Can't say that I learned a big lesson but reinforce one that I got from working as a nurse in oncology and some palliative. Actually, 2 lessons: 1. Live one day at a time, with intention; 2. In spite of diagnosis ( cancer and others), I do not have to identify it would being sick. One can be well inspite of diagnosis of a disease process. Point in hand: I never refer to the time I had cancer as when I was sick. I felt fine. Even post op. Minimal pain. No treatment that made me sick so I was well, I felt fine but I had cancer , surgery got it all and no treatment that made me sick. Hope this make sense, it does to me but I hope I explained it right.
Our 7 yr old was diagnosed with cancer (osteosarcoma) and he had a catheter and I am not a medical person and I took care of it I flushed everyday and when he took a bath or went swimming I had to cover it with plastic and he had it over 2 yrs I was told that I really did a good job 👍 ❤️
She is a warrior! I'm watching my husband fight (what seems to be a losing battle) with cancer. It started as pancreatic, metastasized to the liver, and now it's in the bones and the lungs. His entire gut is frozen in cancer. But there's more. He was diagnosed in August of 2022. Fast forward to February of 2023, when I was told I had soft tissue sarcoma. Two biopsies later, i'm being told that my 17 cm tumor ( plus cyst) is myxiod benign. Initially, I took that information and ran with it.. but now i'm not so sure. With all that being said, i've watched a lot of these "patients' stories", but there's something about Ms. Robyn, that makes my heart sing! There's not enough time or enough space for me to say all the things that are on my mind after watching her story. But one thing I can tell you is that i'm glad she's still here with us ❤❤❤.
Gosh you have been through so much! I am truly hoping you are much improved and enjoying life. You are brave and strong…wishing you all the very best! Xx
I had the Stem Cell Transplant with a donor's stem cells, allogeneic transplant, for my Acute Myeloid Leukemia with the MECOM mutation. As for the diagnosis, my first hematologist/oncologist misdiagnosed me with MDS without even doing a bone marrow biopsy. I sought a second opinion and the second hematologist/oncologist ordered a bone marrow biopsy which revealed my AML and the specific mutation. I had some harsh chemo a month before the transplant with all my hair falling out, not sure if it was the same as this woman had, and then had even more harsh chemo for five days immediately before the transplant to wipe out my bone marrow (not sure if it was the BEAM she described or something similar), and it was a bumpy ride. I needed more transfusions both for hemoglobin and platelets than I could keep track of, but I never developed a high fever and did not have serious issues with mouth sores or nausea. My issues were on the other end, where the treatment gave me horrific diarrhea, with bowel incontinence, and burned my hemorrhoids to the point they bled and wouldn't stop bleeding for the full 30 days I was in the hospital. It was no picnic!
I learned to carry a "C" tote bag with me to all doctor's/healthcare appointments and treatments. I kept a big 3 ring binder with sections: business cards from healthcare providers, treatment notes, lab/imaging results, allergies, medication history and current meds,etc. I had a separate binder at home for medical bills and explanation of benefits. Also in the bag ear plugs, eye mask, small plush stuffed pillow, coloring books and colored pencils (odor free) with sharpener, spiral notebook to write questions for healthcare providers, post it notes, pen, Bible, gallon size ziplock bags (for sickness or soiled clothes), extra change of soft, lounge sort of clothes, small blanket, soft head cover, ginger candies (if allowed), bottle of water. Sounds like a lot but really isn't.
Stephanie - you do an incredible job driving the interview process. It really helps the story to come out. I’ve seen many of your interviews and it’s amazing to see the variety of experiences each cancer patient goes through. Robyn’s story is compelling because it hits the big fear most cancer patients have, which is recurrence. Robyn must have thought she was out of the woods when she completed her 2 year post treatment period without recurrence only to be surprised with recurrence at the 4 year mark. I had 50 grey of radiation as part of my treatment which I calculated is roughly equivalent to the radiation from 2500 chest X-rays. I thought that was a lot. Then I hear Robin had 70 grey. Robyn mentioned the aggressive nature of the radiation treatment. At Sloan Kettering they are known to take an aggressive approach to treatment. I feel like I got through my treatments and surgeries in a similar fashion to Robyn. Do what I’m told. Keep moving forward. Hope for the best. Many of the details of what happened to me was not recorded in my memory. Going through these videos is therapeutic for me as a way of reminding me of the challenges I faced during treatment. A lot of my treatments were done alone due to Covid. There aren’t any people who were with me through my entire treatment experience. So these videos are helpful for me. I recommend keeping a journal so you can look back and really appreciate the strength you summoned to get through some of life’s most miserable times.
