My Hodgkin Lymphoma Story: My First Symptoms that Led to My Diagnosis (Sam's Story)

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  • เผยแพร่เมื่อ 20 พ.ย. 2024
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    After feeling extreme fatigue, Sam blamed it on balancing home and work life as a doctor during the pandemic. But after developing a cough and a lump above her collarbone, she was then diagnosed with Hodgkin’s Lymphoma at 38.
    In this story, she voices her frustration over getting a wrong diagnosis, the importance of being honest with your medical team, the chemo treatment she underwent and how she advocated for herself.
    Full story & transcript → www.thepatient...
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    Contents of this Video:
    01:42 First symptoms
    09:30 Getting the official diagnosis
    14:10 ABVD chemotherapy
    15:23 Side effects from ABVD chemotherapy and how to manage them
    19:05 Complete remission
    ​#cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory #hodgkinslymphoma #hodgkinlymphoma #lymsm #cancerstaging #chemotherapy #cancersymptoms

ความคิดเห็น • 266

  • @JasonCarney.
    @JasonCarney. ปีที่แล้ว +267

    She's a doctor. Imagine how frustrating it is for those who are not a member of the system.

    • @sabrinar.3917
      @sabrinar.3917 ปีที่แล้ว +10

      What's your point? She still struggled.

    • @jodybogdanovich4333
      @jodybogdanovich4333 ปีที่แล้ว +54

      ​@@sabrinar.3917 Sam (Dr. Siegl) said all her colleagues jumped in and were able to expedite (fast-track) her biopsy. Most patients have to have a lot of patience.

    • @sabrinar.3917
      @sabrinar.3917 ปีที่แล้ว +8

      @Jody Bogdanovich that is a benefit of knowing people in the medical field. My dad is a doctor, so I understand that. I can't imagine what it must be like otherwise. It is unfortunate, but it's just how the system works.

    • @gusefulbeauty
      @gusefulbeauty ปีที่แล้ว +5

      You are right! It is all she suffered and not having the benefits and more for those without connections and colleagues to answer questions and help.

    • @Catherine3296
      @Catherine3296 ปีที่แล้ว +3

      You could have some sympathy for this lady, she maybe a doctor but she’s human.

  • @karihanes6342
    @karihanes6342 ปีที่แล้ว +128

    My sister had Hodgkins and one of her symptoms was itching under her skin all over. My sister also had trouble breathing due to the large mass sitting between her lungs and on top of her heart and in her last trimester of pregnancy. OB/GYN thought the itching was hormone changes and a new baby nerves. Finally sent her to a dermatologist, the dermatologist sent her to an Internal Med physician. She said I am going to bite the bullet and do a chest xray. There they found the large mass. I believe she was Stage III when diagnosed. She has been in remission for 30+ years. That baby she was carrying is now a family physician.

    • @thegmom7812
      @thegmom7812 ปีที่แล้ว +7

      Wow, that's awesome 👍

    • @breezeh1127
      @breezeh1127 ปีที่แล้ว +7

      This is an incredible story snd I'm glad someone finally listened and she is weell ❤ I found this video while trying to figure out why I have a lump that is now painfully pushing on my skin that I can feel in my upper chest and have had itching under my skin and night sweats for months! All signs point to get it checked.

    • @thegmom7812
      @thegmom7812 ปีที่แล้ว +1

      @@breezeh1127 yep

    • @alexbowman7582
      @alexbowman7582 ปีที่แล้ว +2

      Great ending.

    • @midlifemama8420
      @midlifemama8420 11 หลายเดือนก่อน +1

      Oh man! I have itchy skin all over as well and no clue why. Especially my hands. And I am also exhausted often. Boo. I hope it's nothing.

  • @carolynnewcomb2153
    @carolynnewcomb2153 ปีที่แล้ว +202

    So great that you’re doing well. My dad was diagnosed with stage 4 Hodgkin’s disease in 1985. He turned 80 last Oct 9th and celebrated by skydiving with two of his granddaughters and one grandson!

  • @dfe1497
    @dfe1497 ปีที่แล้ว +62

    If only more Doctors understood how cancer patients truly feel, I had breast cancer and it kicked my butt, but what made it harder is I didnt feel like my Dr's were hearing me or listening to me, and that makes a big difference

    • @ThePatientStory
      @ThePatientStory  ปีที่แล้ว +9

      Could not agree more with what you're saying. It's disheartening to hear you had that experience.

  • @Gerard-Fisher
    @Gerard-Fisher ปีที่แล้ว +24

    I was mocked by my doctor when I reeled off a list of symptoms. I rarely bother my GP, and it takes a lot to drag my carcass there. Needless to say, I've not been back, and i'm managing my own symptoms.

    • @a_mused00
      @a_mused00 ปีที่แล้ว +10

      Today at the doctor, they took down every symptom with appropriate seriousness and then thanked me for being thorough. They said, "even if some things aren't related, it's better to know everything so we can make good decisions." I hope you find doctors who will listen to you and take you seriously.

  • @monavanderveld6306
    @monavanderveld6306 9 หลายเดือนก่อน +7

    Being a doctor she knows better what to do then us ! Plus the doctors treat her better then they treat us , asking questions seems like they are bothered , finding best options they send you to some other specialists! Today’s medical system it’s a disaster ! Takes months to just get some appointments in specially with new patients , then to do all the tests and then if you lucky to get a good doctor that pays attention to you ! So many are treating superficial symptoms, they don’t care unless you dying and then they can diagnose you ! Changes need to be made in our medical field, from better trained doctors , to a better patient care ! I’m really glad you are doing ok !🙏😘

  • @carolleduc578
    @carolleduc578 ปีที่แล้ว +102

    I was just 23 in 1969, a newlywed when I discovered an enlarged lymph node in my neck that a biopsy revealed to be Hodgkins Disease. I don’t recall that chemotherapy was even available at the time and in 1970 I had a series of 30 radiation treatments to my neck area and then 15 treatments to my abdomen. I was struck by your comment about treatment toxicity because 27 years later I had breast cancer which was believed to be a result of the radiation. I have had nodules removed from my thyroid which were not malignant and my gall bladder was also removed because of nodules, also not malignant. I was also lucky to avoid the heart issues that radiation often causes. I have also had many squamous skin cancers in the areas of my body which received radiation. A cancer at a young age pretty much insures you won’t be far from the medical community your whole life but overall I am grateful for the excellent care I have received these past 50+ years. I am enjoying a long and happy life with a husband who has always been there for me, and two daughters (one biological and one adopted) and now 4 amazing grandsons. I wish for you the same as you navigate your life’s journey.

