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Post surg,post radiation, post lupron. PSA begining to rise.

janeebe3
Posts: 26
Joined: Aug 2009

Back again. Davinci June 2009. Gleason 9. Pre PSA 17. Post PSA 7 then 8. 4cm tumor found in pelvic lymph. Had 38 radiation treatments Jan 2010 combined with Lupron therapy 3 shots. OCt 2010 PSA 0.02 Nov. 2010 PSA 0.04 Dec PSA .4 CLean bone and ct in Nov 2010. Called today to make appointment. Does Anyone have any input please?

mrspjd
Posts: 688
Joined: Apr 2010

Jan,
Sorry to read of your rising PSA following multiple treatments. Could you clarify the 3 Lupron injections you received...over what period of time where the injections given and which type of duration, for example, the 1, 3, or 4 month duration shots. Were you also taking Casodex or other drugs with the Lupron, such as Avodart, Finisteride/Proscar? It is unclear if still on any ADT drugs or if all ADT has been stopped, and if so what were the reasons stopped, i.e., side effects, or did your PCa oncologist indicate that the disease had become hormone refractory, in other words, it was no longer responding to the ADT with the rising PSA while on the drugs? Sorry to ask such intrusive questions, but it would help to clarify your present situation.

janeebe3
Posts: 26
Joined: Aug 2009

My husband started the lupron and radiation together in Jan 2010. 38 rad sessions and 3 lupron injections every other month. The only other meds he takes are natropathic. (fish oil , magnesium and others.)
The results of the lupron became unbearable for him. He started losing focus, memory, anger and not being able to concentrate. The pain worsened and he started to have difficulty with thought to speech process. The symptoms are finally calming but are not yet gone. He will never take lupron again. They called last night with his Dr. appt. he will go on the 23 of jan. My husband has brought up the possibility of orchiectomy since it will deplete all testosterone with no meds. He is determined to have quality of life and not live through the lupron angain. It nearly killed me to see him suffer as he did. He is an intelligent man (I tease him he is my nerd) I am on board with whatever he decides. Any thoughts or opinions PLEASE

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Jane,

I am so sorry that you and your husband are suffering from this disease and the impact of treatment. From what you've described, it appears that the PCa had already extended beyond the prostate at the time your husband had his RP. The Lupron in conjunction with the radiation treatment should have really knocked back the cancer but the rising PSA could be an indication that your husband is suffering from a particularly aggressive form of this disease. Since his PSA scores have been rising even after Lupron, I would suspect that his cancer might already testosterone resistant and before embarking on orchiectomy I would be questioning whether or not that would have any significant impact in slowing the cancer. As you may know, there are often side effects after the testicles are removed that also involve hot flashes as well as other side effects. I'm sure you don't want to trade one set of ill effects for another, so please discuss this option carefully with your doctors and seek second opinions.

One thing you may wish to consider, if you haven't already, is the chemical balance in your husband's body that is affected by his diet. Many studies have shown that dairy products provide growth hormones that accelerate cancer growth. These chemicals from dairy, known as insulin growth factors or IGFs, provide many nutritional elements that cancer thrives upon. Much of the red meat we consume today comes from dairy cattle or other cattle that are treated with artifical growth hormones that also boost the IGF levels in animals before they are slaughtered. While eliminating dairy and red meat may not reverse his cancer, it could very well slow its growth and there are several stories where eliminating dairy as caused tumors to shrink or vanish. You may wish to read some of Professor Jane Plant's books on the subject. I'm not suggesting that a no-dairy diet is a cure or anything like that, but it is one of many dietary factors that you may want to consider in attacking this stage of his cancer growth. I believe that in many cases, our bodies have the ability to heal themselves if we give it the necessary tools and chemical environment. In my own case, eliminating dairy shortly after diagnosis dropped my PSA from 4.3 to 2.8 in about six weeks. In addition to your regular doctors, at this point you may wish to consider consulting with doctors that specialize in complementary treatments involving nutrition, diet, and other approaches to treating cancer. It seems to me that you have nothing to lose and your husband might well benefit from a different perspective. Of course, I would keep any specialist you visit fully informed of what the others are proposing or prescribing.

