All-Star Help!!! Prayers & Help Me Reach Cea Mom Amy Elliot!! Asap!!

[xtremeteal4life]

@xtremeteal4life Thank you for your confirmation of what I think I already knew. Lung cancer is the same - there is no "if", it is always "when". I lost my dad to lung cancer last year, and he lived with me. All of my siblings have regrets for having moved away and not spending the time I did with him. I am so grateful for that time, and I think my daughter will be much the same as me. We have been brutally honest with our kids because, like you, I want details and have a need for the truth.

Since I am on the subject, I want to take a second to make an unsolicited public service announcement. If you have lungs, you can get lung cancer.

My dad and I were both never smokers. We have a genetic mutation that caused our cancers. If you ever have the symptoms of lung cancer, please see your doctor.

Blood when you cough or spit
Recurring respiratory infections
Enduring cough that is new or different
Ache or pain in shoulder, back or chest
Trouble breathing
Hoarseness or wheezing
Exhaustion, weakness or loss of appetite

Indeed this is true. Also, people automatically think bc they hear "cancer in the lung(s)" that it means lung cancer. That's something many people get wrong. For instance, my mother had leiomyosarcoma of the uterus initially, when she was pregnant- however it wasn't caught (passed off as a benign uterine fibroid) and since it had no uterus to attack bc she had a hysterectomy, the lungs were the next primary target...as they are a smooth muscle tissue preferred by this type of cancer.

Also, for the interest of the OP @LegacyQueensAmanda regarding accuracy of this type of cancer not being linked to bones as well, here's a couple of resources explaining how they can and do invade bones.
Leiomyosarcoma Cancer: Diagnosis, Treatment, Research & Support

"Primary leiomyosarcoma of bone is extremely rare. There have been approximately 90 cases reported since initially described in 1965.22,23 Many cases that are thought to represent primary disease of bone, after further investigation, actually represent metastatic disease from another site or bony invasion from a neighboring soft tissue lesion. Most cases of leiomyosarcoma of bone reported so far have been in the metaphysis of long bones......."

My mom was one of those 90 documented cases (and it didn't even originate there like I mentioned, it metastasized there).

Your father probably has an arterial leiomyosarcoma based on your description.
"Arterial leiomyosarcoma usually affects the pulmonary artery. Patients will typically complain of dyspnea and chest discomfort, relating to the arterial obstruction. Symptoms are related to the vascular distribution of the affected artery and the presence or absence of collateral blood flow." (Quote is from link above, link below is another resource for you)
http://www.omicsonline.org/right-ar...very-rare-cardiac-tumor-2155-9880.1000188.pdf

It concerns me that a doctor, presumably an oncologist, made that statement/diagnosis regarding your father when it can eventually invade his bones depending on how long he lives and/or where the cancer metastasizes. If you need any good recommendations for a good cancer center near your area, oncologist, etc. please feel free to contact me.

eta.... I just realized you said your father had colorectal cancer and now a leiomyosarcoma (likely an arterial based on your description). Although it is possibly to have more than one cancer in a lifetime and even more rare, two different ones at the same time, I'm wondering if they misdiagnosed his cancer the first time, or perhaps this time?

 

[xtremeteal4life]

I'm sorry to hear about your dad. Although my cancer originated in my lung, I had a left lobectomy almost 5 years ago and would be happy to answer any questions you would have about that part of it.


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I actually have a question for you. What was the most painful part of that surgery for you? For my mom, it was always the removal of the tube inserted in her lungs/side a couple of days after surgery. ~12-13 of her 16 surgeries was performed on her her lungs.

 

[MyDaughterCheers]

I actually have a question for you. What was the most painful part of that surgery for you? For my mom, it was always the removal of the tube inserted in her lungs/side a couple of days after surgery. ~12-13 of her 16 surgeries was performed on her her lungs.

I remember being terrified of the tube removal but being surprised that it didn't hurt. The most painful part was where my incision was made. It had to go thru the intercostal nerve (it runs around your chest about where your bra strap is) and 4.5 years later, I still have pain there. After the surgery, my left breast had no feeling whatsover, and felt like I was carrying a brick on my chest. When the nerves started to heal and the feeling came back, it was like needles in the area for months. I now have scar tissue there and I still experience pain. I can't imagine your poor mother going thru 16 surgeries!!

@LegacyQueensAmanda I know you probably already know this, but if there is one thing I can tell you, it is that your medical team is they key to your survival. As obvious as that sounds, MANY people go to the closest doctor, not the best. I would highly recommend that your dad see an oncologist that specializes in his disease, even if means travelling to see him/her (of course, only if he is up to the travel). This is a true story . . . I have a facebook friend who's husband has lung cancer. He was told by his oncologist that he is at the end of his journey, there is nothing more they can do. He went to a lung specialist in another city and found out that he has a genetic mutation in his cancer, much like mine, and he can take a targeted therapy drug. Of course there is no guarantee that it will work, but what if it does? Wouldn't that be wonderful?

