It started as a bad day. Two weeks ago, I woke up to the remains of an Emmitt Smith Projectile Vomit Episode, all over the carpet, of course. Then, I dropped a glass out of the cabinet… a glass that, as I put it away the previous night, I thought, “There’s a pretty good chance this will fall onto the counter.” And I balanced it in there anyway and was rewarded with a shower of glass shards. Bad things come in threes, as you know, and when I came in from my run, there it was on my phone: 407-898-5452. A message from Dr. Shroff at Florida Hospital Cancer Institute. I was relatively sure she wasn’t calling to say hi. I was right.
As it did last fall, my MRI detected something suspicious. Small, but big enough for Dr. Shroff to pick up the phone. Yesterday’s CT scan confirmed: The cancer is back. Or maybe it never left. Maybe despite my miserable winter with radiation and chemo, The Beast was just lurking there, waiting for me to gain some traction in my life so it could come roaring back out.
There are 4-5 small tumors in my chest wall (could be worse… could be in my lungs. How ironic would that be, for me, ME, to get lung cancer?) that weren’t there in April. I only half-heard him say it then, but now, I vividly remember my Huntsman oncology quarterback, Dr Akerley telling me in October that if the radiation/chemo didn’t kill this cancer, that’s all he had up his sleeve. We were hoping the ghastly treatment would buy me more time, but it didn’t.
I have no symptoms of anything bad, except that it’s still hard to breathe and I still have that annoying cough which no longer can be blamed on Kilimanjaro. Dr. Akerley says that’s left over from radiation and probably from the crap that’s been in the air since the weather turned here. You can bet that every new little tickle in my throat, cramp in my calf, or upset stomach is going to send me screaming back to Terry (Dr. Akerley’s nurse). It would be better for everyone, particularly Terry, if I get into a clinical trial sooner rather than later.
So now what? We are holding off on systemic chemo, because I feel pretty good. And I guarantee chemo would make me feel pretty bad. Instead, I am calling in every chip I have ever thrown out, trying to get in to a clinical trial called PD-1 or PD-L1. These are for drugs that are basically immune system inhibitor inhibitors. They turn off the governor that causes an immune system to stop working. Merck, Genentech, Medimmune, and my good friends at Bristol Myers are all running trials on this therapy. For me, it won’t be that easy to get in to one of them, though. Thymic Carcinoma is not part of the description for any of the trials because it’s so rare. The drug company would be admitting me to the trial knowing it won’t get any good data from me, really. They’d just be doing it to try to save my life. Now’s the time to call your friend/relative/ex-husband if they work at one of those companies, to convince them to let me in.
And what else? I’m not changing any of my many plans for the fall. I still have Lake Tahoe 70.3 on my schedule for September 21, although I won’t race it hard. I plan to go to Austin for the Ride for the Roses on my birthday weekend, to the PPD Beach to Battleship weekend to promote clinical trials the following weekend and more. I just have to be flexible about adding and canceling things. And I need to be ready to hop on a plane, if I get admitted to a trial. You know me: I’m always ready to hop on a plane, even if it’s United.
Three weeks ago, everything was fine. Today, I’m looking for a Hail Mary pass. I’d say this is a fairly graphic illustration of the fact that you have to live EVERY day like it could be your last. Luckily, I’ve been doing that for a while. And I feel pretty good… no REALLY good, that I’ll get into a trial for a drug that will extend my life AND let me keep my hair.
I have been a huge advocate of clinical trials for more than a decade. Now, I’m hoping it’ll be a clinical trial that saves my life. Not to be morbid, but at this point, it looks like that’s all that will. I am filled with optimism. And as you know, attitude is everything. Livestrong.
Wendy, will they consider you for ‘compassionate use’, even though you might not be in a trial group?
Will keep you in my heart and thoughts.
That is my hope.
I have been a fan since you were at WESH. I saw you at a Lady Trackshack race one time and my friends thought I had seen one if the Beatles…
You constantly amaze me with your great attitude and work ethic. I will be sending every positive thought and prayer that I can muster your way.
