Diagnosed in 11-5-21 with Stage 4 PC. It spread to my nearby lymph nodes at the torso. Had biopsy. PSA was at 118.
Met with MO in mid Nov. 1st Lupron shot 11-24-21. Tried to start Zytiga. Had terrible side effects. MO said wait a week. Lupron made me flare up. Swelling in right leg for 1 week and sore muscles. Still have some side effects, but adjusting to it.
Tried Zytiga again around Dec. 8th and had the same result. Massively toxic.
Met with MO Jan 11th. PSA dropped in 5 weeks to 17! Lymph nodes not swollen anymore. He says, "Start back on Zytiga and give this the knockout blow". I tried 1 Zytiga (not 4) of 250 mg. on a Saturday and 1 on the following Sunday. Same results - very toxic to me.
Today (1-31) met with MO telling me to "gut it up" and take the Zytiga as "the tests show this is the best route and quit complaining". Scheduled next Lupron shot for 2-8.
I am confused. I want to take the Zytiga, but it is really hard on me. I suggested Xtandi, but he steered me back to Zytiga. Sitting here wondering what to do. I am scared of the Zytiga again.
Also the Urologist said there may come a time when I won't need Lupron anymore, but the MO seems to differ. I read here on this site many different opinions on this. You mean to say that if you scan clean for a year you still need to take Lupron???
My brother in law's brother worked at MD Anderson in Houston for 30 years. I am reaching out to him for ideas. I know my MO wants the best for me, but he is mind set on the Lupron and Zytiga for me - for life I think.
I am going through this paradigm shift as this is happening quick in my life. Thanks in advance for any comments or advice you can offer up! You folks here "rock".
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MastersApprentice
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The truth is that early combinations of drugs with Lupron like Zytega extend lives significantly. But there are other combos without Zytega that are just as effective. I’m sure guys like TAll AllenWill tell you which ones. Find a new MO if this guy won’t let you try others. He’s being unreasonable.
You can use Xtandi or Erleada instead of Zytiga. These drugs are even FDA approved for metastatic hormone-sensitive patients while Zytiga is not. Find a different MO, I cannot understand why he does not want to use a different drug.
My husband’s oncologist suggested either Zytiga/Prednisone or Xtandi from the initial diagnosis last June of Stage IV. He elected to wait but just started on Xtandi last Weds because he’s type 2 diabetic and the Zytiga raises the blood sugar. He’s tolerated it well so far but it’s not recommended for all due to possible seizures based on one’s medical history.
Thanks for replying. I had a CT of the chest, Abdomen, and Pelvis with contrast on Dec. 1st 2021. Below is the report. At the point in time of the report my PSA was 118. On Jan. 10th it was 17. My Alk Phosphatase was 432 in Dec. and dropped to 350 on Jan 10th. I had puffiness around my legs at the torso area (lymph node area) and now the swelling is gone.
What is this telling you below? It is my scan results...
FINDINGS:
CHEST:
LUNGS: The lung parenchyma is clear without mass or infiltrate.
MEDIASTINUM AND HILUM: The heart and great vessels are within normal limits. There is no evidence of pericardial effusion.
PLEURAL SPACE: No pleural effusion, pleural mass, or pneumothorax is noted.
ABDOMEN AND PELVIS:
LIVER: Normal with no focal lesions. The gallbladder contains a small amount of dependently layering sludge versus tiny gallstones and is otherwise unremarkable.
SPLEEN: Normal.
PANCREAS: Normal.
ADRENAL GLANDS: Normal.
KIDNEYS: Left-sided hydronephrosis persists without significant change. Punctate nonobstructing stone in the left kidney is stable. No new findings.
GI TRACT: Normal.
MESENTERIC VESSELS: Patent.
AORTA / IVC: The aorta and IVC are normal in caliber.
PROSTATE: The prostate gland remains enlarged and heterogeneous measuring approximately 7.0 x 5.0 cm
(versus 8.0 x 5.1 cm).
URINARY BLADDER: The enlarged prostate gland continues to encroach upon the base of the urinary bladder
with resultant partial obstruction of the left ureter with left-sided hydronephrosis and hydroureter. The distal right
ureter is of normal caliber. There is some mild bladder wall thickening to the left of midline.
OTHER FINDINGS: None.
LYMPH NODES: Multiple abnormal lymph nodes again identified. Reference nodes described below.
Periaortic node 2.1 x 2.5 cm (81, 2) versus 2.1 x 2.9 cm.
Right iliac chain lymph node 1.6 x 2.9 cm (114, 2) versus 1.9 x 3.3 cm.
