Help Ray Beat Cancer / ACC !!
In 07/2008, two months before our wedding, my husband, Ray Welch (now 32) was diagnosed with Adenoid Cystic Carcinoma. This is a rare, relentless salivary gland cancer. There is no approved therapy/treatment for this type of cancer as it does not react well to any standard form of treatment. Being a rare cancer, it is not funded by the American Cancer Society and as my husband's treatment is not an FDA approved ACC treatment, rather an exact targeted therapy for his gene mutation, most cancer organizations will not provide assistance.
His initial surgery was two days after our wedding and was about 13 hours. He had a major reconstructive surgery of his jaw. He has now been battling this disease for 5 years. He had clear margins for the first two years after that initial surgery and radiation treatment. Right around that two year mark, we were told the cancer spread to his lungs and there was a spot around his collar bone (which he had surgically removed). We tried radiation and chemo; however, it did not work. At that point, it was a waiting game. The spots were still small, so we just monitored it.
We have now been advised that the cancer has spread to his rib cage as well as some to some lymph nodes around the liver area. Ray has been very strong through this entire process; however, one of his tumors has started to eat through one if his ribs causing him to be in extreme pain.
About two months ago Ray had his tumor profiled and was advised that he has two matched therapies available to him! This is wonderful; however, for two months we have been battling with the insurance company to get the treatment approved! The drug retails at $8,500/month! He will be on this treatment until it stops working. The tumor profiling alone was $5,800 and only a small portion of that has been covered by insurance so far.
We are still battling very hard to get insurance to cover this drug, but in the meantime, he is missing opportunities to play with his children and to enjoy every day life because of the pain he is in. At this point, we're just looking for any help for him to be able to continue on this drug during the appeal process.
The sad reality is, once this drug stops working, he'll need his tumor profiled again and we will start this process all over. This will be a never ending battle and the thought of an insurance company being the reason he will not get a drug that could save his life is unfair.
This treatment alone is $100,000 per year if we have to pay out of pocket. We're willing to accept anything and even $1 will help. We have never wanted to ask for help, but it's worth it at this point if it will save his life.
To all that donate; his children (Raegan (3) and Nick (5 months), wife Jen, and our entire families cannot thank you enough for believing that his life is worth saving!
Update: Now that this has gone far beyond our immediate friends and family, which I really never expected, I wanted to share a little more insight. Our family and friends know us, know our struggles, and have been with us through this entire process, so we stuck with the facts. Below is our entire story, for those who don't personally know us:
One day my fiance at the time, Ray, was at work. Something made him pick up the news paper that day. He decided to read the health section and there was an article about Oral Cancer. I got a frantic call at work and all I heard was, "I think I have cancer". We immediately scheduled an appointment with the dentist. He in-fact did have a mass in his mouth, where his wisdom teeth once were. They did a biopsy and we were given the diagnosis of Adenoid Cystic Carcinoma. At that time, the dentist said, "oh, it's okay. he'll have some skin removed and he'll be fine". We went on with daily life like nothing ever happened. Okay, he's got cancer, but he'll be cured of it here shortly....little did we know.....
We went to the specialist which we were referred to and were advised that it was a much different situation entirely. We were advised that he would need to have a portion of his jaw removed and replaced with part of his leg bone. This surgery was to be done immediately after our already scheduled wedding; therefore, we were blessed with an 8-day $400,000 honeymoon courtesy of our insurance company and the wonderful staff at University Hospitals. I did not leave his side. He had about a three month full recovery from that. At that point he ended up cancer free for about 2 years. In that time frame, we were blessed with a beautiful baby girl, Raegan!
Soon after she was born, we were advised that the cancer had returned and spread. He now had a spot under his collarbone and in his lungs. He went in to have the spot in the collarbone removed and a biopsy of the lungs. Indeed, the ACC had returned. He did radiation and chemotherapy; however, unfortunately, neither worked. The spots were small, so we just monitored them.
In the meantime, we were blessed with our baby boy, Nick. We went into the doctor's office after his follow up scan, while holding our two week old baby, we were told that it has spread, yet again. Treatment needed to begin.
We were told to try a clinical trial; however, he was denied from that as he did not have the right gene mutation. It took them two months to tell us he was denied. I decided I wanted them to profile his tumor. About a week later they sent it out for profiling. We were told there were two matched therapies, which is amazing!! This could be what saves his life; however, now his insurance company is standing in the way of him being guaranteed this drug. it has been denied and is now going through the appeals process; however, we have been working on that process for well over a month now. When we were told treatment needed to begin, he was not in pain; however, with all of the delays from the university conducting the clinical trial, delays from the doctor's office getting us results, and now the insurance company dragging their feet, one of his tumors has started to eat through his rib. He is in terrible pain.
He went from being an avid weight lifter, a very active individual, and a very involved father, to being someone who can hardly get around, can no longer play with his children, and cannot go one minute without being in pain. He has never smoked, done drugs, and has hardly ever even had a drink. It is unfair that an insurance agency can take someone's life away like this! He deserves to have the best chance at living a long, healthy life and I will do EVERYTHING in my power to give that to him.
He has worked through all of this, and many times putting in extra hours at work. He has been doing everything in his power to lead a normal life while beating this horrible disease!
We have now decided to take matters into our own hands. He will get that drug! We have graciously been given a donation to start the first two months of treatment, but these costs will continue to build. The unfortunate part is this is a cycle and once this drug stops working, we're going to be back in this same spot. Any donation you can provide, even $1 would be such a great help to keep Ray's fight going!
Thank you to anyone who has donated to my brother in law and my sister, it means so much to all of us, your generosity has been amazing!thank you all so much!
