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

[D.ap]

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.

Hi Connie and Kevin

We are so glad to hear of the pain reduction !
Thanks so much for the news.

When you talk of the ups and downs it brings up a phrase from a very dear and close friend who is fighting leukemia
He writes:

"I was diagnosed with leukemia 8 1/2 years ago. The time has flashed by. I’ve been back to work 2 1/2 years....that’s amazing. I can remember clearly that 4 years ago I did not consider the return to work an option. With the challenges that each day brings, I’m reminded of the gratitude I have to be a participant. This includes all experiences both good and bad. I find myself profoundly overwhelmed that I am part of this. I also frequently say to myself, “I could have missed this.” To repeat, there are no bad days just some that are better than others."

I can only imagine how as a patient's life can feel some days. You guys are my heroes


All our love,

Debbie and family

[Amanda]

YAY!! I am so happy!!!

Etables rock an help so many people!
I don't use them but many others i know do an they love them!
There is also a spray an pills that look like vitamin E pills that i have gotten for others at my COOP in W Hollywood

The patches he is using can be dangerous i know my hubby uses them for his back an make sure not a drop of any form of grapefruit in any thing...

Have you tried ginger yet for the tummy? I get crystalised ginger at Whole Paycheck an suck on that for tummy...

I am praying an holding you both in my thought and sending love and hope to you both!

[jenhy168]

Hi Connie - glad to hear kevin is doing a little better.

[Bonni Hess]

Dear Connie,
I am so sorry to have not responded sooner but I am just slowly being able to catch up on all of the Board posts after being away from the computer much of July with various family activities and travels. I am so grateful that dear Kevin is getting some pain relief and I Hope that it continues for him. Brittany uses the bucal Fetanyl oral lollipop swabs which are much more effective for her than the patches so this may be another option for Kevin if he needs greater pain relief. I am very grateful too that he finally received approval from Cigna to receive full insurance coverage for the Crizotinib and that he is now taking the drug I am holding VERY tight to Hope that the Crizotinib will be VERY successful in stabilizing the aggressive progression of Kevin's disease and shrinking/destroying all of his mets. When and how often will he receive scans to try to determine if he is having a successful response to the Crizotinib? If he continues to experience nausea from the Crizotinib as Brittany does from the Cediranib, we have found that IV re-hydration with 2 liters of saline as well as IV Zofran and Dilaudid every two weeks works very well to prevent the severe vomiting episodes associated with re-hydration caused by the nausea. I know that your time is very precious so I will close for now, but will be anxiously awaiting your next update which will Hopefully bring good news of stable disease and tumor shrinkage and Kevin regaining strength and energy. Take care dear Connie and know that dear Kevin and you are being held very close in my and my family's hearts and most caring thoughts.
Reaching out to embrace you and Kevin with special hugs, deepest caring, positive thoughts and energy, healing wishes, love, and continued Hope,
Bonni

[D.ap]

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

Kevin and Connie
Amanda has the way with words God bless her!
Was wondering how Kevin and yourself are doing after 60 days of Critozonib?
How's Kevin feeling after the WBRT?
Thinking of you both day and night

Love
Debbie

[Bonni Hess]

Dear Connie,
I was so glad and grateful to see your recent comment on Ivan's topic which Hopefully means that Kevin's situation is better and enabling you to have the time and physical and emotional energy to visit and post on the Board. I Hope that Kevin is doing well on his Crizotinib treatment and that it is working to stabilize the progression of his disease and to shrink and destroy his tumors.s Please give Kevin and yourself gentle hugs from all of us Hesses and know that our most positive thoughts and very best wishes are with both of you.
Heart to heart with deepest caring, healing wishes for dear Kevin, much love, and continued Hope,
Bonni

[Olga]

Hi Connie,
I wanted to ask re. mediastinal bone met - is Kevin having a significant pain from it? I do not know if you saw that our other ASPS patient had his insurance approved re-treatment using radiosurgery of his spine located recurrent bone met that was causing pain (Tom), so probably based on this one and also on a previous successful treatment of Kevin's pelvic bone met - you could start applying for a palliative treatment with the goal of reducing pain, that could work?

[wangcns]

Thanks for the advice, Olga. Kevin isn't having any significant pain from his sacrum met that was treated with SBRT, in fact we've been able to get him down to 50 mcg fentanyl patches. Kevin was showing the most signs of improvement maybe two, three weeks ago but I'm sorry to say that it's obvious at this point the crizotinib has limited effectiveness. As a last ditch effort, we're going to talk with Dr. Federman about gemcitabin chemo, but Kevin's breathing is now heavily labored, the tumor on his back right neck/shoulder continues to grow and is now the distinctive red that has characterized Kevin's tumors. He's been having deep coughing fits, so we're going to ask about getting him fitted with an oxygen tank. Also, I suspect more tumors, one in his right arm, and one below his sternum, possibly bone. I can feel growing lumps with my fingers when I massage him.