    • @Julie-pb7fe
      @Julie-pb7fe ปีที่แล้ว +5

      Praise God for your healing

    • @carolleduc578
      @carolleduc578 ปีที่แล้ว

      @Keylara I am sorry that you lost your sister to this dread disease.

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว

      Radiation causes cancer that's why the people that receive it develop it again later because it takes a while to initiate after it damages your DNA. I can give you my first hand knowledge of this with my mom's experience. My mom had uterine cancer at 23 and had surgery. No radiation ever and she has been cancer free since the surgery 50 years ago. She is now 74.

    • @Gardendreamsforme
      @Gardendreamsforme ปีที่แล้ว +1

      In 1971 my brother was diagnosed with lymphoma at the age of 23. Radiation and cobalt were his only choices at that time. Cobalt has absolutely brutal and made him deathly ill. He passed at the age of 27

    • @patriciadevis7130
      @patriciadevis7130 ปีที่แล้ว

      @@Gardendreamsforme. Sorry about your brother. ❤

  • @rowanbowyer6560
    @rowanbowyer6560 ปีที่แล้ว +70

    Real fatigue, an unwell fatigue is one of the most awful symptoms to cope with, especially as a working parent, I feel so badly for her and others like her ❤

    • @clbaird40
      @clbaird40 ปีที่แล้ว +6

      Yeah, and doctors will just tell you to eat more and try to get more sleep.

  • @smc130
    @smc130 ปีที่แล้ว +34

    The way this young woman handled this diagnosis is so admirable. I hope she lives to be a very elderly woman with many beautiful grandchildren. She deserves the very best life has to offer her and I think she will grasp it with both hands.

  • @MsGail61
    @MsGail61 ปีที่แล้ว +49

    I had the same thing in 1992. They operated on my chest to remove the mass and now I have a scar like a heart patient. Then I had 6 months of ABVD, though we had to drop the B halfway through and use prednisone due to its affect on my lungs. No radiation since the mass was removed surgically. I was 31 then, and I’ll be 62 in May, so I’ve doubled my life since then.

    • @smc130
      @smc130 ปีที่แล้ว

      You are an amazing woman. Happy early birthday, my dear!

    • @BlazingSadles
      @BlazingSadles ปีที่แล้ว

      Glad you made it through!

    • @hatebreeder999
      @hatebreeder999 ปีที่แล้ว

      Amazing

  • @karenlong4817
    @karenlong4817 ปีที่แล้ว +10

    You are a incredible woman and doctor. I pray that you stay healthy. May God watch over you and your family. ❤❤❤

  • @joyluo9601
    @joyluo9601 หลายเดือนก่อน

    “I got the second chance”. This is so inspiring. Everyday is a miracle. We should make every day a wonderful day. Thanks for sharing your story!

  • @debbieschultz106
    @debbieschultz106 ปีที่แล้ว +11

    You're going to be such a better doctor by going through this. You're going to be more thorough and compassionate to your patients. I'm not saying you weren't before, but this had to change you. I pray you're cured, and you can raise your beautiful children and live to be 99.

  • @77Daisymay
    @77Daisymay ปีที่แล้ว +16

    Thank you for sharing. I’m at the “found a lump in my neck stage.” (Size of a gulf ball). Body aches, fatigue, and a surgeon who denies its cancer, and only agreed to a CT scan. He did not want to biopsy or excise it. Very low energy, is becoming my new baseline over the last 6 months, since I found it. Thank goodness my PCP is advocating with me and agreed to a second opinion if the surgeon maintains his position in plan of care after the CT.

    • @DingusKhan.
      @DingusKhan. 10 หลายเดือนก่อน +2

      I hope you were able to find the care that you need. I'm curious if you have any follow-up to your comment.
      Were you diagnosed? Are you now on the road to treatment/recovery?
      Wishing you all the best.

  • @dukegroovy5162
    @dukegroovy5162 ปีที่แล้ว +8

    this beautiful intelligent woman deserves to live a long life

  • @heathercamp8093
    @heathercamp8093 ปีที่แล้ว +8

    I like how you described the grief of the cancer treatment. I had a double mastectomy for breast cancer and people didn't understand that hardship of not being able to do things I was able to do before, it was very frustrating and demoralizing. You are brave, what a hard thing to experience.

  • @tngal121
    @tngal121 ปีที่แล้ว +15

    I watched this because I had a similar experience with my daughter when she was 18 months old. She had been misdiagnosed over the course of three months by her pediatrician. Finally they did a finger prick and found she had Acute Meyloid Leukemia. We were sent to St Jude that evening, to stay for 6 months of intense chemo. Thank God she is 17 today and doing well, but now we are dealing with what we think are after effects of the chemo she received at such a young age. Now, we are dealing with a new set of frustration because no doctors that we can find can answer our questions because they're not trained in after effects of childhood cancer. I became my daughter's health advocate. It's sad that so many get misdiagnosed. 😢 Thank you for sharing your story and I am so happy you're doing so well. You have a beautiful family ❤️.

    • @elizabethmcleod246
      @elizabethmcleod246 ปีที่แล้ว +1

      What are your daughter’s issues now? Could she see a Functional Medicine doctor or a Naturopath?

  • @karenimran3349
    @karenimran3349 ปีที่แล้ว +15

    I wish you well with your journey and continue to recover , my niece 25 was a nurse was diagnosed with Hodgkin’s lymphoma, she had a constant cough by the time she was diagnosed she was stage four. She had chemo, radiation, extensive chemo. Stem cell transplant. She then got GVHD chronic . Sadly she passed away at age 30 years old.

    • @happycook6737
      @happycook6737 ปีที่แล้ว +1

      😭🙏💐

    • @BlazingSadles
      @BlazingSadles ปีที่แล้ว +1

      So sorry!😢

    • @skiyogagirl
      @skiyogagirl 10 หลายเดือนก่อน

      I am so sorry! 🙏🏼💛

  • @SnartNik
    @SnartNik ปีที่แล้ว +23

    You're clearly a special person and incredibly articulate. It's generous of you to share your experience with others. I hope you never have to go through anything like that again.

