Mario on Cometriq

[cachabamba10]

Hello everyone:

I just wanted to share with everyone my update on Cometriq treatment. I have been taking Cometriq for 4 months and a couple of weeks. Side effects are the same as the other TKI but with a stronger presence. I was on the 140mg dose for two months and then went down to 100mg. Three weeks ago, I started vomiting like crazy. I would just throw up, without dizziness or nausea. We did a endoscopy and I lower my dose to 60mg. The vomiting stop but my belly aches are still there. The endoscopy couldn't find something conclusive other than my stomach wasn't emptying itself right so we added metoclopramide 10mg to help that. Other than that, Endoscopy show nothing and that my upper GI tract was healthy

The throwing up I really don't know what cause it other than the actual drug, I am now trying to get back to my 100mg dose. Each week I try to add 20 mg, we will see how that goes. On to the most important stuff Ct scans results. First two months we saw considerable shrinking on many sites in both lungs. They vary between 3mm to 6mm, in one case there was a change of 9mm. This is good news but I know this has happen to me in all the TKI drugs, the only difference is that I believe Cometriq also has a subtle C met Inhibitor with it also. Now the latest scans which was done on the 29th of June show complete stability. The radiologist even say that it look completely and almost like a picture from the last one. I also check it and there is some change of one spot being 2mm less here and there but I don't really count that as shrinkage. So those are really good news right..... well, I certainly take them as good news but there has been a huge toll taken by my body for being in constant chemo therapy for close to 6 years. My weight now is 130 and that is a big no no as my normal weight should be around 160. I am also having a lot of side effects which means I have to take more medicine. My appetite has taken a dive since I started on Cometriq. Lets see, to put it on persperctive, I lose 20 pounds on Cediranib that I never gain back. So I went from 195 to around 175, then lost another 20 pounds that I never gain back on Pazaponib. I am now 155 to 150 and the weight loss on Cometriq has been even worse.

Bear in mind that is not to the point that doctors are giving me medicine for it, but its really close. By the way I hate the boost plus stuff and so on.

I am skinny now and I am glad I finally lost all the weight from when I was given all the steroids with the Doxo and Ifasfamide but I have to stop the weight lost now.

Also, I have been having neck pain and headaches. we did a Brain MRI and was clear and also a Neck CT and it was clear . If pain persists we might have to do a Brain and neck MRI.

overall, I think I am doing good its just that I do feel weak because Cometriq is a pain in my ass but its keeping me alive.

I hope everyone is doing as good as possible, if you have any questions pm and I will try to answer. I am super sad today, because Argentina lost the world cup but what a game.

Cheers everyone and God Bless;

Mario

[D.ap]

Hi Mario

Stabilized is good news on scans!

I am sure sorry to hear of your sick to your stomach experience .
Maybe trying 4 to 6 small meals as you increase your doses ? High protein meals?adding higher calorie oils to the foods you cook.
Below is a good link
Adding 500 cal daily to a 2800 calorie day can add a pound a week if you have a sedentary life style
The article goes into that in detail

http://m.wikihow.com/Gain-Weight

Was the endoscope to look for an obstruction causing a gag reflux?
Were you able to get some answers from Dr Littrup?
I hope that the week to comes brings you a lot closer to feeling lots better.
The games were all very good games though. I am sorry that Germany prevailed.

Much love
Debbie

Wanted to link you to your personal story

http://www.cureasps.org/forum/viewtopic.php?f=4&t=452

[Olga]

Hi Mario,
thank you for the update - it looks like Cabozantinib is also an active TKI for ASPS, although you weight loss does not look good, and this vomiting is going to reduce your weight even more... Did you see in Brittany Hess posts that she also has the periodic episodes of the extreme vomiting that are caused by the build up of the cediranib in her body. They go trough an intense cleaning/IV liquids and it goes away. Are medical marihuana products allowed in your state? There is something for the appetite that works well.
As for Argentina - I do not see a real cause to be sad - they played very well, on the same level as Germany, the score like that is an insignificant advantage one over another. Silver medal is an extraordinary achievement for Argentina considering how much more money were invested in the Germany team versus Argentina team.

