Acute Myeloid Leukemia with Aberrant CD7

Hi Lori-

Thank you for your suggestion. I find some doctors and support team members do respond through the portal, while others do not. Not much we can do about that, but it can be very frustrating as all facilities always suggest the patient portal for communication, but in some cases either ignore the question completely or might reply weeks later. I find communication to be the most difficult part of patient care today. I'm sure this is far less of a problem at facilities like Sloan Kettering, Mayo or other top cancer institutions.

For many of us out here who aren't able to access those top level facilities, it's tough. Hoping that more medical professionals will somehow be offered better incentives to encourage them to join the workforce as the shortages put a lot of pressure on staff. And, their lack of available time means they don't have the luxury of answering many troubling questions. This is disheartening for so many, most especially those with life threatening conditions. After all, we are not buying a mattress, we are buying more time on earth with less suffering for ourselves or our loved ones. It would seem that communication, compassion and concerns about patient dignity, should be a very high priority.

Hoping I am not deviating too much off topic, as this maybe belongs in another section. But I am passionate about patient advocacy. I hope one day to volunteer for the rights of the elderly or possibly a group like yours.

Take care,
Lodi

Good morning, Lodi. Now I’m late in responding! Lots of car travel in the past 2 days. So grab a cup of tea or coffee…I’m up for a chat today!

A little more than two years ago, my husband and I were at the same point in treatment as you and your spouse. Where you’re watching the clock tick, filled with anxiety and uncertainty of what’s to come! Whether the leukemia will remain in remission or at least be controlled enough for the transplant. It’s so stressful and my heart goes out to both of you!

I swear, the caregiver shoulders more of the brunt of this journey. As a patient, we’re pretty much along for the ride, directed by the transplant team. The information you receive as a caregiver just can’t completely prepare you for the daily changes or obstacles you’ll be facing. It’s not until something is actually occurring that you can put the relevance of the information to the test. In the beginning it feels overwhelming! But the transplant team should have numbers for you to call and usually have great support staff such as Nurse Practitioners and Coordinator so help you and your spouse along every step of this journey.

And you’re so right, the lack of control over your lives right now is frightening. My husband is a chemical engineer. Everything in his world is mathematics, statistics…with predicable outcomes. My AML journey initially derailed his orderly world until he got back on track. You’ll both get there again too! I wish I could reach across and give you both a hug.

60+ days is a stretch between consolidation and transplant. It’s good to see your spouse will be having an BMB tomorrow to check progress. The results will be important. If there are few blasts that’s the best news…then full speed ahead. However, if a significant amount of blasts are present the doctor most likely will suggest another round of consolidation along with a abrogator such as Midostaurin. It could delay the transplant another month or so. There is evidence that the cleaner the biopsy going into treatment the greater the success of the transplant. So a delay, while disappointing could be beneficial if needed. I went through 1 induction and 2 consolidations because of the timing with getting my donor.

I’m just assuming because of the AML this is an allogenic transplant. I’ll be upfront and let you know it’s an arduous, complex procedure and often comes with unexpected complications that need to be managed on short notice along the way. I had several return trips to the hospital for some issues during the first 100 days. Will you have 24 hour access to the clinic if needed?

As you’ve possibly learned through your research the first 100 days are crucial to avoid infections or illnesses. The new immune system is generally very aggressive and looks at the body as an invader. So if it perceives a threat it can over react, attacking the body and that’s called Graft Vs Host Disease. After the 100 date mark, generally any GvHD tends to come on slower and is less challenging. I’m happy to talk about that in the future if you have any questions.

But please know there is light at the end of the tunnel. If successful, life returns to normal! I just read a FB posting today in the memory feed today. It was day +37 post transplant for me and told a remarkable change in that month’s time! Now I’m 2 years later 100% normal!!

You’ve mentioned that you have been paired with another caretaker. That’s excellent. She’ll be a great resource to help you through some hurdles. Does your spouse have someone who has gone through a transplant to speak with? Unless someone has walked the walk they can’t give really know what that journey is like
I’m here to offer any encouragement and will give him frank, honest answers. This is no walk on the beach and will test his resolve. But from experience I can tell you, the outcome and the exhilaration when you realize you’ve beaten AML with the help of a stranger’s immune system is extraordinary. The spirt of endurance is the greatest adrenaline boost you can imagine.