  • @Mexnexus
    @Mexnexus ปีที่แล้ว +13

    Great, that she addresses all the emotional rollercoaster that is getting a serious sickness, and most important the depression. She is a Doctor and has a supportive Family, now imagine the same situation WITHOUT those 2 things. That is why so IMPORTANT to support your family and friends any way you can with your TIME when they are having a bad time fighting a serious medical condition. To embrace someone is free, and priceless.

  • @tammyhenderson7107
    @tammyhenderson7107 ปีที่แล้ว +29

    At age 20. I was diagnosed with Hodgkin's disease. I had Bronchitis that wouldn't go away after a month. Went through chemo and radiation. I sent through 11 years of CT scans. Then I was cancer free. At the 11 year mark I had a massive heart attack. Emergency double bypass. Make sure they do an cardiac angiogram. We're not sure if it was the chemo or radiation that caused my massive heart attack. Don't trust echos. I had an echo 4 months before my heart attack. Only way to really prevent a heart attack if angiogram. Please request it .

    • @Portia620
      @Portia620 ปีที่แล้ว

      Not always true because that can even miss it honey. There’s no guarantee you she can have every task but you’re right it’s a great screening tool that should be done but don’t rule out in a heart attack of all the test come back clean! Still pay attention to your body is what I’m saying

    • @kandacepatterson7965
      @kandacepatterson7965 ปีที่แล้ว +1

      Glad your doing so well. My mom did 2 stress tests and eco..her cardiologist said someyhing is still not right. They did angiogram..sure enough 5 artery by pass😮

  • @helen2158
    @helen2158 ปีที่แล้ว +15

    I made a similar experience of feeling being labelled as anxious patient for asking questions /wanting to understand risks related to medical procedures that I had to go through at the time.

  • @lillyrocks2011
    @lillyrocks2011 ปีที่แล้ว +8

    I wonder why doctors can be so cruel? Like they think we are crazy or exaggerating.
    I hope to find what others diseases I have.
    I pray for all that don't have diagnosis and struggle to get it/them.
    🙏🏼🕯️

  • @imacurlygirl
    @imacurlygirl ปีที่แล้ว +31

    So happy you are doing well!! My father died of Stage 4 Hodgkin's Lymphona 47 years ago at the age of 29. At that time, they did't have the treatments that they have now. You are AMAZING!!!!!!! Stay well!!!

    • @pdmarie63
      @pdmarie63 ปีที่แล้ว +3

      My brother did too at the age of 23 in 1984 and I agree with you that if it was these days your father and my brother would have had a better chance.

    • @countrygirl366
      @countrygirl366 ปีที่แล้ว

      🙏🙏❤️❤️🙏🙏

  • @AS-yz2iz
    @AS-yz2iz ปีที่แล้ว +6

    I can relate to the depression coming after treatment. For my son it was anxiety after his 8 month treatment for AML. Its a beast. Praying for you.

  • @pamela5568
    @pamela5568 ปีที่แล้ว +11

    My guess is Sams experience will make her a better doctor. Many times if I ask questions of doctor's they act like I'm too ignorant to understand their answers, and even got yelled at (yes literally) for asking about possible thyroid issues. Follow on PET scans are essential. Good luck with your health Sam.

  • @becallen9711
    @becallen9711 ปีที่แล้ว +10

    My dad had a mass in his collar bone. he went to a chiropractor and they found it and advised him to go the doctor. He was diagnosed with Hodgkin's Lymphoma.

  • @ozenmacher
    @ozenmacher ปีที่แล้ว +15

    I am undergoing treatment for a rare blood disorder called POEMS Syndrome. I started chemo and we are at the same stage. I am in remission and much better, but some days I struggle, too. You compare yourself to your old life. You realize the frailty of life. It can hit you hard at first. But you really do need to reframe things.

  • @kndhrt64
    @kndhrt64 ปีที่แล้ว +36

    God bless you in your fight with this illness. You are in my prayers. And if you are feeling disrespected by your doctor's/providers don't be afraid to stand up to them . Make sure every concern you have is not only heard, but documented. I have had a disease all of my 58 yrs of life but I've only been diagnosed with this disease this year. It was only diagnosed because I wouldn't give up on requesting the test I needed to prove to my doctor's that I have this disease. I am glad I didn't give up because I was right in my beliefs. Now I can begin to be properly treated before it's too late to save my life. It's a true shame that some doctors lose focus and don't listen to what their patients are saying. No one knows your body better than you. And not everyone is a textbook case. But because they have the degree, many doctors think their pts are uneducated, idiots. They forget the whole reason they became doctors and that's to treat and heal people. When a doctor loses focus and becomes to big for his britches, I believe it's time for them to sit down and take a good look at themselves. You seem like you are very kind doctor when you are able to practice. Don't forget what you've gone through as a patient and speak to your colleagues about the way you felt. If all doctors had to be patients first, they would be better doctors.

    • @sheriek2777
      @sheriek2777 ปีที่แล้ว +5

      Thank you for sharing your story. As a 2 time breast cancer survivor diagnosed with TNBC October 2021, at age 74, it is so uplifting to listen to you speak and exhibit such a loving strong spirit.

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว +7

      Well stated. You said what I was thinking and what you stated is irrefutably true but something else that is true is that this doctor had the outcome she did because she already had connections within the world of medicine whereas the vast majority of people do not have access nor connection to speed things along. Alot of people do not survive because they are ignored and doctors intentionally delay testing and that in turn delays diagnosis which in turn delays treatment which in turn leads to poor outcome for the patients. I am one of those that have been intentionally dismissed. I have been symptomatic for 4 years and can not find a doctor to do testing to find answers. Doctors think they are educated which is laughable because they don't have answers and they don't want to test to find answers and I have encountered numerous doctors that didn't even know tests and conditions that I pointed out to them. In 2020 I wanted to do a cancer screening but a doctor at JPS hospital in ft worthless texas told me verbatim that "people under 50 don't get cancer" and refused to do the cancer screening so when I hear nonsense coming from a doctor I know that not only are they incompetent but they are also uneducated college degreed idiots as well. And when I hear ignorant indoctrinated robots say "doctors are educated that's what they went to school for" I laugh so hard because if that were true they would have answers and they don't. And doctors refuse to do proper testing to find answers so there is NOTHING "educated" about someone who declines learning nor someone who declines applying what has been learned. In terms of their so called "education" they are a dollar matinee at best. In terms of their occupation they are public enemy #1 as doctors are the leading cause of premature death. If this lady didn't have connections to speed things up her outcome would 80% have not turned out the way it did. She has a HUGE support system that people that do not work in healthcare don't have and in the united states you have to have connections to get anything done (that's why politicians receive the BEST healthcare) and if you don't have connections and money you are on your own and out of luck. 😷

    • @gikkavit
      @gikkavit ปีที่แล้ว +2

      Best comment here. 👏👏

    • @thegmom7812
      @thegmom7812 ปีที่แล้ว +1

      Well said !!!!