I also hope you have many more ski runs at Park City Mountain ( my personal favorite place to snowboard).
I hope you find a trial/ and or a miracle treatment.
Sincerely, Renee
Wendy you are in my prayers. And your attitude, as usual, is more than amazing. And can I add inspiring. I know you will NEVER give up because without actually knowing you this is easy to see. As you said before; relentless forward progress.
My thoughts and prayers are with you.I am a retired R.N., and would be willing to help you with whatever you would need.Wishing you well.
I so hope you get I to one of the trials. Wish I had some connections. I an opening will happen for you.
Wendy, don’t ever let anything beat you. You are in my prayers. May God bless you.
Wilmer
Wow, Wendy, that is quite a report. I know you will find the opportunity for a trial. If anyone can it is you.
You may not be aware that my husband Mark is a 7 year survivor or leukemia and 2 bone marrow transplants. His prognosis was very poor and he was not expected to live by any measure of science. However, like you, he pushed through every door, window, and more than a few flaming hoops. Attitude is everything.
Though I have not reached out to you throughout your cancer journey, I have been watching you and cheering you on. You are an inspiration. Best wishes to you as you forge forward.
xo-Dyan Goodman
PS. Now I work for American Cancer Society where I pay it forward everyday. Take care.
Wendy you are in my prayers.
Wendy, praying for you. You can beat this once again.
I will be praying for you and that you will get into a trial. Prayer can change things!!
I am keeping you in my prayers warrior woman! Hugs from Montana-
Meeaow meeaow meeaow, meeaow meeaow!
xoxoxo
-Stuey
You are my hero!
Wendy im praying for you. Kick cancers ass. In the darkest hour never give up never retreat give it all you have. Your battle scars are worth it. Love you 🙂
Wendy,
Your courage, optimism, and leadership are an inspiration to everyone who has faced The Beast. You are in my prayers as you go through this journey. It is a journey you alone have to take, but to know that you have friends and supporters who love you and cheer for you may help to make your journey easier. Hugs, Lynn
I’m forwarding your request for a Hail Mary pass to my contact list. In the mean time, perhaps you might consider a hop, skip and jump over to the Mary Medical Clinic. (wouldn’t it be ironic if that was your Hail “Mary”?!)
Stay busy with that positive attitude!
http://www.maryclinic.com/about.html
Dear Wendy,
I have read your posts courtesy of our mutual friend Donna N. and have been a fan since your days at WESH (like a previous post). I no longer have contacts at Bristol Myers – its been 18 years – or I would call in everyone I knew. In the meantime I will pray for you. I will leave you with these thoughts passed on to me from a friend when I was going through a difficult time:
“When you are going through something hard and wonder where God is, remember the teacher is always quiet during a test”.
Stay optimistic my friend, you are an inspiration to many of us!
DG
Wendy-
No words… Just prayers!
Keep fighting Wendy. I know you can beat this. And keep living every day to the fullest. Nothing is more inspiring than you and Stu’s attitude towards this challenge. LiveStrong.
Is there a reason you’re only looking at these particular trials? A quick search at clinicaltrials.gov shows a few studies geared towards thymic carcinoma are currently enrolling.
I wish you the best. My wife fought cancer hard for 3-yrs and I was with her every second. When I say I understand where you are, I’m pretty close to knowing. Cancer sucks, never give up. I ran and biked for 30-years, so I’m glad to see you continuing your schedule. Live for today! Best wishes- Mike.
Hi Wendy, I’ve been a fan of yours since you were on the news here locally with Marc. i always admired your drive, your passion, your get up and go. I just wanted to tell you that you are brave to share your story and my heart goes out to you. If anyone can beat this, you can. I just know it.
