Kevin from California, US (Dx Feb 2012) - RIP Oct 17, 2014

[Bonni Hess]

Dear Connie,
It is so very kind of you to somehow find the time and energy to write to update in the midst of all that you and Kevin are going through.
Even though Brittany's ARQ-197 Clinical Trial oncologist discounted the effectiveness of tumor tissue sampling in helping to determine the best type of systemic treatment to pursue, we proceeded with it anyway with the gracious help of 'F' who helped coordinate a referral for us to obtain the molecular tissue testing. Brittany's tumor tissue tested high for VEGF-R and relatively low for Met, which we feel may be the reason she had an unsuccessful response to ARQ-197 which is a targeted C-met treatment, but a thus far very successful response to Cediranib which targets VEGF-R. Therefore, I agree with you and Kevin's doctors that trying a targeted Met drug rather than continuing/pursuing targeted VEGF drugs may be your best option, although I don't personally know if the targeted Met drugs like Crizotinib can cross the blood brain barriar to shrink/destroy/ prevent brain mets which Kevin will need so this is something which you will need to explore. I wish that Brian would write to update regarding MJ's Cometriq treatment results thus far, as well as Mario who began Cometriq treatment a few months ago, so that if they are having anecdotal treatment success, you might have a basis for appealing the Cigna rejection of the request for this drug for Kevin. Perhaps you could private message both Brian and Mario to request an update on Mj's and Mario's Cometriq treatment results thus far.
I am grateful that you are so pro-active and knowledgeable in your approach to fighting dear Kevin's increasingly challenging disease, and that he has you and your continued very dedicated care, support, and special love to strengthen him for his courageous battle.
Take good care of yourself dear Connie, give dear Kevin and yourself special hugs from all of us Hesses, know that our most caring thoughts and very best wishes are with both of you, and keep in touch as you are able.
Heart to heart with deepest caring, healing wishes for Kevin, much love, and continued Hope,
Bonni

[wangcns]

Hey! Good news! Straight from while working from a recording studio in Burbank, but I couldn't wait to share the news!

Olga and Ivan will not be surprised, but the radiologists screwed up reading the brain MRI. From March to June, they have seen no significant change in the brain tumors, neither enlargement of current mets or appearance of new ones.

YAY RADIOLOGISTS.

[D.ap]

Connie and Kevin

Thanks for sharing and including us all!
Where do you guys go from here?
When's the next scan ?
How's Kevin feeling ?

Much love
Debbie

[Olga]

Wow, does it mean that he saw the new mets where there were none? Compared to a someone's brain scan instead of Kevin's? Trying to figure out what exactly has happened.

[D.ap]

Hi Olga
I believe this is what Connie posted prior 2 weeks after the WBRT pertaining to scan reports-

"We just saw Dr. Federman yesterday and reviewed Kevin's brain MRI from last Tuesday. The WBRT does not appear to have been effective, as there is no change in the mets, some are slightly larger, and there are also new lesions. Of course, there is a good chance those mets were already present during the previous scan, just not large enough to see or perhaps the vertical slice didn't catch it"

So I think the scan previously was not read correctly?
I am sure Connie will get in touch one way or another
Deb

[Jorge]

Great news! Thanks for sharing. I'm so glad for you. I understand how hard and despair to fight the brain mets as I've been through a long time last year doing that.

The Anti PD-1/PD-L1 McAb(monoclonal antibody) are very hot this year. There are many good news of Phase 3 clinical trial on Melanoma or other cancer--like RCC which is the most close cancer with ASPS. As I know there is also one clinical trials open for Sarcoma in Brighan & Women's hospital.
You can see if the oncologist can find one for Kevin?

http://news.bms.com/press-release/phase ... 2270015169.#

[D.ap]

Lynette

Thanks for the input on the Anti PD-1/PD-L1 McAb monoclonal antibody
With this rare ASPS we certainly need all the info we can have to combat it as it changes and attacks our bodies .
I am hopeful that it gets us closer to a cure..

I've started a new topic apart from Kevin and Connie's postings.

http://www.cureasps.org/forum/viewtopic.php?f=1&t=892

Much love
Debbie

[Bonni Hess]

Dear Connie,
I so deeply share yours and everyone's great joy about this wonderful news , as well as the questions which Olga asked regarding what caused this kind of significant erroneous mistake by the radiologist in correctly reporting the scan results. During our now 13 year ASPS journey with Brittany we have certainly experienced radiologist mistakes, including the devastating one which inexcusably missed Brittany's clearly obvious spinal met resulting in Life threatening growth of the tumor, so we definitely know that radiologists as well as oncologists can and do make mistakes!! VERY thankfully, this mistake was made in Kevin's favor and resulted in VERY good and relieving news which I am SO grateful for and am celebrating along with you and Kevin . Please give yourself and Kevin happy hugs from me, and keep in touch as you are able. I will be anxiously awaiting your next update which will Hopefully bring more good news.
Sharing your good news with great happiness and relief, special caring, healing wishes for Kevin, much love, and continued Hope,
Bonni

