Acute Myeloid Leukemia with Aberrant CD7

Hello @gaurav1414 Welcome to Mayo Clinic Connect. In this community based forum, we’re not medical professionals so we can’t diagnose health problems or prescribe treatments. However, we can share our own personal experiences and insights to help find answers, give suggestions, offer encouragement…and hope.

I know first hand the range of emotions you and your wife must be going through right now. A diagnosis of AML is frightening and your world just turned upside down. If it’s any consolation or encouragement at all, I was diagnosed 2.5 years ago with AML with an FLT3/ITD mutation, which is one of the most aggressive forms of leukemia. Often associated with that same diagnosis is the variant of CD7. This blood cancer can be challenging so a speedy treatment is crucial. Once the disease is in remission it is quite likely that a bone marrow/stem cell transplant will be suggested to control any possible relapse of the AML.

I just celebrated 2 years out from my stem cell transplant, in full remission and my transplant doctor is highly encouraged that this has been successful. I’ll be upfront and tell you that this will be arduous for your wife. However, I have several friends whom I’ve met along my journey, all of us with the same AML-FLT3/ITD mutation who are living proof that this can have a positive outcome! It’s crucial to keep strong and positive.

Being the caregiver will be equally as difficult as you’ll feel helpless sometimes with how ill your wife might become. You’ll need to have a strong support system for yourself while you support your wife. So don’t be afraid to talk with people you love and trust. Take time out for yourself to decompress and please don’t hesitate to reach out here on Connect! There are several of us in this group who have walked the same path.

The general course of treatment begins with what’s called a 7+3 induction. It is strong chemotherapy required to induce remission and requires usually an initial 5 weeks in a hospital.
Is this the treatment your wife undergoing at this time?

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!

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?

Hello @gaurav1414 Your wife and I shared some of the same mutations that have gotten us into trouble. My hematologist/oncologist called them “the list of usual suspects’. They aren’t common but many seem to occur with each other.
The best thing now is to let the chemo do its job. The protocol your wife is on is the byproduct of years of clinical research and statistics. It’s highly effective in eliminating leukemic cells from the body. I know the mere mention of chemo can put fear into the strongest hearts. But honestly, I actually felt better during chemo since it was killing the cells and the high fever I’d had for 2 weeks previously finally went away!

The 7 + 3 stands stand for:
Cytarabine chemotherapy given in a continuous IV over 24 hours for 7 days.
Then either Daunorubicin or Idarubicin given in the IV over three hours once daily for 3 days.

Around day 14 your wife will have another bone marrow biopsy to check progress. If there is no evidence of leukemia in the biopsy, she may be able to go home when her white blood count returns to normal readings in 4-5 weeks. If there are cells detected she may have another round of induction chemo.

Because I had a high risk of relapse, my long term plan required a bone marrow transplant. But it was a few months out from my chemotherapy induction. So I had to return to my hospital every 28 days for another week of chemo and did that 2 more times. When I had a transplant date, I then went through what’s called Consolidation. Your wife will have that too. The timeframe depends on what her oncologists decide is her best treatment plan.
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Tips for being on chemo!

Encourage your wife to stay as active as possible. Walk as much as she can around the hospital wing. This is vital to keeping a positive attitude and helping her feel better during chemo!

While you’re wife is on this chemo regimen there are changes taking place. Her bone marrow is being wiped clean and she will have a severely impacted immune system.
So she’ll most likely be on antibiotics, antifungal and antiviral medications to act as a temporary immune system for her. Because all the antibiotics deplete our normal gut bacteria, probiotics are important. I ate Activia yogurt daily mixed with some ground flax seed. It really helped avoid the nastier side effects of the antibiotics.

She may become nauseated from the chemo. The nurses are great with offering help with that! There are several meds that work wonders!!

Because of the nature of the chemo, it kills all fast growing cells. So she may also lose the tastebuds on her tongue. Food might be a challenge for taste and consistency.

