Leukemia Survivor after 4 Chemos and 2 Bone Marrow Tranplants...ask me anythinh

How much meth did you have to cook to pay for all that?

Ha...gave my life to GOD my friend...

OP has verified with the mods.

Thanks for your help!!!

Awesome. Believer here- I gotta say Praise God! PS- for you unbelievers out there, please don't wait til you have a terminal disease, it may never happen- death is only one heartbeat away. To OP: I've gone through chemo 48 weeks yrs ago, and I must say that I overheard one woman survivor claim that "God cured her" I am sorry but we are ALL going to DIE- I was worried if it came back, that she'd blame our Creator for NOT saving her "this time" to blame God for "curing" or "not curing" is very dangerous. God gives us the strength and faith to believe in Him- we still may get sick and leave this mortal coil. Whether we get ill, or not- God is still on His throne.

AMEN....This person has the WORD. Live life to the fullest...don't abuse the privilege or body we have been given and enjoy the time on earth.

University of Pennsylvania has cured leukemia by using modified HIV to reprogram the body's own t-cells to go after the cancer. It's very new, though. Have you looked into this treatment at all? I assume there are miles of red tape to go through before it's widely available, but it sure sounds better than chemo.

I have not heard this, but thank you. I am to be at the Hospital next week for my weekly check-up and will inquire. The University of Florida Medical Research Team in Gainesville, FL is at the top of the game, so if there is that kind of news they will surely know about it...Thanks again. And, yes, anything is BETTER than Chemo...the saying goes "It's not the disease that will kill you it's the Chemotherapy"....

I have been through extensive marrow donor tests twice this year alone, but have yet to be matched with anyone. Hats off to your donors, and I'll encourage everyone to join the registry to grow the pool of potential donors.

Folks: you have a renewable resource in your body. A few days of soreness and inconvenience is life or death for someone's dad, mom, or child. Join the US national registry:

www.bethematch.org

Kudos to you...Good Luck on your search, I hope you are successful. My transplant coordination team at Shands Hospital at The University of Florida were relentless...They are a few of my hero's.

What type of bone marrow transplant was it, and did you have any long lasting side effects? (graft versus host disease, etc)

I ask because my father is due to have one very soon to treat Myelofibrosis.

I have AML (Acute Myogenic Leukemia) and have had two types of Bone Marrow Transplants. The first was through a family member who was my donor (related donor) and the second is called a "MUDD" which stands for non related donor, Fortunately the Bone Marrow CIBMTR (Center for International Blood & Marrow Transplant Research www.cibmtr.org ) and Shands Hospital at The University of Florida were able to find a stronger match than my brother who was a near perfect match 9/10. Yes I do have currently and will probably always have some type of GVHD...Currently my mouth is affected as well as my forearms with red blotches...not real bad but noticeable. GVHD as you have probably been told can be very mild or very dangerous...It is so important to have a team of Doctors you can TRUST and to follow their advice to the fullest every step of the way. Fortunately in the last 6 years there have been some amazing new anti-rejection medications for made available and I owe my recovery to them and of course my faith... I know many reddit readers may not agree with that but hey I believe what I believe and try and stay focused on my life. In my humble opinion the Oncology/Hematology or Bone Marrow Doctors and Nurses have to be the most compassionate and intelligent in their profession. Please pass along to your father my best wishes for a successful transplant and FULL recovery.

My dad is a 2 time cancer survivor himself with a few bone marrow transplants. He says the best thing you can do to help someone with cancer is to talk to them and be there for them. Is that accurate?

NOTHING is more important than UNCONDIONAL LOVE, UNDERSTANDING and FAITH. Don't be afraid to talk with anyone who has this or any disease...To shy from them is a disservice and a shame. Speaking from my experience at first I was very stand offish, but came to realize that keeping the feelings inside was much worse than being open, honest and free. My Leukemia will be with me forever...nothing I can do can hide it or make it go away, so I embrace it and celebrate the fact that I am strong enough to talk about it and share my feelings...I am not a stand on the corner soapbox person, but ask me and I will share as much as someone wants to know. Your father is a survivor...which in today's world is a rarity...celebrate that with him. Tell him you love him everyday...even if he isn't that kind of person...tell him anyway...Please let him know I applaud he fortitude and courage...God Bless

My grandfather died from AML fifteen years ago. I thought that if it was a lifetime disease it is classified as CML for chronic as opposed to AML for acute?

