Learning I had Stage 4 Cancer at 19 - Erin | Non-Hodgkin Lymphoma | The Patient Story

[@laurawilliams5363]

Cancer can occur with any age, sex etc. This was a really good post. Thank you!

[@kathymorris4553]

I feel for you. I know what it’s like to be ignored by your doctors. Acted like I was drug seeking, it was horrible. I had a massive ovarian tumor the size of a football. Went to ER middle of night, and with an ultrasound, there it was. They basically told me I was going to die. I knew when I left the house, I’d have surgery and be home in two weeks. They sent be on a small medical jet that got me to Seattle. I said this prayer over and over. The first few lines are, Thy name is my healing, O my God, and remembrance of Thee is my Remedy. Tumor came out easy, did a debulking, took out my appendix and lymph nodes. The cancer did not spread, I had no chemo or radiation and was home in 2 weeks. I went into my doctors office when I got back. I told my doctor what I thought of him. He has had several patients die from cancer.

[@fabiantr100]

I have lung cancer- could have been caught if they followed protocal for a smoker over 50- I had to fight for 9 months just to get a chest xray- it is criminal what some of these doctors do to people

[@caryngoldsmith6782]

You’re an amazing young woman. I was 47 and your emotional reactions from cutting your own hair to staying the course are similar to mine. I’m 17 years cancer free from stage 3 ovarian cancer. Hang in there and enjoy life!

[@brookesmith1550]

What were your symptoms? How did they discover it?

[@caryngoldsmith6782]

@@brookesmith1550 I had a history of endometriosis. They did a pelvic ultrasound and found a mass which was very large and filled with hair and teeth. I guess that’s pretty common. It started to give me a lot of pain. That was basically it. When I went in for surgery, there was a very small risk of cancer; my CA-125 was 64. During the surgery, the pathologist called in that it was cancer, so they revised my surgery from a vaginal hysterectomy to opening me up and taking lymph nodes in addition to everything else. I was very lucky: 3 months earlier it wouldn’t have been found and three months later my organs would have shown signs of metastasis. I was just very, very lucky.

[@Ceerads]

That’s wonderful! I wish you all the best.

[@PerryNight-gc3fp]

If you're not going to give us an update stop wasting our time

[@malenaharrison2080]

Today is 50 years since my mom died.She was only 25.Back then that was very rare and unusual but today its so common..

[@lydiakinnaman3679]

Always listen to your inner voice. ! When in doubt... Praying for Lord's healing. For calm, comfort, peace. God bless you.

[@gwortman3515]

I had fairly long hair and at 62yrs old decided to cut it all off before I underwent radiation and chemo...my Grandaughter and Daughter celebrated this part of my journey and helped cut my hair off. I am thrilled to know your in remission. Praise God.

[@beltech58]

My son had this cancer (burkitts lymphoma) more than 2 years ago. He is doing well and the doctors even said the "c" word (cured).

[@claytonporter91]

That's awesome 👍🏾 to hear I'm so happy for your son, my son was just diagnosed with NHL Lymphoma we are still waiting for his biopsy results to figure out what's stages and stuff very scary stuff

[@azalea1404]

Why is it that we over and over hear "my cancer symptoms were dismissed"? Most recent stats states every 3rd person will get this disease. In some populations and cancer types it's even every other. This has to be dealt with.

[@memyselfi5994]

The prob is for every one person that actually has cancer, 100 have come before with the same symptoms and don’t have cancer.

[@ValerieGriner]

True! Also...how many times have we heard the phrase..."I had to ADVOCATE FOR MYSELF?" The medical care system in the western world(especially the U.S.)...is BROKEN!

