← Return to Acute Myeloid Leukemia with Aberrant CD7

Discussion

Acute Myeloid Leukemia with Aberrant CD7

Blood Cancers & Disorders | Last Active: Dec 22, 2021 | Replies (41)

Comment receiving replies
@lodi

Hello Lori-

Thank you for sharing your hopeful story and for providing insight about the process. My life partner of 30 years is on this horrific journey. He's pre-transplant now and we're hoping it will be less than one month.

We are very research oriented and most physicians offer such limited time and often get annoyed with intelligent questions. It's simple to say that's not the right doctor but for numerous reasons that's often a tall order.

I have a very specific question. We have had all the appropriate genetic tests i.e. NGS, FISH Panel, Cytogenetics, etc. But no guidance on interpretation.
Do you happen to have any resources that might enable us to interpret these very important tests influencing treatment plans, prognosis and diagnosis?

Again, thank you for sharing and wishing you a lifetime of success!

Jump to this post


Replies to "Hello Lori- Thank you for sharing your hopeful story and for providing insight about the process...."

Hello Lori - there are 3 mutations in the cell that is IDH2, CEBPA and NRAS. Yes, Doctor has advised for 7 + 3 chemo therapy plan

Good morning @lodi You and your partner have my deepest empathy for what you’ve both gone through so far with his blood cancer and what is yet to come. There are very few positive stories online. People tend only to post negative stories or grim outcomes. That’s why I feel it’s so important for others to see there are positive and encouraging journeys with happy endings; That we have hope in our battles with Leukemia and other blood cancers.

Of course you’re going to have a ton of questions pre, during and post transplant! It’s crucial you get answers. While I’m fairly knowledgeable about all the tests you’ve mentioned as well a host of experience with the bone marrow/stem cell transplant process and recovery, this is getting into a technical level beyond the purview of what I can provide. Questions this deep regarding results and how they affect your partner’s transplant really need to come from his transplant team.

As you’ve no doubt discovered already, the science behind this entire process is incredibly fascinating. My husband and I are similar to you. We’re all about research, facts and statistics.
As a chemical engineer my husband bombarded my transplant doctor at Mayo with a zillion technical questions and bless his heart, my doctor had endless patience in answering. Treated us more like colleagues than patient/doctor. But at some point, even the most thoughtful doctor will say, “I’m here to take this burden off your shoulders. Let me worry about all of this for you.” The level of understanding and interpretation of results at this point is why you’re paying these doctors and staff.

Since your partner has already gone through the crucial testing with Cytogenetics, Next Generation Profiling and FISH panel, etc., he probably has a patient portal with the clinic where the transplant will take place. From my experience with my transplant, anytime I have a question that doesn’t get covered in an exam, the team welcomes questions via the portal. That way they have time to reply and not use up crucial appointment time where immediate concerns needed addressing.

I’m here anytime you have questions or concerns. This is a great community where we use our shared personal experiences to help each other. So you will find other members will pop in with encouragement as well. I hope you and your partner will feel comfortable sharing his story with us. And you, as a caregiver have so much to offer as well!

Have you tried contacting his team via portal?

If you don’t mind sharing, where is he having the transplant done?

Hi again! I’m also curious if a donor has been found for your partner?