Is ADT causing anemia?

Posted by waynerl @waynerl, Aug 14 6:37pm

I have been on ADT therapy using Abiraterone and Prednisone for one year, my PSA is 0.1, but my red blood cell count is in the low range. I don't know how accurate PSA readings are concerning my cancer. The prostate cancer I had 15 years that was successfully treated with radiation came back a year ago and metastasized to my right lung. My oncologist says I have to stay on my ADT meds until I die from something else. But I am so tired all the time and struggle to breathe, due to anemia. ~Wayne L.

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Profile picture for overage @overage

@stragale Stagale, I hope that you have success in resolving your blood count issues.

I too have low hemoglobin, not as severe as you have, but troublesome to me. Your problem appears to be loss of red blood cells after they have been created. My problem is that the production of red blood cell is not sufficient to maintain hemoglobin above anemia levels.

In the first 2 years of ADT my hemoglobin dropped from 13.5 to an average of 12.6, which I find from research is the normal effect of ADT. It then proceeded on down to 11.2. I brought this to the attention of my oncologist and he referred ma to a hematologist on the staff of the provider group. A test indicated that the kidneys were not producing sufficient Erythropoietin to stimulate the bone marrow to make an adequate number of red blood cells. I attribute the damage to the kidneys to the ADT treatment, although I found there is little information on this in the literature.

The plan of the hematologist is to monitor the hemoglobin levels and when if falls below 10, and I am symptomatic for anemia, to use erythropoiesis-stimulating agents (ESAs) to raise the hemoglobin level modestly. The hematologist warned the ESAs can cause blood clots and other cardiac events. The FDA black box for an EAS drug has this at the beginning;

WARNING: ESAs INCREASE THE RISK OF DEATH,
MYOCARDIAL INFARCTION, STROKE, VENOUS
THROMBOEMBOLISM, THROMBOSIS OF VASCULAR ACCESS
AND TUMOR PROGRESSION OR RECURRENCE

Not a very good indication.

Recently I saw some articles that mentioned that patients with chronic kidney disease and or diabetics have modest increases in hemoglobin from the use of Sodium-Glucose Transport 2 (SGLT2) Inhibitors. The increase is about 0.7 g/dL, admittedly small but any gain in my book is good. I showed the articles to the oncologist, he asked if I was willing to take the medication, and when I said yes he refereed me to the endocrinologist on the staff of the group. The endocrinologist said he never prescribed the medication for the purpose of raising the hemoglobin, but if I was willing to try it, he would prescribe it.. Now I am in my first week of taking Dapagliflozin (Farxiga®) 5 mg tablets. I won't know the results for at least a month and perhaps 4 months.

Since the SGLT2 Inhibitors require prior approval by my insurance plan I may not be reimbursed for the cost of this medication. Since I am outside of the United States the cost per month is about $30, whereas in the United States the cost would be several hundred dollars per month.

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@overage Thank you for sharing your experience. I have been wondering if there is kidney involvement in my ADT treatment, but in my case, I thought it might be causing the increased frequency of urination at night. I'm getting up an average of 4-5 times a night to pee and it's usually an abundant amount. I hadn't thought about a possible effect of ADT on kidneys related to decreasing RBCs. My body is making off-the-chart amounts of reticulocytes (immature RBC) but my overall RBCs are low. Seems they're either being destroyed or lost in a bleed. I have an appointment with a hematologist tomorrow and a GI specialist in 5 days.

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Profile picture for stragale @stragale

I was rereading the original comment by @waynerl and was struck by the comment that you may be on ADT therapy until you die of something else. If a prostate cancer oncologist actually tells a patient that, it seems to me that indicates a lack of current knowledge/ understanding of PC, IMHO. ADT therapy works well at suppressing testosterone production and binding of the hormone to androgen receptors. However, eventually, after a few years, the cancer cells evolve such that they become hormonally insensitive and will start growing again and potentially metastasizing. In that case, oncologists move on to other treatment options that may include chemo, PARP inhibitors, radiation, Pluvicto, etc.

When I asked my oncologist back in February how long I would be on ADT (in my case, Orgovyx/Abiraterone/Prednisone), he said probably 24 months. This was based on best evidence from the literature at that time. I just saw a video from the Prostate Cancer Research Institute that discussed what may become a landmark paper published earlier this year that suggests that the recommended time on ADT can be tailored to the patient's cancer aggressiveness, PSA number, Gleason Score, etc. Here's a link to the video: https://www.youtube.com/watch

All of this is to say that it is really important to get a second or maybe even a third opinion from another medical center, preferably one that sees a large number of PC patients to see what they recommend for a patient's specific health issues.

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@stragale The on ADT until you die is often the case because most prostate cancer patients are elderly and die of something else. I took it as an indication that the disease was metastatic, so no 4 to 24 month and then done. In your case if the drugs stop working the usual switch is to a 2nd generation lutamide (Nubeqa, Erleada, or Xtandi). They will usually work when Abiraterone stops. Also 24 months to castrate resistant is old. Most patients go many years more now with the new lutamides. After that there are the other treatments mentioned.

