Swollen Legs Update on Zytiga and dexamethasone 1mg

[pozitronij]

Dear all,

I would like to thank the response you gave on previous post and try to get some more answers. During last 7-10 days we saw number of doctors in order to find root cause of the swollen legs that my father has. We saw endocrinologist, cardiologist and nephrologists. I would like to list all of the analysis that my father did in the past 7 days so you can have insite in case you are willing to give some input. And I will bold the analysis that is outside of normal range.

1. Sedimentation erythrocyte 71 mm/h

2. Direct Bilirubin 2.8 umol/L

3. Indirect Bilirubin 10.0 umol/L

4. Total Bilirubin 12.8 umol/L

5. AST(GOT) 38.0 U/L

6. ALT (GPT) 30.0 U/L

7.GGT 22 U/L

8. Alkaline phosphatase (ALP) 413 U/L

9. LDH 596 U/L

10. Calcium (serum) 2.1 mmol/L

11. Cl (Chloride) 99.0 mmol/L

12. Na (Sodium) 142 mmol/L

13. K ( Potassium ) 4.7 mmol/L

15. Insulin 13.96 uU/ml

14. Androstenedione 0.35 ng/ml

16. Creatine Kinase (CK) 202.0

17. CK -MB 105

18. D-Dimmer 1437.0

19. Fe +++ ( Iron ) 13.5

20. Pro-BNP 94.62 pg/ml

21. Urea 9.4 mmol/L

22. Creatine Serum 100.5 umol/L

23. Glucose 3.8 umol/L

24. Cholesterol 7.5 mmol/L

25 Triglycerides 2.0 mmol/L

26 25OH Vitamin D total 32 ng/ml

27 Vitamin B12 225 pmol/L

28 Troponin high sensitive 20.92 ng/L

29 Testosteron 0.09 nmol/L

30 PSA 72 ng/mL

Urine Tests:

1. Color Yellow

2. PH Reaction 5

3. Specific weight 1010

4.Proteins Low

5. Glucose Negative

6. Keton bodyes Negative

7. Bilirubin Negative

8. Urobilinogen Negative

9. Nitrates Negative

10. Erythrocytes 10 to 12

11. Leukocytes 8 to 10

12. Epitel cells little

First doctor endocrinologist said that most likely the issue will be in heart or the thrombosis. So we should see cardiologist.

Unfortunately the cardiologist said that the heart was not the cause of swallen leggs and gave him rivaroxaban 15mg to put the D-Dimmer test back to normal. His ECG was normal and said that most likely the issue is in kidney and that we should see nephrologists.

The nephrologists have checked the kidneys and he concluded tha kidneys are fine and they are not the cause of the swollen legs. He contributed swolen legs to anemia ( or the issue with bones ) but didn't gave us any more direction or what to do with the problem. So we are now, I can't say on square one, but for sure in dead end since, not sure what next to do. If anyone has any suggestion that we can investigate we will be very gratefull.

Thanks to anyone taking the time to read this post.

Cincerely E.

[tango65]

Consult about checking the venous system in the legs with doppler ultrasound. He could have deep venous insufficiency which is causing the edema.

[pozitronij in reply to tango65]

We would try to check that as well. Trying to find where we could do that test.

[SeosamhM in reply to tango65]

Nice call, T! I am surprised that they didn’t rule this out at the onset.

[Tall_Allen]

Any enlarged lymph nodes?

[pozitronij in reply to Tall_Allen]

Unfortunately i never saw a test mentioning lymph nodes. But, he does have multiple skeletal methastasis, on his entire body, probably its not related to your question. On his scans MSCT and CT there is no mentioning of lymph nodes. (probablt not the right test for it i assume. )

[Tall_Allen in reply to pozitronij]

I was wondering if enlarged inguinal lymph nodes could be causing lymphedema. They don't have to be cancerous, just enlarged enough to block the flow of lymph. But if that were the case, they would have seen it on a CT scan.

The ALP and the LDH point to a problem in the liver. There is a specific Bone ALP test that can help eliminate bone metastases as a source for the elevated ALP. The remainder is due to liver sources of ALP. Maybe the liver is responsible for throwing clots that are blocking leg circulation?