Please keep us updated on your dad.

 

[Fame.Super.Mom]

Four years ago, I reached out to my fierceboard family for prayers. (If you know me, I was called LegacyShaquita, lol). I do not post much anymore, so many of you do not know me. Four years ago my dad had colorectal cancer and the support from this board was amazing. Now... I need your help again.

Many of you may know Amy Elliot, a mother at Cheer Extreme. She has a very rare cancer called Leiomyosarcoma. Only 1% of cancer patients have this, and only 3% of that group survive. It can attack anything in your body except for your bones...

Last week, my dad was diagnosed with this very rare cancer. He recently had surgery to remove a tumor which they thought it was NOT cancer. Well, it was.. In a few weeks he will start radiation everyday for 30 days, then have a surgery to remove his entire left lung and pulmonary artery. Following this, he will go through chemotherapy.

Not only am I desperately reaching out for thoughts, prayers, positive vibes, or whatever you believe in. But I would LOVE to reach out to Amy Elliot. Please, if anyone has information on how to contact her via Facebook, email, anything, I would love that.

EDIT!!!: I have been connected with her son Bryce. Thank you!

I am also a SURVIVOR of this very rare cancer... TWO time survivor. I was first dignoised w/ leiomysarcoma of the uterus.... 3 1/2 years later I have had 3 very small masses removed from my left lung and 2 very small masses removed from my pelvis. You CAN survive this cancer. You have to first have a positive attitude. They say attitude has nothing to do w/ how your body reacts to cancer, but I disagree. You have to continue to look for the positive stories out there... they do exist. The worst thing you can do is look at the statistics. That's all they are... a number. They do NOT define who you are (or your father). I have had 4 major surgeries in 4 years, and I feel amazing. If I have to continue to fight this monster, I will FIGHT. I will NOT give up. Cancer will NOT control my life and define who I am.

Sending prayers to your father and your family. It may seem tough sometimes, and that's normal. There will be good days... bad days... but YOU are in control of how you handle them. Keep smiling, stay positive....

 

[xtremeteal4life]

I am also a SURVIVOR of this very rare cancer... TWO time survivor. I was first dignoised w/ leiomysarcoma of the uterus.... 3 1/2 years later I have had 3 very small masses removed from my left lung and 2 very small masses removed from my pelvis. You CAN survive this cancer. You have to first have a positive attitude. They say attitude has nothing to do w/ how your body reacts to cancer, but I disagree. You have to continue to look for the positive stories out there... they do exist. The worst thing you can do is look at the statistics. That's all they are... a number. They do NOT define who you are (or your father). I have had 4 major surgeries in 4 years, and I feel amazing. If I have to continue to fight this monster, I will FIGHT. I will NOT give up. Cancer will NOT control my life and define who I am.

Sending prayers to your father and your family. It may seem tough sometimes, and that's normal. There will be good days... bad days... but YOU are in control of how you handle them. Keep smiling, stay positive....

This is totally the right attitude to have and it's the reason my mom lived for so long.... If you don't mind me asking, how long have you lived w/this cancer? It's true you've survived what you've been dealt so far, but in order to truly be cancer free don't you have to be in remission for 5 or more years? Perhaps it's not as rare as it once was (which is a good thing in my opinion, as I'd love to see it truly beaten) and more advances have been made!
I def wish you the best!

 

[cheergirl09]

I am also a SURVIVOR of this very rare cancer... TWO time survivor. I was first dignoised w/ leiomysarcoma of the uterus.... 3 1/2 years later I have had 3 very small masses removed from my left lung and 2 very small masses removed from my pelvis. You CAN survive this cancer. You have to first have a positive attitude. They say attitude has nothing to do w/ how your body reacts to cancer, but I disagree. You have to continue to look for the positive stories out there... they do exist. The worst thing you can do is look at the statistics. That's all they are... a number. They do NOT define who you are (or your father). I have had 4 major surgeries in 4 years, and I feel amazing. If I have to continue to fight this monster, I will FIGHT. I will NOT give up. Cancer will NOT control my life and define who I am.

Sending prayers to your father and your family. It may seem tough sometimes, and that's normal. There will be good days... bad days... but YOU are in control of how you handle them. Keep smiling, stay positive....

Couldn't agree with you more about keeping a positive attitude. My dad currently has stage 4 colon cancer with mets to the liver. It's inoperable because of the amount of lesions on his liver. Doctors are amazed at how well he is doing and tolerating the heavy chemo regimen and my dad swears it's because he remains positive and doesn't let the cancer control his everyday life. He still travels for work one week and then has chemo the next. Having a positive attitude and a great support team is key!