Wendy – so sorry to hear and I appreciate you being so public and vocal about this. I have some friends at Merck and Genentech that I will gladly reach out to.
thanks,
Andre
Wendy, I’ve seen your story before and may not have reached out because I wasn’t sure there was anything I could do for you. I’m pretty sure there still isn’t. BUT, I guess I want you to know that my husband, Eric, lost his 7+ year battle with Thymic Carcinoid in 1999. He was 28. He was a photojournalist at the CBS affiliate in Burlington, VT, and even the subject of a special series aired by this station on surviving cancer. At any rate, he lived a healthy lifestyle before his diagnosis. He did surgery and radiation and eventually did do chemo (cisplatin), but also some experimental treatment, as well as alternative. I don’t know what could possibly be useful to you, and I won’t get into details here, but know that if there is anything you think you might be able to glean from his experience, I would be more than happy to try to help. I know how rare this cancer is. I don’t know that yours is carcinoid, or how important that difference is as far as whether his case is relevant. But I’m here! If not, I do wish you all the best and more.
Wendy,
Reading your blog post brought me to tears. You have so much admirable strength. Keep fighting. And remember, no one fights alone. You have a team of warriors behind you.
Allison
Thinking of you Wendy and hoping for the best. You always have such a wonderful attitude, you’re a great role model. Hoping I make it to PC to make some turns with you this winter.
Wendy,
Have you talked to the patient navigator at LIVESTRONG/ PAF about “compassionate use” for the trial? I’ve seen the exception made before. You are otherwise a healthy individual. Push that envelope. Keep it up and know you’re supported.
Brooke
GOD bless you and keep you Wendy.
always the best to you:
as help while waiting you might want to do a consult with Ralph Moss from Cancer Decisions (check out his web site under that name). He has tons of connections, traditional and integrative, and might be of assistance. The consult has a fee but might be worth the trouble—you can send an email first to see if the consult makes sense. I hope it works for you! Other immune stimulating therapies exist—like Coleys Vaccine therapy and then there are supplements (mushroom therapies) that can help. Also of a naturopathic nature is ozone therapy…. The Moss reports list a number of alternatives.
How does this bastard keep getting up after all the smack down you’ve given it?!?!? Will rack my brain for any available connections and, of course, keep you in my prayers. peace-k
You are a fighter. I believe in you. I believe that you will beat this, again. I agree that your attitude is of utmost importance! We love you and are here for you! FIGHT!
Wendy, I would like to pray for you. I am one of those wacky people who believe that God wants you healed. I have prayed for many and have seen them healed. One of my friends had a 10cm cyst that caused immense pain and would have required surgery. I prayed, God healed instantly! The doctors at Walter Reed NMMC confirmed the miracle! I don’t tell you this to boast in myself, but rather in my God. He loves you Wendy, a lot! He didn’t give you this cancer. He gave you life and He loves that you live it! I want to pray for you so you can continue living it cancer free, pain free, just free! So, here it goes: thymic carcinoma, I command you in the Name of Jesus, to GO! You let go of your hold on Wendy, RIGHT NOW! All tumors, dissolve RIGHT NOW! All pain GO in Jesus’ Name! Wendy, I speak LIFE and restoration to your body in Jesus’ Name! LIFE, you will LIVE! I proclaim freedom, freedom from cancer, in Jesus’ Name! Thank you Daddy for the love and life that you have for Wendy! Amen.
Wendy!
I am formerly of Orlando and used to follow your medical history on WESH. Somehow, I was sent to Fresno and then wound up in Nashville. Today, I saw this article on a friend’s FB timeline. It wasn’t clear who it was about until I dug in a little bit. Wow, just when you think things are well for someone you cheered on to wellness, BAM!
My husband ran some marathons alongside you; you’re an excellent runner!
Many people have survived more than one round with the beast that is cancer. You are indeed one strong woman who has resources far beyond the scope of many.
I pray for so many people, that I maintain a “prayer list.” I am adding you to my prayer list, one more time, and you will placed in God’s care, one more time.
Fight the good fight, Wendy and bring back a clean bill of health, one more time!!
Addendum from above comments…I have said that I live in the Nashville area, thus: Vanderbilt University, where amazing things happen.