I can't thank you enough for leaving such kind words. Helps motivate me and the team to do more do better. I am so sorry you had to go through treatment, and on top of that, in such an isolated setting because of the pandemic. I am so glad you are on the other side of things now...sending you big hugs. ❤️ Stephanie
These videos are just so good! I love them and have watched a good number of them! It’s so important to hear the patient experience! Thank you for posting good quality content! 🙏🏾
Jenn, thank you so much for the wonderful message! Really appreciate when people can appreciate the patient experience :). Thanks so much for watching. ❤️ Stephanie
So true, Cindy. The people around us are experiencing cancer, too. I told my husband I preferred being the patient to the care partner as I would personally find that even more difficult. Thanks for your comment. -Stephanie
Second opinions for a life threatening illness should be available for every one. But it’s only there if you have the money to pay for that information if you don’t have the money you don’t get that second opinion. Sad world we live in.
@@tatianaschoenfield9819 I lived in Norway for years. This nightmare doesn't exist there. The U.S. should be ashamed of anyone not having 100 percent coverage for ALL health issues.
Great interview! Thanks for sharing your information! I have a lymph node in my left side upset neck , I had ultrasound in June last year and endocrinolo said ultrasound it’s fine , I had another ultrasound order by my ENT doctor and called me today that ultrasound looks fine , not worries about cancer …. But they didn’t order a needle biopsy , it’s possible to see in ultrasound of lymph node tumor are suspicious for cancer ? I told my ENT doctor regardless the ultrasound results I want an needle biopsy but they said no.
I have Mycosis Fungoides,a rare T Cell Lymphoma, at stage 2b the beginning of the advanced disorder,and my groin lymph nodes come up a lot.They have biopsied them and so far have been reactive.I don't know reactive to what .either infection or the presence of Mycosis Fungoides cells most likely a combination of the two.
God bless you, I was wondering what cobalt treatments are? My mother passed in 1976 from non-Hodgkin’s Lymphoma she had cobalt treatments that made her so sick. I know at that time wasn’t to much available to help her like they have today. I wish I knew what type of Lymphoma she had.
This is worrying. I was diagnosed with NHL about 12 years ago and was told it’s a very curable cancer. Currently, I feel fine and am in good health. What is the probability I will relapse ?
I m from Germany..Wel me too I had last year PMBCL.. After first line therapy in short period relapsed In 5 months.. First time mediastinal mass 10.5 cm Second time 5.9cm Now I m preparing to stam cells transplant..
@Proudofmynation They have been charged my therapy according to protocol.. After R-rice still my cancer cell active in PET CT So professor told me that CAT cell therapy is the best option for me
Do you want to dedicate here? We're heavily women but we have men in our family. But we're dirt poor. No we don't go support people with our invisible USD. There's a dump bin out front. The darn thing is an odd piece of faraway issues. We need a new one. We don't know who or how. That's dooby though.
![[Part 1] ทารกน้อยถูกทิ้ง👶 หญิงชราเก็บขวดขายเลี้ยงดูเขาจนโต #โลกการละคร](http://i.ytimg.com/vi/nPTDvFCExks/mqdefault.jpg)
We’d love to hear from you: what was the biggest lesson you learned in your own cancer diagnosis? Leave us a comment below 👇
Can't say that I learned a big lesson but reinforce one that I got from working as a nurse in oncology and some palliative. Actually, 2 lessons:
1. Live one day at a time, with intention;
2. In spite of diagnosis ( cancer and others), I do not have to identify it would being sick. One can be well inspite of diagnosis of a disease process. Point in hand: I never refer to the time I had cancer as when I was sick. I felt fine. Even post op. Minimal pain. No treatment that made me sick so I was well, I felt fine but I had cancer , surgery got it all and no treatment that made me sick. Hope this make sense, it does to me but I hope I explained it right.
It's amazing
The first thing living today like last day...
Carefull with doctors because they are not God mind
They make lot of mistakes..
The moderator is excellent - calm, articulate & a great communicator
Thank you very much for sharing your experience because its really helpful for me..