I've done some research but I have no doubts that you know more than me…on a random chance, has the number 23 come up at all throughout your treatment/disease?

Can't say I have heard of 23...sorry, but as for my knowledge...I am not a Doctor nor do profess to be one but this what I have learned my Doctors that have shared their knowledge with me and what I have read. To my understanding - Acute leukemia is distinguished by a rapid increase in the number of immature blood cells. Crowding of these affected cells makes the bone marrow unable to produce healthy blood cells. Immediate treatment is required in acute leukemia because of the rapid development and growth of the malignant cells, which then spill over into the bloodstream and spread to other organs of the body. Chronic leukemia is characterized by the extreme build up of relatively mature, but still abnormal, white blood cells. Typically taking months or years to progress, the cells are produced at a much higher rate than normal, resulting in many abnormal white blood cells. Whereas acute leukemia must be treated immediately, chronic forms are sometimes monitored for some time before treatment to ensure maximum effectiveness of therapy. Chronic leukemia mostly occurs in older people, but can theoretically occur in any age group. Hope this helps...I am not a Doctor nor do profess to be one but this what I have learned.

I'm going for a bone marrow biopsy soon for possible cml. How painful is the procedure? What is the chance of recurrence for your case?

I live with the occurrence everyday. I was in remission for 6 years after my first transplant and for technicalities and even by my Doctors opinion I was out of the woods...But I guess there were other plans higher up. Bone Marrow biopsy's (I have had 6) are uncomfortable. Depending on your size and metabolism, I would ask the Doctor for something to help you relax...I was give Ativan...(I am not a Doctor nor do profess to know anything about medication, but wow what a great relaxer for the stressful feeling that I have when I have biopsy done.. My hospital used to do it manually where the PA would literally hand drill a needle into your hip and extract the marrow...a very strange pressure and pulling feeling occurs...but in the last year they have used a power drill that takes half the time and quite frankly I didn't feel a thing...Technology is amazing...make sure you ask if they have the power assist drill for extraction, sorry I don't know the medical or technical term for the device but the "power drill" will probably bring a smile to their face and I think they will know what you mean. Good Luck

I'm actually a PA myself and have done a manual before but never asked during procedure "how does this feel?". The tool you're talking about is called an easy I. O. Sorry you're dealing with this. How are you feeling with the fear?

First...thank for being dedicated enough to be a nurse let alone a PA...My PA at Shands is my most trusted source of information...My doctor is great but my PA seems to intimately knowledgeable of my conditions and well being...I am so thankful to all the nurses, PA's and NP's that help me...Honestly the fear l have is truly minimal...I found out 8 years ago I have no control over death and frankly after I realized that, life did become a little simpler. I am not so naïve or shallow to say that I don't think about my disease daily because I do, but it does not consume me. I try to stay positive, laugh at myself and life and eat a little healthier (still live burgers and cheese fries Steak and Shake ROCKS!), but overall I look forward to everyday and am thankful to GOD he has given me not one but many new chances at life.

Hey, can you show some proof?

Yes I posted a copy of my latest blood work which I have done weekly and copy of my meds, which reddit asked for.

[deleted]

Yes...I eat a little healthier and not as much...I love Steak and Shake burgers and chees fries... I walk every day at least 2 miles or more if I am feeling strong enough. After so much time being inactive my legs and muscles are taking a lot of time to regain their strength. I feel so sure that a positive outlook on life and great sens of humor are so important in dealing with my disease and cannot trees enough to try and de-stress some of your life...It is difficult to choose what to get rid of but I assure you once you take the steps to do that life will get simpler and you will smile more and feel better. That's a guarantee fro someone who for 35 years has been in the real estate business and been trough a very difficult divorce shortly after my firs transplant, I am not crying about it just saying that I am happier now and that is what matters most. Keep the Faith and be HAPPY you are alive.

While I have been in your shoes, and I by no means to steal your awesome accomplishment (4 year Hodgkins Lymphoma survivor) I must say congrats! You definitely beat the odds and sound like you have come out much better than I did. My question is how did you react to knowing the diagnosis? I know there are various stages to go through but which did you start with first?