[pozitronij in reply to Tall_Allen]

MSCT showed also liver as being fine, as far as the MSCT can show. About ALP test it actually differs a lot. In february was very high if i remember around 600, but after taking denosumab it went down. And the past few months he had fluctuation of the PSA, but interestingly enough everytime he has little rise in PSA, his ALP went down, and next month PSA is down and ALP will go little up. It happend like that last 4 tests.

[pozitronij in reply to pozitronij]

Unfortunately my father has only bone methastasis, and they are over his entire skeleton. Not sure what other medicine can help in situations like this, since after Zytiga probalby hemo is left which he never did. And we don't have access in Serbia to Lutetium-177or other new medicine yet.

[Tall_Allen in reply to pozitronij]

Can you get a bone-specific ALP test?

[pozitronij in reply to Tall_Allen]

I will try to find the clinic that can do that, and will update information. Thank you for the sugestion Allen. I really appreciate any new info we can investigate.

[pozitronij in reply to Tall_Allen]

I would like to reply one more time to this question, and maybe get feedback. We did also color doppler test today of his leg, neck etc... and that turned out to be also fine. No problems there. Since we ruled out most of the things and back to square one, we are thinking to stop taking Zytiga for a while and continue with Dexamethasone, and see what effect will that have.

[pozitronij in reply to pozitronij]

My father has been also anemic for some time now, do you have any recommendation how to address that, is there any medicine that we can look into and propose to the doctors in order to get more feedback how to address that. Someone of the doctors mentioned that anemia can also be cause of edema, but didn't point us how to treat that.

[Tall_Allen in reply to pozitronij]

Anemia is a symptom, not a disease. There are many potential causes.

[pozitronij in reply to Tall_Allen]

Yes, i understand what you mean. Thanks for the reply and information ☺️

[leebeth]

Sounds like the cardiologist thinks he has VTE, and his lab work would be concordant. One caution, take the rivaroxiban with food, at the same time each day. The absorption is highly variable. After 3 weeks, he will likely go to 20 mg once a day, and it is very important to take it with the largest meal of the day, at the same time every day.

[pozitronij in reply to leebeth]

Thank you for the suggestion, I will forward it to my dad so he can pay more closely attention in regards of taking this medication.

[TWTJr]

Presuming that your father does not have enlarged pelvic lymph nodes from PCA, and presuming that the femoral and iliac veins in pelvis are not clotted, then your father may have lower extremity swelling related to lymphatic damage from prior prostatectomy, pelvic lymph node dissection, and/or pelvic radiation which also damages pelvic lymph nodes. This situation is called lymphedema, and is usually a diagnosis of exclusion of other causes.

[pozitronij in reply to TWTJr]

My father never received radiation, and he had prostatecomy in 2013. On the scans they never mention something about lyph nodes, and this latest issue with swollen legs happened just about 2 months ago. Never had serious issues with it. It could be related i don't have medical background so I am just learning as I go. But we will see after one more test of color doppler that he will do tomorrow, and hoping to find something there so we have some answer and then will search for solution. Thank you for the comment.

[arete1105]

For my swelling I use a supplement called Swell NoMore. It works for me.

[pozitronij in reply to arete1105]

That is interesting to know. I will try to find some natural suplements that may possibly help. Thank you for the recomendation.

[leebeth]

I know that many things can cause an elevated d-dimer, but the most likely cause, considering clinical presentation and the fact that the doc ordered Xarelto, is venous thromboembolism, which is very common in cancer as it causes coagulopathies.

[pozitronij in reply to leebeth]

His ECG was also not perfect, unfortunately my father was not able to tell me exactly what doctor specificly said to him about ECG but it is not a dramatic or anything life threatening. Maybe he also prescribed Xarelo because of that.

[leebeth in reply to pozitronij]

No there would be nothing on the EKG that would have been the reason for the Xarelto. I am sure he thinks he has a DVT with his clinical conversation.

[pozitronij in reply to leebeth]

Thank you for the explanation.

[pozitronij in reply to leebeth]

I would like to update you on the color doppler test we did today of legs neck, etc. The test was fine, he didn't have any issues with veins or thrombosis.

I would like to ask since my father is anemic for some time, is there any medicine that can help with that ?

[Bebby1]

My husband had swollen legs and feet a few weeks before any other symptoms and eventual diagnosis.We saw the same varied specialists, all saying the organs they specialise in were not to blame.My theory is the lymph node involvement.