  • @rachelevans6711
    @rachelevans6711 ปีที่แล้ว +24

    Thank you for sharing your story. I was diagnosed with Stage 4 Hodgkin's Lymphoma last September. I'm due for my last chemo session this Friday. You have been through a seriously rough time, and although it's totally rubbish what happened to you, I'm sure it must be useful to have gone through it if you ever have to treat or take care of a patient with cancer. I sincerely hope that you are fully well now Xxx 💕

    • @happycook6737
      @happycook6737 ปีที่แล้ว

      🔔 Congratulations on finishing chemo! Keep on keeping on. 👏💐

    • @pragatisingh4619
      @pragatisingh4619 ปีที่แล้ว

      how are you now

    • @rachelevans6711
      @rachelevans6711 ปีที่แล้ว

      @@pragatisingh4619 in remission 🙂

  • @agathahofmann6977
    @agathahofmann6977 ปีที่แล้ว +11

    of all the cancers you can get this one is the one you want in terms of prognosis, right? wishing you strength and endurance for the treatments ♥️♥️♥️

    • @skiyogagirl
      @skiyogagirl 10 หลายเดือนก่อน +1

      Seems very heartless…my daughter is going thru chem @ 26 for a molar pregnancy & many people think that because she is young, that she can just fly thru it…just saying that if it was you diagnosed with Hodgkins Lymphoma…you would not want people saying things like this…

  • @Alines_horseconnection
    @Alines_horseconnection ปีที่แล้ว +43

    My sister was 29 and misdiagnosed for MONTHS. the doctor gave her one antibiotic after the other, and he was sure she had pneumonia. She was sweating all night, she coughed until she had to vomit, she could not breathe and she lost a huge mass of weight in short time. After the 3rd or 4th antibiotic try she was sent to x-ray were they found that the mediastinum was really huge and pressing on her lungs. She was in such a bad state then that she was in hospital for all the chemo treatment. She was stadium IV (non Hodgkin lymphoma). But she survived, even though it was not easy. They had to change the Chemo once because the first Chemo nearly killed her. It was terrifying

    • @annebooyse1112
      @annebooyse1112 ปีที่แล้ว +3

      Karo Line, I hope that by Grace, your sister is doing better. She is fortunate to have your support.

    • @Portia620
      @Portia620 ปีที่แล้ว

      🙏😢

    • @lindab8397
      @lindab8397 ปีที่แล้ว +2

      This is scary, my daughter has had 4 treatments so far out of six. Again she had sweats, a cough phlegm. Never in a million years did we suspect cancer.😮

    • @irynafox3593
      @irynafox3593 ปีที่แล้ว +2

      what do we expect when half of these "professionals" are LDS members PAs (two years of school, btw, and they can treat ppl) who are pushed by their church for quick well-paid professions for its own profit? don't tell me I am wrong- I worked with them myself

    • @zaragray7983
      @zaragray7983 ปีที่แล้ว

      I'm sorry I don't trust doctors. When you tell them how your feelings they assume that is just gas etc..I never want to hear that I'm sick but if i of to know, I'll will do what i of to do to stay alive

  • @jintanamcmorrin1312
    @jintanamcmorrin1312 ปีที่แล้ว +12

    Dear darling Doctor my heart been with you May god bless you make you feel better very soon 🥰🥰🙏👍💪👼🧚‍♂️🧜‍♂️🏴󠁧󠁢󠁳󠁣󠁴󠁿

  • @marykelley5182
    @marykelley5182 ปีที่แล้ว +3

    It is amazing that the doctors did not let you in more on the “conversation” as being a physician yourself…

  • @kimmyb8276
    @kimmyb8276 7 หลายเดือนก่อน

    The grief after totally makes sense. You were so focused on survival you pushed your feelings down. I'm so happy you made it through. God bless

  • @tammyweaver7198
    @tammyweaver7198 ปีที่แล้ว +9

    Glad you are doing well. Your family is beautiful. Stay strong and positive. You're in my thoughts and prayers.

  • @Cle.e
    @Cle.e ปีที่แล้ว +13

    Prayers and Admiration ❤ I connect with your story on a personal level.
    I am 26, diagnosed with both Marginal Zone Lymphoma and SLE Lupus. It has been a battle and was hard to get my medical team to understand that something was not right. And until that official diagnosis it was a struggle to be treated or even taken seriously. (Due to the misconception that young people DO NOT get cancer or debilitating illness like this.)
    Your video is an inspiration and gives me a desire to keep my head up. And to never stop advocating for my health.
    Thank you for sharing your story ❤

    • @annmarie1689
      @annmarie1689 ปีที่แล้ว

      Good luck, maybe Good bye Lupus protocol

  • @margaretohara7250
    @margaretohara7250 ปีที่แล้ว +6

    This is an amazing story. Thank you for sharing and hope and pray you are okay. My family member (80) had small cell lymphoma but she did not get treatment. Why, I don't know. You are so young and I will pray for all of you.

  • @ladeanakeller2594
    @ladeanakeller2594 ปีที่แล้ว +5

    Sweety I've been feeling the same way. All over my body and especially in my esophagus.