Left iliac chain lymph node 1.8 x 3.5 cm (119, 2) versus 2.2 x 3.3 cm.
OSSEOUS STRUCTURES AND SOFT TISSUES: The reference blastic lesion in the left iliac bone measures 1.0
x 1.7 cm (110, 2) Versus 1.0 x 1.5 cm. Diffuse metastatic disease is suspected and bones of the pelvis and there are
multiple blastic lesions again noted in the spine and ribs.
My MO has told me that for now I do not need radiation or chemo. He likes what the Lupron has done and wants me on Zytiga. I asked him since the PSA has come down what does that mean for any cancer outside the prostate area? He says if the tumor is going away, which I think it has, then cancer in other areas is in remission too.
Again this scan was on Dec. 1st. 2021. I asked him when another scan is scheduled and he did not seem to think I was ready for another one yet when I met with him last week (Jan. 28th).
The problem is he is insistent about Zytiga and it really bothers me physically. I have posted some of the effects here to others. MO says "tough it up".
All I know is this...when this all happened last Fall I was feeling very bad. Lost weight. After the Lupron, supplements, acupuncture 2x a week for 3 months, and juicing regularly my iron level is up, my PSA is down, and I am going to meetings and working again.
I did schedule an appointment with a MO at Baylor Medical Hosp. in Houston next week for a 2nd opinion.
I can only add that Xtandi worked wonders for ME for about 15mos. Dropped a rising PSA to <1 and eventually failed. Little side effect beyond fatigue. For ME a better choice than adding Prednisone with all its side effects.Now on Lynparza and its working well but not reducing PSA as much.
Got a good CT scan today showing reduced lymph nodes.
I was given option of either Xtandi or Zytiga and chose former after research.
Very similar story but with a bone met. I have met with 2 MO’s and both are recommending either Zytiga or Xtandi with the Lupron after I finish IMRT. One prefers one and one prefers the other. I would ask for an explanation of why your MO is so adamant about the Zytiga. If it is that toxic for you then there are obviously other options.
MastersApprenticeLook for Tall Allen's note.. finding out just how much cancer is outside the prostate is very important. It will help guide your treatment. Note this PSMA PET is now available at many places. It's important! If not available with current MO find another. .
Muscle cramps in legs and arms, pain in joints, throat gets sore (seriously and that is listed as a SE), bad lethargy, light headed.
And even the Lupron had SE with me I am still experiencing after 60 days. My right calf swelled up for 5 days with cramps and I am having muscle aches around the body. Not bad ones, but noticeable. Today I am starting some supplements to help the liver and kidneys. I was told by me acupuncturist muscle aches are a symptom of an over taxed liver and joint aches are a sign of kidney issues. These drugs are super hard on the liver and kidneys as we all know. My system is sensitive which is showing to be a blessing and a curse.
Hmm, Muscle aches crapms, joint pain. Weakness and more aching is something I suffer from just about any time since treatment started. I can't speak for everyone here, but I think it's something very commonly experienced in the group.
Zytiga seems to give many of us, very good results, as far as PC is concerned, we learned to live with the muscle issues.
If I am not mistaken, a recent study demonstrated that taking one 250mg Zytiga is as effective as 4 when taken with food. Maybe if you tried that it would help. It certainly couldn't hurt.
I was on Zytiga for almost a year and did help drive my psa down but had to stop taking Zytiga due to high liver enzyme toxicity as I went from 1000 down to 250 and still my liver was twitching. MO told me to stop taking it and still to remain on Lupron. May I ask what your specific SE’s are?
Muscle cramps in legs and arms, pain in joints, throat gets sore (seriously and that is listed as a SE), bad lethargy, light headed.
And even the Lupron had SE with me I am still experiencing after 60 days. My right calf swelled up for 5 days with cramps and I am having muscle aches around the body. Not bad ones, but noticeable. Today I am starting some supplements to help the liver and kidneys. I was told by me acupuncturist muscle aches are a symptom of an over taxed liver and joint aches are a sign of kidney issues. These drugs are super hard on the liver and kidneys as we all know. My system is sensitive which is showing to be a blessing and a curse.
My situation sounds very close to yours. I took Lupron and 750mg Zytiga for 2 years with radiation early, more in my profile. I am currently off ADT, my next PSA test is mid March.
Can I ask you please...when did you decide to get off the ADT? After being on for how long? I do not want to think I have to take ADT the rest of my life.
It was a decision my MO and I decided on based on the positive response with Zyriga, Lupron and igmrt to prostrate and local surroundings. I was on hormonal therapy for almost 1.5 yrs
Now that you have posted more info I see less similarities. Your diseased has progressed further than mine had at diagnosis. The reason I am off ADT is because my intial treatment was with curative intent and I am waiting for that to be determined. Good luck, I hope you are able to work through your issues with treatments as there are many available now and they are the reason patients have seen improved survival.
