littrup thinks he can do all the mets...Does your insurance cover it?
Olga
Ivan
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Re: Mario from Arkansas - Dx 2007

Post by Ivan »

Mario, you made the right decision - just bad luck :( 2.5 cm is quite large already as far as ablations go, maybe that's why there was an issue with it. Especially, considering that it was in a tricky spot!

I would go ahead and ablate the other three as planned, once you are recovered, as long as all the other small ones are not growing. Can you request the radiologist to compare the smaller ones to a year or two ago? Sometimes that will show growth, if you can't see it in 4-6 months intervals only.

The good thing is that you took care of the biggest one, and don't need to worry about it anymore :mrgreen:
cachabamba10
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Re: Mario from Arkansas - Dx 2007

Post by cachabamba10 »

@Olga, sorry for not answering your pm, but my main goal has always been going to Germany, is just that I have yet to come up with the resources needed for such a trip. So, far I still do not know how the insurance will pay on the ablation. I just got a Insurance benefit statement and I am not liking it, I will let you all know what happens on that regard. They already set me up with a case manager and hopefully it will be taken care of. On a side note, Dr. Littrup is filing insurance paperwork on his new microwave procedures as if he were doing RFA. He states that it helps with insurance since RFA is more accepted. Also, something to do with both RFA and Microware using the same bandwidth.


Everyone, I had my scan and it shows slow growth of quite some spots. all of them are small except for one thats about 1.5 cm. I have talk to Dr. Spunt and she is very reluctant for me to have another ablation so soon, the same goes with Dr. Littrup. I have had too many complications with my first ablation, that they both feel like I need quite some time to heal up. The questions then lies how much time, I have been told about a month or two. The scan also showed the 2.5 cm one that was ablated as necrotic on the middle, take into consideration that now it actually shows it as a 3.5cm spot, but as I understand that has something to do with the ablated area. The ablation area was actually 4.0/4.0/3.0. So, I have decided that instead of just waiting around doing nothing, until I can ablate something. I will go ahead and start on sunitinib. I will probably get my first dose in two weeks to a month, but the cool thing is that if it works and it actually shrinks some spots I can then stop sunitinib and ablate the tumors at the lowest size possible. If it doesn't work then I will just ablate anyways.

I am hoping against all odds that sunitinib works for me and is able to shrink some of the spots that I have. Also, I do not have any new spots they are all the same, they are just growing slowly, by about 2mm a month. I will let you all know how it goes.

Sincerely;

Mario E. Arevalo
Ivan
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Re: Mario from Arkansas - Dx 2007

Post by Ivan »

Mario, you will feel very well 1 month after ablation. I did a timed run, and I couldn't even find a 1% difference, which considering the fact that I didn't even jog for 2 weeks is pretty amazing. It was as if nothing had happened. I had a bad cold in February, and that was harder to recover from than the last ablation.

What about the other mets - how many are there, and what sizes?
cachabamba10
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Re: Mario from Arkansas - Dx 2007

Post by cachabamba10 »

Hey Ivan

I have 7 in one lung and about 6 in the other one. With the big one taken care of, now they all are between 2mm to the biggest being 1.4 cm. The 1.4cm is the one I want to get ablated as soon as possible. I have to wait though, Dr. Littrup plans to take care of the 1.4cm and two more. I only have two tumors that are bigger than a cm, the one mention earlier and another one at 1.1cm. The rest are less than a cm. Now the interesting part is that I have had this spots for about 2 and a half years to 3, with no new ones. The only new spots that I develop were right after my thorocotomy on my right lung in 2009.

I always wander if I am missing my chance to do a complete resection by not going to Germany. I hope not, and I really hope that in a year or so I am able to get to Dr. Rolle.

I haven't try any sports yet, I think I will try bicycle first and then running.

We will see, I also wonder how Sunitinib will affect my lifestyle we will see.

Sincerely;

Mario E. Arevalo
Ivan
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Re: Mario from Arkansas - Dx 2007

Post by Ivan »

Just take it very easy when you start to exercise. Do it pain-free. I think it's always better to do it too slowly than too quickly :)

Have you consulted with Dr. Rolle at some point already?

The 1.4 cm met - how much did it grow from the previous scan?
cachabamba10
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Re: Mario from Arkansas - Dx 2007

Post by cachabamba10 »

Hey Everyone!!!