  • @PSSMURTY
    @PSSMURTY ปีที่แล้ว +2

    Keep up with this spirit dear 😊. With loads of love and prayers from someone who has been fighting cHL for the last 10 years. Was diagnosed with Hodgkins Stage III ASX in 2013 was treated with 6#ABVD Followed by IGRT to Rt. Neck @27 Gy for 15 fractions. Had my first relapse in 2018. Underwent Salvage with 6#GDP followed by HDCT With BEAM and Then Auto HSCT. Thought it was all gone but it relapsed again in 2021. Was deemed unfit for an Allogeneic HSCT so underwent a Second Salvage with Brentixumab Vedotin and Bendamustine, followed by HDCT With LACE this time and a Second AUTO HSCT and now on Maintenance Immunotherapy with Nivolumab almost 7 months...
    Just be strong and rock 😊
    Love and Prayers to The Great Hierarchy of Masters. May They be loving and compassionate on you all... 😊

  • @Doktracy
    @Doktracy ปีที่แล้ว +2

    Thanks so much for sharing. My PA was diagnosed when he complained of pain in his shoulder and had a pathological fracture during Covid.

  • @paisley8519
    @paisley8519 9 หลายเดือนก่อน +3

    This is exactly what happens when we ask questions of some doctors ~ we’re labeled as “anxious” or “troublesome”. But asking questions and pushing for explanations is being a self advocate. Why is that so hard for some doctors to understand? Sorry you had to experience that as a doctor yourself.

  • @dorothybennett2191
    @dorothybennett2191 ปีที่แล้ว +1

    Thank you for sharing this journey you and your family went through. I live at a high intensity of being aware of how the person I am talking to, their attitude their “temperature “. , it’s awful…I have worked in pediatrics hospital care ( bedside care) for 40 years… we take care of the children of nurses, nurse practitioners, physicians and you immediately feel so worried, but every time I just treat them “real”, I love their input on what they think, how things are going and from there I really admire them and I feel united in being on their team … it almost always goes great. I say all this because of what happened to you when you wanted to be apart of your own plan and advocating for your self. I was so sad about it but you did it and now you go forth with super powers , knowing what most people cannot possibly know. You are now an angel in your family and your patients!! xo

  • @joyrees7966
    @joyrees7966 ปีที่แล้ว +4

    Many many doctors can't diagnose much these days and it's horrifying. She knew 😢

  • @ajcrum3689
    @ajcrum3689 ปีที่แล้ว +13

    i had a medical mystery for awhile i went to 7 different Dr s i went in and told my family dr i had it and i needed to see a auto immune dr i wasn’t taken a no ! guess what ? after 21 vials of a blood draw found out i had no immune system it was completely gone and had been complaining since i had been on 3 rounds of antibiotics and still was sick no one was listening until i had that blood work come back it was so frustrating . i am so sorry about ur health diagnosis but never take no for a answer . we know our own bodies .

    • @Portia620
      @Portia620 ปีที่แล้ว +1

      Don’t allow yourself to be gaslighted by the medical community telling you it’s in your head. No, that’s a doctor that’s unwilling to understand the limits of his own thoughts and brain capacity and that is really a classy thing for a doctor to realize that he doesn’t know everything.!! Good luck finding those doctors.!! don’t let them gaslight you, or you could be dead fight

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว +3

      Yes I can relate with you. I've been symptomatic for over 3 years and seen dozens of worthless doctors that either don't want to do proper testing to find answers or they do a few tests and then deny the findings and call abnormal "normal" e.g. hundreds of blood clots, displaced surgical clip, black vomit, yellow stool, posterior hepatic tumor, chronic low BP 77/49, 7 abnormal EKGs, fluid around the heart, sky high out of range biomarkers, unintentional one third body weightloss and the incompetent jackasses say "we don't see anything" and refuse to diagnose. Doctors in texas are worthless jackasses. Thank you so much for sharing your experience.

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว

      ​@@Portia620 Yes absolutely spot on. Doctors in the united states are worthless jackasses. They want to get paid because they went to school and that's not what you are paying for. The patient is paying the doctor to find answers and resolve. And it's clear that having a college degree has nothing to do with being educated as evidenced by the incompetent uneducated college degreed idiot doctors that don't even know the name of tests or what they are for. I told 5 different MDs that we need to do a Hep panel, myoglobin, microalbumin, MMA, aldolase and apo B 100 and everyone of them replied "what are those, I've never heard of them" which makes finding a real doctor like finding a needle in a haystack. There is a big difference between qualified and having a piece of paper that proclaims to be. I call the ornaments hanging on their walls the FHP (Fake Healers Proclamation)

    • @joannhayden6575
      @joannhayden6575 ปีที่แล้ว

      Yes my daughter was misdiagnosed for 2 plus years before she was dx with HL. Her fatigue, extreme itching and swollen neck lymph nodes were mistaken for mono and allergies. Most Doctors do not recognize the itching as possible HL.

  • @rickb2537
    @rickb2537 ปีที่แล้ว +2

    Developed HL at age 73. Limited Stage. Underwent 3 cycle of chemo (2 with Bleomycin) for a total of 6 treatments over three months. Then 10 proton beam radiation treatments to the chest. Proton beam radiation is much more precise. Area and depth can be controlled for better results and less damage to surrounding organs and tissue. All done at Mayo Clinic. Opted for radiation follow-up because I wanted to go for a knock out right away. At my age, secondary cancers were less important to me as they usually don't show up for many years. And, I didn't want to go thru treatment again if I could avoid it. Was no fun at my age. I'm 27 months post-treatment and no relapse so far. When you suspect a problem, don't wait. Get a diagnosis and treatment as soon as possible. You must be your own advocate. This cancer is curable. Seek out the best medical center to provide the treatment.

  • @mistybedwell5962
    @mistybedwell5962 ปีที่แล้ว +5

    This was so good...such a great story from a doctor's perspective. I really appreciated hearing it.

    • @ThePatientStory
      @ThePatientStory  ปีที่แล้ว

      Glad you enjoyed it! Thank you so much for watching.

  • @mystrength5640
    @mystrength5640 ปีที่แล้ว

    YOU are such a Beautiful Blessing… of a lady!
    God Bless you., and your family always!
    I’m a R.N. So I have a little insight into your life!
    Thank you for sharing…
    You have blessed and cared soo much.. for soo many!

  • @voxpopuli5663
    @voxpopuli5663 ปีที่แล้ว +37

    The doctor who gave you the shockingly irresponsible diagnosis of metastatic breast cancer needs something akin to probation.