Does your partner have a secured donor yet?
Wish him well with his BMBX tomorrow. Finger’s crossed!

Hi Lodi! You’re not deviating at all. It’s wonderful that you have the attitude, moxie and intelligence to keep fighting for what’s right! We need more people to lead in the battle!

I share your frustration with some of the medical conditions and lack of communication. I was part of that early in my AML illness. I was super healthy. Within 3 weeks I went from walking 10 miles daily to hanging on by one toe from the grave! PCP just kept brushing me off. Each week I’d return telling her I’ve never felt this sick in my life. I felt dismissed because I was 65 and not worth the effort to have a CBC taken…until I ended up in the hospital…the rest is history.

Anyway, we need volunteers for the rights of the elderly! I helped out a great deal when my mom was in a nursing home. I had to be present all of the time to make sure she was receiving the care she needed! We have to be so assertive to keep on top of things. It’s really sad our medical providers are so stretched beyond their limits for all the reasons you mentioned! I was fortunate enough to have top tier care at my local hospital with an outstanding oncology center. And then Mayo Clinic…I’ve never seen anything like the care I’ve received there…. 2 years later and I’m still as relevant as I was while getting the transplant. As my team is fond of saying, “We’re married for life.” But not everyone gets that lucky. Healthcare shouldn’t be left to luck!

As for your wanting to be a volunteer in Mayo Clinic Connect, you already are! You’re a member! We are all here, peer to peer, sharing our stories and experiences to help each other. Feel free to search the groups and jump in where you feel you can contribute! We have a great caregiver group, BMT/SCT transplants…you’ll find me there as well as other SCT patients…survivors!!

Have you looked in other groups?

Ooops! Missed this one! Congratulations on the donor! The first hurdle out of the way. That’s a relief. Do you know anything about the donor? I’m always curious. We’re not allowed to know much personally but you’ll be able to know the age and sex of the donor. Mine was a 20 year old male from the US. So I know have all male chromosomes. LOL.
No! The answer to my most often asked question of whether I have a stash of um, “questionable reading material” under my mattress. Hahaha nope, just quilting magazines. 😂

Thank you for really sweet compliment. We get enough negativity in our lives so if I can offer any encouragement or hope to someone’s day, along with some answers…it’s very gratifying.

Hello @gaurav1414 I haven’t heard from you so I wanted to check to see how your wife is feeling. Has she started her Chemo treatments yet?
I know it’s very frightening not knowing the outcome of her diagnosis. Let the chemo work for her. It’s strong and has the capacity to get her to remission so she can have a bone marrow transplant. I know you were concerned about that too.
Were you able to get my response to your private message? Do you have any more questions?

Hi @lodi thought I’d pop in to see how the BMBX went last week. I know it takes time for all the reports to be returned but there are usually some preliminary findings within a day or so. Any news on the blast count? Finger’s crossed for a big zero!
Will your spouse be heading to the clinic next week for a load of pre-transplant testing?

Hi Lori...Thanks much for thinking of us and of so many for that matter!

No results yet. Constant pre testing. We see the oncologist tomorrow.

I wish doctors would have more empathy when it comes to delaying notice of results. So far we remain in total darkness about the donor. Will ask the BMT doctor this week when we see him. Posting on the portal mostly useless.It's definitely not the world I grew up in.

Until people rise up and demand to be treated respectfully, nothing will ever change. Very sad state of affairs. Sometimes I feel some receptionists, nurses and medical staff in general treat inquisitive cancer patients who are trying to buy quality time, like they are buying a refrigerator at Costco. How wierd is that! And we accept the cold harsh treatment because we are beaten down already and are rendered powerless.

Thanks again for the kindness!

It is a frustrating waiting for results, that’s for sure. BMBXs take time to process. Even though I had the advantage of having on site labs at Mayo, it took several days to get results from the many I had done there.
When getting biopsies taken at my large local hospital, 4.5 hours from Mayo, those tests had to be couriered TO Mayo for testing and results.

