I have a very similar experience. I had extreme fatigue and several other symptoms. I was fortunate that my doctor was aggressive and recognized my symptoms early on. He got me to a hematologist right away, and I was diagnosed with leukemia, and admitted to the hospital within 22 days. Five weeks later, I’m already in remission. Still undergoing treatment to remain in remission, but moving in a positive direction. Don’t ignore strange symptoms and insist that your doctor listens to you.
That cancer diagnosis is life changing!!! My only symptom was extreme fatigue too- low HGB and very low iron!!!! Colon cancer-stage 3b- had had a colonoscopy 5 years before that was normal- took 3 months of other tests until they finally did another colonoscopy! Now 8 years cancer free!! Can identify with your story.
Thank you for sharing! My journey is similar to yours. I dealt with extreme fatigue for 2 years starting in 2006 and was being sent to every specialist imaginable. Of course cancer is the last thing anyone thinks of. I was diagnosed with Waldenstrom's in 2008 at age 56 and over the almost 17 years now I have been treated 3 times, most recently in 2022. Now at age 73 I am really feeling great and also find that daily meditation helps keep me in the right mindset. I have heard that we may die with it but probably not from it. I hope this gives you hope for a long life!
I have had Waldestroms for 9 years. It took the hospital 3 months to figure out! My husband was very supportive like your wife. Support helps your journey to healing! So pleased you’re doing so well.. ! I like your advice about finding the right doctor..
I'm so glad that your doctors and you have found some treatments to keep your WM under control for eight years. It looks likely that a cure for MM is coming soon. There are new treatments being discovered every few months for both WM and MM. I hope that you'll have a lot more years to enjoy your life and that a cure for WM will be coming soon too. Good luck and God bless.
I love this video! Thank you! My cancer was breast and I was treated at MSK here in NYC). I think the prominent cancer research centers are the best places to get treatment, if someone can go to one of them, but less-renowned hospitals can be excellent, too. Your kindness and compassion to your wife and children are so evident. Wishing you and your loved ones all the best. (And yay to Massachusetts! I can’t help saying that.)
I have been having extreme fatigue for years. Have had low red blood cell count for over 2 years i have a auto ammuine disease so that what they are saying it is. I hope and pray it is not cancer
Isn't it amazing what has been learned about with cancers?! I had my first appointment with a Hematologist a few days ago. I have the same mutant gene DDX41 as my brother. He's in hospital now fighting his last bit of time left with 2 blood transfusions a day. They're helping enough at the moment to keep him alive but we don't know how many days left he'll have with us. Anyhow my appointment was by phone. This Dr wasn't too worried about the mutant gene but there was something else that was just slightly elevated and she wants to see how it shows up every 3 months when I have A1C done for my diabetes and my CBC with my Internal medicine specialist for my Ulcerative Colitis. I also have asthma and very early stage Emphysema. She want to keep an eye out for pneumonia as she said with COPD, pneumonia is high risk and as disease grows, pneumonia will happen more often. Of course I have not mentioned this to my brother and his family. They have enough stress to deal with him being near end stage. I wish you many good years with your beautiful family! 😊🇨🇦💗
My aunt had non Hodgkin lymphoma and survived as far as I know we are not very close 😔 but our 7 yr old son was diagnosed with cancer osteosarcoma 😭😭😫😫💔💔 we were devastated we were rushed to a university hospital we were born and raised in California 🌴 all I can say you really have to work as a team otherwise the chaos will go crazy and we also had a 6 yr old daughter to think about 💕
My dad went to the drs for 4 months with fatigue, feeling "like a bowling ball was rolling from side to side" whenever he laid down. They kept sending him home, saying he was fine. In feb, he told the drs he wasn't leaving the office until they figured it out. Only then did they find non hodgkins. He was gone by August. I dont have much faith in our medical system anymore. My brother actually told me then (1996), they will never cure cancer. Too much money in it. It took me years to believe it. At this point, my kids are all grown and on their own. Id rather leave it in God's hands rather than a dr(s) , hosp, ER, big pharma.
As a survivor of non Hodgkin lymphoma one of the biggest lessons is how much of a family disease cancer is. Everyone suffers in their own way and feeling free to discuss whatever anyone is feeling is so important to everyone’s mental wellbeing.
I was diagnosed at about the same time with WADENSTROM. My family doctor was useless. Instead of looking into my anemia he thought I was bleeding . I told him no I amnot bleeding., He assumed because I was on blood thinner I was bleeding. So I had colonoscopy. Gastroscopy .He is the one who diagnosed me. I could have been diagnosed earlier. I had chemotherapy rituxaban and beta us amine. Sorry about spelling. I was put on anti shingles med and was on VITAMIN D and did not get the vaccine. This type of NHL is not curable. Now my oncologist suspects MULTIPLE MYELOMA. I had finished the chemo and maintence FEB 23. I am also getting IVG treatment . That had more side effects than the chemo.Stay well . I know the feelings that the NHL never leaves you. Being a retired nurse was a double edge sword.