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว +5

      A misdiagnosis is better than an intentional delayed diagnosis that leads to poor outcome. At least the doctor made an effort to find answers. Any doctor that refuses to even try to find answers and refuses to give a diagnosis is not a doctor and not worthy of the license it represents

  • @dbrook7763
    @dbrook7763 ปีที่แล้ว +5

    Never try to justify any symptoms . From day 1 of any symptoms get seen don’t make excuses for pain, tiredness get seen

  • @staceyloke9872
    @staceyloke9872 ปีที่แล้ว +18

    i was also given a terminal lung diagnosis. i’m HL 2a and had 1 chemo thursday. it’s so horrible

    • @margaretohara7250
      @margaretohara7250 ปีที่แล้ว +4

      Will pray for you. Blessings galore

    • @staceyloke9872
      @staceyloke9872 ปีที่แล้ว

      @@sovereignfreedom1957 so far it seems that the chemo is the standard. nothing else. i’m on every other thursday bv-avd

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว

      Stay with the chemo and do not let the healthcare system push you into radiation. Radiation causes cancer and that's why most people that have radiation after chemo don't survive. Stay with the chemo. No radiation and you will be fine.

  • @BeverleyLaman-pe3kb
    @BeverleyLaman-pe3kb 10 หลายเดือนก่อน +3

    Hi Sam, it’s good that you are doing well.
    I have been suffering with swelling above collarbone and now a lump on collarbone which is getting bigger.
    I have a cough at times, stomach ache here and there with nausea, dizzy spells at times, itching, headaches a lot and so tired all the time, to the point of having a lot of naps. Which is not like me.
    I have been on two lots of antibiotics, anti inflammatories and a lymphatic massage as I have been through breast cancer. Nothing is working.
    I had an ultrasound on my thyroid about 9 months ago, it was clear.
    I have had another ultrasound about a month ago and it shows enlarged lymph nodes and two cysts in my neck.
    I am not getting anywhere at the doctors.
    This has been going on for 12 months now.
    Not sure how to get through to anyone to see what is going on.

  • @finni-h2x
    @finni-h2x ปีที่แล้ว +1

    I can appreciate you're a doctor...totally unfair tho with how everything was moved faster in the system because of this..
    I hope you are doing well now.

  • @paulanewhouse4252
    @paulanewhouse4252 ปีที่แล้ว +6

    Your husband looks like Adrien Brody. I'm sending you well wishes and love.

  • @Sherka55
    @Sherka55 ปีที่แล้ว +4

    Never lose your voice always speak up💖

    • @Portia620
      @Portia620 ปีที่แล้ว +1

      This!!! EMPOWERING AND trust yourself even if the doctor says nothing’s wrong it’s OK to get a second opinion don’t give up they misdiagnosed me for many years and I have Graves’ disease. I have no idea what all these weird symptoms were.

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว

      Yes NEVER allow the medical cartel system to make a fool of you. Speak with boldness. Speak with conviction. 💪

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว

      ​@@Portia620 Yes I agree. I am a retired respiratory therapist and the one thing I tell people to ALWAYS remember is this 👉 The body does not lie - doctors do.

  • @dinapapaioannou1071
    @dinapapaioannou1071 ปีที่แล้ว +1

    I think Doctors and medical field in general need to change there approach towards there patients !! Your being your own advocate in the face of something this serious not to mention Iv noticed on this TH-cam channel that patients symptoms are ignored or bypassed for something else we need to train doctors to detect cancer faster !! These patients should not have to keep fighting to get that diagnosis and we should be detecting early so we can help people

  • @angelafitzgerald7407
    @angelafitzgerald7407 ปีที่แล้ว +5

    I have stage 4 cervical cancer, spreaded to my lymph nodes and my 2 🫁 lungs tumor in my right lung, I go once every Thursday for my harmone cancer treatment injections 💉 in my upper buttocks doesn't hurt not in there very long then I go home, don't have no side effects, CT Scan came back tumors are shrinking, cancer is on stand still, Oncologist Dr looked shocked, but I have to go to cancer center the rest of my life, I love to eat lettuce vegetables, I Pray and Have Faith. God Bless You Dear.

    • @ZeroOz-xc3ny
      @ZeroOz-xc3ny 3 หลายเดือนก่อน

      I hope you are feeling better now. Could you please tell what were your first symptoms

  • @nickywilks7928
    @nickywilks7928 ปีที่แล้ว +9

    Keep going love, you are amazing!!!!!

  • @countrygirl366
    @countrygirl366 ปีที่แล้ว +1

    Thank you so much for sharing your story ❤️

  • @lovethelighttruth8330
    @lovethelighttruth8330 ปีที่แล้ว +1

    Bless her heart..🙏🏼🙏🏼🙏🏼

  • @Portia620
    @Portia620 ปีที่แล้ว +2

    Yeah, the anxious patient and you’re a doctor you know about her it’s just we want to know as much as possible that’s not being anxious. It’s just it’s your body we should know as much as possible as we’re paying for the service.

  • @jeffreyscottfishman
    @jeffreyscottfishman ปีที่แล้ว +2

    So happy you are doing well and made it through this. 🙏

  • @mariejones7136
    @mariejones7136 ปีที่แล้ว +5

    I had non hodgekins lymphoma but my body waited until I was 67 to get cancer ..Before that I was vegan and juiced and did some fasting ..Did all for prevention which was probably how I survived with chemo and getting a curable cancer......Now Im cancer free but always worry about it ...;but Now since Ive been studying this I take a bunch of supplements and herbs and eat the right foods and work on healing my digestive system..Im also trying to fast two or more days a week..Doing a lot of one meal a day and intermittant fasting...I can fast now more than three days in a week..I also read about menbendazole and fenbendazole for cancer cures..I just need to find a doctor to guide me..

    • @olemontoya
      @olemontoya ปีที่แล้ว +1

      What herbs and supplements did you take?

    • @mariejones7136
      @mariejones7136 ปีที่แล้ว

      @@olemontoya .lots of stuff..Burdock root, Passion flower, Paul D Arco, Cats claw, Berberine which blocks glucose...wormwood, chanca piedra, quercitin , medicinal mushrooms, lyons mane, olive leaf, Vit.D..resveratrol..Also to get rid of dead cancer cells serrapeptase and to get rid of stem cancer cells green tea..resveratrol.. juice celery ..oh; curcumin on food..