Towards the end of his journey, he had months of Dexamethasone for spinal Mets. The swelling increased then.

I’m sorry you can’t get an answer

All the best

[pozitronij in reply to Bebby1]

I am sorry to hear about your husband. He is at peace now. My dad is on prednisone / dexamethasone for 2 years. But only have problem with swollen legs past 2 months.

[London441]

What specific parts of his legs are swollen? Same in both? How is his weight? Is he able to exercise at all?

[pozitronij in reply to London441]

I think little bit more right leg is swollen, but yes, both of the legs are swollen from the knee down. He was very mobile till 1 month ago, now he can barly walk. Aprox 100m and then he is tired and have pain.

[London441 in reply to pozitronij]

I would try anything and everything, seek every opinion which you're obviously doing.

Still, keep in mind getting him walking again is absolutely essential. The costs of him not moving are far greater than swollen legs.

[pozitronij in reply to London441]

He walks as much as he can, he is not tied to the bed, but its very little compared how active he was just a month or two

[London441 in reply to pozitronij]

I understand, and I feel for him. Sometimes it seems the medicine is lethal not the disease. Best effort for this one is all anyone can ask. It's a living nightmare if we give in, this we must not forget.

Once he gets it sorted that's the time to really go for it. Great luck to you!

[pozitronij in reply to London441]

Thank you

[Concerned-wife]

I wondered too about cortisol (ACTH) and blood pressure . Assume the endocrinologist knew about this issue and Abi but don’t see the labs

[Cynthgob]

My husband had the same symptoms from the dexamethasone. I believe that is too much dex. On the blog they have said no more than .5 mg. My husband was also on 1. Mg. By the time we figured out it was the dex he was in very bad shape. 25 lb water weight and almost unable to walk due to swelling. We stopped the dex and zytiga immediately along with adding a water pill. It did take quite a long time for the swelling to go away due to water retention. Perhaps this is what you are dealing with?

[pozitronij in reply to Cynthgob]

I am not sure, since I heared stories of stopping the prednisone or dexamethasone will make the things worse. Not sure how it is possible to verify if dexamethasone is the one causing the problem.

[pozitronij in reply to Cynthgob]

When you say quite long time for swelling to go away? I assume it was perhaps 2-3 weeks?

[Cynthgob in reply to pozitronij]

No! I would at almost 3 months. It takes as long to get it off as to put it on. And no you can’t quit steroids you have to slowly taper off to give the pituitary glands time to switch back on. He was taken off zytiga and slowly taken off dex. He could not sustain the water weight

[treedown]

Based on everything that seems to have been ruled out I would be curious about activity level and lymph nodes. I have issues with minor swelling in my lower left leg that always resolves with exercise. There are massage specialists in lymph node drainage though I am not sure how common they are worldwide. My Dr said no need for me as exercise resolved mine. I hopenyoy find an answer to this problem.

[pozitronij in reply to treedown]

Happy to hear that you found something that works for you. Just continue to exercise since mobility is the kew in quality of life. I am witnessing how dificult it is when a person looses phisical condition.

[winkoliu]

This is the side effects of dexamethasone. I got the same experience since I took Zytiga and Dexamethasone two years ago. If you cannot stop dexamethasone, you have to do more exercises to increase the blood circulation on your legs and feet to get rid of the swelling.

[pozitronij in reply to winkoliu]

If we are about to stop dexamethasone not sure how long would it take for the symptoms to go away? Did you had your swollen legs worse as soon as you stopped dexamethasone?

[winkoliu in reply to pozitronij]

I am still taking dexamethasone as I have to take Zytiga. My dexamethasone is 0.5 mg.

[pozitronij]

Unfortunately I don't know the cortisol value. Unfortunately we were not able to do aldesterone in the lab since they didn't had it, they did Androstenedione which i thought is the same thing but looks like it is not. My dad doesn't drink and he is a vegan for almost 5 years i would say. He is not taking any other medicine besides newly prescribed Xarelto, Zytuga, Dexamethasone, Lasix past 1 month and ibuprofen for the pain, more ofthen than usual this past month.