Our 7 yr old was diagnosed with cancer (osteosarcoma) and he had a catheter and I am not a medical person and I took care of it I flushed everyday and when he took a bath or went swimming I had to cover it with plastic and he had it over 2 yrs I was told that I really did a good job 👍 ❤️
She is a warrior!
I'm watching my husband fight (what seems to be a losing battle) with cancer. It started as pancreatic, metastasized to the liver, and now it's in the bones and the lungs. His entire gut is frozen in cancer. But there's more.
He was diagnosed in August of 2022. Fast forward to February of 2023, when I was told I had soft tissue sarcoma.
Two biopsies later, i'm being told that my 17 cm tumor ( plus cyst) is myxiod benign. Initially, I took that information and ran with it.. but now i'm not so sure.
With all that being said, i've watched a lot of these "patients' stories", but there's something about Ms. Robyn, that makes my heart sing!
There's not enough time or enough space for me to say all the things that are on my mind after watching her story. But one thing I can tell you is that i'm glad she's still here with us ❤❤❤.
God bless her heart, she went through a lot.
Gosh you have been through so much! I am truly hoping you are much improved and enjoying life. You are brave and strong…wishing you all the very best! Xx
I had the Stem Cell Transplant with a donor's stem cells, allogeneic transplant, for my Acute Myeloid Leukemia with the MECOM mutation. As for the diagnosis, my first hematologist/oncologist misdiagnosed me with MDS without even doing a bone marrow biopsy. I sought a second opinion and the second hematologist/oncologist ordered a bone marrow biopsy which revealed my AML and the specific mutation.
I had some harsh chemo a month before the transplant with all my hair falling out, not sure if it was the same as this woman had, and then had even more harsh chemo for five days immediately before the transplant to wipe out my bone marrow (not sure if it was the BEAM she described or something similar), and it was a bumpy ride. I needed more transfusions both for hemoglobin and platelets than I could keep track of, but I never developed a high fever and did not have serious issues with mouth sores or nausea. My issues were on the other end, where the treatment gave me horrific diarrhea, with bowel incontinence, and burned my hemorrhoids to the point they bled and wouldn't stop bleeding for the full 30 days I was in the hospital. It was no picnic!
So, you were not that horrible md or nurse patient. Good for you! I'm sure this was appreciated by the nurses and mds.
My dad was a pathologist...he helped me tremendously during my illness...
I learned to carry a "C" tote bag with me to all doctor's/healthcare appointments and treatments. I kept a big 3 ring binder with sections: business cards from healthcare providers, treatment notes, lab/imaging results, allergies, medication history and current meds,etc. I had a separate binder at home for medical bills and explanation of benefits. Also in the bag ear plugs, eye mask, small plush stuffed pillow, coloring books and colored pencils (odor free) with sharpener, spiral notebook to write questions for healthcare providers, post it notes, pen, Bible, gallon size ziplock bags (for sickness or soiled clothes), extra change of soft, lounge sort of clothes, small blanket, soft head cover, ginger candies (if allowed), bottle of water. Sounds like a lot but really isn't.
This is such a great bit of wisdom for others! Thank you for sharing. ❤️ Stephanie
Stephanie - you do an incredible job driving the interview process. It really helps the story to come out.
I’ve seen many of your interviews and it’s amazing to see the variety of experiences each cancer patient goes through. Robyn’s story is compelling because it hits the big fear most cancer patients have, which is recurrence. Robyn must have thought she was out of the woods when she completed her 2 year post treatment period without recurrence only to be surprised with recurrence at the 4 year mark.
I had 50 grey of radiation as part of my treatment which I calculated is roughly equivalent to the radiation from 2500 chest X-rays. I thought that was a lot. Then I hear Robin had 70 grey. Robyn mentioned the aggressive nature of the radiation treatment. At Sloan Kettering they are known to take an aggressive approach to treatment.
I feel like I got through my treatments and surgeries in a similar fashion to Robyn. Do what I’m told. Keep moving forward. Hope for the best. Many of the details of what happened to me was not recorded in my memory. Going through these videos is therapeutic for me as a way of reminding me of the challenges I faced during treatment. A lot of my treatments were done alone due to Covid. There aren’t any people who were with me through my entire treatment experience. So these videos are helpful for me. I recommend keeping a journal so you can look back and really appreciate the strength you summoned to get through some of life’s most miserable times.
