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

[Bonni Hess]

Dear Connie,
I am so deeply sharing your immense anger, frustration, sorrow, and pain, and am devastated by the extremely heartbreaking news which you so thoughtfully somehow found the emotional and physical strength to share with the Board. I wish that I knew of a miracle treatment for dear Kevin, but I echo everyone's sentiments and their advice for you to seek some type of immediate help to provide pain relief for Kevin's heartbreaking suffering. You said that he is currently using a Fetanyl patch, but I am wondering if an oral bucal Fetanyl lollipop like Brittany uses would be more effective since she found it to be much more successful for her chronic spinal pain relief than the patch was. Also, Brittany gets only very limited relief from oral Dialudid, but finds the IV Dilaudid to be much more effective so perhaps in-Home IV pain meds could be arranged for him if he does not want to be hospitalized to receive them. I know how very dismal, discouraging, and overwhelming dear Kevin's prognosis is right now as Brittany's was for us five and a half years ago when we learned that her disease had devastatingly become very aggressive with widely disseminated mets throughout her body including an unresectable/untreatable met in the head of her pancreas. I unfortunately also know the harsh reality of this damn f***ing insidious disease, but there is always Hope until none remains so it is my greatest Hope that a systemic treatment like the traditional chemo Gemcitibine (Gemzar) the Olga suggested could be tried and be effective in stabilizing the aggressive progression of Kevin's disease and shrinking/destroying his innumerous and widely disseminated mets. Like you, I too am not a religious person, but I believe in the power of postive energy, positive thoughts, and love, and am sending an abundance of all of them your way. Please know how deeply dear Kevin and you are being held in my aching heart and my most caring thoughts, and feel the embrace of my gentle hugs, my deepest caring, my healing wishes for Kevin, my love, and my continued Hope,
Bonni

[wangcns]

http://cowandcheesehealth.blogspot.com/

As an update, the Cigna rep for Kevin's company (Activision Blizzard) called yesterday and said they are going to approve the crizotinib. I am suspending my relief, because today I got a call from the pharmacy saying they don't have approval, pending authorization from Cigna. The loop just goes on and on and on. I spent all morning on the phone with medical equipment suppliers, turns out you can get everything cheaper through Amazon.

[wangcns]

Bonni, I really love you. Your words filled me with hope, even though I feel like I have none. Thank you for that, thank you.

[wangcns]

All of you, thank you so much. Sorry, I'm only now going back and reading everyone's posts. All of your messages of support are buoying up more than my words can express. I will contact the acupuncturist, Amanda, thank you so much for giving me his number.

Kevin is getting a line in on Monday, when we go back to UCLA. They wanted to do it this past Monday, but for a variety of reasons could not, so we have to go back. I will ask about the Gemzine and the lollipops.

Sorry if I seem abrupt, please know that I appreciate each and everyone of your posts and messages filled with advice and caring. I feel like I'm fraying at the edges, but I have to keep going for Kevin.

[wangcns]

Noah's response when I asked about Gemcitabin

"Gemcitabine with Docetaxel (Gem/Tax) regimen was one of the options we discussed on Monday. I would use both together if we are going to do it rather than single agent gemcitabine. It is a reasonable regimen to try which is why I brought it up. The only issues are greater toxicity and more frequent clinic visits. I would favor continuous Ifosfamide first over gem/tax"

[Olga]

Connie - I suggested the single agent gemcitabine versus GemTax because:
1. The regression of mets our patient had was on a single Gemcitabine the story is here:
http://www.cureasps.org/forum/viewtopic.php?f=28&t=389
2. Adding taxotere icreases toxicity of the regiment by so much that I am not sure Kevin is going to able to tolerate it at all and that may cause him dropping the chemo. May be he can start with GemTax and later drop Taxotere and remain on a gemcitabine if it is to hard to have both? I do not know.
3. I have nothing to say re. ifosfamide, I do not have any success stories to share. We do have something about other chemos, read the success stories to see what might be useful.

[Amanda]

Connie,
omg does he work for World of Warcraft here in OC area? If so thats crap! They have had other people there with cancer before and though this was before the company was bought out they backed their people
His is a computer code game zone also like your house lol

Anyhow, let me know what happens an again i am here if you need me.. <3

[D.ap]

Noah's response when I asked about Gemcitabin

"Gemcitabine with Docetaxel (Gem/Tax) regimen was one of the options we discussed on Monday. I would use both together if we are going to do it rather than single agent gemcitabine. It is a reasonable regimen to try which is why I brought it up. The only issues are greater toxicity and more frequent clinic visits. I would favor continuous Ifosfamide first over gem/tax"

Connie and Kevin
I know you had a ( corrected at 8:59 today ) molecular profile performed. Maybe another resource to consider for the team of doctors?

This is from our home page and was posted in 2011.

