Advanced Prostate Cancer

Robertleeb

I was diagnosed with prostate cancer in May 2017. 3 weeks ago I received the Lupron shot along with Casodex pill, 50mg a day. middle of Sept I will have radiation treatment for 8 weeks. I also smoke cannabis to reduce the hot flashes and not having a appetite ,It seems to be working for both,no more hot flashes but the first day I got the shot the hot flashes started within 5 hrs. of getting the shot, I started to smoke cannabis to relieve the side effects and it has worked and my appetite is great. I wanted to ask if there is anybody doing cannabis oil along with the Lupron shot and casodex. I haven't tried it because of the thought it would make the shot and pill less effective. I know smoking cannabis can reduce sperm count by the studies I looked up, which means its basically doing the same thing Lupron and Casodex does lowering Testosterone , it seems the oil would do the same as smoking it but more efficient just don't really know, I read smoking cannabis gets only 20% of the total amount of the plant and cannabis oil 80% also ingesting it is more efficient. is there anybody doing the cannabis oil with Lupron and Casodex? Thank you.

30 Replies
oldestnewest

Welcome to the club that none of us want to be in. Sorry you have to be here, but it's good that you found this forum. We are here to help and support each other through this journey of prostate cancer. We share our knowledge to help each other make important decisions for treatment. You are not alone, we're all pretty much in the same boat here so we all know what it's like.

I'm surprised you had hot flashes so quickly after getting the Lupron shot. Normally it takes a few weeks for your testosterone to get to "castrate" levels, normally around 20 or less. I didn't start having hot flashes until around 2-3 weeks. I've heard that cannabis works for hot flashes for some people, but it didn't work for me. I use it for other purposes though.

Cannabis has not been proven to lower testosterone levels any significant degree so it would not be a substitute for Lupron.

Keep us posted on your treatments and welcome aboard!

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Thank you for your reply, I took my casodex around 11 pm today and a half hour later I did start to get warm so I smoked some cannabis on a volcano style vaporizer.with the plastic bag, I would say 20 min. later it went away.

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In all honestly, the "warm flash" that you experienced mostly likely would have dissipated on its own within 20 minutes.......

Seriously, everybody that I know that eschewed modern medicine for THC oil has died. Pain, I can understand. Stress free, I can understand. It's been 48 years since I set aside blowing grass. However, its been over 13 years dunce I was diagnosed with metastatic PCa.

Don't know what your age, Gleason Score, or PSA, but if it is at least. Gleason 7 (4+3), I would continue with your plans for Radiation. In my case Brachytherapy and IMRT, then have a short course of adjunctive chemotherapy. This should cover any micro-metastasis floating around in your lymphatic or vascular system. In fact there is trial taking place with this protocol in Houston, Texas showing very promising results.

I am biased and believe in early chemotherapy while one's body is strong and the tumor burden minimal. It worked for me and at 70 years of age, I no longer worry about re-occurrence as I have been undetectable for over 12 years. I no longer needed Lupron and stopped the injections over seven years ago.

Whatever decision you make is yours and as such is the right decision fir your. Listen to your Medical Oncologist, hopefully he specializes in PCa, and enjoy life.

Keep kicking the bastard.

Gourd Dancer

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I am 67 years of age with a Gleason score 8, PSA 7 and the biopsy was 1 out of 12 sample cores was positve I believe I caught it early, I was going to have surgery but I was having panic attacks so decide to have the radiation treatments of 8 weeks 5 days a week. I had a bone scan and CT scan with the cancer staying in the prostate only ,no spread at the time which was a month ago. a couple of weeks ago I was with the radiation doctor and he did a digital exam and I asked him if he felt any bumps or enlargement and he said no, basically the same thing when I first went to a uroligist to find out why my PSA was at 7, then the urologist put me on antibiotics for 6 weeks thought maybe a infection. after the 6 weeks my PSA went to 9 so he sent me to another urolisgist to do the biopsy that is when I was confirmed to have prostate cancer. I don't know what my PSA is at this time but I will call my primary doctor to run a test.

Thank you for all your comments, I think this great to learn how other are dealing with Prostate cancer and different protocols because I am learning good treatments do not work the same for each individual cancer patience, I do believe in the doctors that are working with me and will follow all their guidance.