[wangcns]

I'm sorry to share that I don't have good news. Seems like the brain mets were the least of our worries. Kevin's lung mets have pretty much exploded, in the typical snowball pattern that seems to display in late stage metastatic ASPS. It's causing him severe pain, like... a 9/10 and 10/10 on the pain scale. If I accidentally brush against Kevin if I lean over to pick up an empty cup, it elicits a sharp pain response. He can barely walk, barely move, driving him up to UCLA this morning was its own special kind of torture. He can barely think, he's in so much pain and even all the painkillers he's taking barely dulls it. He sits hunched in an armchair, not moving, just to mitigate the pain.

We consulted Dr. Littrup last year on his lung mets, and Dr. Rolle, but they both said at this point systemic was his best option. So we pursued pazopanib and everolimus and had gene sequencing done to determine what other targeted therapies might work, but then we ran into insurance roadblocks left and right. I still can't help but feel that large 5cm sacrum tumor that went undetected for god knows how long played a role in the aggressive spread of his disease. Even though we zapped it with SBRT and it appears stable now, who knows what seeds it sent out during all those months we wrangled with insurance to get radiosurgery done.

To clarify the mistake with the brain scan, From what I understand, they did a comparison with a brain scan that was taken nearly 16 months ago, instead of the March brain MRI (with a June MRI, with a month of WBRT in April). I don't know, I'm just as confused. But this would count as treated brain mets, so it would make him eligible for clinical trials, especially if he gets gamma knife to larger ones (they are all relatively small, but there are so many of them 25+). But the issue is not the brain mets now, it's the explosive growth of his lung mets.

The situation right now is that Kevin is at home with a whole slew of hardcore painkillers, from dilaudid to fenyl patches, oxycontin as an extra perk if the pain gets extra bad. I wanted them to admit him, but in all fairness, all they can do is attach an IV line and drip painkillers in him. Kevin didn't want to see the lung CTs after he got the news, so Noah and I went to go look at it in his office... and even without the training or knowledge to read scans I could tell he was fucked. Large, innumerable tumors throughout the lungs, attaching to chest walls and ribs, a bone metastasis in his sternum going rampant... I wasn't even aware that I was sobbing hysterically in Noah's office until both him and Marla hugged me. There's no way to resect, radiate, or do anything with that. Both lungs are completely compromised, part of the chest wall too.

I'm still desperately trying to get Kevin in on a crizotinib trial, a cediranib trial, but I have to say, I honestly don't know what good it will do at this point. I'm not sure what hope we have left. Not to mention we still have brain and sacrum met to consider. I am still fighting with insurance, but as Bonni pointed out, there has been mixed efficacy with all of these drugs. Can I really blame them for citing not enough evidence indicates this will help him? But as I'm sure you are all aware, just the chance to buy us some disease stability for a month, even a few months, is worth it to me.

My first and foremost concern is to get Kevin on a pain control regimen so that life is livable, whatever he has left. I don't want to pursue hospice care yet, because we still want to try some last ditch efforts, a more traditional chemo (forgot the name, sorry it's been an extremely upsetting day) and perhaps even the crizotinib if UCI ever fucking gets back to us. I call and call and they keep telling us they're waiting for authorization of something. I fight insurance on other days. I took to Twitter today and proclaimed to the Twitterverse that Cigna are a bunch of fucking assholes that need to burn in hell, as they continually deny treatments that could help prolong and improve my husband's quality of life (Foundation One gene sequencing, denied; radiosurgery, denied; PET scans, denied; crizotinib and cabozantinib, denied). Oh, what I love the most is after we decided to stop the everolimus as being too toxic, we get a letter from Cigna also stating that is also being denied. Hey thanks, I'm glad we got to at least sneak that in and try it, before you caught in and denied that too, Cigna.

I went on leave with my job today. I love my job but Kevin is more important, and because of the fundraiser our friends held for us I can afford not to work for three months. Kevin's work is incredibly supportive, I spent today calling all our close friends and coworkers with this depressing news. I'm very tired, emotionally drained, and constantly wonder am I giving up because I'm exhausted and just want this to be over, or because I realistically don't think there's any hope. I don't know. I'm in contact with Margie from Dr. Federman's office to figure out a good home care plan, possibly a pseudo-hospice care that would not prevent us from seeking active treatments. Asking my brother to stay with us during this difficult time.

