Tag Archive for: transplant

Low Testosterone in Cancer or Transplant Survivors

I was one of the authors (out of more than 50) of a review article on male specific late effects in stem cell transplant patients [1]. The article looked at many late effects in male transplant survivor. This post is a summary on one late effect, hypogonadism (that is low testosterone) as well as my opinion about the recommendations on screening for low testosterone.

We do not know much about low testosterone in cancer survivors or transplant survivors. There is a significant increase in the incidence of low testosterone but the size of the increase in transplant survivors is not well understood. Symptoms related to low testosterone include: “loss of body hair, small testes, and ED (Erectile Dysfunction)”. Other symptoms that may be signs of low testosterone but may be signs of other problems include: “loss of libido, anemia, fatigue, lack of motivation, reduced muscle mass, and increased fat mass” (I don’t really know what “lack of motivation” means). The article recommends: “testing and consideration of hormone replacement therapy based on symptoms”. This is similar to what has been recommended in the past [2].

In 2016, some 23 years after my bone marrow transplant (BMT) I was diagnosed with low testosterone. I had finally asked one of my doctors to get tested and my testosterone level was 192 (my free testosterone was also low, and this is useful for the doctors, but I won’t mention it anymore). The normal level of testosterone is between 300 and 1000 nanograms per deciliter (ng/dL). [3] While I had symptoms, low libido, loss of muscle mass and fatigue primarily, no doctor had asked about those symptoms, and I had not thought about them as more than getting old.

I started on testosterone replacement, and it has made a huge difference. The biggest difference in my mind is less fatigue. One of the more common side effects of testosterone replacement is it can raise your red blood count (I like to call this an “effect”). Since a year or two after my transplant, my hemoglobin was on the low side (typically 12-13, normal for men is 13.2-16.6) and my hematocrit was generally between 37 and 40% (normal for men is 38.3-48.6%) [4]. A few years ago, at my annual exam my hematocrit was close to 35%. I went to see an oncologist (the oncologist who treated me is no longer seeing patients in the office). A whole bunch of tests were run, but not a testosterone test and nothing abnormal other than my red blood values was found. After starting testosterone replacement, my hematocrit is 43-45% and my hemoglobin is 14-15. The biggest change for me is that I have far less fatigue presumably because I have more red blood cells.

Testosterone levels naturally decrease with age. The folklore is that the testosterone level decreases about 1% per year from age 30 or so. [5] Other sources say from age 20. I believe this means that if you level is 800 at age 30 (there seems to be little data for a “normal” level at different ages), it will go down about 8 units per year (1% of 800). So, at age 80, the level would be around 400 (if this actually means a decrease of 1% of the current level every year, it will go down to about 480 at age 80). If the level was 600 at age 30, then it would be about 300 at age 80 (or around the low end of the normal range, which I imagine is about the average level for 80-year-old men). What if a 30-year-old had a testosterone level of 800 and then was diagnosed with AML and had chemotherapy and a transplant? Perhaps 2 years post-transplant is now 500, which is normal. There seems to be no data on testosterone levels in long term transplant survivors. However, if this goes down 8 units a year (this seems to be as good a guess as any), then after 25 years the level would be 320 and after 30 years it would 280, which is less than the 80-year-old man without cancer. It is important to state that there appears is no data to support or refute this scenario. Still my belief is that this is essentially what happened to me. My guess is that quite a few male transplant survivors have a testosterone level in the normal range 1 or 2 years post-transplant (although most will not have it tested) but will eventually have hypogonadism and likely not realize it.

While there is a lot we do not know about testosterone levels in transplant survivors (or for that matter healthy men), there is one thing we do know. “The majority of health care professionals do not address [sexual dysfunction]” [1]. In my mind this calls into question the recommendation to test testosterone levels “based on symptoms”. Most doctors do not seem to ask about symptoms specific to low testosterone and the other symptoms are non-specific. It seems to me that not testing testosterone levels at say 1 or 2 years post-transplant is likely causing harm to some male long term survivors. A better guideline would be to routinely test 1 or 2 years post-transplant and then again if symptoms warrant.

The BMT Infonet as part of their Celebrating a Second Chance at Life Symposium had a really good workshop on Sexual Concerns in Men after Transplantation by John Mulhall MD, from Memorial Sloan Kettering Cancer Center. You will have to register before viewing the replay of this workshop. While it covered other topics, there was a lot of information about low testosterone 

Contact Art Flatau, flataua@acm.org

Bibliography

[1] Phelan, R et. al., “Male-Specific Late Effects in Adult Hematopoietic Cell Transplantation Recipients: A Systematic Review from the Late Effects and Quality of Life Working Committee of the Center for International Blood and Marrow Transplant Research and Transplant Complica,” Transplantation and Cellular Therapy, 2021.

[2] Navneet, Majhail S.; et. al., “Recommended Screening and Preventive Practices for Long-Term Survivors after Hematopoietic Cell Transplantation,” Biology of Blood and Marrow Transplantation, vol. 18, no. 3, pp. 348 – 371, 2012.

