NOT GOOD NOT GOOD NOT GOOD. IM ON THE PHONE WITH INS. DOC WANTS TO TRANSFER ME TO SLOAN KETTERING. NO SIGN OF CLL IN BONE MARROW. SLMOST ENTIRELY AML WHICH IS BAD. They want me in before the weekend. 😳
How does this happen?????
NOT GOOD. NO CLL IN BONE MARROW. AML. OMG OMG.... - CLL Support
NOT GOOD. NO CLL IN BONE MARROW. AML. OMG OMG. THEY WANT TO TRANSFER ME IMMEDIATELY TO SLOAN KETTERING
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JerrysGirl3
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116 Replies
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You hang in there and stay glued together….much love and many prayers coming your way. Please as you are able stay in touch with our community as we continually learn from each other. You are in a good location for some of the best doctors. Seek help from someone they have who will assist you and help you navigate thru this new battle you are dealing with.
Just know how much we care and are in your corner….sure wish for a real miracle for you!!!🙏🙏🙏🤞🤞🤞👍👍👍🙂❤️
Thank you ❤️
I think going to Sloan Kettering would be a good idea. I realize you are scared and I can’t imagine what you are feeling but maybe they can clear it up once and for all instead of all the uncertainty.
I don’t think anyone can answer how this happens. But being at such a good institution should give you confidence.
Unfortunately, if it is AML you will not have the luxury we have with CLL to google everything for months or years on end to understand what is going on.
I hope they can provide you with clarity. Please keep us updated.
Thank you ❤️
I'm sending thoughts and prayers your way now.
If it were me, I'd take the transfer as well.
Yes. No second thought there and my insurance has a special cancer program that covers 100% of all expenses at Sloan
Jm954Administrator
I'm sorry to hear this, it's all your worst nightmares. Most cases of AML need treating very quickly and you will need some sort of line, a Hickman or a PICC. The line will make your treatment co much easier and more comfortable.
I wish you all the best, please let us know how you are.
Jackie
I hope they let me Take a shower first lol. Been awhile
NewdawnAdministrator
I’m seconding Jackie’s best wishes. This is a major worry for you but you might now get the level of attention and treatment you’ve needed.
Really hoping all goes well.
Newdawn
Thank you so much ❤️
Kerry! Such a total shock for you to suddenly be in new scary diagnose! I can imagine the fear. Thanks for giving us updates, and thank God that you will be among specialists soon. They will do the right things! And that your insurance covers everyting. All my blessings!
Christina
I shall try to update you and start our chats again soon ❤️❤️
OUCH! Sorry to hear this news. But maybe they will cure you! Strength and courage!
One can only wish lol❤️
Wishing you well, thank goodness you're going to a well respected hospital with experts who can finally work out exactly what's going on. It's good your insurance covers everything so that's one less worry. Please keep us updated when you can and good luck.
Thank you. Will do ❤️
You are in good hands & what a relief not to have to worry about cost. Sending lots of prayers! 💕
Thank you. Yes. ❤️
Kerry please know that you’re in my prayers. Thinking about you and wishing you the very best.
You and me should start a club 😁❤️. Good luck to you 😁❤️
🤗🤗🤗💓💓💓
😊❤️
Lydia, what is going on with you? I had family here for 3 weeks and lost track of what might be going on with you. Panz🙏🤞🙂
Sending best wishes to you, I understand your fears,you’ll be in the best place.
Peggy
Thank you ❤️
I'm so sorry to read this. I can't believe it...the good thing is that they know what they are dealing with. No wonder you have been having such a difficult and at times confusing time with treatment and your body reactions...I would take that offer up as well. You want to be somewhere where they will make their absolute best to get you out of this situation...I'm wishing you all the best. Really hope it all goes well. Be strong 🙏🏻🙏🏻🙏🏻Petra ❤️
I believe I'm getting transferred tonight. A lot of strings were pulled to make it happen so quickly. Happy but kind of frightening at the same time.
I'm really upset you know, this really got me. Just because it's so so unfair on you - I know it's pointless to say that but it's a fact. I'm happy you are going tonight. It's a great hospital, they will do their best to make you better ❤️🙏🏻❤️🙏🏻❤️
Didn't go tonight hopefully in am
Thank you Poodle 😊❤️
Sorry to hear this,you must be scared. Transferring means you will get specialist attention that may solve the challenges you have been having. Sending best wishes to you. Take care
Yes. Thats what I'm hoping for. Believe transfer willl be tonight.
