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It’s been almost two weeks since I’ve really updated my blog, and a lot has happened since then. Last week was very busy for us as my husband and I traveled to Indianapolis to be with Tyler as he went to see Dr. Einhorn, whom is the best Oncologist in the United States that specializes in Testicular Cancer and it’s many forms. As many of you are already aware, my oldest step-son was diagnosed with cancer about a month ago, that is in stage four. We have learned a lot more than we ever wanted to know in the past month about cancer, especially the kind Tyler has. For this post, my husband is co-authoring with me.

First, I want to thank my friend, Diane, for suggesting we buy a nice recorder to record everything the doctors say (we found an awesome digital recorder). We’ve listened to the recording many times and have decided to have it transcribed since we may not always have our laptop with us. I have a feeling this will come in very handy for us in the coming months.

Tyler has Choriocarcinoma, which is a very rare and aggressive (quick growing) germ cell cancer. It has metastasized to his liver, retroperitoneal cavity (anatomical space behind the abdominal cavity), his abdominal lymph glands and likely in his lungs (the final report cites innumerable pulmonary nodules that were below PET scan detection). We were informed on the 14th, that it had NOT metastasized to his brain, thank God! That was our first piece of good news since all this began on January 25th.

This kind of cancer bleeds out, causing some internal bleeding. He’s had two blood transfusions thus far, with probably several more on the horizon. He just finished the first of four rounds of BEP chemotherapy a bit early, having  had seven days of it. He begins his second round in a little more than a week. He faces the possibility of two courses of high-dose chemotherapy and a peripheral blood stem cell transplant if his HCG levels do not normalize and remain normal after his four rounds of BEP chemotherapy.

In writing this, not only are we reporting what is going on in our family, but we also want to spread awareness. We hear so much about breast cancer, but not enough about other forms of cancer. Folks, if you notice something that is not quite right in your bodies…an unusual mole, a lump, an enlargement, any kind of pain that lasts for more than a week, etc…please please PLEASE do not put off going to the doctor to have it checked out. Teenagers and young adults, please do not think you are invincible; that only bad things happen to other people. If this cancer was discovered a year ago….it may not have progressed as far as it has. Please don’t neglect your health. Everyone should regularly self check every inch of their body for anything unusual.

Please continue to lift up Tyler in your prayers, that his HCG levels normalize and remain normal. Please lift up his parents, step-parents and siblings in prayer….we all need it. Please pray for a complete and total healing for Tyler. Please pray for peace, comfort and strength for the family. Please pray for the doctors and nurses as they care for Tyler. We thank you so much for your continued prayers for all of us. We have faith that Tyler WILL beat this!

FIGHT ON, TYLER!

 

25 Responses to “Choriocarcinoma – A Form Of Cancer You’ve Probably Never Heard Of”

  • Sara says:

    Oh my goodness, I am so sorry that you are going through this! I’m glad to hear that he is seeing such a well known specialist. No one should ever have to go through this but unfortunately cancer can affect anyone at anytime. Awareness is one of the biggest weapons that we have and I’m so glad that you are sharing your story so that hopefully others will take the time to check out any abnormal lumps, moles, etc. Your family is in my thoughts!

  • I am so sorry that he has to fight cancer at such a young age. Sending love, prayers and strength to you all.
    xoxo
    Leigh

    • April says:

      Cancer sucks any way you look at it, but it’s especially hard when the patients are so young. Thank you so much for the love and prayers!

  • Wow. You wrote an incredibly informative, clear and helpful post in the midst of such a painful time. Thank you for using your blogging platform to help others. Our prayers are with you all, especially Tyler and his oncology team, as you face this battle.

    God bless.

    • April says:

      Thank you. I will be updating my readers as we go through this very hard journey with him. It’s hard to write about, but it’s something that we have to do, if only to help spread awareness. A cancer diagnosis is very devastating to a family, especially when this particular kind is so rare. We are very thankful we have such a large support system and have found doctors who have treated, with success, this form of cancer before. Thank you so much for your prayers…we all appreciate them. God bless you!

  • Sharon Green says:

    Cancer is tragic especially in young innocent children. I give you a lot of credit for writing this while going through it; I’m sure it wasn’t easy for you.
    Our thoughts and prayers are with you!

  • Michelle says:

    You’re right. I’ve never heard of that type of cancer. All of you guys will be in our prayers.

  • rhonda says:

    No, I have never heard of this form of cancer. My prayers are with you and your family. I am so sorry to hear this, but I am sending positivity your way. Thank you for educating and sharing your experience … I sincerely hope you continue to find support; I know this must be very difficult.

  • Glad that you have found doctors that can give him the best treatment. Will be praying for Tyler.