I looked up clinical trials for thymic carcinoma there and found this link:
http://www.vicc.org/search.php?q=clinical+trial+thymic+carcinoma&sitesearch=http%3A%2F%2Fwww.vicc.org&submit=Search&site=vicc&client=vicc&output=xml_no_dtd&as_dt=e
Or simply look up Dr Kenneth R. Hande, M.D.,
Professor of Medicine (Hematology/Oncology); Professor of Medicine Pharmacology; Medical Oncologist. His office number is listed as 615-936-8422, in the Cancer Research Department of the Vanderbilt-Ingram Cancer Center. There seem to be several clinical trials available at the website above. (Copy/paste)
There is a phone number as well: Clinical Trials Information, please call at 1-800-811-8480.
I have several Vanderbilt Dr’s and I am so glad I have found them! I hope you have the same success.
Best of everything!!
-Joyce
Wow! I am so sorry to hear this.Round 2 huh? Well if Anyone can beat this again it is you Wendy! God Bless you and your family!
Wendy, my mom and I had lunch with you at Houston’s after a tour of WESH studios years ago and at that time I hadn’t been diagnosed with my own bout of breast cancer. 2004 and thankfully still in remission… Dr. Z at Florida Hospital put me in a clinical trial back then and I just happened to get the arm using Herception and chemo combo and it saved my life so I’m a big fan of clinical too. I’m praying that you can get it one now. I’m sitting here in tears reading your words of living each day like it’s your last. You’re so right. Please take care Wendy.
Wendy,
Many prayers are being lifted up that a clinical trial will open up. Stay strong. You are an inspiration to many, helping all of us to Grow Bolder!
Sally
Wendy,
I have a friend in California with a very rare form of cancer. He a well spoken and bright guy in many aspects of life and is going thru Kemo as we speak. He has done a lot of research including effects that hash oil (yes) has on cancer cells. I’m including his Facebook page that, if you comb some of the post a month or two ago, he list a lot of documentation that he has gathered.
When it comes to your life, all options should be on the table. He is doing the Kemo AND hashish simultaneously as it takes it a month or so to start having an effect. His discovery and subsequent prognosis has him in far more of a final stage than perhaps you are, which gives you a much better chance of survival.
https://www.facebook.com/ron.mcafee.7?fref=ts
Ron is quite the character. Don’t let his looks fool you. very intelligent guy. Above is the link to his page. Ma y take a while for him to answer but stay persistent to check in and please use my name BobLee as a reference. He will totally understand and help if he can. Once he accepts your friend request, scroll down his page to about the end of June and you will see some of his note, photos etc.
If you need any help for anything contact me at my email address BobLee@LifeOrlando.com or http://www.Facebook.com/BobbLee
Stay strong!
Much love,
BobLee | Orlando
Hi Wendy
Check out the American Cancer Society clinical trials matching service. You can register online at cancer.org or by calling 1-800-303-5691. They will even assist you in contacting the treatment coordinator directly.
Best of luck to you and may God bless you.
Wendy, have you discussed a “compassionate plea” with your doctor where you can receive the drug because of exceptional circumstances. Your doctor would write the drug company on your behalf. This is commonly used when other more standard treatment options have been exhausted. Sometimes they may even change the protocol or give the drug for off label use. Good luck, there are so many strong women fighting this. Keep up the work.
Hi Wendy, I just saw a bit about your story on one of those TV sites. This marks the first time I’ve found one of them to be useful:). I just wanted to let you know that I am what I am sure are many strangers in the universe rooting for you. I am also a canSer fighter having battled it from 2010-2012. And by the way, I deliberately misspell canser in order to disrespect it. I got that from terminal canser survivor and author Kris Carr (she’s still kicking her tumors’ butt 10 years later).
I want to pass a saying along that a stranger on a train gave to me back when I was bald and miserable: “Courage is being scared to death and saddling up anyway”. I thought of it often and the fact that John Wayne is behind it made me laugh.
Saddle up!
Carla
Words seem trite – so I”ll just type that we’re praying for a door to open.
Hang in there! My husband has been battling the prostate cancer beast since 2008. Dr. Alemany of Florida Hospital Cancer Institute always has another trick up his sleeve to keep the fight going, I’m hoping that Dr. Shroff does also. Cancer sucks, but you can do this!!
Hi Wendy –
Brent just relayed the news, so sad to hear of this. Sending you love, courage and optimism. Will be thinking of you and sending positive vibes. You are a conqueror. You will win.