Best of luck to you both as you go forward and I hope your husband soon recovers from the debilitating effects he is experiencing now.

K

mrspjd
Posts: 688
Joined: Apr 2010

First, from one wife to another, I apologize for the mistake as your first post did not indicate you as the wife, but as the patient. I have since taken the time to go back and read your previous posts since 2009 and, am again sorry for all that you both have gone through. My husband has T3, locally advanced, G3+4=7, high volume PCa. So while we are not exactly in the same place, I do understand some of what you are facing and the fear. PJD has been on ADT (androgen deprivaton therapy) aka HT (hormone therapy) for almost a year. It consists of 3 drugs (Lupron 3-month injection, Casodex, Avodart), and while he has not been completely side effect free, he has tolerated the drugs well and more importantly it has worked as hoped, and continues to work, to reduce his PSA, T (testosterone) and DHT (dihydrotestosterone), along with radiation txs which he completed last October 2010 (no RP surgery elected). We are now considering an ADT "vacation," possibly intermittant ADT, which can recaputure T and lessen and/or stop side effects while off the drugs on "vacation." While I've never heard of a 2 month Lupron injection, that doesn't mean it doesn't exist. Intermittant ADT is not for every man, and I am not advocating it for your husband or anyone else--it is entirely a personal decision, based on educating yourself about the risks and benefits (both exist). But all men respond differently to ADT, and as you wrote, your husband's side effects appeared to be intolerable, necessitating he discontinue the drug(s). There are many new PCa drugs in the pipeline, some are newer ADT's, others are immunosuppressants and chemo drugs. I am not a doctor, nor an expert as to what the next step should be for your husband. If your husband is HR (hormone resistant) which we don't really know, but can only assume from your post, then would surgical C, be a realistic tx option? Surgical castration, with its own inherent surgical risks, may have many of the same side effects, both short and long term, as does continued uninterupted ADT, so please be sure you research this option carefully and get proper medical advice. We have found (for us) the best PCa medical advice/guidance to come from the larger well-known established teaching hospitals (universities) and PCa medical professionals who reside in practice at those institutions. They are most up to date on current txs and clinical trials for advanced PCa. My husband also sees an oncologist whose private practice is limited to PCa (a rare medical breed but they are out there). This MD is different from a general oncologist, a urologist, and a rad onc, and I hope (encourage) that if you don't already have such a specialist on your medical team, a consult and several 2nd opinions ASAP with a PCa oncologist should be considered.

Of course, as others have written, quality of life vs quantity of life are very personal and serious issues regarding further tx options/decisions. IMHO, your husband has every reason to consider that he will be able to have both, quanity and quality, based on risk vs benefit, as you examine what the next step in tx (chemo, etc) will be. Good luck to both of you.
Sincerely,
mrs pjd

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I had psa 24 gleason 9, 7 years ago. Took one shot Lupron to shrink prostate for the max allowed radiation. My psa numbers stayed about the same as yours, at the start, but I took no more hormone shots ever again. Of course they kept rising over the next several years which is normal and would now be in the 1000's if not 10,000's if it was to be checked, but on hospice care it is not done. My guess is you can keep the psa number down for a year or two with the shots if you are willing to deal with the side effects. I choose not to deal with them and have had a very good and active life. I still work and play golf and garden all the time. I found that by getting the stress out of my life and by not dwelling on the cancer that life can be pretty sweet. It is not easy to ignore treatment nor is it easy to accept, but either way your life expectancy is about the same and the quality of life I've had makes me believe I made the right choice as far as having zero treatment over the past 6.5 years. You have a long time to deal with this and I wish you all the best.