If you do a google search for average iron levels, the top result should give you the averages for men & women in all of the tests that should be done. There are 5. (I'm not trying to be a smartass in saying about a search, I promise. The results are just too long to post here). I've been anemic for nearly 10 years now, and I've had such low levels, they were under the bottom of hell. I have done infusions over the years, and while they are great at increasing the numbers, they take a horrible toll on my body due to 3 other medical conditions. If you have any other questions, please feel free to ask or DM me. If I can save someone from doing an infusion, I'm more than willing to help them!
I have a very similar experience. I had extreme fatigue and several other symptoms. I was fortunate that my doctor was aggressive and recognized my symptoms early on. He got me to a hematologist right away, and I was diagnosed with leukemia, and admitted to the hospital within 22 days. Five weeks later, I’m already in remission. Still undergoing treatment to remain in remission, but moving in a positive direction. Don’t ignore strange symptoms and insist that your doctor listens to you.
glad you pushed for answers and are doing well now!
May God be with you on your healing journey. May he bless you and keep you safe. ❤🙏🏽
That cancer diagnosis is life changing!!! My only symptom was extreme fatigue too- low HGB and very low iron!!!! Colon cancer-stage 3b- had had a colonoscopy 5 years before that was normal- took 3 months of other tests until they finally did another colonoscopy! Now 8 years cancer free!! Can identify with your story.
Thank you for sharing! My journey is similar to yours. I dealt with extreme fatigue for 2 years starting in 2006 and was being sent to every specialist imaginable. Of course cancer is the last thing anyone thinks of. I was diagnosed with Waldenstrom's in 2008 at age 56 and over the almost 17 years now I have been treated 3 times, most recently in 2022. Now at age 73 I am really feeling great and also find that daily meditation helps keep me in the right mindset. I have heard that we may die with it but probably not from it. I hope this gives you hope for a long life!
What a kind heartfelt note to send to this gent in need. You inspire others!
Hi! if you would like to share your story please fill out our intro survey: thepatientstory.com/share-your-story/
I have had Waldestroms for 9 years. It took the hospital 3 months to figure out! My husband was very supportive like your wife. Support helps your journey to healing! So pleased you’re doing so well.. ! I like your advice about finding the right doctor..
I'm so glad that your doctors and you have found some treatments to keep your WM under control for eight years. It looks likely that a cure for MM is coming soon. There are new treatments being discovered every few months for both WM and MM. I hope that you'll have a lot more years to enjoy your life and that a cure for WM will be coming soon too. Good luck and God bless.
Hi Jill, if you would like to share your story please fill out our intro survey: thepatientstory.com/share-your-story/
Inspiring courage and character. God bless you and your lovely family !
thank you for the kind comment :)
Unbelievable. So sad. I run also. Thank God you were diagnosed and now can work on it. Will pray for you.
thank you for thinking of him!
Beautiful family. Prayers for you.❤
♥♥♥
Thank you for sharing!! Enjoy your life and your family!!
thanks for listening to his story!
I love this video! Thank you! My cancer was breast and I was treated at MSK here in NYC). I think the prominent cancer research centers are the best places to get treatment, if someone can go to one of them, but less-renowned hospitals can be excellent, too. Your kindness and compassion to your wife and children are so evident. Wishing you and your loved ones all the best. (And yay to Massachusetts! I can’t help saying that.)
Blessings To You From A Stage 1c Breast Cancer Survivor 🙏🏽💐
@ Thank you so much! And blessings to you, too! I’m doing well; it’s been twenty-five years and no new cancer so far. 🥰
@@Ceerads Amen 😊
@ Thank you! To you, too.
glad you got great treatment!
What a great testimony ! God bless you!
♥♥♥
Thanks for sharing
Hope healing comes
thanks for listening!
You’re definitely on my prayers! We’re in this together.
I have been having extreme fatigue for years. Have had low red blood cell count for over 2 years i have a auto ammuine disease so that what they are saying it is. I hope and pray it is not cancer
we hope you get the answers you feel comfortable with!
Same. God please cure this dear soul.
Such an inspiring story. Bless you and your family.
thank you for watching!
Thanks for sharing.