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[Fame.Super.Mom]

This is totally the right attitude to have and it's the reason my mom lived for so long.... If you don't mind me asking, how long have you lived w/this cancer? It's true you've survived what you've been dealt so far, but in order to truly be cancer free don't you have to be in remission for 5 or more years? Perhaps it's not as rare as it once was (which is a good thing in my opinion, as I'd love to see it truly beaten) and more advances have been made!
I def wish you the best!

You are correct that in order to be considered medically "cancer free", 5 yrs is the magic number. I was first diagnosed July 2010, had full hysterectomy, followed by 4 months of chemo. In January of this year spots showed up on my left left, and once a CT scan was done, another small spot in my pelvis. ALLLLLL of these recent masses have been removed and were confirmed to once again be leiomyosarcoma. Next step for me is chemo. As my oncologist puts is "where there's smoke there's fire" so chemo it is. The cancer does NOT scare me. The chemo does NOT scare me. There is no "cure" for this type of cancer, but there are MANYYYYY long term "survivors". I've talked to several who are 10+ years now. I think the key to longer survival rates is the early detection. I feel blessed to have caught mine very early BOTH times. It/when I may have to do this again, I will. You just have to keep fighting. I'm 43 years old with 3 amazing children and I want them to know how important it is to be positive and fight

 

[Fame.Super.Mom]

Couldn't agree with you more about keeping a positive attitude. My dad currently has stage 4 colon cancer with mets to the liver. It's inoperable because of the amount of lesions on his liver. Doctors are amazed at how well he is doing and tolerating the heavy chemo regimen and my dad swears it's because he remains positive and doesn't let the cancer control his everyday life. He still travels for work one week and then has chemo the next. Having a positive attitude and a great support team is key!


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Your post just totally made me smile. Love your fathers strength. What an amazing inspiration he is. I know how proud you must be of him. Prayers for his continued strength, positive attitude, and healing.

 

[xtremeteal4life]

You are correct that in order to be considered medically "cancer free", 5 yrs is the magic number. I was first diagnosed July 2010, had full hysterectomy, followed by 4 months of chemo. In January of this year spots showed up on my left left, and once a CT scan was done, another small spot in my pelvis. ALLLLLL of these recent masses have been removed and were confirmed to once again be leiomyosarcoma. Next step for me is chemo. As my oncologist puts is "where there's smoke there's fire" so chemo it is. The cancer does NOT scare me. The chemo does NOT scare me. There is no "cure" for this type of cancer, but there are MANYYYYY long term "survivors". I've talked to several who are 10+ years now. I think the key to longer survival rates is the early detection. I feel blessed to have caught mine very early BOTH times. It/when I may have to do this again, I will. You just have to keep fighting. I'm 43 years old with 3 amazing children and I want them to know how important it is to be positive and fight

Good for you!!! You remind me of my late mother in just about every way!! Literally from the start of the diagnosis (she was 39), to her numerous surgeries (16), to the chemo, and most of all your attitude!!! She was such a fighter and wanted to hang on as long as she coiuld, especially for my little sister's sake (who was 10 when she passed- she's 17 now)!! Seeing how horrible that cancer is first hand, I have a really good idea as to what you're going through and it's absolutely awesome!!! I'm sure you already know most ppl can't take even a 1/3 of what ppl w/this specific type of cancer do!!

She refused to accept numbers and stats as well (this was almost 18 years ago too!). Best of luck and bright wishes to you and your continued success!!!

 

[cheergirl09]

Your post just totally made me smile. Love your fathers strength. What an amazing inspiration he is. I know how proud you must be of him. Prayers for his continued strength, positive attitude, and healing.

Thank you! He definitely is an inspiration to all of us!


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[12stepCheermom]

Thought this would be the appropriate place to put this. There is not much funding for Amy's type of cancer. As she said in her video, there are not many of them and they don't tend to survive long

That being said, Amy's Army is trying to make a difference, no matter how small. Check out below:

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[Sarah Novak]

You will definitely be in my prayers stay strong!

 

[12stepCheermom]

Rest in peace Amy. It was an honor to know you and share our sons for just a little while. #amysarmyforever


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[BigBow]

So sad. I didn't know her but she seemed like such an awesome, strong, inspirational woman. Thinking and praying for her friends and family.

 

[Cheermom1969]

Rest in peace Amy. It was an honor to know you and share our sons for just a little while. #amysarmyforever


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I hated seeing this last night on Twitter. My heart breaks for her family and the greater CEA family. Watching someone die who fought so bravely is just horrible.