Insurance continues to deny PET scan so we're going to get MRI scans instead. Would be nice to just get an overall body scan instead of making Kevin go in for multiple MRI scans, it's very uncomfortable for him and he can only do one at a time now. Now I'm just trying to keep Kevin's strength up, his appetite is very poor so I'm going to try making soups and protein shakes. He is very tired most of the time now, though being the night owl he always is, he has a period at night where he's active. I am morbid and have been googling what to do in the last stages of cancer before death, and Kevin is classic advanced terminal cancer. The one comfort is he's relatively pain-free and is lucid.

We did manage to go to Hawaii and have a real wedding. I'm very happy we had a chance to make some great memories together there.

http://cowandcheese.smugmug.com/Hawaii- ... 4/n-dDgqV/

[D.ap]

Hi guys

I hope your day has brought you rest and good conversation as newleyweds?
You both are so brave in your stepping forward and giving us all an update..
I am so sorry to hear of your breathing problems, Kevin. And Conni
your efforts to be on top of the next step in Kevins care is truely a loving gesture AND nothing else.

Please know that we are always here for that ear and as close as a PM away at which time more personal info can be exchanged
Don't forget to ask for help at any point from family and friends--that includes us

A support group and checking into hospice care are both a good resource for any of us.
I want to point out that hospice care does not mean that we are giving up but gives us more resources and folks to help us in our time of need.


Love to you both
Debbie

[D.ap]

Hey guys

Are breathing problems as a result of the lungs?
That can be addressed if the case.

http://www.cureasps.org/forum/viewtopic.php?f=1&t=949

The following link gives symptoms and ways to combat them
http://www.cancer.org/treatment/nearing ... l-symptoms


Love
Debbie

[Olga]

Connie, thank you so much for an update and for sharing your beautiful wedding pictures, I love the color scheme and your bouquet as its essence. It is very comforting to hear that Kevin is not having any significant pain but I would support Deb suggestion that a palliative care team could be able to help him with the breathing? But I am not sure if scanning is continued when the person goes on to a palliative care? The link Deb gave is helpful in answering to some questions but I suspect that there are differences in the programs available in diff. areas. I also suggest you to read on the subject of Cachexia, appetite loss is one of its signs and might be caused by the muscle wasting. You can increase his muscles activity in a passive way - bending and moving his arms and legs, and it is good that you keep doing a massage on him. I am not an expert in this though, you read on the subject and let us know what makes a sense.

[D.ap]

Morning Kevin and Connie

I found this aspect of treating the appetite interesting.
Inflammation on the cellular level is tough on the mind and body so reducing inflamation the process can stimulate the appetite by decreasing depression.

The theory is using Eicosapentaenoic Acid , which are omegas , you reduce inflammation in the cells that have gone south in their care of the body by either just by having cancer or after chemo.
http://cholesterol.about.com/od/cholest ... /g/epa.htm

[Bonni Hess]

Dear Connie and Kevin,
CONGRATULATIONS to both of you on your marriage!! Your gorgeous wedding pictures are a beautiful reflection of the true love, commitment, and joy that you share together and I am so happy that you were able to celebrate that love and cherished memories together with family and friends in beautiful Hawaii. I am so grateful that you were able to find some happiness, smiles, and laughter in the midst of all the pain and anguish that you have been going through with dear Kevin's increasingly challenging battle, and I am deeply humbled by both of your incredible strength and courage. I am so very sorry and saddened that the Crizotinib appears to have been unsuccessful in stabilizing the progression of the disease, but applaud your continued efforts and Hope to find an effective systemic treatment perhaps with Gemcitibine, and am sharing that Hope with all my heart that something can and will be found. You have both fought this damn disease so courageously, with invincible determination, and with faithful devotion and dedication to each other, and you have been so gracious in sharing your journey and your treatment experiences and results with those of us on this Board. Please know that we are here for you to provide information and strengthening support for you, and continuing to hold you very close in heart and thought.
Sharing the great joy of your wedding with happiest CONGRATULATIONS and hugs, and the deep heartache of your increasingly challenging ASPS battle with deepest caring, healing wishes, much love, and continued Hope,
Bonni

[wangcns]

Hey all, I'm sorry to say Kevin has stopped the chemo. He began experiencing extreme respiratory distress about five days after his first infusion, and it would only be torturing him to refuse to accept the inevitable. I've put him on hospice home care and we're making him as comfortable as possible. Keep fighting the good fight, everyone. Much love to the courage and dedication you have all shown, and thank you for the love and support over these last few years.

[Bonni Hess]

Dearest Connie,
Thank you for somehow finding the emotional strength and graciousness of heart and word to write and share this profoundly heartbreaking news. My heart is broken for you and dear Kevin and it is aching so deeply as I know that yours is. I was SO VERY Hopeful that Kevin would have a successful response to the Gemzar chemo, but I was concerned about him being able to physically tolerate it as it is quite a harsh regimen. Together you have fought this damn disease so courageously and with every available weapon, and now together your courage and the deep love you share will provide the strength to sustain you through this final part of your shared ASPS battle. I am grateful that you have the support and expertise of Hospice to enable dear Kevin to remain at Home with you and to receive the care and medications to help keep him comfortable. Please feel the presence of my deepest caring and my love beside you on this difficult final journey, and give dear Kevin and yourself warm and gentle hugs.
From my aching heart to yours with greatest sadness, wishes of comfort and peace for you and dear Kevin, and all my love,
Bonni