[@caffrey1100]

@@ValerieGrinerdocto are getting license on line or something there are just no good solid doctors anymore ( liability is there number 1 god

[@kimrittenhouse4898]

I was diagnosed with DLBLC on December 23rd of 2021. Initially they told me it was in my brain, in my bone (chest), and in my abdomen. They immediately transferred me to MUSC in Charlestown, SC. Turned out it was just (🥴) in my brain. But that was over 2 years ago and I’ve had clear scans for the last 6 months. I still have some lasting symptoms…but all in all I really don’t feel too bad. Happy to see you’re up and about. 😊

[@tinatingson8564]

Hi. What was your treatment? Was surgery involved? Hope all is well.

[@salina8059]

I'm going through the same regarding subungual melanoma. Seems every time I'm not listened to, ended up in the ER, sadly Kaiser k!lls . I've had so many issues with Kaiser and I've had to advocate for myself. And they keep doing it to me. So hopefully this time they look into the current issue with me.

[@ghakashmiri406]

Wish you all the best. My son was neglected by the GP , he had DLBC lymphoma, RCHOP did not work, then he had intense chemo followed by stem cell transplant

[@DianeCorbeille-s2b]

What a beautiful spirit...

[@jaypalnitkar4400]

My dad had follicular non hodgkins grade 3b at age 66. I lost him within 1.5 years. He didn't take any chemo or radiation. Was virtually painfree till the end. He was a doctor himself and was against chemo

[@KB-xd5wq]

Happy to see you make it through. I also had stage 4 Non-Hodgkin's. I had a neulasta shot after every round of chemo. My body would start to ache about 6 hours after the shot. My chemo was every 3 weeks. Everyone seems to have a slightly different journey through the treatments. Great your chemo worked!

[@anika_lana]

Thank you for sharing your story. Lots of love!

[@rowyourboat5361]

praying for your health Erin.

[@siobhanjohnson8088]

Thank you for sharing your experience and really wishing you a speedy recovery and happy future ❤

[@tinatingson8564]

Hi. I hope everything is fine so far. My sister had non Hodgkin lymphoma in the brain. They did not operate because allegedly that is not standard for lymphoma. It looks like you had surgery to remove the tumour? Is that right? Thanks for sharing.

[@BeeApple-sr3db]

I'm so sorry . I hope you can receive proper treatment and you can live a long life.❤

[@glittergirl84]

I hope you are doing well Erin 😊

[@daisyrose2425]

Sending you so much love💞

[@kendallbaney7421]

Thanks it so enlightening...May u know u r special and brave for speaking out..Give God Praise..Amen....

[@donna25871]

Because of autoimmune issues I am at a higher risk of developing lymphoma. Checking my lymph nodes is now something I do daily.

[@khadijamuhammad3971]

I have Sjögren’s syndrome and after having it for many years, I now have have symptoms of Hodgkins. I’m not happy right now. My rheumatologist was the one who told me that I needed to see an hematologist, because my white blood cells are high and I’m on two immunotherapy. I see that hematologist next month.

[@abik2785]

@@khadijamuhammad3971 what are your symtoms right now ? :/ and what were your sjörgens syndrom?

[@olgaherdova3206]

Thank you for sharing your story. I wish you the best of luck and send you a big hug 🤗

[@heatherr1141]

Thanks for sharing your story! It is important to share about advocating for ourselves and and reminding us we know our body. Your story teaches so much more and helps more than you might expect. I’m happy you are healing.

[@EaglesDontQuack]

Thank you for sharing your journey and story! Your voice matters and your message provides hope to those that feel hopeless🫶🏾

[@stephenpittman4291]

You are an amazing person! I thank you for sharing your story which I believe will help other patients going through similar tough experiences. I wish you all the best in your life.

[@Xxxxxx19-p1c]

My husband has DLBCL. It’s very treatable and very curable. Glad you’re okay. There are over a hundred types of lymphoma.

[@tinatingson8564]

Lymphoma in the brain is still a challenge.

[@stanleyolszewski7701]

God bless!!

[@BeeApple-sr3db]

One of my friend's had that and she passed away at 12 years old.