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Welcome to the group, Learn all You can. There have been many advances in Prostate cancer in the last decade, and hopefully much more in the near future. Learn all you can, keep all your labs and records, and know what they mean. I always just thought the hotflashes meant the Lupron was working. I wish you the best and good luck with radiation, keep us posted

Dan

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Thank you Dan for your reply, also for letting me know about staying on top of my lab results and all my records. I will learn about the meanings also. I did cannabis oil when I first found out and doing about 6 rice grain sizes a day,also smoking cannabis all day plus eating it too, trying to hit it hard and quit after the Lupron and casodex Hormone therapy, not knowing if if would counteract it, I was hoping I could basically stop the cancer from spreading before the hormone Th. because there was 2 months of nothing being done, I felt I had to do something.

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Is that what the hot flashes mean? Or is it something else?

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That is what the Dr that dxed me said, and I believe that is what it means, however there are ways to mitigate that side effect if you are interested

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We can look at you more clearly if you could provide us with the important additional information such as your age, cancer staging, Gleason Score, PSA, clinical symptoms if there are any. It would be always advisable to keep your focus on the primary main treatment that deals with the PCa : Radical Prostatectomy ( If applicable in your case ) , ADT ( Lupron, Casodex ), Radiation ( IMRT ) and if you go to the next level, other main treatment protocols. All other matters are of secondary importance or relatively less important. If your PCa is GS 8, 9 or 10 there is no question about having to take aggressive treatment as early as possible. You can always learn from the friends in this group how to deal with the side effects in any type of aggressive PCa treatment because they have real life experience. You have got a good start by trying to share your experience with our group. That is exactly how we learn here and benefit a great deal. Please keep us informed as you progress.

All the best to you!

Sisira

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I just post with more information about myself and questions you asked. I replied to some body else but here it is again and thank you for your support of information. I truly believe this helps us learn more about prostate cancer and how we each deal with it.

I am 67 years of age with a Gleason score 8, PSA 7 and the biopsy was 1 out of 12 sample cores was positve I believe I caught it early, I was going to have surgery but I was having panic attacks so decide to have the radiation treatments of 8 weeks 5 days a week. I had a bone scan and CT scan with the cancer staying in the prostate only ,no spread at the time which was a month ago. a couple of weeks ago I was with the radiation doctor and he did a digital exam and I asked him if he felt any bumps or enlargement and he said no, basically the same thing when I first went to a uroligist to find out why my PSA was at 7, then the urologist put me on antibiotics for 6 weeks thought maybe a infection. after the 6 weeks my PSA went to 9 so he sent me to another urolisgist to do the biopsy that is when I was confirmed to have prostate cancer. I don't know what my PSA is at this time but I will call my primary doctor to run a test.

Thank you for all your comments, I think this great to learn how other are dealing with Prostate cancer and different protocols because I am learning good treatments do not work the same for each individual cancer patience, I do believe in the doctors that are working with me and will follow all their guidance.

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Robe,

Thank you for giving the required information. I was 68 when I was diagnosed in March 2015, PSA 7.9 with no symptoms. Organ confined PCa, GS:9 staged T2c No Mo. Immediate aggressive treatment received : Radical Prostatectomy ( RP ) + Radiation ( IMRT ) + ADT for 2 continuous years ( Zoladex and bicalutamide 50mg ). Throughout the treatment period up to now my PSA checked every 3 months has remained stable at 0.008ng/ml and I am off any treatment since April 2017. I am very particular about proper diet that will help to control the progression of my PCa and also engage in regular exercise. During the bygone two years I have learned a lot about PCa including PCa cell biology. I urge you to do the same. Knowledge is power. When you have the correct information you need not have to grope in the dark. Being GS:8 yours is a high risk cancer needing aggressive treatment. Prostatectomy in cases where it is possible has a significant advantage because debulking the main source of cancer will take away a great deal of cancer risk leaving only a manageable residual risk within the body. Under the care of an expert MO specializing in treating PCa, keep your focus on the main treatment protocol and try your best to get into a situation of complete remission with undetectable PSa. I think that should be your goal. In my case if there is going to be a relapse I am going to do exactly what my friend Gourd Dancer has done to control his PCa. I see he has given a very good advice in his reply. Almost all the others too, who don't want to sell snake oil but genuinely and compassionately want to help each other in fighting with this insidious decease.

My best wishes for you.