Extra caution needs to be taken to prevent infections from bacteria or fungus. The hospital will most likely not allow any visitors or fresh plants or flowers. I wasn’t allowed mail unless it was sprayed with disinfectant.

Food such as deli meats, bagged lettuce or artisan cheeses are out of bounds because of too much risk for listeria bacteria. Wash all fruits, including bananas before offering them to your wife.

Her platelets will become dangerously low and she may need several platelets infusions over the course of treatment so don’t be surprised by that.

She may lose her hair…if that is worrisome for her, many of us chemo people are proactive and shave our heads! Gives us some level of control!

I know this is a lot of information. Is this helpful to you? Is there anything specific you’d like to know?

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

Hello Lori - Is your transplant done and how much HLA matching was your donor 10/10. I mean 100% matching. Also can I connect with you over the call?

Hi, I just celebrated my 2nd anniversary of my transplant. My doctor is quite encouraged that I’m now past the normal time period where AML could re-emerge. So we’re very optimistic that I am in a stable remission.

I was fortunate to match my donor 10/10 in HLA markers. “He” and I make a really great team as my new immune system is strong and healthy now.
Has your wife’s doctors discussed her need for a transplant soon after her treatments and why it’s necessary?

I’m not able to take personal phone calls. We really encourage our discussions to be on this open forum so that they might benefit other members.
However, it is possible to send me a private message by clicking on @loribmt. It takes you my page where you will see “Send Private Message” under my bio. I’d be happy to do what I’m able to help you and your wife.

Hi Lori-

Forgive me for the delayed response. We are due to have the transplant on the 20th of this month and we had to make some tough decisions. We are doing the transplant at a community hospital in Orlando. My preference was to go to a larger academic facility but my long term spouse/partner wanted the comfort and convenience of our own home, which I do appreciate. Plus treatment is so challenging after the 90-100 days are up, and you return home.
They will not treat him locally unless he does the transplant here as they have too many patients as it is to manage. So he'd have to go to ER here and be transported by ambulance to Moffitt in Tampa. Very complex.

We would have had to get an apartment for 90-100 days as well in Tampa. So, we really don't have the luxury of leaving town, the doctor here has a very good reputation and the nursing staff is wonderful as we did his first chemo treatment on their transplant floor. They have 32 patients and all are managed by one doctor and one clinical director plus support staff. There were two doctors, but a very fine doctor just left to take another position.

Regarding communication, the medical world from my experience is riddled with problems on every front and I've had a fair amount of experience navigating that reality for both my parents, myself and friends. So I am very confident in my patient advocacy skills which can only take you so far. Doctors are stretched, time is short and often they find it an annoyance to answer questions, almost across the board. Likely that is less so at larger academic facilities as they have a much larger staff.

So, there you have it. Much more to this story, but too long for a forum.

I have an important question. He had one induction and one consolidation treatment. The transplant is scheduled 60 plus days from his first day of his consolidation. I have been told that this is a very long time to wait and there is a concern as a result. Some doctors believe he should have some low dose chemo in pill form prior to the transplant. It is very worrisome.
He is having a BMB on Thursday and they will be looking for less than 3% blasts.

We are both suddenly getting very frightened and sometimes we just don't have control over our lives. That's just how it is. No one can comfort you really as no one is living your reality. And as I likely mentioned, neither of us have any family or children but we do have some very nice friends fortunately and we have had a wonderful therapist who is more like a friend for the last eight years.

Thank you again for your kindness. I was put together with another caregiver who is exceptional and we have so much in common. She is proving to be invaluable and is so generous with her support.

Take care,
Lodi

Hi Lori..
This was buried in my last message. So I thought I would answer it directly just in case. Yes, they have found a donor, a 7/8 match and the transplant is scheduled on the 20th of August, 64 days since the last treatment...the first Vyxeos consolidation.

Congratulations on your continued success and for your valued support as a high quality mentor! The world needs more people like you who are so uplifting.

Sincerely,
Lodi