How I Got Through Cancer Treatment & Side Effects (Myelofibrosis) | Mary’s Story | The Patient Story
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- čas přidán 30. 06. 2024
- Mary L. continues to share her story in this 2nd video about getting diagnosed with myelofibrosis. In this segment, Mary goes in depth about how she was led to her first MF treatment (Pegasys) and the impact of a real lack of shared decision making between her and her oncologist.
She also describes getting tested for gene mutations and how that affected treatment decisions, as well. In the end, she underwent Pegasys and then hydroxyurea. Mary describes both treatments and how she got through side effects.
Mary spends a good amount of time also talking about switching not just doctors, but hospitals/healthcare providers, and the shift that happened following her decision to advocate for herself.
Thank you for sharing your story, Mary!
In this Series: Our 3-part series with Mary covers everything from getting diagnosed with a rare cancer (this video), the ups and downs of going through myelofibrosis treatment, including Pegasys and hydroxyurea, and the impact of living with a rare cancer.
Videos:
1) Getting diagnosed with a rare cancer: • Getting Diagnosed with...
2) Myelofibrosis Treatment & Side Effects (Pegasys, Hydroxyurea): (this video)
3) Living with a rare cancer (myelofibrosis): • Living with a Rare Can...
Full story & transcript → Updated Soon at www.ThePatientStory.com
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The interview has only been edited for clarity.
Contents of this video:
00:00 - Intro
08:00 - The struggle to get heard as a patient
09:20 - Primary Vs Secondary Myelofibrosis
12:25 - Seeing the right specialists
14:35 - Starting Hydroxyurea
17:15 - Hydroxyurea Side Effects
20:26 - Finding the right care for you
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#thepatientstory #myelofibrosis #rarecancers #patientstories #cancerstories #cancerpatient #cancersurvivor #MPN #myeloproliferativeneoplasms #MF #ET #PV #bloodcancer
Notwithstanding the rarity of her disease, Mary has taken patient advocacy to a galactic level. Her medical training provided a baseline confidence that many/most of us won't have. Hearing her challenge her doctors was like music! Keeping such neat track of her symptoms, while her early-on docs dismissed some, was essential. Bravo, Mary !!
The incompetence of these providers is appalling!!! As an experienced RN myself, it makes my blood boil when I hear stories like this. I am so sorry you went through this. Physicians are trained to diagnose and treat. They are required to come to a definitive diagnosis. But SO many NEVER do - due to their incompetence. A sad reflection about our current health care system. I call it the health (don't) care industry. It's pathetic and in my humble opinion borders on being criminal. Their incompetence led to your continued injuries. Totally avoidable pain and suffering. UGH!
My original diagnosis was ET then progressed to PV 2 years later. Now after being in treatment for 12 years I have MF 2-3 and in the mid stages of prepping for a Stem Cell Transplant. Currently taking Ojjaara and Hydrea. Spleen mildly enlarged but have high platelets and enlarged liver. Always, always see an MPN Specialist. Local Hem/oncology do not have the experience necessary to stay on top of these diseases. You may have to drive some extra miles but it is absolutely necessary. All the best to you all❤
Doctors like that need to be written up, not just fired. Totally inappropriate lack of respect for the patient. Telling her she didn't have dizziness when she's falling all the time...
It is tough to have to deal with not being believed - happens way too often!
Just like mary story, I had to change my provider in order to see a "wizard"
It is so nice to listen to Mary. I too have Myelofibrosis but I did have enlarged spleen and really high white blood cell count. Originally they said polycythemevera and put me on hydroxyuria but my platelets went too low so for awhile I just had phlebotomy every month then I was seen my another Dr who did a bone marrow biopsy and it showed I have scaring in my bone marrow and I now take Jakavi twice a day three 5 mg pills each time. It was nice to hear that Mary tell about vertigo as I was into emerg a couple of times with vertigo before I ever had a blood test. I have often wondered if that was related. Because the reason I finally had a blood test was I went to the doctor because I was dizzy and kept wondering if I might have diabetes because I couldn’t figure out why I kept getting dizzy. So thank you Mary for sharing your story while my desease seems to have progressed I now can understand some of the things that have gone on.
