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Acute Myeloid Leukemia with Aberrant CD7
Blood Cancers & Disorders | Last Active: Dec 22, 2021 | Replies (41)Comment receiving replies
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?
Replies to "Good morning @lodi You and your partner have my deepest empathy for what you’ve both gone..."
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
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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