[pozitronij in reply to pozitronij]

And yes, we are faced with very uncompetent doctors at the moment. To make the story short, my father lives in kosovo, so we see general doctors there, but his cancer and Zytiga is being treated 300km away. So he has to travel there to get the medicine 1 a month. And the doctor who gaves the medicine for cancer doesn't address other issues, he just looks at the PSA and scans and that is it. Its like paperwork for him.

[pozitronij]

He is only taking Lasix now but it is not helping much. It has some effect but it is not sufficient, and only lasts for couple of hours i think . He only eats fish and he has healty diet, doesn't take any processed food. He is walking but with struggle.He got appointment to check for DVT tomorrow, so i hope they are able to find something. But he is already taking rivaroxiban for the eleveted d-dimmer, and i guess that is one of the medicine they give for DVT as well.

[pozitronij]

He was on a lower dose for a while but since it was not helping with the swollen legs we up it to 1mg, but siguation is the same, so most likely it is not caused by dexamethasone. Or it is the soul cause so he would have to stop taking it? Not sure at the moment. Tomorrow he will do color doppler of legs and hoping that they will find something so we know what to treat.

[pozitronij]

He was using prednisone since october 2020 till May 2022. Then swollen the issue with swollen legs started to more noticable and PSA started to fluctuate more, and we switched to dexamethasone his PSA went little down after swithch but the issue with legs remained.

[j-o-h-n]

Make sure you or a friend or relative accompany you dear Father when he visits doctor(s) or has treatment(s). Take Notes!!!Hopefully he is is resting, sitting or sleeping with his legs raised.

Keep posting here for solutions to your/his issues.....

Реци му да хемотерапија продужава живот. Поздрави.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/16/2022 5:14 PM DST

[pozitronij in reply to j-o-h-n]

Thank you John, my mom and sister are always with him, i live very far away so i try to help as much as i can. We are all pretty much involved and trying best to help him.

[j-o-h-n]

A little humor for your Father (not for you).....

Јуче сам ишао на пиће са Русима.

Скоро сам умро.

Данас сам ишао на пиће са Србима.

Волео бих да сам јуче умро...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/16/2022 5:21 PM DST

[pozitronij in reply to j-o-h-n]

Hahaha its true story😂. I like it☺️ thank you John for sharing positivity ☺️

[pozitronij]

He was using it since october 2020 till May 2022.Liver on the latest scans was ok as well. Hoping to get today color doppler of the legs so we know little more about the condition.

[slpdvmmd]

Hard to get doctors to really examine patients now days but my first question would be if the edema is pitting or non-pitting. Non-pitting edema is consistent with lymphedema whereas pitting edema is associated with fluid retention. Regarding Zytiga specifically, my simple (i.e. surgeon) understanding is Zytiga reroutes the steroid pathway in the adrenals from androgen production over to the mineralocorticoid side production. This leads to electrolyte imbalance and subsequent fluid retention. While ruling out a DVT is not unreasonable usually DVT patients present with single leg edema unless the clot is very proximal and above the bifurcation of the vena cava. If it is the Zytiga messing with mineralocorticoid levels and your fathers potassium is normal (which it appears to be) and his kidney function is normal, then diuresis with an aldosterone inhibiting diuretic such as spironolactone is potentially a viable option. I apologize for my profession which in my experience as a patient seems to have lost the desire to physically and meaningfully examine patients. The physical examine is sadly becoming a lost art that should be retained. I wish you and your father the best in you struggle for care, something we all face everyday of our illness.

[pozitronij in reply to slpdvmmd]

Thank you for the reply, spironolactone is something worth of investigatin. We are going to see tomorrow our oncologist in hope they can provide us more information and possibly a solution how we can tackle this issue that we are facing long time now. I will try and keep updated this forum when we find out what was the issue.

Best Regards

[bassboy]

I had very swollen and weeping legs and it was a surprise to me and my wife . We are about 90 years old and have lots of health issues but are managing still in our own home. I have been treating my prostate cancer for about 30 years. I had been taking 2 -500 Zytiga each day plus 2 - 5mg prednisolone of a morning. After 8 months my legs went crazy and I stopped the Zytiga but kept the preds going . It took about 6 weeks for my legs to get skinny again and my P.C. was not bothered. I have been back on the Zytiga at 500 per night.and one pred in the morning . heres hoping.