Thank you Mary for sharing your story. So helpful. I was diagnosed with secondary myelofibrosis because I had ET for 18 years. I just took a blood thinner when I had ET. But now need Jakifi. It’s working well for me. 🙏🏽
(actually Lynnette) Thank you so much Mary and Stephanie. I viewed this series as one of my friends has MF and I was interested to learn more. However, I became more interested in the journey of navigating health professionals, as I have been having major health episodes for about 4 years. I've had a specialist and his nurse laugh at me and tell my husband to be quiet or we'd be there all day, and been passed from one person to the next telling me it's all migraine related/what have I got against taking antidepressants (nothing actually) and so on. Somehow being female and now 60 infers some sort of nuisance, uneducated and histrionic (I'm not the latter two anyway). My point is, Mary - you are determined, confident and a highly educated health professional who speaks the language and still you got pushed around. It's scary, and hard to keep pushing when you can barely think or walk straight and very low energy reserves, without any health credentials. I am paying to see a specialist next week as I'm not in the US and don't have health insurance. Thanks again for sharing your journey and Stephanie for your insightful and sensitive discussion.
Lynnette, first, apologies for the belated response. Thank you so much for leaving your kind words and for your feedback. I am so sorry you have had such a terrible experience being listened to, or rather, not being listened to. I hope you are able to find the care that you *deserve*. Keep advocating for yourself - there are great medical teams out there. Thinking of you! ❤️ Stephanie
So true. it seems as soon as we are transitioning into menopause and out of childbearing years, we become invisible and irrelevant.
Thank you for sharing Mary. I’m glad you also mentioned clean eating and sleep.
This is why I tell my Dr what to do. Thanks for posting this. Uggh
Sue, so glad you are advocating for yourself! -Stephanie
Unfortunately I have tried to educate and tell my two dismissive incompetent doctors what to do but they would tell me I had “anxiety” and the other blamed my left flank swelling on being fat. I told him to look at my right flank which is normal, flat and no swelling. He said I am a female and some women have fattier sides than the other side. In July set up a telehealth appointment with a doctor who told me to go to ER. The ER doctor ordered a lumbar spine X-ray but no left kidney ultrasound. That doctor blamed my left flank swelling on my posture and told me to exercise. She also told me I was constipated. I am too skinny, exercise every day and it is not fat on the left but swelling which is different. I kept on telling these doctors to see that the right side no swelling and normal. Now 4 months later noticed urine is colourless. My GP doctor dismissed me again. I set up a telehealth appointment with the same doctor who told me to go to ER back in July. She ordered a private ultrasound because the wait in the Canadian health “non” care system wait is too long especially is you think you have cancer. Received a call from the telehealth doctor and she said I have cancer in my left kidney and spleen. I think this cancer metastasized because I have a tumour on my thymus. I feel it, everyone can see it and asked my doctor for a X-ray. He told me no X-ray because if too much radiation. I told him I do not care. I questioned him about the ultrasound being not as non effective of diagnosing. He refused to listen. I had my ultrasound in February if this year and he called to say it was normal. 3 weeks ago I sent photos of the thymus tumour to remind him. Told him it is getting larger and sent him literature detailing the diagnostic scans. Ultrasound not included. The recommendation is X-ray, CT, MRI and then PET. He never accepted his mistake. He wanted me to go in to see him but I refused. Waste of my time. He would dismiss me again and refuse to do what I tell him to do. I called a telehealth doctor who immediately sent me a requisition for a chest X-ray. I received an email the day after I got the X-ray and told to set up an appointment with him regarding results. I am expecting it is cancer. Probably the kidney cancer occurred because the thymus cancer spread. I am now hearing more and more horror stories. I also have MS for 30 plus years. I had all tests and scans done for the last ten years. I was shocked to read my Radiology Reports in 2014 2015 that findings were myelomalacia. That is when the spinal cord hemorrhages from an injury. I was rear ended but had no pain. I noticed my right side has severe drop foot, hip and leg weakness. Spinal instability. I asked my Neurologist years ago to be referred to a spinal surgeon but she refused and said my symptoms were MS. She prescribed high dose steroids but did not work. They always worked before. I also told my Neurologist it is not MS because gait is not MS gait and spine is unstable. My doctor referred my to a neurosurgeon and he said my symptoms are not myelomalacia but MS. I know my Neurologist, Neurosurgeon and doctor are covering for medical error. Myelomalacia required immediate surgery or permanent nerve damage leading to paraplegia and quadraplegia. I told the Neurosurgeon I need surgery to stop further damage and death. He refused surgery so have set up an appointment with a spinal surgeon. I made the mistake of telling the Neurosurgeon my Neurologist never told me I have myelomalacia as well as severe spinal stenosis. My appointment with a new spinal surgeon will not talk negative only positively about my MS Neurologist. I will let him figure it out. If he asks me why I was never referred to a surgeon years ago I will just tell him I do not know. My Neurologist is asking for the spinal surgeon’s name but will not tell her. I do not trust her. I am going private to keep any info private from public system. So many people are not being treated for serious medical issues in Canada because of our failing health care system. It is worst than a third world country. I hear those countries have better systems and cheaper. A lot of Canadians have to fly out of country.