[@dalhousieDream]

You're so beautiful, articulate and brave 🌹🌹🌹

[@Valen-xu2wy]

The first comment i saw was about cancer being dismissed. I got stage 4, 5 years ago. My real life ended and I live day to day. Got a beauty today. My father told me. He did not believe I had stage 4 and why am I not ok today and normal. Hmmmmm. How about anti depressents and suicidal. You will make it if you have the right people around you. Stay strong.

[@lastresort-u7g]

I was dignosed with Pleural mesothelioma at the end of 2020, stage 4, and first time when I heard of the word 'Pleural mesothelioma' , I didn't even know what that mean. Then Covid-19 spread during 2020-2022, and that was really a hard time，I had to take chemotherapy while avoiding infect of Covid-19. It never rains, but it pours. In the second half of 2023, I was told another cancer appear in my body, lymphoma, Hodgkin's, unfortunately, it's also stage 4. Now I'm still breathing, so hang in there, my friend, hang in there.

[@favour7944]

God is with you

[@barbaracasta5579]

You are beautiful and very brave! ❤

[@JJ-vy2rh]

I've had bowel cancer and lymphoma if you're going to get a cancer lymphoma is the one to get, stage 4 isn't the same with blood cancer

[@duffystavern894]

It killed my brother, so it’s not “the one to get”

[@khismet]

No cancer is the one to get. It's unnatural and devastating to any life.

[@JJ-vy2rh]

@@duffystavern894 I'm sorry for your loss but it's very treatable and the treatment is mostly well tolerated

[@duffystavern894]

@@JJ-vy2rh , there are different types of lymphoma, some more treatable than others. My brother suffered terribly for 2 1/2 yrs, all the while being told “ no problem, we got this” & “this is an easy one, no worries”. His last option was Car-T, which failed. In the end, it was the treatments that killed him trying to get the cancer to back off some. Thank you for your condolences.

[@tabp8448]

​I agree with your statement that it's not "the one to get". My father died from lymphoma that had metastasized throughout his body. After chemo and radiation had him in "remission", they still insisted on doing autologous bone marrow transplant on him. It took his immune system back to infancy, and when the cancer came back within weeks of the transplant, his body couldn't fight it off. The last couple of years of his life (age 62-65) he was constantly fatigued and in extreme pain from the treatments that didn't work for him. Btw, he was a Korean War Veteran in his 20's, a construction worker by trade, woodworking was his hobby, and he retired early to deal with his cancer.....so basically, he worked his ENTIRE life and never got to enjoy rest, travel, and enjoy family during his retirement. 😢 @@duffystavern894

[@heatherr1141]

Is Nulasta what caused you pain and they gave Claritin before pain meds or was it the other cancer treatments or something else entirely?

[@Ceerads]

I’m not the OP (obviously), but I am a breast cancer survivor. I’ve heard from many others who had Neulasta that it causes bone pain. I was lucky and didn’t need it during my chemo, as my white blood cells never went too low.

[@heatherr1141]

I knew it was an option but don’t know anything about it yet. I have been having low blood levels wbc, rbc, platelets, and specifically have crucially low absolute neutrophils. We don’t know why yet. I’m have to see hematology/oncology at the end of month. Thank you

[@Ceerads]

@@heatherr1141 Thank you. I wish you all the best, and I hope it’s nothing serious and can be treated easily.

[@heatherr1141]

Me too. thanks

[@Ceerads]

@@heatherr1141You’re most welcome.

[@amirmohri7245]

Love from iran❤

[@staezione]

So your symptoms weren't dismissed?

[@5Gburn]

I was very happily surprised when she said that.

[@LynneHamer-uv1fx]

Why is there hardly ever any fillowup on peoples cancer journys wish them all the best lives cancer free.

[@hungkiet7535]

Trust in God. Confess the word of God daily to your body. By His stripes you are healed🙏 stand on the word of God and believe in faith small as mustard seed, confess psalm 103 daily.