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Profile picture for stragale @stragale

@waynerl
A few questions if I may:

Have you had any of the labs done that I had listed in my post? Basically, they're to rule out (or in) other possible causes of your low RBCs etc., such as hemolytic anemia.

You mentioned having GI issues. Is it possible you have a GI bleed that's contributing to your low numbers? My PCP referred me to a GI specialist. I don't have an appointment set up yet but expect to get one soon.

If RBCs are low enough and you're having breathing problems, maybe a transfusion is in order?

Finally, have you sought a second opinion from another center? I think you mentioned that you see physicians at VA in Seattle? Maybe see if you can get in to the Hutchinson Cancer Center for a second opinion. I have seen experiences from friends and others who have seen docs who are "behind the times" in their knowledge.

Hugs and warm wishes
Gale

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@stragale Gale, both of my oncologists, although serving part-time at the VA in Seattle, are in fact from the Fred Hutchinson Cancer Research Center. They said they were not overly concerned with my low RBC because I had normal hemoglobin results. I often tell them the recommendations that I have received from various members of this group, but they are sticking to their original plan. W

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Profile picture for jim18 @jim18

@overage SGLT2 inhibitors are a primary treatment for CKD. Allowing glucose to flow increases efficiency of kidneys filtering other items. Dapagliflozin went generic in USA this year; 3 months is less than $30 generic and is $105 brand. Competing SGLT2s are still expensive. I had anemia but levels slowly increased after I was off Orgovyx.

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@jim18 @jim18 I obtained the price for Dapagliflozin from the Amazon Pharmacy web page which has a price of $539.70 for the generic and over $700 for the brand name Farxiga. I now checked my insurance plan web site and found the my cost in the United States would be $7.50 for a 30 day supply from an in-network pharmacy. The $7.50 cost would indicate that the price of the drug is about $25 to $30. Also I found that the generic does not require prior approval, but Farxiga does. Sorry if I had misleading information.

You say in your post that since you discontinued Orgovyx your hemoglobin is slowly rising. Is your testosterone also rising. Testosterone stimulates the kidney to make sufficient erythropoietin that will then stimulate the bone marrow to make bed blood cells. Complicated process.

As a side benefit of the Dagagilflozin I am hoping to have better control of my glucose levels which fluctuate into the pre-diabetic now and then.

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Amazon is a ripoff unless you have Prime; today $539.70 w/o, $8.00 with for 30 pills, $14 for 90. High markups on all medications without prime. Fargixa $35 mth AZ direct cash.
Testosterone increased to low normal levels fairly quickly than a slow rise. Took hemoglobin over 6 months to reach low normal. RBC about 12.
Dapagliflozin typically lowers A1c by .7-.9%. If at 6.4% (high prediabetes) can take you down to 5.6% (high normal). UTIs are a common side effect of SGLT2 since they put Sodium and GLucose in your urine. More of a problem for women. As name implies also great if heavy on the salt.

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TRT = testosterone replacement therapy.

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Profile picture for stragale @stragale

@waynerl
A few questions if I may:

Have you had any of the labs done that I had listed in my post? Basically, they're to rule out (or in) other possible causes of your low RBCs etc., such as hemolytic anemia.

You mentioned having GI issues. Is it possible you have a GI bleed that's contributing to your low numbers? My PCP referred me to a GI specialist. I don't have an appointment set up yet but expect to get one soon.

If RBCs are low enough and you're having breathing problems, maybe a transfusion is in order?

Finally, have you sought a second opinion from another center? I think you mentioned that you see physicians at VA in Seattle? Maybe see if you can get in to the Hutchinson Cancer Center for a second opinion. I have seen experiences from friends and others who have seen docs who are "behind the times" in their knowledge.

Hugs and warm wishes
Gale

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@stragale I thought I had already answered this but I don't see my reply, so I'll try again. I have had a full blood workup done. Here are some of the results: PSA 0.1, WBC 7.99, RBC 4.37, HGB 13.8, HCT 40.9%, MCV 93.6., etc. My oncologists, although serving at the VA Hospital in Seattle, are actually from the Fred Hutchinson Cancer Research Center. I think my complaints about weakness and fatigue are mostly due to the effects of ADT and loss of testosterone. Maybe my claim re anemia is overstated, but I started taking slow release iron pills and B12 vitamins.
~Wayne

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Profile picture for gently @gently

wayneri, yes, testosterone deprivation lowers the body's production of erythropoietin (EPO), a hormone necessary for the production of rbcs. Ask your physician to prescribe EPO to bypass the need for testosterone.
Abiraterone can also lower blood sugar levels. Make sure they are testing you frequently. I'd want testing for iron, b12, blood sugar, and oxygen levels in addition to the CBC. Lower RBCs are common with ADT but are often mild. You might benefit from oxygen supplementation for now.
Sorry for your struggle. I think you'll get help.

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@gently They said "no," re EPO

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Did they say why. There might be an excellent reason.
Were you offered any other remediation.

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Profile picture for gently @gently

Did they say why. There might be an excellent reason.
Were you offered any other remediation.

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@gently I remember a "no" response, but can't remember the reason. I've been looking through my email log wiht her and cannot find that reply. I will be having an appointment coming up and will follow up on that issue.
~Wayne

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