So I’m taking a shot in the dark that your spouse’s tests had to be sent to a larger facility. The biopsies are actually bone marrow biopsies AND exams. They’re incredibly detailed, complicated and difficult. They’re not like sending a blood test and having those results in 15 minutes. The BMBX take several days for the hematology, cytology and morphology reports to come back. Often within a day or so a preliminary result of one portion of the test might be back. But again, if your partner’s core sample needed to be sent out for testing, it will take a good 5 days unless all the parts aren’t needed pre-transplant. Mine involve chimera testing and since your spouse hasn’t had a transplant yet, he wouldn’t have that test.

As far as the donor goes, you won’t get much information about the donor. Legally it is all absolutely anonymous and private. Even Mayo Clinic didn’t know the exact name or personal information of my donor. All I was allowed to know is that he was a 20 year old male from the US who matched me 10/10 and he weighed about 225 pounds.
The clinic knew everything there is to know about him genetically of course, but we are not allowed to know personal information. So it’s pointless to even ask. ☺️ At the first anniversary, if the donor is from the US you are allowed to initiate contact through Be The Match or whatever agency the stem cells were procured. You can send a thank you note through the intermediary too. If the donor comes from outside of the US it will take 2 years to be able to initiate contact and some countries don’t allow it at all.

I am sorry that your posts on the portal are being ignored. That is a surprise. Basically, that’s your direct link to your spouse’s BMT team. I’d definitely bring that up with the BMT doctor and team. You need a way to reach them if you have questions outside of the office setting. Also they should provide you with emergency numbers to call as needed.

Have a list of questions, which I’m sure you already do…you’re on top of things…but take that along. It’s ok to be assertive to get answers. Knowledge is power!

Your spouse has already been through an incredibly difficult journey with his AML and the transplant is even bigger. This will test his mettle like nothing else, and yours as well. There will be some very down days, I’ll tell you that up front. But it is doable!! Take each little moment of progress every day as a win. I don’t believe anyone breezes through a SCT/BMT like it’s a walk on the beach. Everyone’s body is different and so the way we recover isn’t always predictable either. Your partner will be very tired with probably little appetite. But each day he’ll grow stronger and after about the first 2 weeks, when the cells engraft things will be on the upswing!!

Do you have any pre-transplant questions about the tests this week?

Fggfgggg

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Hello @lodi, just wanting to see if there’s any progress towards the transplant coming up on the 20th. I hope the BMBX came out clear or with minimal blasts! If nothing is preempting the procedure your spouse should be undergoing the pre-transplant conditioning by now.
Is he doing ok with the Hickmann port?
The chemo given during conditioning is pretty harsh and will be eliminating everything from his marrow including his lymph system. So by the end of this week, right before day zero, he’ll be getting fairly tired and possibly nauseated. The nurses should be on top of that and generally there are 3 meds available to alleviate the worst of the symptoms.
The transplant itself is pretty anticlimactic. With all the hoopla leading up to the transplant you’d expect a really big deal! But it only takes about 15-30 minutes to infuse the bag of cells which looks exactly like a blood transfusion. He’ll have some pre-transplant medications, usually Benadryl and a steroid to help prevent any reactions. After that, he’ll probably just be pretty sleepy.
He’ll also be given anti-rejection medications such as Tacrolimus along with antibiotics, antifungals, antiviral meds because he will not be having a functioning immune system. The medications will be critical for creating an immediate immune system for him until his new immune system matures and takes over. It isn’t fully mature until about year 2 after transplant but he may be off the meds by 6 months or so. But until that that happens his immune system will be considered in its infancy.
I’m still on all of mine at year 2 though I’ve started what is hopefully a permanent taper and then off! Almost an adult!

He’s probably already had instructions for preventing illnesses through foods and exposure to people, dirt, etc.

Do you have any questions going into this week? I know this is all very daunting and It’s one of those events that have to be dealt with day by day, sometimes minute by minute. This is the next step in your partner’s opportunity to kick AML once and for all! So hang tight and try to stay calm and positive. Give your significant other my best wishes for a smooth transition.
Will the stem cells from the donor be fresh or frozen?