[3] Icahn School of Medicine at Mount Sinai, “Testosterone,” [Online]. Available: https://www.mountsinai.org/health-library/tests/testosterone

[4] Mayo Clinic, “Complete Blood Count,” [Online]. Available: https://www.mayoclinic.org/tests-procedures/complete-blood-count/about/pac-20384919

[5] Mayo Clinic, “Testosterone therapy: Potential benefits and risks as you age,” [Online]. Available: https://www.mayoclinic.org/healthy-lifestyle/sexual-health/in-depth/testosterone-therapy/art-20045728

[6] WebMd, “Is Testosterone Replacement Therapy Right for You?,” [Online]. Available: https://www.webmd.com/men/guide/testosterone-replacement-therapy-is-it-right-for-you

Are Acute Myeloid Leukemia Patients at Risk for Secondary Cancers?

Are Acute Myeloid Leukemia Patients at Risk for Secondary Cancers? from Patient Empowerment Network on Vimeo.

With acute myeloid leukemia (AML) patients, are they at risk of secondary cancers or other complications? Watch as expert Dr. Catherine Lai explains potential medical conditions that can occur in patients and advice for patients to empower themselves for their best care.

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Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

Understanding High-Risk Acute Myeloid Leukemia Treatment Advances and Options

Understanding High-Risk Acute Myeloid Leukemia Treatment Advances and Options 

Does GVHD Ever Resolve in Acute Myeloid Leukemia Patients?

Does GVHD Ever Resolve in Acute Myeloid Leukemia Patients?


Transcript:

Sasha Tanori:

AML patients, just like anyone else, want to live and live a very long time. Are AML patients at risk for secondary cancers, and are there any studies that speak on this?

Dr. Catherine Lai:

Yeah, so I would say everything has its risk and benefits at the time of diagnosis, you need the chemotherapy in order to get into remission, and then if you need the transplant, whether or not you’re getting radiation and then further some chemotherapy before the transplant, so that’s not without risks. So especially in a young patient, for example, in your particular case, you’re at risk for secondary treatment-related MDS and other bone marrow-related disorders that could occur, most patients who are in their 60s who, if they live long enough would be at risk, but most of those patients will die of something else before you have that opportunity. As a young patient, the other thing to be aware of, especially with, given that you’ve had transplant, is that the increased risk of cardiovascular effects, as well as making sure in patients who have had your whole body radiation, other effects in terms of their thyroid, lung function, and then screening earlier for other cancers. So in terms of looking at studies, we know that these risks are slightly increased and that monitoring starts a lot sooner, especially in young patients. So I think just being aware of what you need to do.

We also have a survivorship clinic, which I think is really important to help understand, You know what your risks are, because once your leukemia is in remission, we don’t want you to develop other medical problems, so it’s important just for patients to be educated so that they know how to take care of their body at each stage of their…again, of their journey

Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities?

Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities? from Patient Empowerment Network on Vimeo

Why does multiple myeloma impact some BIPOC communities nearly twice as often compared to white Americans? Expert Dr. Joseph Mikhael shares factors that affect diagnosis and treatment of African American and Hispanic American patients — and how to improve health outcomes for BIPOC myeloma patients.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Is MGUS More Prevalent in BIPOC Communities?

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Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

 

 

Transcript:

Dr. Joseph Mikhael:

Almost twice as common in the African American population, it’s diagnosed younger, and the African American population is actually also diagnosed younger in the Hispanic population. And then even though we tell myeloma is having this amazing survival advantage over the last decade, which is true, that advantage has not been seen in the African American population as much as we have seen in the Caucasian population, similarly not as much in the Hispanic population as well. So those are the key highlights. When people have access to those treatments, when there is that kind of equity, we actually see the outcomes, if not the same, are actually better for African American patients. So it highlights, what I often call the three T’s that are not accessed as well in the African American population, triplets, transplant, and trials. So those are some of the key things I like to say. And then when we talk about how we correct this.

I think there was a question about how are we going to do it, that could be a 20-minute answer, but it’s not just a function of having more transplants, triplets, or trials, it is really engaging the community to change this course of my alumni really is an issue of trust and of long-term strategies that engage people in a way that resonates with them, to be able to trust their institution in their hospital or their physician or within their community.

Number one, we know even from studies that we’ve done in Africa and gone on in other countries that, for reasons we don’t really understand the disease is twice as common from its early stage from MGUS right through to myeloma. It’s not an environmental factor, it’s not a later acquired phenomenon, so the baseline risk is significantly higher. But that’s secondly experiencing myeloma, having it has a lot to do with the whole experience that patients have with myeloma from diagnosis through treatment. And we know that, unfortunately, along the way, there’s a significantly longer time to diagnosis, in the African American population which has multiple reasons. Some of it is a lack of understanding, a lack of trust, a lack of education in the physician community. As part of one, the big projects that I’m working on later this year is to educate primary care doctors in primarily African American communities, so that when that man comes in with symptoms that I think of myeloma, they think of diabetes, diabetes, diabetes.

And I want them to think diabetes, diabetes, myeloma. I want it to be added to that differential diagnosis, so it’s a multi-headed beast for the diagnosis. But also as I mentioned before, access and so on all the way through, so it’s a complex problem. We do know that certain side genetic features are more common in African Americans, namely what’s called the translocation t(11;14), which with the right treatment actually can have a better outcome. So it tells us that there is a goal line that we can reach, that can actually get superior outcomes, and yet we’re now in inferior outcomes.