Thanks Jammin ❤️
Sending thoughts and prayers to you .
Thank you. Oddly enough I was going to say I felt like screaming but I have absolutely no feelings about anything which I think is for the better. Make me more compliant for the doctors 😉❤️❤️
Well that absolutely sucks! Keeping my fingers crossed that your rollercoaster ride will get a little smoother soon with the expert care. Sending ginormius hugs 🙏💚🙏
Yes it does 😁😉 Thank you❤️
Sorry to hear about that. Did they misdiagnose you from the very beginning?
No. It just changed like literally overnight. However .....maybe if a certain doctor had done a bone marrow biopsy a few years ago things would have been diagnosed sooner 😵💫
Wow. Could it be a rare treatment side effect? I'll keep you in my prayers 🙏💘
I think AML generally comes as a surprise. Like you said, “..literally overnight.” Also, the likelihood of finding the cell of origin a few years before the disease blossoms is probably nil. You and your doctor didn’t do anything wrong. This is how this disease works.
“It takes at least one year for this one single cell to grow up into an acute leukemia.”
youtu.be/xZI9oidbHjw?si=mDm...
Keep us updated! Hope you find a more educated AML community in the meantime too.
I’m sorry you’re going through more hardship. I was hoping for you to have a rest but at least you’ll be with doctors who will help you and give you some relief. I’m thinking of you and praying for a good outcome.
You deserve the best care possible. You’re in my thoughts and my heart.
Thank you ❤️
so sorry to hear this , you are going to the best place , good luck 🤞 xx
Thank you ❤️
So sorry that this new battle is challenging you, wishing that all goes smoothly. Hang tough.
Bubnojay
Thank you ❤️
Sending you a hug and praying for a good outcome!
💜
I’m praying for you
😊❤️thank you
Sending lots of love, and prayers for your treatment and for your inner strength and peace. Wishing you comfort and restored health!!! 💓🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻💓
Thank you ❤️
At Sloan Kettering you will be in good hands. Prayers for knowledge and strength. 🙏Sally
Thank you ❤️
You deserve the very best treatment and that is what you will get at MSK! Sending hugs and prayers for strength. Only positive vibes coming your way.
Nan
Thank you. I have so many people praying for me I feel so protected and loved 🥰. And always know that if it doesn't work for me it's just means someone else needed them more. I'm always up for sharing 🥹❤️
Hello JerrysGirl3
Blessing, go for the cure.
💪🏻💪🏻 I'm trying. Or to quote one of my favorite book titles "I'm Dancing As Fast As I Can". ❤️
Hi,
Sloan Kettering is an excellent facility and I am certain you will get not only results, but a treatment plan. I’m incredibly sorry that you are going through this. I’m hoping that you get the answers you seek, but more importantly, an effective treatment.
Sending many, many virtual hugs your way.
Sandy
Thank you. Me too❤️
Please take transferring to Sloan as a blessing- because when they were transferring my hubby to Dana-Farber- we were too frightened-but this transfer was a blessing in disguise and miracles after miracles have happened- soon you will be with the top experts who know exactly how to help you and I do believe you will be in less pain too - you are in my prayers
Im a patient at Dana Farber. Sloan Kettering along with Dana Farber and MD Anderson center are top notch for care!!’ I’m sure JerrysGirl13 will be in the best hands!
Absolutely- ty for sharing 💓
Thank you. Thats good to know about the pain!! 😳❤️
prayers for a quick route to the best treatment. My daughter worked at MSK prior to moving back home to Texas- it is the best place for you. Bless you!!
Laurie
Thanks ! ❤️
So glad you are near SK! That will make all the difference. Will be praying for you!
BeckyL USA
Thank you ❤️
Sloan Kettering sounds like a very good idea x sending love and hugs. We are all thinking of you xxx you’ve had such a rotten time. Keep us posted x 🤗🙏
Thank you ❤️
You are once again facing an immense challenge to your health. I am glad to see that you were going to Sloan Kettering to get treatment. You’re right that AML is a very scary thing. On the other hand as with CLL, the treatments for AML have advanced quite a bit. I’m sure the first thing they will do is to put a port in so at least you won’t have to worry about being poked all the time. Do look at all the different services that they offer. When my husband was in the hospital with AML he received massages as a free service. He had a choice of beautiful, relaxing music. It was the one thing that really helped him to relax. Best of luck with all your treatments.