  • @sueu6263
    @sueu6263 ปีที่แล้ว +17

    I would be very upset hearing this diagnosis without having done a biopsy ! Not acceptable!

    • @amycross4932
      @amycross4932 ปีที่แล้ว +10

      This just happened to me last week - I went to ER for pain in my hip, had a CT, and the Dr. informed me I have a mass in my chest and casually told me it was cancer. What???? I see a hematology/oncologist tomorrow and I’m scared to death.

    • @sueu6263
      @sueu6263 ปีที่แล้ว +3

      @@amycross4932 I hope you will be ok🙏💕

    • @evlyn0734
      @evlyn0734 ปีที่แล้ว

      @@amycross4932Praying for you 🙏🏾💖

    • @rowanbowyer6560
      @rowanbowyer6560 ปีที่แล้ว

      @@amycross4932I do hope you’re coping with this, it’s not easy I wish you all the best I know exactly how you feel

    • @sunnidays
      @sunnidays ปีที่แล้ว

      @@amycross4932 🙏🙏🙏🙏🙏 wishing you the very best and that you kick the cancer 🌻🌻🌻

  • @pattiseelig6342
    @pattiseelig6342 ปีที่แล้ว +3

    I just finished my 3rd round of chemotherapy and immunotherapy for waldenstrom macroglobulimia which is a rare blood cancer it's a form of non Hodgkins lymphoma this round beat me up 3 more to go wanna give up

    • @cynthiaparris7549
      @cynthiaparris7549 ปีที่แล้ว

      Bless you, I will certainly be praying for you 🙏 ❤

    • @MakeupbyAshley
      @MakeupbyAshley 4 หลายเดือนก่อน +1

      Never give up! Be strong and keep you faith strong - prayers

  • @ThePatientStory
    @ThePatientStory  ปีที่แล้ว +1

    We’d love to hear from you: what topics would be most helpful for us to cover? Leave us a comment below 👇

    • @shitalbachchhav5834
      @shitalbachchhav5834 ปีที่แล้ว

      Hello, Is there any possibility I can discuss and get some information about folicular lymphoma related stories. I checked the website as well

  • @louern123
    @louern123 ปีที่แล้ว +5

    i am sorry for what you went through 🙏🏻 but i have to say that as i listen to all of what you, and many of us women do, this just isn’t normal for humans. we do way too much. i wish i was planting rice all day, my brain is fried at the end of my work day

  • @kittyfarkas
    @kittyfarkas ปีที่แล้ว +4

    You got through it, so glad. I had chemo for 6 months 5 years ago, non Hodgkins chronic lymphoma. No evidence of disease. Then in Dec after minor weight loss, Dr decided to have a cat scan. I have Lima bean sized 2 under arm and many pea sized in abdomen. I was stage 3 last treatment. I think plan is to see him in 3vmonths then rescan in 6. This waiting is hard.
    At least you had curable type.

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว

      Yes and she also has connections to speed the process that we don't have so we have to wait much longer and there lay the problem. Hang in there. You are tough.

    • @joannhayden6575
      @joannhayden6575 ปีที่แล้ว +1

      HL is not always curable. I wish they would quit saying that. Less research is done then for those who have recurrent HL. I know too many young HL patients who did not survive. I am grateful this beautiful lady and Mom is in remission and I pray she stays in remission. But they need to stop saying Hodgkins is at least a curable cancer. It was not for my daughter.

    • @SM-zm5hz
      @SM-zm5hz ปีที่แล้ว

      @@joannhayden6575Im sorry to hear that 😢what stage HL did your daughter have ?

    • @joannhayden6575
      @joannhayden6575 ปีที่แล้ว +1

      @SM-zm5hz She was misdiagnosed for 2 yrs. By the time the physicians figured out what was wrong in 1999 she was in stage 3. She had ABVD for 6 months. In remission for about 1 yr. Then Autologous SCT with one month remission, then SCT with her sister as donor. No remission. She had a couple boosters of her sisters Stem cells. Then we tried alternative medicine until she could get into a study. She didn't make it to the study. The HL was reoccurring til she passed in 2006. I pray healing for those fighting HL. ♡

  • @dianemcnutt9017
    @dianemcnutt9017 ปีที่แล้ว +9

    I’m struggling with a diagnosis. My right breast has been swollen along with many lymph nodes and edema. I have seen so many physicians and tests ,still no diagnosis. I’m off to a hematologist because some things in my bloodwork are off. They found several 2-3 centimeters nodules in both lungs which they said can’t biopsy? Thank you for your story. Praying for you and your family 🙏

    • @margaretohara7250
      @margaretohara7250 ปีที่แล้ว +4

      Will pray for you. Blessings galore

    • @sueu6263
      @sueu6263 ปีที่แล้ว +1

      What did the mammogram show? Cat scan?

    • @dianemcnutt9017
      @dianemcnutt9017 ปีที่แล้ว +1

      @@sueu6263 they couldn’t evaluate it I went to a breast surgeon to much fluid I was told in my right breast . I was put on a diuretic and occupational therapy for the lymphedema I have. Then I am going to have more imaging on the right breast. It shows also fluid around my heart. They are hoping all this fluid in my body will go down with meds and therapy. The troubling factor in all of this is I’ve been going through this since May of last year. My husband passed away then my sister and that’s when my body started with these issues. I’m seeing a cardiologist,pulmonologist, 3 GI specialist,a liver specialist, hematologist, breast oncologist, NO ANSWERS yet?

    • @Ceerads
      @Ceerads ปีที่แล้ว +1

      @@eon7125 Please STOP with advising alternative treatments. If those treatments were effective we wouldn’t need the scientifically-based treatments our oncologists provide.

    • @donalhanley6393
      @donalhanley6393 ปีที่แล้ว

      @@eon7125 £(

  • @raynwhite6997
    @raynwhite6997 ปีที่แล้ว

    Omg, God Bless You.