I have called Cigna and spent hours on the phone with their reps. Noah and Margie at UCLA have compiled reports, done peer-to-peer talks, even Cigna acknowledged they've provided everything needed and then some. We got my husband's company involved, the corporate head of benefits had conversations with Cigna. They said they would consider overturning the PET scan and crizotinib while the doctors up top wrangled, but then I got another denial letter from them. I am taking to Twitter and Facebook to publicly shame Cigna. I posted to my pathetic 800 followers (I'm a game dev for a moderately successful video game) and lo and behold, Cigna suddenly wants to help me. It is absolutely a disgrace that this is what is needed to get services from an insurance plan that we spent years paying into. I am skeptical as to what help they can actually give me, but I'm not in a position to argue and will grasp at any straws and do whatever it takes to ramrod this insurance bullshit.

I will plaster our story all over the internet. It may be too late to help Kevin, and I'm certainly not blaming the recent turn of events regarding Kevin's cancer on them, but you know what? They certainly made this entire process SHITTY. I asked the doctors how much time they think Kevin had left, and after all the usual disclaimers they said based on the spread and size of the tumors, and Kevin's symptoms, maybe three months. While I don't hold with predictive numbers like this, I saw his scan and I see how much he's suffering now. Since we have no way to stop these tumors, the pain will just get worse and worse as they push against more nerves.

I'm not a religious person, but please pray. I'm very afraid the next post I make here will be to tell you all that Kevin has finally lost his battle.

[D.ap]

Connie and Kevin

We are here always for you guys whenever you need us....
I am so sorry .
Prayers are with you both today and all the days forward .

Love
Debbie

[Olga]

Connie, I am very sorry to hear about all the suffering both of you are going trough. It is my understanding, that under the hospice care some treatments are allowed - the ones that have palliative character. You need to consult the specialized pain treatment doc ASAP, there are some other advanced techniques that are only allowed during the hospice time, they make something to shut the signals from coming trough, like a permanent damage to the nerves. He also probably going to need an oxygen soon.
What is that conventional chemotherapy drug that is proposed to be tried? May be gemcitabine (Gemzar)? We actually had a patient successfully treated with it and since Kevin's mets are growing faster now, he has more chances to respond to it, and it is an approved second line soft tissue sarcoma drug (probably, I am not sure now).
You need someone to help you, you need sleep enough to be able to provide Kevin a good care during this difficult time, to be able to spend some quality time together.

[Amanda]

Connie <3
I am very upset at hearing this news! An my sadness is now anger at Cigna!
Please link your main post about Cigna here so can share it on Facebook...
I have some ratty friends that post an read my fb page an maybe they will get a hold of this an go after them
I will also let the company my husband works for know they are denying cancer patients treatments!

Sending you prayers an hugs!
The pain control is super important right now and the palliative care can be done also at home even if you are going to be looking for treatments so they can help him with an IV
I learned this with another friend whom was having bad pain also an they told us that they also do this to help with pain while treatments are researched...

[D.ap]

Connie and Kevin
I echo Amandas anger and her suggestions.
They are so accurate and helpful

Connie <3
I am very upset at hearing this news! An my sadness is now anger at Cigna!
Please link your main post about Cigna here so can share it on Facebook...
I have some ratty friends that post an read my fb page an maybe they will get a hold of this an go after them
I will also let the company my husband works for know they are denying cancer patients treatments!

Sending you prayers an hugs!
The pain control is super important right now and the palliative care can be done also at home even if you are going to be looking for treatments so they can help him with an IVI learned this with another friend whom was having bad pain also an they told us that they also do this to help with pain while treatments are researched...

Prayers are continuing

Love to you both
Debbie

[Jorge]

Connie, I'm deeply sorry about Kevin's pain and unfortunatly progression. And angry at what you've been through with Cigna...
I agree with Olga. The top urgent is to find a professional pain control doctor for some treatment to mitigate the pain. So that Kelvin can live a life not so painful.

I've seen patient with really really bad lung scans, live over a year. So don't think about how many times left. Controlling Kelvin's pain is the most important task now.

Big hug to you. Be strong. Just focus on what you can do.
Lynette

[Amanda]

I agree with Jorge because i know of cancer patients walking around with tumors years later and the doctors said they would not survive this and they did.. one or two are posters here!
one is from California!

I am so fed up with the surgeries i am even tinkering with the idea of going homeopathy and acupuncture...

OMG Dr Wen maybe able ot help with his pain!!! 310 360 7556
please call him he does acupuncture an maybe able to help this pain!!!

This man is from China an studied there and is very well known! Many cancer doctors refer to him because he is so damn good!

If you need help be only takes cash i will send him $50.00 or more to help you ... I think its not much other that an his thing he says is
"When others have given up come to me I will help you" He is a good man! Cigna won't reimburse as we both know..
i am not rich but i will help you pay the first appt to get Keven in there to get out of pain <3
He is a real chinese doctor not just an acupuncturist that is normally seen to treat cancers in China an if western isnt working please go to him <3