I am newly diagnosed with AML. with the inv(3) mutation,

Hi Vickie, welcome to Connect! You’re speaking my language…I got a little misty-eyed with seeing you’ve spent time in the Methodist hosptial and now having a BMT at Mayo-Rochester…where you’ll be spending more time in Methodist on 9-4. I feel it’s my home away from home. It was 5 years ago yesterday that I received my BMT there! I had AML at the age of 65, and am now cancer free, living a fantastic 2nd life! So I’m exited for you to take this next step. You’re in outstanding hands with your team in Rochester! Haha I sound like an ad for Mayo! I admit I am biased but it’s been an outstanding level of care…which continues for the rest of your life.

The type of mutations in MDS and AML can direct the treatment plan. Some mutations can make it challenging to treat or to keep a person in remission after treatment. I had 3 mutations and my only option was a BMT to give me a chance at a normal life span. It worked. So if your doctor is recommending a BMT, they feel this would give you the best advantage to treat your cancer.

I was 65 at the time and I’ll be honest, the procedure and recovery isn’t a walk on the beach. However, I’m now 70 and if I needed to do it again, I would in a heart-beat knowing the benefits of the transplant.
There are many of us in the forum who have gone through the adventures of transplantation. We’re all here to help guide you through all aspects of the process.
Since this requires a lengthy stay in Rochester for you and a caregiver, if needed, I can give you information on lodging, what to expect during the transplant, precautions, etc., You’ll also get several educational sessions while at Mayo to help ease you through the transplant. Do you have any specifics you’d like to know more about?

Hi @marlysmae, I thought I’d just doublecheck to see if you’d read my reply regarding your AML diagnosis and possible BMT at Mayo-Rochester. I’m very familiar with that entire process and would love to help walk you through any questions or concerns you might have.
Here’s a link to my reply: https://connect.mayoclinic.org/comment/1096249/

What is the timeline for your transplant? Has the search for a donor been initiated?

Hi there, I’m on here just to try to get some questions answered for my father. He was just diagnosed with AML and to be honest, I’m not very confident in the dr. He missed this diagnosis and didn’t think he needed a bone marrow biopsy. Long story short, he was hospitalized and very ill and the hospitalist ordered the biopsy and we got the results this past Friday. They want to do chemo both oral and IV. I have requested an appt to have another Dr look at him. We’re waiting for the mutation test yet. What was process for you when you started treatment and how did they determine to do BMT for you? My dad is 83.

Hi @rhskin911. It’s interesting that your dad’s doctor missed the AML diagnosis too! My primary care doctor missed it 3 weeks, with me rapidly declining between each subsequent appt a week apart. A simple blood test the 3rd appt had me rushed to the hospital where I spent 5 weeks, then another week every 28 days for the chemotherapy.
As I learned later, from my hematologist oncologist and my transplant doctor, AML is not subtle and my PCP missed the boat completely on this one! As you can imagine, she is no longer my doctor.
I’m sorry to hear your dad has AML and that there was a delay in getting his BMB. As you’ve found out there are several key elements to the biopsy. The cytogenetics result will let the doctor know the specific gene mutation(s) that has caused this blood cancer. That will help dictate the specific type of treatment. There are targeted meds for some of the mutations.
I can certainly understand your lack of confidence in your dad’s doctor. Getting a second opinion never hurts…two heads and all. However, just so you are aware, depending on the degree of the disease (there is no staging), AML can escalate rather quickly so treatment should be started soon after determining the type of mutations.

As we age, some of the standard aggressive chemotherapy can be very taxing on the body. And to be honest at 85 your dad most likely wouldn’t be eligible for a BMT because of the challenges of the meds and the transplant itself. However, the really good news is there are treatments available for adults who aren’t able to receive a transplant. We have several members who have benefited from these meds. While the meds are not a cure, they can help control the disease.

This discussion in the forum might be helpful with information about the types of drugs your dad’s oncologist may be suggesting for him:

~AML, age 78, taking Decetabine/ Venetoclax, no transplant
Started @lindagi and joined by @immaninja and several other members.
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/

Your dad’s immune system is highly compromised making him vulnerable to illness, so it’s important he try to stay as healthy as possible. Checking his temperature a few times daily can help in detecting any infections. If it reaches 100.4 call his doctor right away. Is your dad still in the hospital?

I was diagnosed with Pancytopenia on January 29th. Got to see a hematologist on March 19th, who ordered a bone marrow biopsy, which was done on April 2nd. Next appointment was three weeks later, April 23rd. I was told I have MDS, which is a blood cancer. Apparently all the tests weren’t in, as I made another appointment for May 8th to see what the prognosis is. I was told it is MDS high risk. The oncologist in Bismarck recommended I go to Mayo, as they may be better with testing. So on to Mayo June 6th, where they wanted their own biopsy done. Was told I would have a video appointment when the results were back, 2 to 3 weeks. A week later, the Doctor from Mayo called, said they wanted me out there as soon as possible. I was then told the MDS had morphed into AML with the inv(3) mutation. It is very rare and very aggressive, also very difficult to treat. I was told they see 5 people a year, at best, with this mutation. I will be here at Mayo for a month, and have an appointment tomorrow with the transplant people, suppose they will tell me if I am a candidate? This is getting too long, but hopefully it can give you an idea of how long it took for me to get anywhere with this journey! Good luck to your dad, hopefully they can treat him so he can still enjoy his life! ❤️

Hi Vicki, @marlysmae. I wanted to wish you well with your visit with the transplant doctor at Mayo tomorrow. This is an area near and dear to my heart. You’ll be in the most capable hands there. I know it’s a big decision to have the bmt so there will be much to discuss. If you have any question or need a sounding board I’m here for you any time. If you don’t mind, would you please let me know what you find out tomorrow?

Thanks for responding. Oh my gosh, wow! I appreciate your information. I hope you get through the treatment as well. I’ll be praying for you!🙏🏼🙏🏼💕💕

To all of you. This road is not easy, and fear is waiting for you. Do not open the fear door wide. Open the question door. I so agree with Lori and although I had my procedure at the COH in California, many of the procedures at top notch hospitals are alike. I believe what i was told early on by a nurse in the blood draw area. The Doctors are often scientists. They look and strive for the cure and what they plan will be the best for what you have.
Second opinion yes!!! I met with a NP at a new Dr. my friend suggested i go to. It was here i got my original biopsy and my diagnosis of breast cancer. She suggested 2 things. Go to a local surgeon or go to the City of Hope. I chose the City of Hope and she said that would be her choice too. I ended up there with being diagnosed with MDS.
A BMT is manageable. So far i have had 3.

rhskin911- Your Dad at 83 is blessed to have you. Let us know what they would like to do for him. Lori has mentioned therapies and i pray one or more will work for Dad.

Hi Lori, I sent you a note yesterday about appointments with transplant people. I don’t see it showing up, so wondering if you were able to see it?

Hi Vickie, I’m not seeing the note either about transplant people. Was this a PM or a reply in the forum?