I can't thank you enough for leaving such kind words. Helps motivate me and the team to do more do better.
I am so sorry you had to go through treatment, and on top of that, in such an isolated setting because of the pandemic. I am so glad you are on the other side of things now...sending you big hugs. ❤️ Stephanie
These videos are just so good! I love them and have watched a good number of them! It’s so important to hear the patient experience! Thank you for posting good quality content! 🙏🏾
Jenn, thank you so much for the wonderful message! Really appreciate when people can appreciate the patient experience :). Thanks so much for watching. ❤️ Stephanie
As a DLBCNHL patient I know all too well that cancer effects family and friends maybe even more than the patient
So true, Cindy. The people around us are experiencing cancer, too. I told my husband I preferred being the patient to the care partner as I would personally find that even more difficult. Thanks for your comment. -Stephanie
The diet info is fascinating!
Second opinions for a life threatening illness should be available for every one. But it’s only there if you have the money to pay for that information if you don’t have the money you don’t get that second opinion. Sad world we live in.
Truth.
Unaffordable healthcare in the USA but there is a new spending bill for a Trillion dollars for defense. Yes, sad priorities we live with.
@@tatianaschoenfield9819 I lived in Norway for years. This nightmare doesn't exist there. The U.S. should be ashamed of anyone not having 100 percent coverage for ALL health issues.
Great interview! Thanks for sharing your information! I have a lymph node in my left side upset neck , I had ultrasound in June last year and endocrinolo said ultrasound it’s fine , I had another ultrasound order by my ENT doctor and called me today that ultrasound looks fine , not worries about cancer …. But they didn’t order a needle biopsy , it’s possible to see in ultrasound of lymph node tumor are suspicious for cancer ? I told my ENT doctor regardless the ultrasound results I want an needle biopsy but they said no.
I was recently diagnosed with the same illness and have been debating whether to do treatment or not.
This sounds like what I think hell might be.
I have Mycosis Fungoides,a rare T Cell Lymphoma, at stage 2b the beginning of the advanced disorder,and my groin lymph nodes come up a lot.They have biopsied them and so far have been reactive.I don't know reactive to what .either infection or the presence of Mycosis Fungoides cells most likely a combination of the two.
Boy! They are throwing “the book” at you. 👍🏻💕💕💕🙏
God bless you, I was wondering what cobalt treatments are? My mother passed in 1976 from non-Hodgkin’s Lymphoma she had cobalt treatments that made her so sick. I know at that time wasn’t to much available to help her like they have today. I wish I knew what type of Lymphoma she had.
I thought Cobalt was radiation? Wikipedia seems to think so. Sorry to hear what your mum went through :-( en.m.wikipedia.org/wiki/Cobalt_therapy
Thank you 😊
I almost died but was very content about passing away due to the pain...
This is worrying. I was diagnosed with NHL about 12 years ago and was told it’s a very curable cancer. Currently, I feel fine and am in good health. What is the probability I will relapse ?
@India Bliss. STAY AWAY FROM THE C vac!!!!
Which type u have and which stage
@@TAJ-ub2xx sorry, I should have mentioned it was Diffuse large B cell lymphoma (DLBCL)
@@indiabliss which stage u have because my brother is recently digonose dlbcl
@@indiabliss how r u now. I have b cell to
I m from Germany..Wel me too
I had last year PMBCL..
After first line therapy in short period relapsed In 5 months..
First time mediastinal mass 10.5 cm
Second time 5.9cm
Now I m preparing to stam cells transplant..
Had you done with BMT ? & Which one?
@Proudofmynation
I m going to do 27 of this month
CAT cells therapy..
It s better than stam cells therapy
@Proudofmynation
They have been charged my therapy according to protocol..
After R-rice still my cancer cell active in PET CT
So professor told me that CAT cell therapy is the best option for me
That's TEMU at lymphoma- HERE.
They're older than we are here.
I really don’t see where these stories are helpful for some people I would think it just scares the hell out of you.
Do you want to dedicate here? We're heavily women but we have men in our family.
But we're dirt poor. No we don't go support people with our invisible USD.
There's a dump bin out front. The darn thing is an odd piece of faraway issues. We need a new one. We don't know who or how. That's dooby though.