Sisira

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Thank you Sisira for your great comments, I am glad you are doing great, I pray I can do as good as you did, I did get the Hormone shot, and cosodex pill take everyday. I will do every thing the doctors says I should do, when the doctor said he did recommend surgery but I started to get panic attacks and thought I was having a heart attack. I ended up in the hospital they found nothing like a heart problem or stroke . I do have family with heart attacks and strokes so I decided prostate surgery was not the best way at this time, I know I had one out of 12 samples that was positive,but there was 2 months nothing was being done and I did contact my uroligist and asked him if I was a candidate for the radiation treatments and he said yes the radiation doctor said he wanted to do hormone therapy first so I got my shot 3 weeks later which made me nervous about the time between confirmation of the biopsy and when I got the Hormone shot,(2 months) so I did basically doused myself with cannabis shortly after cancelling the surgery. I do feel good how everything is going forward now ,just don't know if there was any movement away from prostate during the two months. I don't think Medicare will pay for another bone and CT scan, I know right before I start my radiation treatments they will do a scan ,so I will keep doing the cannabis to keep any effects from the shot and pill down. I did get my golden seeds inserted today and I did ask the doctor about the hot flashes , some one mentioned on HealthUnlocked board that he thought the hot flashes was telling us that its working. the urologist today told me he could give me a prescription to stop the hot flashes so I'm thinking it doesn't matter either way, only the hot flashes seem to make me feel like what the heck is going on, so I won't take the script and use only cannabis because it has been working for me. I also wanted to mention, I was told not to take blood thinners and vitamins during all my regiments , only the radiation doc said I could take B17, I looked that up and it really got me excited, it seems to have great results with cancer and its a apricot seed , there are kernels full of B17. I did order bag of the kernals to eat. I believe we have to fight Prostate cancer in all directions because not all individuals will do the same for each protocol. I would like to thank everybody that replied or made a comment, positive or negative, I realize being on HealthUnlocked we can learn from each other and I am learning a lot from reading all the great comments.

Thank you

Robert

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I hope I'm wrong, but I'm of the opinion that cannabis oil is nothing more than snake oil. I've lost three friends with cancer in as many years who used this. Rick Simpson is a charlatan, who's making lots of money from desperate people.

I'm not saying that cannabis is good for pain relief or anxiety, but a cancer cure - don't get me started.

As to the OP saying he tried it for hot flashes, and it went after 20 minutes, they don't last that long anyway, about 5 minutes max. The clue's in the name.

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Cannabis is definitely not a "cure" for cancer, but it does help with the symptoms so I support its use. There are claims about Cannabis that haven't been proven so I take a lot of things with a big grain of salt. But hopefully we can have more research on it. One thing that has been proven is that Cannabis reduces the need for opiate-based pain medications. To me that alone is enough to advocate for it. Opiates are the number one drug problem in the United States where I live. No one is overdosing on Cannabis.

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I live in a medical marijuana state, that incidentally had a recreational use proposition fail. With PC I was allowed to get my MM card. I like to get a relaxing buzz on occasionally. There is one drawback that the MJ lobby never mentions. After a 6 month eligard (ADT) shot I developed gynecomastia and my urologist sent me for a mammogram (gee, wasn't that fun). While there I asked if all of the men they see have prostate cancer. No, they see a lot of men, some fairly young, who are heavy pot users. Now that I already have this problem I see no reason to discontinue light use.

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Your effort to save an innocent man from Snake Oil is very much appreciated.

Sisira

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Using cannabis at this point seems strange. Where did you hear that? Estradiol patches changed twice weekly eliminate hot flashes . Hang in there!

Bob

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This is a little oasis free, of cannabis oil. I am a strident opposer of its promotion on Facebook, so this site is refreshing by its absence.

It stops me turning into an angry old man, keeps me sane and lowers my blood pressure.

I need to stop "shooting people down" on Facebook, it's taking up too much of my time!

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My husband ingests the cannabis oil, and it has helped with pain. He rarely if ever takes any narcotic and it also helps with the severe nausea, and allows him to eat.

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To clarify he uses a FECO with a 1 to 1 ratio of THC to CBD, or as close as we can get to that ratio. I will not use the terminology RSO, because it seems to raise some folks blood pressure. :) He is also receiving treatment from a medical oncologist. Started with a double injection Leuprolide acetate, then an every 3 month injection of Degarelix, a monthly infusion of Zoledronic acid and Dexamethasone sod phosphate. Now taking Abiraterone acetate with Prednisone. Dx. June 16, 2017 Stage IV with mets to the pelvic bones. CT SCAN and Bone Biopsy PSA 1291. Alkaline phosphatase 1868 U/L

July 26, 2017 PSA 58.69 Alkaline phosphatase 816 U/L.

Going for labs this week.

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Welcome to the Living with Friends, Forum. I have stood on my soapbox at least a dozen times, about the Lupron Shots. I will not go near them. I and others who have Pca, who use a certain Leutenizing agent, are obviously not on this site.