❤ well done mary 🎉
I went to Dr Gotlib for 2 years before I moved to San Diego. I miss him so much!
Go to the best doctors from the very beginning! No HMO for me. I learned my lesson.
I’m 25 and I’ve been diagnosed with Primary Myelofibrosis. It feels less lonely seeing people with their stories who understand how hard this disease is 🤍
My husband is 35, he was diagnosed with MF when he was 31. You're not alone. There are people out there who get it. Hugs to you and all the best ❤
Thank you for sharing. Would you be interested in sharing your story on our platform? If so, are you able to fill out our intro survey: thepatientstory.com/share-your-story/
I lost my Dad to Myelofibrosis 1 year ago at the age of 71. He had it for many years and developed enlarged spleen and liver that turned to cirrhosis. He ultimately died from bleeding varices due to portal hypertension in his liver.
Sometimes Myelofibrosis is abbreviated to MF leading to confusion with another, perhaps slightly rarer,rare cancer called Mycosis Fungoides.Both are blood cancers but Myelofibrosis is closely allied to the Leukemias and Mycosis Fungoides is a T Cell Lymphoma.
I was just diagnosed and I am interested in what the doctor I am going to has to say.
Doctors do not particularly like patients who are very informed nurses.
They hate it
I have ovarian and vertigo horrible till tumor removed
Great interveiw i am a m p n patients you ask all queistion to get a result
👏
I'm on hydroxyurea
Ellen, first and foremost, I am so glad that you are through with R-EPOCH and in remission! That is so wonderful to hear ❤️. I was diagnosed Dec '21 with DLBCL (then PMBCL) and also underwent R-EPOCH. Will be celebrating 5 years soon :). Sending you big hugs! -Stephanie
I don’t quite understand your platelets being high. I was diagnosed with Myelofibrosis this summer (2023) and my platelets are quite low. I’ve never had high platelets. We always watch my hemoglobin. Perhaps there’s a different side to this cancer. I am on a drug called Jakafi which gets rid of just about all my symptoms.
It’s working for me too. I have secondary myelofibrosis.
Hi, I have High Platelets too with this disease. Even taking Ojjaara does not bring them down so I also take Hydrea.
Sounds like you had Kaiser Permanente for the typical misdiagnosis.
I have mylofibrosis and thrombositosis..currently on 500 mg Hydroxcatbamide gir Th sy and ruxolitinib twice a day..very Aenemic..also tummy Injections of stuff given to J.W. patients.every 3 weeks..struggling to get normalised Hemaglobin so have been offered clinical Trial of MOMELOTINIB Approved USA NOT YETapproved in the UK where I live.
Feel pretty good but fall asleep anywhere or anytime I sit down..have yet to accept Trial offer of MOMELOTINIB.. GETTING MRI TO check Spleen and other stomach organs..Any advice would be helpful Iam 79
Josephine, would love to chat with you about your experience. If you're interested, can you email me? stephanie@thepatientstory.com. Thank you so much! -Stephanie
It's not luck, it's because it's primary stage .