Best,
Owlman
Wendi my bone cancer of three yeas ago is back also and it brought MDS with it this time. At 75 I don’t know how much of a chance I have this time. I and we will be praying for you to whip your cancer. Keep a good heart love.
wendy,
praying for you to beat the big c again. be strong and kick ass.
linda
Wendi – Sending lots of positive thoughts your way – as a 2 yr breast cancer survivor, I so appreciate the example you have given me! Worked for Bristol Myers years ago – checking my contacts to see who is still there!
#Livestrong
Mary
Wendy, you may remember me from the VisionQuest camps, I’m a friend of Natalie Schaefer? I do have senior contacts in the immunology divisions at Genentech and BMS, could we chat on line some time? I will gladly do whatever I can.
Wendy I feel for you and wish you the best. My husband and I have raced in triathlons with you in Brevard county. Glad to see you are keeping your spirits up and pushing for your cure. Keep up your research and you will find your answers. I have Niemann-Pick Type B, a rare lysosomal storage disease. I am one of 5 people in the world receiving an experimental lab created enzyme. I have been traveling from FL to MSSM in NYC every 2 weeks for a clinical trial for ~1.5 years and have >4 years of visits to go. I waited >30 years for a treatment.
I have been very impressed with MSSM and read an article about doctor Eric Schadt there who runs gene sequencing on patients with rare cancers and recommends existing drugs to treat the individual’s cancer. Although I believe he can only study a few people at a time since the process is lengthy, I suggest you contact him. I added some links below; however, I could not find the original article describing how he was helping a woman with a rare cancer who had no other hope.
Some other links below you probably have already found. One is my favorite place to search for clinical trials although some are overseas. I emailed a doctor running a trial in Paris who helped me make important treatment decisions when my daughter suddenly had a life threatening disease. It is worth reading every relevant trial past and present and contact study doctors who might be helpful. I am not sure if US patients are allowed in overseas trials but worth checking into.
http://www.genengnews.com/gen-articles/the-schadt-equation/4694/
http://www.mountsinai.org/profiles/eric-schadt
http://www.mountsinai.org/patient-care/service-areas/thoracic-surgery/research-frontiers
http://clinicaltrials.gov/ct2/results?term=thymic+carcinoma&Search=Search
http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/compassionate-drug-use
My daughter suddenly developed a different rare disease than I have, Severe Aplastic Anemia, and almost passed away 1 year ago. She is healthy today from blood donations, immunosupression, and fresh wheatgrass juice. Remember the power of perserverance, positive attitude, prayer, healing foods, exercise, love, laughter, hope, and all those things that made you the brave woman you are today.
Hi Wendy,
I am sorry to hear about your health challenge. Have you looked at alternative immune therapy.I am
a cancer survivor and have been using this therapy which support the structure and function of the immune system. I would be very happy to share this info with you. In the mean time stay positive.
Best wishes
Edward
Wendy,
I am new to your blog. But I was wondering if you have considered stem cell treatment?
Ashley
Hello-
A friend who works for in Merck sales suggested your doctor submit your name for their EAP program. You likely have heard of this avenue, but I’m listing just in case.
The web link for the FAQ is http://www.merck.com/about/eap_faq.html.
Your physician must submit your name for enrollment. Physicians in the U.S. who are interested in enrolling a patient in the EAP should contact Idis at 1-855-478-4347 or via e-mail at mk3475us@idispharma.com
Best of luck to you and I hope you find a trial.
KT
Wendy, so sorry to read about your recent diagnosis. My wife is an RN and worked as a cancer nurse for 25 yrs, including the initial clinical trials on testicular cancer in Indiana and here in Florida with Dr. Arthur E. Frankel, a leading cancer research specialist. We met you briefly at an AIDS conference once (my sister in law was the director at Hope and Help Center) and always looked forward to seeing you when you would show up at the Headdress Balls.
We will keep in our prayers and hope you get into a trial.
Take care…
Ian & Jeanne Lindsey
Keep fighting. You are an example to many.