I may not be able to donate more than my prayers for Ray, as I live on disability. I wish you all much success in the endeavors to get insurance coverage for this medication. I will share your petition on my Facebook page. May our Most Merciful Father watch over and protect your family. Shelly Ann LPN (ret), A Proud Honorable Disabled American Veteran, 1970-94
Depending on how the employer set up the insurance plan,you still have some appeal rights and remedies. If the insurance plan is a regular, employer-sponsored plan, contact your state Insurance Commissioner and file a complaint and request yet another independent review by a board-certified oncologist. If the employer is "self-funded," then the insurance plan will be ERISA-protected and under federal jurisdiction. Federal is much more onerous, but in the end, may afford more options. (U.S. Department of Labor Employee Benefits Security Administration 2300 Main St., Suite 1100 Kansas City, MO 64108 (816) 285-1800). Your state Insurance Commissioner will be able to tell you what plan you have. Hopefully your oncologist has written a strong Letter of Medical Necessity on Ray's behalf. If not, you really need that!
Have you tried rxassist.org?
Research "Gerson Therapy"
Oh wow... I just signed and didn't realize I was tearing up while reading the whole thing. Good luck in your fight.
I just signed your petition and will try to spread the word to friends and family. May you win this battle and receive the care you need!
I just signed your petition. I can only imagine what you're going through, but I see that you are a very strong woman and I applaud your husband for not giving up and leading a normal life even though he's battling this terrible disease. Also, I'm going to have to agree with Kimberleigh Finnegan. I live in an island and I have heard wonderful things about moringa and soursop tea. Also, you should watch Food Matters, read Clean by Dr. Alejandro Junger and do some research about the Gerson Therapy. Please, do it!!! I don't recommend getting your husband off his meds, but it's worth looking into. We usually recur to traditional medicine to treat everything, but nature is equipped with everything we need. I wish the best to your husband and your family and I pray God gives you strength and healing. God bless you!
I've signed your petition at change.org and shared it with my facebook friends.I am praying that CVS Caremark will do the right thing and allow the drugs needed to be covered.Hang in there!People care.
I too have CVS Caremark insurance and have been denied coverage of my "off-label" medication even though it substantially improves my quality of life. I hope that these petitions & fundraiser are able to help you & your family shine a light on insurance company misdeeds & full out failure to enhance the lives of those they are PAID to protect & aid. I wish nothing but bright futures for you and your family.
I read your entire story, I also have a campaign on here for health related issues. I have something much better than money to offer you. I know the word cancer is terrifying but please don't let it rule you because there is healing. 1.) Read the book "Cancer Killer: The Cause is the Cure". 2.) Start following that book and use Organic products. 3.) View this website WWW.becknatmed.com 4.) If your husband has any filing in his mouth have him consult a mercury free dentist after speaking to Dr. Beck to see if he is healthy enough for treatment. I have battled relentless health issues for 11 years! There is a cure and drugs are not it. :-) Best wishes!
I've just recovered completely from stage III – IV thymic cancer using a combination of traditional and alternative medicine. I drink a cup of moringa tea every morning and a cup of soursop tea every evening and I replaced sugar in my diet with omega-3 fats. Both moringa and soursop are available on Amazon.com. I have a friend who also used the same regimen and he also survived the stage four cancer. You might want to give this some thought.
The only encouragement I can give you is, I hope you are taking Susan's message to heart about AHCC.
According to the research on the drug you are seeking, the risks are amazingly bad and potentially very fatal and the drug is being pulled by the manufacturer for these exact reasons. Look for a better alternative. This drug does not appear to have the answers you are hoping for. I only wish you and your family the best. It's why I even bothered to do the research.
I may not have money but I can send my prayers your way! I will share your story on my Facebook and maybe we can get something started. I will ask everyone on my Facebook to repost!
Jen, you should go read this...https://www.facebook.com/chrisbeatcancer it's a great story and maybe your only hope. It really works if you just open yourselves to it. You have nothing to lose...Good luck!!
Hello family. We are very moved by your story. We too have fought cancer within our immediate family, our son. We are unable to donate a monitory donation but can get your story out by sharing and asking our friends to share. I have signed the petition and have asked all our friends to do the same. Your family is in our hearts and will pray for your family.
Hi Jen, I'm a public health educator and direct Parents for a Safer Environment based out of CA. A friend of mine who is very sharp, Lana, did some research after her father was diagnosed w/ cancer, 4th stage. She found out that in Japan they give all chemotherapy patients AHCC. She got some and had her father take it and from being bed ridden, he became so healthy no one, including his doctors can believe it. The tumors shrank and all his tests came back amazingly closer to normal. If you want to talk to her, I'll put you in touch with her. Since, she has introduced it to many friends and family w/ other issues like immune related diseases, and she says they are all reporting that AHCC from the source she is getting it is helping. Apparently there are some mushroom extracts that have been known to be immune system supporters for centuries. But scientific studies have recently been published even via the NIH, and I'd be happy to send you them if you e-mail me. I will pray for your husband's recovery. This experience will make you one resilient woman, wife, and mother.
Dear Jen and family, I have known you since your mom and you came into my life at a young age. I'm so sorry about this I remember your mom telling all of us what was going on in the first yr you got married, and it is a terrible thing,I will help in any way I can I can't imagine what it feels like with the loving family you have and the kids are so beautiful . Hang in there I have faith...
im prayers are with u guys my six year just completed his chemo ge had neroblastoma he still recocerving from the effects from the cancer its long and tough journey to go through!! please let him know to remain strong and im very proud of him!