[@fifilafleur5555]

Amen 🙏🏻✝️🙏🏻

[@Baldridge64]

This is a repost. What’s the status on Erin’s cancer?

[@avarose316]

I really wish there was an update for all of these stories.. These stories are so informative and you can’t help but wonder how they’re doing..

[@5Gburn]

At least an update on those who are doing well. Possibly an annual memorial of those who'd passed away...but perhaps there's an understanding that these are standalone interviews with no followups?

[@ani-sv5fh]

May GOD forgive our sins ❤

[@joyceyagoda4207]

True is cancer can happen to the unborn!

[@len6871]

My dear..how did they start a homonal push on you. Whilst having cancer? Homonal cancers are not alowning that. So how was this possible. So sorry? Did I understand this wrong?

[@erinwoolfrey7650]

@len6871 - do you mean how did they start her of IVF during the cancer treatment? Or did you mean something else? Just hoping to help you clarify your question as both a cancer survivor and a medical worker. X

[@lillyrocks2011]

are you doctor? Can I ask you some questions? (About colonic pain, but it's in the Lower side and kidney pain. ​@@erinwoolfrey7650

[@len6871]

@@erinwoolfrey7650 Hallo Erin, sorry to hear you had to go through this, good to hear you survived. Thank you for your question sorry if was not clear. I ment indeed starting IVF (hormoon treatment) whilest having an hormonale cancer diagnose on your overies.( I had both too but years apart in reverse order) Pushing high dose of hormones in your body would not be an option here with a hormonen sensitive tumor. Aswell the IVF t reatment takes time that you dont have after diagnose. I was in surgery asap and treatment as soon the wounds alowed it. (and hasnt been a easy ride as you know.) Have a good day.

[@erinwoolfrey7650]

@len6871, hi there. There is no need to apologise at all. Communication can be hard when trying to ask questions in this sort of format! And it's a completely reasonable and understandable question that I hope I can give some insight into. incredibly nowadays, they do often do an 11-12 day IVF course for many hormone based cancers, including breast cancer and even ovarian cancer. There is a new medicine we can give that actually reduces the esterogen levels in your body while you do IVF unbelievably now! This is meant to help prevent rapid cancer growth because, as you rightly pointed out, it's a BIG danger and concern in hormone based cancers. Another option is, of course, having an ovary completely removed before you start chemo or radiation and then trying to grow the eggs in a lab - though this isn't very successful. But it HAS worked! a third option we often see is where they MOVE your ovaries up higher in your belly so no radiation directly hits them - amazing, isn't it?! This is commonly used when radiation is the primary treatment course. And finally another common move is to GIVE a shorter course of hormone treatment as in around a week - or less in some cases- and take a piece of ovary out and remove the eggs in the lab to get them to develop further. Several hundred babies have been born thru this method, and yearly, the numbers continue to grow Finally, there is also an ovary protecting medication that we give to people in childbearing years that sends them into menopause. This protects their eggs from forming in a toxic environment, can help to protect the immature eggs for later pregnancy and is 100% reversible once you not longer need to protect your eggs you stop the medicine and your body in no longer in menopause. This is also very commonly used nowadays for many types of cancer. But as earlier said, it's not ever a onesize fits all issue. If your hormones have stopped due to the cancer, there are limited options. If they can't ensure your hormones can be reasonably managed for the 2 week window needed for IVF, that means you have less options. If your cancer is too advanced or you are too young or nearing the natural end of your hormone production you have less options - or less success at least. As with all issues that cancer touches, no one's story is the same and there is no blanket treatment. Everyone in this horrific situation has their own care plan designed for them, as you well know, and that's based solely on YOUR individual case, teat results, blood work ups , cancer type and cancer progression. And of course, your own personal choices and personal situation. I'll link an amazing article on this whole topic for you to look at if you would like- if not, no offence at all. I just find it amazing how far we seem to come year after year. 5 years ago, many of these options didn't exist or weren't even considered for any people. How far we have come hey?! Now we just need a cure for cancer and we'd all be happier and healthier!! All this said, if you are too young and aren't going thru a regular menstruation , none of this is an option except surgical replacement of your ovaries higher up in your belly. Likewise, if you are deemed to be too old, despite still having a regular period, the team may say this isn't possible. And thirdly, if you have an aggressive cancer and simply need urgent treatment and they can't buy you 12 odd days for an IVF cycle, then tragically there is little that can be done except immediately start the fight to keep you alive. Every country has different criteria for who qualifies for each treatment, age cut off's, disease progression timelines and different finical requirements for these treatments. It is NOT cheap if you're in a country like the US that doesn't cover these measures on almost any insurance provider. In Australia where I am, this treatment is most covered by our government funded health care system. And I thank God for that because otherwise I couldn't have thrown away almost 15g on the spot to do this treatment . Argh! I'm so sorry to read that you too have a personal experience with this dreadful disease and have experienced the post treatment pregnancy minefield. I can only hope your experiences was as ' easy' and successful as is possible when dealing with issues of this nature? I hope you are well and may you stay that way forever!! I hope this helped to explain some of the methods used and available today in the US, UK and Australia at least? If you have any more questions, pls feel free to ask and I'll do my best to explain the process and I know it!