It's been a while since I updated anyone here, I took a small break there for family reasons and because of the holidays. I had a ablation done on the 18th of January, on another dominant nodule which was around 2.5cm in size. We also check the the previous cryo ablation site and it has now shrink to a 1.6cm size from 2.5-3.0cm. I am doing well, this cryo ablation procedure was so easy, it was still a little bit painful for about a week,but thats about it. Tomorrow it will be three weeks since and I am doing good (knock on wood :)). Its weird because the previous cryo was done on a nodule of about the same size, and I had so many bad things happen, I am just guessing here. But, I came up with the idea that it could be related to the radiation that I received on my left pectoral side. Could that had maybe weaken the left lung?? who knows. Maybe I am just thinking too much, overall I am happy I am doing well and this time the cryo was super easy.

Now, I have finally came up with a total # of nodules that I have. I was actually wrong last time. its 9 and 11, ohhh can't really remember which is right or left. but its 9 in one side and 11 in the other. Right now I do not have any nodules bigger than 1.9 cm. I have two that need attention which are a 1.9cm and 1.5cm. I will be talking with my medical group probably next week to make a decision whether to do a cryo treatment or think of a systematic treatment. I prefer Cryo myself, but I have to hear the suggestion of my family members and medical team and then make a good decision.

So, I am doing good really great actually, and I hope everyone else is doing okay.

Take care everyone;

Mario E. Arevalo

ps. I try Sunitinib in October and that fail miserably. I was on sutent for only three weeks, but we had to stop the medication due to heart problems. Word of advice if you have had Doxorubicin and are planning to take sutent, be very careful. Also, we did a scan after three weeks and there was considerable growth, so darn it, it sucked. :evil:
Olga
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Re: Mario from Arkansas - Dx 2007

Post by Olga »

Mario, thanks for an update. It is good to hear that this cryo ablation procedure was very easy this time. The last time bizarre situation is very untypical, especially considering Dr.Littrup's extensive experience - with the lungs ablations the rate of the complications greatly depends on the experience and he is the top doc for it...But s---t just happens, I know someone who had a bone met in a jaw ablated by him and had the lung collapsed as well - that came as a big shock for everyone incl. Dr.Littrup. Good luck with the looking for the systemic options and keep us posted what docs are saying.
Olga
Ivan
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Re: Mario from Arkansas - Dx 2007

Post by Ivan »

Good to hear back from you! With only 2 nodules of significant sizes, I would probably opt for a couple more cryo ablations.
Bonni Hess
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Re: Mario from Arkansas - Dx 2007

Post by Bonni Hess »

Dear Mario,
Welcome back to the Board and thank you for your thoughtful update. It was so good to hear from you, and I am so grateful that your recent lung Cryo in January went so much better than your previous Cryoablations last summer. Your more positive experience this time seems to be more typical of how the procedure should go, but of course there are never any guarantees and as Olga said, "s--t" just happens". Brittany had a much more difficult time and recovery with her lung Radiofrequency ablation (RFA) than she did with any of her three lung Cryos. With the RFA she developed a post ablation pneumothorax (collapsed lung) which required her to be re-hospitalized to re-inflate her lung. We attributed the pneumothroax and more difficult recovery to the difference between Cryo and RFA, but based on your experience it appears that these complications can occur with either procedure.
I personally agree with Ivan's advice regarding undergoing another Cryo for your current two largest lung mets since it would be best to destroy them before they grow any larger. Of course, if you decide to go forward with a systemic treatment, the Hope would be that the systemic treatment would shrink/destroy the mets, but unfortunately there is no current systemic treatment for ASPS which can guarantee success in shrinking/destroying ASPS tumors, whereas Cryo already appears to have been successful in shrinking your treated lung mets. Perhaps the best approach would be to Cryo the two largest lung mets, and then just monitor the growth of the remaining lung mets with regular scans, unless you have tumors in other areas of your body which need to be addressed . Was any diagnostic conclusion ever made about the undetermined lesion in your liver which was being followed by your doctors?
I am sorry that Sutent was such a failure for you and that it not only failed to prevent the growth of your tumors, but that it also caused heart problems for you. It would be deeply appreciated if you could post a brief update on the Sutent topic on this Board regarding your Sutent experience, side effects, and failed results as many others are following this drug. Unfortunately, Sutent does not seem to have shown very much success in stabilizing disease progression and shrinking tumors for the majority of the patients on this Board who have used it and shared their treatment results.
I will be anxiously awaiting your next update regarding your decision about your next treatment after your discussion with your medical team and your family members. In the meantime, please take care Mario, have a very happy Valentine's Day, and know how happy I am that you are doing and feeling good.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
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