I will do this one more time. I use the Vantas Implant in the arm. It is a one time procedure, and the Gel insert implant, lasts for 15 months. My Urologist has gotten 2 and 3 years out of one, but my Oncologist[Head of Prostate Cancer Trials/Research at my [Center of Excellence], likes the Vantas Implant swapped out at 15 months.

What this implant does--it puts out a known amount of Leutenizing Agent on a steady daily basis. There are no ups and downs, and you do not get that initial Surge of Side Effects, like you do with the Shots. We who use Vantas---call it Steady Eddie. Side affects are minimal, but over the years you will get some building of the side effect such as fatigue, and muscle loss--which comes from loss of T. Once in awhile a get a warm glow for about 2 minutes when going to bed. That is it. All other side effects come from removal of T.

You get a Shot you are on a bell curve---you go right to the top, and as the drug depletes, you wind up needing another shot. When depleting you are putting yourself in danger by allowing the reduction of Lupron waiting for the next shot to allow the Pca cells to rear their heads.

I think the reason Doctors do not use this, is that they are not trained in the minor surgery of implanting the Vantas---and are shy about cutting a slit in your arm, an stitching it up, as well as how to place it in the muscle. And worry about getting it out, which requires more skill, for a replacement. Anyway I am off my soapbox. You want to suffer be my guest, or find a Doc. that knows how to do the Implant. The above is IMO--I am not a Doctor.

As to Cannabis, I am a proponent of using CBD Oil to mitigate the side affects, associated with the drugs we take. There are so many vendors, you have to find one that is legitimate, as to what is in the bottle. FDA is not regulating this, as it is legal per each State. If in the market look first for those that claim they are using CO2 Super Critical Extraction.

As to THC OIL or THC/CBD combination, I certainly am a proponent when you are in late stage, with obvious pain that needs hard pain relievers, or you need relief from appetite loss, especially when having a tough time with Chemo. No need to smoke anything. If you cannot get the Oil, and can only get the weed---to avoid smoking--use the following process. Take a baking sheet, and spread out your Pot. Put in a pre-heated oven that was set for 220 degrees. Place in the oven for 30 minutes, and remove. This process is called decarboxilation. And now you break up the Pot, by removing the stems, and any seeds, and buy any Brownie Mix and add the pot to the Brownie Mix. And bake. Start with a 1/2 cup of pot per box, and adjust as needed for the next batch.

Nalakrats

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Hi, I use Tylenol (generic) Timed released 650mg 8 hour tabs for pain and hot or cold spells. At night I can go to bed and not awaken with spells during the night. I have had 72 radiations. and Lupron (generic) injections (every 3 months) for 5 and 3/4 years with few side effects, except a whole new outlook on sexuality. When I started treatment I was addicted to drugs, so I go to Narcotics Anonymous now ( they don't recommend I use any substances). Anyway, as you use our website you will find we are all different yet we are the same. Our differences are age, different types of prostate cancer, how far cancer has grown, it's location, other diseases we have (I have diabetes, heart disease, and kidney disease, I am 72 years old). Yet I get around pretty well and have a wonderful life. Yet we have similarities in our desire for better treatments and how to solve problems. So go ahead with your cannabis, but be aware that there is little effect on the prostate cancer cells themselves. Read about the side effect of Lupron used for male prostate on Google. Learn about the AR (androgen receptor on prostate cancer cells) and about metastasis to the bones. I use an injection of Xgeva when my bone density is low, your oncologist will help you with that.

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One more thought on cannabis and ADT. Another side effect that many of us struggle with when on "double blockade" is the weight gain factor. Many of us seem to put on an additonal 10-15 pounds due to ADT. It effects our metabolism. A daily exercise regimen and careful control of diet can help counteract this weight gain. But the tendency for cannabis to increase appetite and increase the craving for calorie ladden junk might not be a result we would want. Just a word of caution. Weight gain has many effects like loss of self esteem, etc.

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I've heard that a partial remedy for that is to eat before you ingest cannabis. I've also heard that it can somehow regulate blood sugar levels and that there are users who don't put on weight. Your mileage may vary.