[@len6871]

@@erinwoolfrey7650 wow what a knowlege you have. Thank you Erin! For me personally it has no use any more. IVF was fruitless and later after diagnose all was taken out. So yeah..life itself becomes very presious. But with all your information I hope to help others that have a chance to preserve the chance for a natural family. I am very gratefull for your insight and hope you share this way. So gratefull. With gratitude Len. (glad to be alive)

[@williamparker1085]

why are we seeing so much cancer in young people

[@imrunninazoo1115]

Food

[@carissafisher7514]

Use a screenshot for the profile picture!! It looks so weird having these photos of the people! At least have the profile picture be one taken within the last three days. Keep it real.

[@tracymcgrath1192]

❤❤❤🙏🌹

[@mariedixon6081]

Which

[@splash6427]

🙏 ❤️ 🙏

[@stephenmichaels6682]

Under our apostle Paul’s ministry, to be SAVED ,you must BELIEVE The Gospel of Jesus Christ,1 st Corinthians Chapter 15 verses 1-4.Jesus Christ died on the cross for all of your sins,was buried,and rose again on the third day.Jesus Christ’s Shed Blood is what saves you when you Believe this plan of salvation with your heart.Romans 3:25” Faith in His Blood”.

[@hungkiet7535]

Amen

[@fifilafleur5555]

Amen 🙏🏻✝️🙏🏻

[@mariedixon6081]

Food

[@jjbinderr]

I’m just wondering if you were Vaxxed?

[@justinduffer9500]

Why do so many people ask this in the comments? Not only is it rude, they never answer. Over 60% of the population is fully vaxxed, including young people. Why do you need people to verify what you know is true? Do you just want to rub it in their face? If that's the case, you need to get help. Do you really think most people would've taken it had they had informed consent? Anyone who's been paying attention knows about P53 suppression and Pseudouridine in the vax.

[@heatherr1141]

Why do you have to go hospital when neutropenia? I have pancytopenia and neutropenia and more. My Rheumatologist found it but they don’t know why so I got a referral for hematologist /oncology . Leukoplakia I think differental to see why. New patient wait is long but my absolute neutrophils is .4 or something that is 4 and results say crucial. So I get to go see n sooner to see hematology/ oncology the end of this month. I don’t know why they don’t hospitalize me. Everyone I know that has it has to. I am going to be checked for cancer or blood disorders. We do t know why I’m having it is maybe why I’m nervous t told to go to hospital. Maybe because I don’t have cancer or that they know of yet. Idk it is confusing. 🫤 Luis my Rheumatologist don’t know what to do so we just have to wait till I see Hematology