The following maybe is known by Dr. Federman but just in case he wasn't aware of it, I wanted to post

Research on ASPS presented at the conference of the “American College of Medical Genetics”

19th April 2011


Dr. Shamini Selvarajah presented a summary of her studies on Alveolar Soft Part Sarcoma at the 2011 ACMG Annual Clinical Genetics Meeting that took place at the Vancouver Convention Center, Vancouver, BC, Canada. Dr. Selvarajah is one of the dedicated scientists from the Dana Farber Cancer Institute in Boston. They study ASPS relentlessly, aiming to understand the biology of this tumor and develop novel therapies which are in such a need for ASPS patients.photo.jpg

The work presented at the ACMG meeting included the identification of 323 genes which are specifically expressed in Alveolar Soft Part Sarcoma tumors. 207 of these genes are mostly abundant in the primary, and 116 of them are mostly abundant in ASPS metastases of 12 patients whose tumors were analyzed in this study. The 323 genes represent 16 key biological processes, gene signatures, and pathways that can be targeted in future studies.

[wangcns]

Yup, Kevin worked on two expansions for World of Warcraft and now works on Diablo 3. I'm not sure why we've run into the difficulties we have. Maybe Obamacare (of which I am a strong supporter and actually feel should have pushed harder to socialize medicine in the US, but shrug politics. I am seriously considering moving out of the US) has caused insurance companies to find other ways to save money? Either way, at this point it doesn't matter. I'll sue Cigna in some other lifetime.

Thanks for the info, Olga, I'll bring it up to Noah again. We see them next week.

Oh yes, crizotinib was approved, btw. I don't know if the social media stink I put up about it had anything to do with it, but I I got a phone call the next day after someone from Cigna responded to my tweets. We're still bogged down by some kind of benefit verification authorization stuff. Even our Cigna rep is frustrated.

Hospital bed just got delivered. Fully covered by Cigna. Yay. Some victories, some losses, I think I'm going to call it a day.

[Amanda]

Hello,
Well let me know i can push this off my FB page an other gamers an such will see this...

Obama care has hurt so many i know i have lost count
One a single mother who has now been ill for 8 months an has almost given up

Beautiful thoughts of care were interweaved with greed and corruption personal agendas and now this is what is happening

If his plan is the Cigna that is obama care this is why it is happening If it is ask work to switch this...

Or maybe they have a different plan at the company they can move him to..

Anyhow, let me know about the Dr i gave you the number to.. I will also be seeing him soon

[wangcns]

Kevin is not on an Obamacare plan, he's insured through his workplace and has secondary insurance through my workplace. Honestly, American healthcare is just absolutely fucked up and that's all there is to it. Healthcare should not be a business, but I'd rather not get into politics here.

I do have some good news. They are sending the crizotinib overnight (supposedly), so we are not pursuing chemotherapy anymore. Kevin is doing much better, on 100mcg of the fentanyl patches and the dosage seems to have achieved a good equilibrium. Kevin is lucid now and is actually fairly active and pain-free in the evenings, he mostly sleeps during the day.

Cigna is paying the full cost of crizotinib, no co-pay, no deductible. They also paid in full for the hospital bed he's using, but not any of the accessories which is fine, I just ordered them all off Amazon anyway. (exact same model of bed tray was $128 cheaper on Amazon than through the medical equipment supplier).

[Jorge]

I'm so happy to hear the pain is under controlled and crizotinib is approved and sent overnight. It's a relief to all of us.
Wish Kevin a successful response to crizotinib and mets be shrinked or stabled.

[D.ap]

Connie and Kevin

Great news ! So glad to hear of pain being managed .
Also about the Crizotinib
authorization .

Keep us updated as you are able .

Love,

Debbie

PS I corrected to a protein kinesis inhibitor instead of TKI. As I understand it the drug functions as a protein kinase
Did a forum search and realized not a TKI by virtue and discussion

Attached definition of Crizotinib and what a protein kinesis is..

http://en.wikipedia.org/wiki/Crizotinib

http://en.wikipedia.org/wiki/Protein_kinase_inhibitor

[Amanda]

YAY pain stopped or almost gone! )

I am trying to control the pain i have now an i think i will need to see someone...

I am so happy they snapped up an are taking care of him an that they sending the med overnight )

As for insurances ya its ugly i know But, I hope in the future things get ironed out an allis what it should have been

Ok hurts ot sit here lol
Hugs and laying down ..
I know he knows how awesome you are an it shows here in your posts he is lucky ducky to have you
Send your hubby a hug an ask him to hug you

[wangcns]

Thanks everyone!!

I have great news, Kevin is doing much better. He's had some ups and downs the last few days, the crizotinib definitely has some side effects so far, mainly nausea, but we've found a bit of cannabis edibles first thing in the morning helps a LOT, along with Zofran and some Famotidine first thing. He doesn't take any dilaudid now, the fentanyl patches are doing their thing. He's even getting up and moving around by himself, mainly moving to the couch and the bed and back, though he can also get up and pour himself some cereal.

We go back to UCLA next Monday.