janeebe3
Posts: 26
Joined: Aug 2009

My husband is at CTCA right now. Here are the results. PSA up again from dec. .55. CT scan is clear. Given a prescrition for anti-androgens. They wanted to combine with the Lupron again. My husband ssaid No to the Lupron he will not take it again. He will next take another prostascint can. If the cancer is detected they will give chemo. If the location is not found they want to try a treatment that induces flu like symptoms that in turn cause his immune system to attack the cancer too. He will have to stay in the hospital for this. He will bring the details home tomorrow. Has anyone heard of this treatment?? Any info would be great.
Thanks!

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

Hi Janeebe3

This is a long post, I hope my insights will help you and your husband's quest.

The chronology of your husband’s case you posted above is clear that the hormonal drugs were doing their work as it should be expected. The decrease in PSA on On-Drug period and then its increase on Off-Drug period indicates that your husband may have been on low testosterone. You could check this if your doctor had taken a testosterone test, or if your husband had any typical symptom similar to the ones we experience when in menopause, like; hot-flashes, irritability, loss of sexual desire, sleep disturbances, loss of muscle mass, decreased bone density (osteoporosis), etc.

The side effects he experienced (losing focus, memory, anger and not being able to concentrate well) seem to be pituitary apoplexy symptoms. This is caused by the drug Lupron (LHRH agonist) acting on the pituitary gland (filling the receptors LH which are normally filled with LH from the hypothalamus) and causing a “congestion” of chemicals (LH and Gn) in the gland.
In some cases this happens temporarily (7 to 10 days half-live of the drug) but some patients cannot metabolize the hormone in the receptor and that causes the apoplexy of the pituitary.
In this case (most probably your husband’s) doctors recommend to change drugs (to another LHRG agonist) using different active ingredients (example; Lupron=leuprolide acetate could change to; Zoladex=goserelin, Firmagon=degarelix, Decapeptyl=triptorelin acetate, etc.), or change to estrogens (DES).

However, your husband choice in orchiectomy is valid in such setting too. It will deplete almost all (95%) testosterone with no meds. Orchiectomy has a long history of performance without complications. It is simple to perform, cheap, but it will be permanent. The side effects from surgery castration are related to low testosterone (listed above) which in some patients causes Hypogonadism (testosterone deficiency). That is treated with medication (intramuscular injection, a patch or gel placed on the skin, a nose spray, etc.). Many patients do well on HT for long periods over ten years.

You should discuss in detail about this with your oncologist, before giving up with the traditional hormonal treatment.
Two good informative books for cases like your husband’s which I recommend you to read are; "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. C. Myers, and "A Primer on Prostate Cancer - The Empowered Patient's Guide” by Dr. S. Strum & D. Pogliano

In your last post (Jan24) you commented on prostascint scan to locate the cancer. That may be done if your doctor is thinking in focal therapy (radiation, etc.). Chemotherapy is done on systemic approaches that will cover the whole body. The same applies to the treatment (Leukine) that induces flu like symptoms (genetic and immunological therapy). These two choices advanced by your doctor make part of the so called “second-line” hormonal therapy. This is usually the protocol followed once the first-line HT fails; which clearly is not the case of your husband yet.

I would suggest you to obtain second opinions from specialists (HT Oncologists) on prostate cancer before committing to the “second-line HT”. This treatment has other side effects and the drugs restrict certain other medications usually taken for other health problems. If your husband decides on that he should do some tests firstly to check other possible problems (ECG, BCG, Lipids, ALT, AST, etc.) that could interfere with the “second line” hormonal treatment. The above books also describe well details on the drugs and treatment.

I like to see you so involved in helping your husband. Hopefully he will choose the best for his case.