Thanks same to you. Friday I am going to Houston to talk to a MO at the Baylor hospital. They are supposed to be cutting edge.
Personally I feel almost 100% fine except for the medicine side effects. How long do I need this stuff? I realize I do not know what I am dealing with BUT....there are different styles of treating people. As in COVID some doctors tell you you need 2 vaccines and a booster, yet some tell you natural immunity is best. I am wondering about Cancer treatment. If you scan clean and HAVE CHANGED YOUR REASONS for getting sick by changing your health 180 degrees, do you still need this medication? Are they simply following the basic protocol? Are they over prescribing you? Is your body able to cope now? Or do you need this stuff for life?
The answers seem to depend on who I talk to so I am reaching out for for other opinions just to see what the consensus is for me.
I am asymptomatic as well. Based on Standard Of Care in the US as I understand it you would expect to be on it the rest of your life if you are able. That said when I researched what a PSA of 156 meant I expected to be on ADT the rest of my life. Through additional research I learned there was a chance I might fall in a small group of Stage 4 candidates with favorable prognosis based on a clear bone scan and only LN involvement despite such a high PSA. Turned out that I did fall into that group.I kind of understand what you mean about different styles of treating people but clearly PC is not Covid. I recommend you really learn about what you specific PC is and what potential progression might occur. This forum is good for that in addition to many other things. You have to be clear what your PC is so you can understand which other members are closest with similar traits.
If you get a clean scan I would question which one your refer to and when you get it. However, clear scans may be a chance to get off the drugs. I am taken off based on my original prognosis and PSA along with what my MO perceives as my current overall health. I made many of the 180 changes you mention above.
Over prescribing is something you need to research. A lot of current cancer research has lead to multi-prong attacks. We have quite a few men on here that have done well on monotherapy or 1 drug at a time. They use them until they fail and then move to another. I certainly could not say which option is better but some would say its because that some of us have very aggressive PC and others and some have much less aggressive despite having similar traits at diagnosis. I can say from being on this forum almost 2 years now that seems true. How do we know which one we are ? Some refer to bio-markers (blood tests , etc) but I think also time.
This is all just my take on what's going on. I also suggest you get to a point where your not being swayed by whoever you talk to. Get to a big picture point so you know what you have and when you talk to people your sure what they have. Though outcomes may be similar surgery is different than radiation which is different than Chemo which is different than just ADT as far as effects of treatment and monitoring its success. Others may be going after alternative only options and most all of us wants to be sure what we choose is the best choice and that we made that choice for the right reasons. Unfortunately this is something we can never be 100% sure of so we can't beat ourselves up about it.
Wishing you the best result to what your choice for treatment is.
Today I went to get my next Lupron shot. Spoke with the nurse for 25 minutes. Asked her "What kills the cancer?" The immune system or the Lupron? And after you fall to zero PSA what is keeping it there the Lupron or the immune system? She said she was not sure.
Friday I go to Houston to have some chats with state of the art doctors. I think the answer is we are all different and no one knows when to leave ADT in spite of "what the studies show".
However, I did not know that I was scheduled for blood work today. Tomorrow I see the new PSA. I am praying the numbers keep falling. I don't want to mind-f*ck myself as this is all new to me.
I know, test anxiety. It never gets easier for me. Early on I read a book called Radical Remissions. I also read about guided imagery, self actualization and a whole lot of other books about cures, successful treatments, etc. I think they helped me belive its possible. There's always hope and cleaning up my life, diet, relationships had only positive results. I had been exercising a fair amount for years before being diagnosed, cycling. After being diagnosed I hit it harder. I lost over 40 pounds and got faster on my bike and started riding farther. I had a much easier time with ADT and Zytiga than you are having and had it been as bad I may have felt differently. But I did what I did and will do what I think is best if%when the time comes to make a decision. Now I live one day at a time as best I can. I am not going to let my March 15 blood test mar my enjoyment of life today. Every day is important now. I find so much more joy in what I do and my family and friends. I hope you have people that are close that you can gain strength from even if they don't understand what your going through.
I hope the Drs are able to answer your questions. Feel free to ask them on this forum as well. You will get all kinds of answers and opinions and at the same time maybe some camaraderie.
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Edema with Advanced stage 4
Stage 4 , Veterans Administration
2 years into Stage 4 Treatment 
Duration of ADT+Zytiga? Thoughts on when to stop or get another opinion?