[D.ap]

Hi Mario

It just dawned on me that not everyone like me had to watch there weight
When I was growing up I learned about all the different diets etc.
Anyway to have to eat to gain weight has to be equally hard as you combat stomach issues as well
Food a calorie counter link
A tablespoon of peanut butter adds over 100 calories x2 gets you half way to your 500 calorie goal.
3500 calories without exercise gains you a pound
500 a day times 7 equals a pound a week
Go slowly cause I can only imagine how hard it is to get excited about eating
Boiled eggs are a great protein too!
Hope today gets you closer to feeling better !
And as Olga pointed out , Argentina should be holding their heads high with a silver metal.
Much love
Debbie

http://www.thecaloriecounter.com/Foods/ ... /Food.aspx

[Amanda]

Hello {{{Mario}}}
I am so happy for the stability!!!

I am sorry your team lost.. But, next year when they do win *and we kinda already know they will* hehe It will feel even more special!

Are you losing weight because of the pain an not eating or the needs making tummy bad?

I am also in pain right now an i cant even imagine dealing with chemo an then pain!!!

Mine is in the clavicle an the clavicular joint radiating from neck to shoulder! Its supposedly a good thing??? means i will get some feeling back after the jaw surgery an ear area...
I am worried that this pain you are having maybe making your life harder so lets try an find ways you can get healthy weight an not throw up?

I am going to help if thats ok to try and suggest foods and shakes ... would that be something you would like? If so i will <3
Here is the USA we have something called muscle milk and my father used it he was in his 90's!!!! Please, look at this product if you have it there an see that it has NO hormone stuff or anything your chemo an body will not like.. allergic reactions with chemo are dangerous..

Muscle mass is important in this fight!
If this wont work i have a ton of other ideas...
When i left the hospital i had my jaw wired shut i was in pain an food felt an tasted weird.. so i learned tricks to just swallow what i needed ...

If you do want me to help i need to know what you can not eat..
an is there a problem with temperatures like hot or cold preferences?
What is your most favorite food?

You are a dear person and i would love ot help you let me know

[D.ap]

Mario
Hope you are feeling better.

Love
Debbie

[cachabamba10]

Hello everyone;

I have some time right now and would like to share how things are going. Sadly I have been off Cometriq since July the 27th due to having emergency surgery. Nothing too outrageous rather more embarrassing than anything. Out of nowhere a couple of days before the 27th of July I started to develop a pain in my butt. I went to see the oncologist and listen to this, this is just how lucky I am..... I was diagnosed with a peryrectal abscess YIKES!!! It literally suck big time, they really hurt.I stop Cometriq on the 27th and had surgery on the 29th of July and again on the 6th of August. Surgery went well and we did not experience any scary bleeding disorder due to Cometriq. It was kind of scary but all is good.

The bad part is I cannot start Cometriq again until my wound fully heals. I have scans coming up this weekend on the 24th of August and I see Dr. Benjamin on the 25th and I am already scare for the results. I have had chest pain meaning things are changing one way or the other inside my lungs. I should probably have updated you guys once I knew the results but I had some time and just thought to share this. Apparently, the peryrectal Abscess is being blame on my bad immune system and according to the docs there is nothing I can do to prevent one, go figure. This last couple of weeks have been something...

Well, I am off to Md Anderson with prayers and hope that my stupid ASPS didn't use this time to get worse. I hope everyone is doing okay, and I am praying for everyone. Stay strong and with a smile guys.

Sincerely;

Mario

[D.ap]

Hi Mario
High 5 and keep the faith !!
Will write after I've figured out wth happened!!
Sounds like you are covered for the moment?
Love
The Ps
Debbie and family

[D.ap]

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 .

Mario,

It's me again to bug you
Have you had a echocardiogram ?
Just a thought
It's quick and would clear one less concern
I know that cometriq is "erosive to the veins " if you will and you had a weakness in the aorta / stomache area .
Tumors near major arteries can have a highway for metastis ?
I maybe so wrong but I needed to share it with you

Hope your localized pain is feeling better today

Much love

Good night
Debbie

http://www.cancer.net/cancer-types/sarc ... -and-signs


Sent from my iFone

[Bonni Hess]