Wow thanks... Congrats on being a survivor...feels great doesn't it?...been hell getting there, but life is good for you I hope. To be honest when I first went to the ER at the request of a doctor friend, I thought I was just anemic like he suggested...When the Doctors and Nurses came into my little ER cubical I new something was up. When I was told I may have Leukemia, honestly the first words out of my mouth were what is that and can I take pill to get rid of it...foolishly thinking it was a cold/virus (that is honest to God's truth...how naïve I was then). So I guess my reaction was dumbfounded...I couldn't figure out how I, a person that has never and I mean never smoked a thing, a non-drinker, healthy, active, 6'2", 200 pound, ex-baseball player could have Cancer...wasn't that supposed to happen to "other people"...Foolish Man... I started first with a 8 month long 24 hour continuous drip of Chemotherapy to get my body into remission. I was in and out of the hospital for 8 months with an avg stay of 7-8 weeks...time flys when you are on Morphine... then when the disease came back I underwent the same type of treatments then my first Bone Marrow Transplant...in remission for 6 years and then it came back....that was more devistaing than the first time because I knew what my choices were and I didn't like any of them, but I chose to have another transplant, with Chemo and full body radiation...no I don't glow....yet. That was on 6/6/12 and 14 months later I am in full remission and feeling pretty good all things considered. I have aged quite a bit...lost my healthy body and now weigh 235....but I will get that off after the meds are eliminated (Prednisone can cause you some weird weight gain and loss)....but I am alive and Thank God each day.

Awesome. I am glad you went that route...I was more of the angry I can't believe this is happening why me kind of way. I was the same way, I thought I was anemic (and I was) but just in a bad way. I weighed 132 lbs at the time of my diagnosis and ended up gaining a lot of weight as I am still trying to get that off. Just not having the energy to do so has taken it's toll. You are extremely strong and I do not know you very well but I am proud of you and I would have given up had it come back a second time.

I considered giving up...but when my children said to me that I had always taught them to not quit, I decided that is I going to die it would not be without a fight because I guess I wanted them to remember that their Dad was leading by example and not taking the easy way out...I refuse to be a quitter...maybe a little harsh, but strength is given to us for a reason...it would be a shame not utilize every bit of it...I know you agree because you are survivor and that proves you are not the quitting type...enough from my fatherly soapbox...

How ill did you feel when you were diagnosed? I'm going in to get tested for it, because I have a lot of the symptoms and my family tends to be cancer prone, but I just don't feel ill enough.

I felt very tired, my gums were swollen and white...difficulty with swallowing was present but not alarming. Doesn't matter how ill you feel....go get a full blood work up at your Doctors office, preferably a Hematologist/Oncologist. Do not be afraid to do this, if the cancer is there, ignoring it will not help. The sooner you can tell the sooner you can get to work on healing...Trust me on nothing else but that fact. Get tested and find out...worrying will do more harm than you possibly can imagine.

What do you mean 4 chemo treatments? 4 different types of drugs?. Reason I ask is because I had ALL (acute lymphoblastic leukemia) and I've had chemo almost every day for 3 years. I get vincristine infused every month still even after 2 1/2 years. I've had more than 4 24 hour long methotrexate infusions alone. I wonder why my leukemia needs so much more chemotherapy? I had radiation done as well.

Also, what was the hardest part mentally? For me it was probably imaging my mother bury her youngest son closely followed by constantly worrying about infection when I had 0.0 WBC

Thanks for asking and I will try and clarify...Over the first 8 months of being diagnosed I was in and out of the hospital an average of every 2 weeks with an average satay of 6 - 8 weeks eah. During thoseweeks I was injected through a port in my chest with a high dose treatment of the Methotrexate you have had to endure (my heart feels for you friend) 24 hour drip for 14 days followed by weeks of nausea and pain (thankfully I tolerated Morphine well). I was pronounced in remission and remained there for 6 months and then re-entered the hospital for the same treatments to prepare my body for the transplant 9/27/06. Six years later I was re-diagnosed and was admitted to the hospital again and underwent another 14 day regimen of the Metho...then 5 days of High dose full body radiation...Then my second transplant on 6/6/12...Its been 14 months and I am in full remission and 100% of my donor...which is to say my DNA is gone and I am now my donor...my body is accepting the transplant, but I do experience mild to moderate GVHD but it is tolerable with steroids and antirejection meds...Mentally the hardest part is remembering the pain and horror that accompanies the treatments...but I truly don't dwell on the illness, I do think about it daily, but I will not and do not let it consume my life...I refuse to succumb. When God calls me home I am ready, my kids know and accept this and are supportive and insistent that I live my life everyday..."No need to worry about tomorrow as today has enough concerns by itself"...Great wisdom to live by...Mathew 6:34...Go figure Huh?