  • Christy says:

    Thank you for sharing this post, it not only gives others hope but it will help someone else understand the aspects of the disease. I know firsthand how painful it probably was to write this post but know that it will be used for good. My mom passed away with a rare form of Alzheimer’s called Pick’s disease and thankfully my dad took lots of good notes during her journey. I was able to reconstruct most of the events so that I could make other’s aware as well.

    • April says:

      I’m sorry to hear about your mom. Both my husband and I are set on documenting everything we possibly can. Spreading awareness is very important. If it happened to him, it can happen to anyone.

  • This is my first time to hear about this cancer, and I’m sorry that I have to learn about it in this manner. Praying for your family, most especially for Tyler… hoping he gets better very soon!

  • I am sending you my prayers and thoughts of love! Tyler is so lucky to have wonderful parents like you in his life. He seems so strong! Please keep us posted on his progress!
    With love – Lisa Weinstein

  • KG says:

    I am sending you lots of love, hugs and well wishes to you and to Tyler!

    Thanks for posting this!

    Stopping by from VB.
    xoxo,
    Khloe
    http://www.kgstyleblogs.com

  • veronica lee says:

    I,too, am sending lots of hugs and prayers to you and Tyler!

    Thank you so much for sharing this!

  • Norma says:

    My daughter also was diagnosed with Choriocarcinoma. She had a kidney transplant and 4 months later, we were told she had cancer because the DONOR was carrying the cancer cell. The “DONOR” donated her 2 kidneys. The other receipient of the kidney just passed away 3 months ago. My daughter continues to battle with this cancer. The tumors are in her lungs, but it’s not lung cancer. Doctors have tried several types of Chemotherapy.
    It’s been almost 2 years since she was diagnosed with this horrible cancer that is so rare. I’m glad other people are getting the word out about this rare cancer.

    • April says:

      That is terrible, Norma! How old is your daughter? I’m praying for her! This form of cancer is so devastating, it’s really a shame most people are so unaware of it. Thank you for sharing your story. I hope your daughter has a better outcome than the other recipient of the donated kidneys.

  • Norma says:

    She is only 37 years old. She was a teacher for 13 years. After she was diagnosed with the cancer, she could not work. School did away with her job, denied her unemployment. Had to get on disability, then was penalized on SSI check each month because she lives with us (parents). She can’t live by herself! She is on oxygen and has to use a walker to get around.

    • April says:

      Oh my! She should not be penalized because she lives with you…you are her caretaker! Not only is cancer a deadly illness, where she is fighting for her life, but it is also an expensive one. My heart goes out to her and you. I wish there was something I could do. One feels so helpless in these situations. Seeing your child so ill is terrible pain, knowing you can’t take that pain away…I’m so sorry she is going thru this, and you as well. You’d think there would be something that could be done, get some kind of benefits from her former employer for at least something for being a teacher for so long. God bless you both, Norma. It’s every parents worst nightmare. Please keep me updated on her battle. Our son is on his second round of chemo and it’s been very rough on him..much worse than the first round. I’ll be posting periodic updates on him..in fact, I should have a new one sometime in the next week. Please email me any time at mybizarrefamily@att.net. I’m really interested to hear more about her battle with this disease. Have they tried a stem cell transplant or “experimental” drugs/procedures?

  • Norma says:

    It has been a nightmare and a struggle. It going to be 2 years that she has been battling cancer. All she needed was a kidney. I will email you.

  • Monica says:

    I have primary pulmonary choriocarcinoma…..I have been fighting for 22 months. I am interested in what type of treatments u guys have done, and what was effective I have a blog also it’s Imayhavecancerbutcancercannothaveme.blogspot.com …i have had most of my right lung removed, then it showed up in both, i have tried, cistplatin, alimta, taxotere, methotrexate, actomiacyn, abraxane, ink 128. several more also. a couple of them lowered my hcg level, but then it jumped right back up. i have amazing Dr.s at a research oncologist office in scottsdale AZ. God bless!! As if cancer is not hard enough, throw in that its extremely unusual, not realy studied, and aggressive!! Pray tons, n fight like hell!!
    My name is Monica and my email is monicafrench@live.com should u like to reach me. Also I belong to a site called inspire.com under lung cancer…..even though is not reat lung cancer. Very helpful! I am momica there.Peace, prayers, and strength!!

    • April says:

      I’m so sorry you have to battle this devastating disease. Tyler went thru nearly 4 complete rounds of BEP chemotherapy (that failed). He is now undergoing a tandem stem cell transplant and high dose chemo at the Mayo clinic. You can read a little about it on this page: http://mybizarrefamily.com/?p=1581. He has had his first round of high dose chemo and stem cell transplant 11 days ago. His immune system is just now starting to rise a bit again. He will be going thru it all over again in a few weeks. We are praying and believing this will work. I will check out your blog! If you would like to contact me directly, you can email me at mybizarrefamily@att.net. Praying for you, Monica, that you will be completely healed from this. God bless!

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