Thank you! That sounds wonderful ❤️
I’m glad you will be getting excellent care. Praying for the very best for you. 🙏🏼💕
Thank you ❤️
I just said a prayer for you, JerrysGirl3, and for all cancer patients. Keep us posted so we can continue to support you. Warmest hugs to you and your family. ❤️
Thank you ❤️
I've heard Sloan Kettering is a good place. That may be a blessing in disguise my friend. You are finally getting the docs moving that's for sure! Are they saying your CLL transformed into AML? I don't come to the group daily so I was trying to figure out what's going on with your recent posts. I have a feeling you will get better care at Sloan Kettering. I can't imagine what you must be feeling. Is someone with you?
Nope heading there by myself. Husband has double pneumonia. Daughter may have Covid. Once again the path is always mine to walk alone I guess.
You are not walking the path alone because we are with you. We are all cheering for u! Strength in numbers. 💪💜
Thank you❤️
Adding to the huge number of prayers and wishes for the best enveloping you as you start this new journey. Eleanor xx
Thank you ❤️
Jersey girl
I am so heartbroken to hear this. I haven’t studied AML so all I can do for now is pray for you, tell you of my deepest concern and hope for the best
God bless you
Skipro
Thank you ❤️
Healing vibes heading your way. SK has an excellent reputation so you are in the right place now. If you can please keep us updated.
From NIH/NCI
Diagnostic Evaluation
The differentiation of AML from other forms of leukemia, in particular chronic myelogenous leukemia and acute lymphocytic leukemia, has vital therapeutic implications. The primary diagnostic tool in this determination is flow cytometry to evaluate surface antigens on the leukemia cells. Simple morphology is not adequate in determining lineage and, at a minimum, special histochemical stains are needed. While a diagnosis can be made by evaluating peripheral blood, a bone marrow biopsy is used to evaluate morphology and cell surface markers, as well as provide material for cytogenetic and molecular analysis. A peripheral blood or bone marrow blast count of 20% or greater is required to make the diagnosis, except for cases with certain chromosomal abnormalities (i.e., t(15;17), t(8;21), inv(16), or t(16;16)).[4]
Prognosis and Prognostic Factors
Advances in the treatment of AML have resulted in substantially improved complete remission (CR) rates.[2] Treatment should be sufficiently aggressive to achieve CR because partial remission offers no substantial survival benefit. Approximately 60% to 70% of adults with AML can be expected to attain CR status after appropriate induction therapy. More than 25% of adults with AML (about 45% of those who attain CR) can be expected to survive 3 or more years and may be cured.
Note the "may be cured".
You are going to one of the best institutes for this effort. Focus on the desired outcome and advocating the best option first.
JM
Wow! Such great information ! Thanks ! ❤️😁
Hi don’t know where you live but in NYC we know SK is the best place to be with complicated diagnoses. I have no medical info to offer but already you are on my prayer list. Hold on we are with you!!🙏
Thank you. At this point I have no clue what's happening to me. It's a sin. Making me think I'd be dead today if I wasn't transferred to Sloan by end of day today 😡😡. What a terrible thing to do to me when I am all alone dealing with this 🤦🏻♀️
🌷🌷🌷Consider this a bunch of fragrant flowers.
I will 😊😊❤️
I really love the visual and aroma filled picture ❤️❤️ I can see and smell them
I treat at MSK, you are in good hands. Take a deep breath, and let the Drs help you. I wish you the best, think positive. You’re in good hands. 🌸
Thanks. Good to know !
JerrysGirl3 - We are keeping you in our thoughts. I don’t know anything about AML ( I had to look up what it meant) but it’s always better to know what’s going on than not.
Please keep us posted as you are able.
Patti
Will try
Here are some highly technical insights that might help if you have genetic results yet.
It’s hard when things happen so quickly because we don’t have time to process it. Praying that God’s healing hand is on you through all of this. He is always with us. Love, hugs and prayers to you. ❤️
That's exactly what's happening. It's happening too fast 😕
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