Isn't it amazing what has been learned about with cancers?! I had my first appointment with a Hematologist a few days ago. I have the same mutant gene DDX41 as my brother. He's in hospital now fighting his last bit of time left with 2 blood transfusions a day. They're helping enough at the moment to keep him alive but we don't know how many days left he'll have with us. Anyhow my appointment was by phone. This Dr wasn't too worried about the mutant gene but there was something else that was just slightly elevated and she wants to see how it shows up every 3 months when I have A1C done for my diabetes and my CBC with my Internal medicine specialist for my Ulcerative Colitis. I also have asthma and very early stage Emphysema. She want to keep an eye out for pneumonia as she said with COPD, pneumonia is high risk and as disease grows, pneumonia will happen more often. Of course I have not mentioned this to my brother and his family. They have enough stress to deal with him being near end stage.
I wish you many good years with your beautiful family! 😊🇨🇦💗
Your bravery shines through your text and your spirit stay on course.
we are thinking of you and your family during this difficult time :(
My aunt had non Hodgkin lymphoma and survived as far as I know we are not very close 😔 but our 7 yr old son was diagnosed with cancer osteosarcoma 😭😭😫😫💔💔 we were devastated we were rushed to a university hospital we were born and raised in California 🌴 all I can say you really have to work as a team otherwise the chaos will go crazy and we also had a 6 yr old daughter to think about 💕
wow- we are so sorry to hear your family is dealing with all of this :(
My dad went to the drs for 4 months with fatigue, feeling "like a bowling ball was rolling from side to side" whenever he laid down. They kept sending him home, saying he was fine. In feb, he told the drs he wasn't leaving the office until they figured it out. Only then did they find non hodgkins. He was gone by August. I dont have much faith in our medical system anymore.
My brother actually told me then (1996), they will never cure cancer. Too much money in it. It took me years to believe it. At this point, my kids are all grown and on their own. Id rather leave it in God's hands rather than a dr(s) , hosp, ER, big pharma.
There are some extraordinary doctors, but they're hard to find.
we are so sorry to hear of his passing :(
I 1000% agree with you and your brother. Sad world we live in that money is more important than human lives.
Agree with you!!
As a survivor of non Hodgkin lymphoma one of the biggest lessons is how much of a family disease cancer is. Everyone suffers in their own way and feeling free to discuss whatever anyone is feeling is so important to everyone’s mental wellbeing.
so true :(
I was diagnosed at about the same time with WADENSTROM. My family doctor was useless. Instead of looking into my anemia he thought I was bleeding . I told him no I amnot bleeding., He assumed because I was on blood thinner I was bleeding. So I had colonoscopy. Gastroscopy .He is the one who diagnosed me. I could have been diagnosed earlier. I had chemotherapy rituxaban and beta us amine. Sorry about spelling. I was put on anti shingles med and was on VITAMIN D and did not get the vaccine. This type of NHL is not curable. Now my oncologist suspects MULTIPLE MYELOMA. I had finished the chemo and maintence FEB 23. I am also getting IVG treatment . That had more side effects than the chemo.Stay well . I know the feelings that the NHL never leaves you. Being a retired nurse was a double edge sword.
How low needs to be the iron in the blood to be considered too low?
They measure red blood cells in the blood
If your red blood cells are low you’re anemic. Either from low iron or from losing blood in the body
If you do a google search for average iron levels, the top result should give you the averages for men & women in all of the tests that should be done. There are 5. (I'm not trying to be a smartass in saying about a search, I promise. The results are just too long to post here). I've been anemic for nearly 10 years now, and I've had such low levels, they were under the bottom of hell. I have done infusions over the years, and while they are great at increasing the numbers, they take a horrible toll on my body due to 3 other medical conditions. If you have any other questions, please feel free to ask or DM me. If I can save someone from doing an infusion, I'm more than willing to help them!
🙏🏻🙏🏻🙏🏻
Prayer for complete healing in Jesus name!!!
❤🙏👍
🙏🌺 ✊
By any chance, did you have weakness, pain in legs, etc? Ive been battling unusual extreme fatigue. No one here seems to care.
seek more opinions if you feel something is wrong!
Find a doctor who will LISTEN to you. You should have extensive blood tests. The doctor should follow up the tests and make referals as necessary.
Sad thing is this.. if he was a woman, he’d have been brushed off, told it was just anxiety and have been sent on his way…
Genetically some ppl can't consume red meat !
🙏🏼❤️🙌🏼❤️🥹😇
Practice mediation early will benefit ,not wait sometime happen to us i
Ask your doctor for cea and ca 19 blood test each year. Half the time at least, that will let you know if you have cancer early
great advice!
how many shots of covids vax did you take💉?
You people are unbelievable.
Oh brother. Are you related to RFK?