Do you realize how awesome you are! I am so happy for you and I wish you all the best in life! You deserve it!

Thanks, I truly appreciate your words...I really just wanted to be able to see if I could answer questions for folks who may be hurting themselves or their loved ones...

As someone researching Pediatric Leukemia Cytogenetics, I'm glad to hear you're ok! Out of curiosity, do you know what sub classification of AML you had?

I am not 100% sure but I have seen on charts "Acute Basophilic" and the use of the letters "APL/M3"? Does this make sense? Your help is appreciated. I will ask more definite when I see my Doctor next week...Great question.

I have a friend who has leukemia, and she regularly has blood transfusions. She doesn't talk much about it, so I wanted to ask you, are you cured of your leukemia? Is it completely gone? Or does it come back sporadically?

Many people say there is a cure...but I am treated at one of top hospitals in the nation for Leukemia and Cancer treatment (The University of Florida Medical Center of Shands Hospital) and I have never heard the word cured used in relation to the disease. Many people survive after being diagnosed without ever being exposed to Chemo or other therapy's. I know survivors who were diagnosed and underwent Chemo and Bone Marrow Transplant and are entering their 30th year in remission...is that cured? Don't know, but, I will be happy to take another 10 years to find out. My leukemia will always be with me, unless, and someday I positive researchers will, find a cure for cancer...So for now I move on and live life as if I never heard of Leukemia, if I don't it may consume me and that's not an option.

What do you look forward now in life?

This has changed my life. Looking forward, I am blessed to have ajob that allows me to dictate my hours and work from home allowing ne to rest when necessary and work. I believe a good sense of humor, positive outlook on life, faith and the realization that death is inevitable and no matter how much money you have it won't stop it. Acceptance has been amazkng. It has allowed me to destress my life to a major degree and I stop and. Smell the roses when I see them....

My dad died of cancer and he needed several bone marrow transplants aswell.

My question is exactly how bad do they hurt? Cuz at 9 they told me it woud be insanely painful and suggested against donating.

First I am sorry for your loss. Cancer is a terrible disease. To answer your question, I understand that maybe 15 years ago the bone marrow transplant process was very uncomfortable and painful, but with today's technology, my two were as simple as a blood transfusion. The pain (sometime excruciating comes about 10 days after the transfusion and can be very different in every patient. I felt sometimes like I could feel my skin grow and contract, my bones hurt from the inside and for the majority of the time in the hospital (11 weeks for me) I felt as if I had been run over by a truck and then re-run over...All I wanted to do was lay in bed, but thanks to the nurses at Shands Hospital at The University of FL, I got out bed and moved around, which in my opinion is one of the key recovery accelerators. After 14 months my pain is still there, but in different parts of my body, which considering the alternative is OK. My sense of humor, faith and my two children have kept me positive and l to looking forward to life.

What made you ultimately realize you had cancer?

I was playing catch with my then 12 year old son in the front yard of our home and I could hardly throw the baseball 10 feet. He came up and asked if felt ok cause I didn't look good....Went nside and my wife sid I was very pale and she called a doctor friend who happened to be the head of the local ER. He said it sounded like I may be anemic. The next moring I went to the ER where he had "paved" the way and withing 2 hours I had two Mayo Clinics heads of Hemotology/Onclogy standing in front of me with two more nures. I was informed that they were very confident I had Leukemia and that my white blood count was so elevated that if I had waited anoth 24 hours I would have been dead...a very rude awakening to hear that. Over the next 3 hours I had a port surgically placed in my chest and was checked in to room on the cancer floor and thus began a 12 week long chemo treatment. During this time a few of my important glands and functions began to shut down (adrenal and thyroid) which complicated the process and extended my stay..not to mention some very interesting pain that I would not wish on my worst enemy. My wife and children arrived about 5 hours after the first ER visit and of course were horrified to see and hear. But today 8 years later, I am alive and can share what I have learned...mainly this desease as with most thrives on stress...emotional, physical and mental. I have effectively reduced that stress, to the cost of my marriage and income, but you cnt buy your way to everlasting/unconditional love or health for life...Life goes on... :)

[deleted]

There are many indicators check out the Leukemia website (www.lls.org) for great info. But, yes being fatigued is one of the most common indicators. Also swelling of the gums and them turning white happened to me. A simple blood test by the doctors is the best way...The indicators for me was a very high white blood count.