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I am a firm believer in the benifits of ,,M.M. In any form ,for cancer.Edible is better than smoking -and a suppository is best for P.C., if you still have a prostate. Google Canabis for prostate cancer..Probably more info elsewhere than here .Pure organic Cbd 's available on amazon .These help me with moods and most muscle and joint paint dramatically reduced along with a more general feeling of calm. I was never a big pot smoker before.But since my stage#4 no -op diagnosis I've done all forms of canAby in hopes of killing PC .1yr now with no-visable signs of PC .My oncos say whatever you are doing keep doing it.It could help cure us.The way I look at it is "what do we have to lose ? except cancer? Do not let any body detour you from doing things that you belive healthy for yourself. At least I think one can minamalize many side effects of treatments and alleviate some of the monotamy of living with APC. Will M.M. Alone kill APC ? I doubt it ,most of us need conventional treatments .I think that you said that you caught this early.A lot That you can do diet & stay active..The truth for men was RT and adt give me fatigue and add on High potency canAby remisores snd you might end sleeping quite a bit. That 's just me..We All toletate things differently. Good luck and best wishes..

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Hi Robert,

Reading your initial post, you seem to suffer from a very common fear that every new PC patient suffers from, the fear of inaction. First off, please understand that PC is a slow grower, even for the aggressive kinds, and your doctors will typically move in 3 or 6 month increments. As a patient, this seems crazy! We fear that the cancer is going wild in our bodies during that period in between appointments and we want to do something. But the more experienced among us know that there is time--you have time. Don't panic. From what you have said, you have PC that is contained in your prostate. That is the best possible outcome of an initial diagnosis. Your doctors can actually talk about curative approaches, rather than palliative ones for those of us at Stage 4. I have been on Lupron for almost 2 years now. I don't suffer from loss of appetite or fatigue. I don't have pain. So it seems to me that you are proactively treating side effects that you have read about, but are not actually experiencing. All of us are different, our cancer journey is different and our reaction to treatments are different. Just because I don't suffer from fatigue or loss of appetite doesn't mean that you won't. But conversely, just because you have read of this or that side effect doesn't mean that you will experience it.

Your decision to do radiation rather than RP seems to be a reasonable one given recent studies which demonstrate that the outcomes are comparable. I had both done. But your dive into the cannabis pool seems like a desperate response to a situation that doesn't really call for one. I wish I was in your shoes. Take a deep breath. Learn all you can. Don't panic. And know that your diagnosis is a relatively good one under the circumstances.

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Thank you so much cfrees1, I am fearful of not doing something right away, when I first found out , I thought I pretty much had a year to live because of the words "Prostate Cancer" and "high risk". which is me. I don't like to take a lot pills because I am a diabetic also taking pills for that, type 2. my A1C was actually lower then a person who doesn't have diabetes . it was at 6, I asked the doctor what was normal and he said 6.3. I did quit eating pasta , potatoes, and only one sllice of whole grain bread in the morning and no more bread the rest of the day. no candy at all. so I pretty much got that under control so it don't effect my cancer. I have always smoke cannabis and sometimes I think because I do , and my biospy was at the lowest level that can be detected for cancer. 1out 12 samples. hearing that the prostate cancer is a slow mover does make some comfort.

Thank you

Robert

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After reading your stats, I predict you will be fine for a long long time, Changing to a mediteranean diet, may even control your cancer. and yes welcome to the living with friends forum.

I wish you the best

Dan

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Welcome to the "Joint"

j-o-h-n Thursday 09/07/2017 10:37 PM EST

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Hallo Robert

I was diagnosed January 2016 with tubular prostate cancer, the fast and aggressive one. PSA 901, Gleeson Score 8, black spot on the pelvis bone.

Like you I received ADT. In my case Lucrin. Also a calcium drip.

I also used a second line treatment, the malaria tablet Coartem. You can contact prof Henry Lai of the Univ of Washington directly about artemether.

The PSA dropped to 0.23 in the beginning of this year and I stopped all treatment for six months. The PSA is back to 5.9 and I took Lucrin in July again and drink Coartem now according to my weight - 8 tablets twice a day on an empty stomach, five days on, three days of. If you do decide to use artemether, read intensively up on it. I will gladly help you with info. On 400 patients followed by dr Rowen, not one died of cancer.

How is my cancer: All the cancer in my bone structure is cleared up. I am now booked for external beam radiation to clear up cancer in the prostate and iliac area.

For the past two months I threw a lot of ginger tea and ginger powder down my throat. I do believe in supplements like oil based Curcumin and phospholipids etc.

My MRI scan and original bone scan is available to anyone who wants to verify it. Bear in mind it is tubular prostate cancer. I thank God for every day and have given my time in His hands.

About cannabis. Makes you feel better, drops your blood pressure into dangerous levels.

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