Wishing that all goes OK with the two of you.
VGama

tarhoosier
Posts: 181
Joined: Aug 2006

Superb post. Precise and understandable in all details. Useful for all.
I nominate Vasco da Gama as our navigator in this unknown sea.

mrspjd
Posts: 688
Joined: Apr 2010

I must have missed something here. From the info provided by Jane as of this date, how can you determine that the Lupron tx alone (unknown if given with or without Casodex?), but either way, was working to lower PSA and that the PCa was not HR (hormone refractory or resistant)? And it is also unclear, if Lupron was injected every other month initially over the course of RT (3 injections total?), what type of injection was it, since I am not familiar with a 2-month injection, only a 1, 3, 4, or 6 month? Was the Lupron (alone?) hormone tx administered following Lupron protocols for short term use? Might it also be useful to know the total Gy doseage used in the course of RT in order to understand the whole picture? Perhaps I'm confused. What am I missing?

janeebe3
Posts: 26
Joined: Aug 2009

Testosterone levels prior to Davinci in summer 2009 was about 160. Have not had reading since. The Lupron was by itself (no Casodx etc) and initially a 4 shot regimen. However, once it was apparent that the "thought to speech" and inability to focus was not getting better he(my husband) said NO MORE!. That is why only the 3 shots. Their concern regarding the PSA is that immediately after the Lupron stopped the Psa started to raise. We should have gotten at least 6months or more befor we saw the rise.
I am unsure of the Gy dosage but I will find out.
The orchiectomy has been put aside as it will only deplete 90% test.and because the side effects are irreversible. He is in fear due to the episode with the Lupron.
They are saying they want to try and locate first and again do the radiation hence the prostascint scan. (Hopefully scheduled this next week) He started Ketoconazole today to "shut down" the adrenal gland.
A friend has suggested we look into a place in California called Rational Therapuetics. I will start looking into them also. Any info or advice is welcomed!!!

Thanks all

janeebe3
Posts: 26
Joined: Aug 2009

Primer for prostate orderd from Amazon due Thursday!! thanks!!
Also the drug he started today is Nizoral they gave him nausea meds to accomodate it.

mrspjd
Posts: 688
Joined: Apr 2010

I've posted a new thread today titled "treating advanced PCa" with a link to an informative video presentation. While it appears your husband's PCa staging is currently being re-evaluated (and I'm hoping for the best), I also hope you find the info in the video link helpful in answering some of your questions.
mrs pjd

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

Hi Janeebe3
Thanks for posting on the progress of your husband diagnosis.

Nizoral is the brand name of ketoconazole. They are the same drug, being the name Nizoral more known for its anti-fungal shampoo form.
This is a drug usually administered with calcitriol in protocols of “second-line” hormonal treatments for advanced prostate cancer cases. Surely it can be taken in any stage of the cancer as its aim is to lower the testosterone, which may be the intent of your husbands’ doctor. Nausea is a common side effect from the drug, not flu symptoms as you were informed previously.

One concern to be on alert is the prohibitive drug interaction that Ketoconazole is known to have with some medications taken for other health problems. I would suggest you read this article from PCRI (by internationally recognized prostate cancer oncologists Dr. M. Scholz and Dr. S. Strum), where you can find detailed information regarding the drugs action, inter-action, side effects, etc.
They say “……Make sure that the administering physician has a complete list of your current medications and supplements……”
http://www.prostate-cancer.org/education/andeprv/Lam_HDK.html

Other sites on the drug;
http://www.medscape.com/viewarticle/406391
http://www.anti-aging-drugs.com/nizoral.htm

It is difficult for me as a layman to understand the purposes of the Prostacint scan. Focal radiation therapy can be done but complications would be most probable, if that is to be applied on the same irradiated areas done in your husband’s previous (“….38 radiation treatments Jan 2010…). Unless, your doctor wants to locate the cancer because he is suspicious of metastasis to other parts of the body such as hipbone or distant lymph nodes.

I wish your husband a continuous recovery and the best on its treatment.
Keep posting.
VGama

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