Dear Mario,
I was away from the computer while on a boat trip for a couple of weeks in August and somehow missed your thoughtful update. I am so sorry for all of the pain, fear, and the 2 surgeries that you had to endure with the rectal abscess ( OUCH!! ), but am grateful that it was not ASPS related and that it was able to be successfully treated. I Hope by now that the wound has healed and the pain is completely resolved, and that you have been able to resume taking your Cometriq. I Hope too that your August 24th scans went well with good results showing stable disease despite the temporary discontinuation of the Cometriq, and I will be anxiously awaiting your next update when your time and the situation allow. In the meantime, please give yourself a gentle hug from me and know that you are held very close in my heart and my most caring thoughts even though I may sometimes be away from the computer and miss your posts.
With deepest caring, positive thoughts, healing wishes, and continued Hope,
Bonni

[cachabamba10]

Hey Guys!!!!!

Its been a while since I update everyone. It's been even a wilder ride for me this couple of months. Sadly, I had a third surgery around Christmas of 2014. Again as soon as I started Cometriq on two weeks in the abscess appear again and surgery was needed. At this point Dr. Benjamin told me that I had to be off Cometriq for a while to let the wound heal completely and then we would talk about starting treatment. On April 7 I re started Cometriq at 100mg dose a day. So far I am doing okay and I hope that I don't get another abscess.

This past 6 to 8 months have been a challenge. Its been up and down between surgeries and not being on treatment it has been tough both physically and mentally. My tumors in my lungs have grown to be quite something in size to the point that I am seeing changes on the way I breath.Its just sad but hopefully somehow we are able to get the growth controlled with Cometriq and have a positive view of the future.

I am very sad that we lost yet another asps patient here, its been like this for a while now. I hate this ASPS, I really do hate this illness.

Well, everyone please be safe.

Mario

[D.ap]

Hi Mario

I sure hope this next round of cometriq goes better for you.
What MG will you be taking and how often are CT scans performed?
I hope you will be consulting someone on eliminating the most dangerous lung tumors soon.

Soccer has started right?
We will be looking for soccer updates too.

Thanks for checking in with us.
I really hate this cancer too.

Stay well our friend.
We are all thinking of you alll the time and include you always in our prayers. I am sure of this.
Love
Debbie

[Bonni Hess]

Dear Mario,
I am SO deeply grateful and relieved to hear from you since it has been eight months since your last post in August which is always worrisome given the cruel nature of this insidious disease and the tragic losses that we have experienced in our ASPS Community. Of course we all understand and know far too well that the demands and challenges of fighting this difficult disease sometimes make it difficult to keep the Board updated, but we are always very appreciative and grateful when patients or their families are able to find the time, strength, and energy to do so.
I am so very sorry for your continued struggle with painful perirectal abcesses which have now necessitated three surgeries and interim discontinuation of your Cometriq for the surgeries and post-op healing. Does Dr. Benjamin think that your abcesses are caused by the Cometriq weakening your immune system, and that your concerning significant lung met growth is the result of disease rebound from having to be off of the Cometriq? Have you considered possible Cryoablation to try to shrink/destroy the largest most concerning lung mets? Other than the significant increased growth of your lung mets, have you developed any new mets anywhere else in your body?
My very best wishes and greatest Hope are with you dear Mario for a very successful response to your new Cometriq regimen with no new abscesses, and Hopefully the Cometriq will be effective in shrinking/destroying your large lung mets. When are your next scans scheduled?
I so deeply share your profound sorrow for the devastating loss of another precious Life to this insidious disease, and your immense hatred for ASPS. As we mourn the tragic losses, we all need to keep working together to fight this very challenging disease by sharing researched and anecdotal treatment infomation whenever we can, and continuing to relentlessly search and research for an effective permanent treatment and cure which Hopefully WILL be found someday VERY soon.
Take care dear Mario, stay strong and determined, know that you are always held very close in my special thoughts, and keep in touch as you are able.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni

[D.ap]

Hello everyone
Here is Mario's first post

http://cureasps.org/forum/viewtopic.php ... ario#p1584

[cachabamba10]

Hi everyone I just had my most recently 3 months scans check and it went good. I was finally able to stay on cometriq for a good three months and the scans show stability and small shrinkage of around 3mm to 4mm on some not all my spots in the lung. No growth whatsoever, I am glad. I will let you guys know how my next 3 month check up goes in January 24th.

Mario