  • @rdizzy1
    @rdizzy1 ปีที่แล้ว +2

    I actually enjoyed being on anti-psychotic medication, can't grasp why so many people dislike it. (I was on risperidone though, not zyprexa)

  • @wayneosullivan1549
    @wayneosullivan1549 11 หลายเดือนก่อน +1

    Hi Dr I had non Hodgkin lymphoma in my face painful getting back on my feet. Hey I have the same colour girl dog 🐕

  • @malousmom9231
    @malousmom9231 10 หลายเดือนก่อน

    Thank you for sharing

  • @angelafitzgerald7407
    @angelafitzgerald7407 ปีที่แล้ว

    I went through carboplatin and taxol chemo treatment not long ago, but now getting my harmone cancer injections now in my upper buttocks. If I got to go back on chemo I will, prefer carboplatin and taxol and my benadryl to keep chemo side affects away while I'm sitting there getting my chemo treatments 8 and 9 hrs.

  • @brudyboy58
    @brudyboy58 2 หลายเดือนก่อน +1

    At least you have the money to pay for it. Most people are too poor to get proper medical care

  • @ayzhanorozobayeva6986
    @ayzhanorozobayeva6986 ปีที่แล้ว +2

    I pray that you heal and so completely as only God can cure. The touch of Jesus drives all illnesses away. Matthew 4:23

  • @donnamiley6778
    @donnamiley6778 ปีที่แล้ว +3

    Fascinating!

  • @Cingearth
    @Cingearth ปีที่แล้ว +4

    Avocados has the same active ingredient as they use in chemotherapy !

  • @clancycreations
    @clancycreations 3 หลายเดือนก่อน +1

    In my 46 years I have unfortunately seen more drs than not who have egos far larger than their student debt and ego combined.
    I wish I weren’t so cynical but aside from my own experiences and adult family members’ experience (unless they were wealthy or had wealthy advocate), and far worse… the experience with two of my babies/children who have carried and rare forms of mito disease… leaving us to travel to four states to find someone with knowledge and a heart….. I have only met two drs who gave a damn in 15 years.

  • @angelafitzgerald7407
    @angelafitzgerald7407 ปีที่แล้ว

    I like your attitude towards your journey.

  • @julief2247
    @julief2247 ปีที่แล้ว +1

    It’s ok to be upset and cry.

  • @ez4me2sa
    @ez4me2sa ปีที่แล้ว +3

    Just how many of these young cancer patients received the C-jab? Curious...

    • @ShadowMan66
      @ShadowMan66 ปีที่แล้ว

      Loads of Lymphomas lately. My fit, well sister aged 37 got turbo-lymphoma 3 months after her 3rd shot that she had to get for work as a nurse in NSW, Australia. She died last month. This is going to be a huge thing in the next year or two!

  • @valentinacardona173
    @valentinacardona173 ปีที่แล้ว

    Such a nice person

  • @meepk633
    @meepk633 ปีที่แล้ว

    Zyprexa was terrible for me. I slept like 16 hours a day.

  • @vorpalinferno9711
    @vorpalinferno9711 ปีที่แล้ว

    Glad to see her hair restored.

  • @ILOVECAMPINGSABRE5thwheel
    @ILOVECAMPINGSABRE5thwheel 8 หลายเดือนก่อน

    She’s understandable to other Doctors. How does this help the everyday ordinary person????

  • @Elle-bu6ou
    @Elle-bu6ou ปีที่แล้ว +1

    How can the doctors treating you label you anxious? Good grief, it’s cancer. Ask what you want.

  • @cherylcarlson3315
    @cherylcarlson3315 ปีที่แล้ว +1

    Hate that she had similar situation as I did. 5 yrs ,7 neurologists, 2 muscle biopsies while getting worse being told is anxiety with some untreatable NMD Several years living with anxiety that no one was listening to symptoms or did ice pack test as I had done.Went from working nurse, biking, writing and editing novel, working on old house, being involved in community to weak, falling, brainfogged, cane dependent, short of breath, stress incontinent , hopeless. I pressed to try mestinon which worked,got off oxygen, can walk further, think clearer but...They still don't want to give a diagnosis.

    • @no_country_for_real_men
      @no_country_for_real_men ปีที่แล้ว

      That's the problem with the amERRORican healthcare system. They don't want to be doctors. Doctors job is to diagnose and treat but they don't. They want to get paid because they went to school instead of doing their job.

  • @robertfield5904
    @robertfield5904 10 หลายเดือนก่อน +1

    Deuteronomy 28,
    cancer feeds on (eats) sugar.

  • @angelafitzgerald7407
    @angelafitzgerald7407 ปีที่แล้ว

    Try and be strong.

  • @rachel031404
    @rachel031404 ปีที่แล้ว +2

    Drs gaslight us until we are stage 4….

  • @nancydavieau
    @nancydavieau 7 หลายเดือนก่อน

    3 years old & still nursing !!!

  • @angelafitzgerald7407
    @angelafitzgerald7407 ปีที่แล้ว +2

    I take vitamin C and D everyday

  • @Cingearth
    @Cingearth ปีที่แล้ว +4

    Eat garlic avocados and onion daily ! Along with cabbage or broccoli all raw !

  • @maddyk8505
    @maddyk8505 ปีที่แล้ว

    where can we follow all these people on you tube ? no youtube channels are ever given? thank you

  • @rebeccamorrison1484
    @rebeccamorrison1484 2 หลายเดือนก่อน

    Help! PLEASE

  • @TheShumoby
    @TheShumoby ปีที่แล้ว +2

    She should check if she has gluten sensitivity DNA SNPS.

  • @susancrowther5979
    @susancrowther5979 ปีที่แล้ว

    She probably won't say & I understand it's personal but...I would like to know if she had the vaccine and any boosters before finding this

  • @powerelite1000
    @powerelite1000 ปีที่แล้ว +2

    Hi l have swollen lymph nodes about
    15-20. Went for a ultrasound scan also they want me to have a biopsy I'm scared
    The ultrasound was done 2days ago, going to my GP to get a biopsy and speak to them. Had a lot of blood test and thing have come back normal. They believe it just inflamed not anything serious, having another ultrasound on the 10th of this month. To see if anything have changed. My symptoms are heart palpitations, fatigue, headaches, pain on my left side and itchiness. Did people have these symptoms

    • @bgminewz3806
      @bgminewz3806 ปีที่แล้ว

      Anxiety

    • @powerelite1000
      @powerelite1000 ปีที่แล้ว

      @@bgminewz3806 it’s not anxiety had a biopsy on my left arm and I’m still not well been six months waiting for results still have swollen lymph. Other issues as well.

  • @angelafitzgerald7407
    @angelafitzgerald7407 ปีที่แล้ว

    Got to be a fighter.