Does My Oncologist have the right plan to extend my life as long as possible ?

I would like to 1st start out by saying, I'm happy that I found this great site of wealthy information ! I've been reading many posts for a few weeks now, and decided to post my story: My Name is Eric,

My story starts with a trip to my Primary doctor because I was having troubles peeing. IE: Feeling like I have to go, but it wasn't coming out as it should, very slowly. And also noticing my ejaculations were getting Less and Less, also not getting the same erections as I had been. I also was getting bad pains in my tail bones and my hips. I knew something was wrong with me, but had no clue as to what. At that time in June 2015 , I was 55. She (My Doctor) ran some blood work and did a urine test. Told me I had a hint of blood in my urine and treated me for a UTI. I took the antibiotics for a week and went back to see her, Was told NO, UTI, but my PSA was 8.3 and I had to see a Urologist. See him, and he did a DRE (I had 1 when I was 50) and told me my prostate was enlarged and should be ok about cancer because he didn't feel any lumps or bumps and I need more blood work, Results of the blood work turned in a PSA of 12.9. He told me that was high and was concerned. Next step was a biopsy?

To be honest, I really new nothing about the prostate or Cancer in general. For whatever reasons the was. No one in my family to my knowledge, ever had any type of cancer. My doc call me up with the results, He said I have prostate cancer and it may be aggressive and we needed to be aggressive in the treatment. Gelson Score of 9.3,,I said OK, Now What do we do. He was going to remove it with the Da Vinci method, but I had to get a full body bone scan and an MRI of the prostate to see if it spread.

From the time he told me I had to get a biopsy, I started researching about all I had just learned....What I learned was, It didn't look good for me based on all the symptoms I had and learned about. Test results came back, that yes, it was bad and it had spread into my pelvis. He sent me to Fox Chase Cancer Center in Philadelphia. I live in Southern Shore area in NJ. Went to FCCC and had a consultation with an Oncologist there . That's were the bomb was dropped on us, that I had Stage 4 prostate cancer . We asked about life expectancy, and he said 50% of people like me could have 4 1/2 years of life and 50% of people make it longer......WOW,

His plan was for me to start chemo within the week . He pretty much said that's about the only thing I could do, I said NO I don"t want to do chemo, for many reasons of my own. He set me up with an Oncologist in my area to see. I went to see him, and he explained to us that my cancer was aggressive and we had to hammer it hard to extend my life as long as possible. He told us that in Newer trials , they found that giving a person of my age ( Kinda young for advanced cancer and pretty healthy) Megadoses of Taxotere from the start to the finish of them, the have gotten very good results. I did 10 rounds at 174 ML over 90 minutes every 21 days and he started 0n Bicalutamide and also Prednisone. I also got the Neulasta on arm at every round. I completed my 10th round of chemo Sept 13 2016. My PSA is undetectable 0.1 . I also get once a month a shot of Xgeva and Lupron. Ill be getting these till I guess they stop working. Whats next???? when it stops How would you guys PLAN your life after what I already completed? I understand, that some treatments should, or should NOT come before one or the other, I worry If I,m heading for long life or not.

I also have been taking 5mg percocets 4 times a day to help with my bone pain and body aches, I'm at a point now where bending over, squatting etc is more painful all the time My feet kill me as walking on them is very painful, I work on a construction site. Like to hear what others are taking for pain meds and may help me. I go for my 2 injections this thursday.

Thanks in advance Eric

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  • The Stampede trial in the uk found the treatment you received was effective in treating prostate cancer and extending life.

    thelancet.com/pdfs/journals...

    I was diagnosed with stage 4 in November 2015 and was totally in shock, and still am.

    My oncologist steered me to radiation therapy. However, I feel they should have counseled me to talk with medical oncology and taxotere (docetaxel). You oncologist seems to be right on track.

    Read reliable sites like this one to read of patients who have lived 15 or 20 years after diagnosis.

    Best wishes

  • Thank you Russell, I did hear that the trial reports were from different countries Also It's now finally sinking in that, Hey, I'm no longer the same Eric as I was before, AND also me passing on and having to"setting my family UP " I wish you luck on your journey!

  • Eric, will tramadol handle your pain? If Lupron begins to fail, Zytiga or Xtandi might be a reasonable next step. Have you considered seeing an oncologist at Penn?

  • Thank you Yost , I don't know what Tramadol is, but I'm going to find out. I have not thought about Penn yet. I'm only off chemo for about 2 1/2 months and I do feel comfortable with my Oncologist . .....so far. Would you care to give me the additional benefits of me traveling 2 1/2 hours one way to see a Dr. there? Also, I don't know if my insurance would cover me. I would have to find that out 1st.

  • I thought Philly was closer to you. I was thinking about research docs who are on the cutting edge, and I thought maybe you were not happy with your doc. It sounds like your treatment is where it needs to be, but if ADT begins to fail, you do have options.

  • When I went to Fox Chase, They hooked me up with My oncologist In Toms River, that is about 40 minutes away from me, He's connected with Fox Chase. He has some impressive credentials, and yes, I'm pleased with him....so far. If I wasn't , I would take the ride to Penn, especially if things take a bad turn. I like options! Im one of those guys, that only ever went to the doctor when near death IE, not a lot. I guess mostly cause I'm was pretty healthy and never had any injuries, so I'm pretty new to the whole doctors, specialist, testing procedures as well .

    BUT, I'm a fast learner, and I am learning a lot, and quickly!

  • Hi Eric

    First let me say that I am sorry to hear about your situation.

    It sounds like the problem with your feet is likely peripheral neuropathy induced by the Chemotherapy. There are a couple of medications you can try to help with that pain. The first is cymbalta and the second is Lyrica ask you oncologist.

    You should also ask about being referred to a radiation oncologist to see if some palliative radiation can help relieve the bone pain in your back and pelvis.

    I am not an expert only a patient who has peripheral neuropathy and has had palliative radiation for pain.

    Best wishes

    Bill Manning

  • Bill, yes I do have the Neuropathy pretty severe, Like I said, it's killing me so much now. I will ask him tomorrow about those drugs. I need something, cause I'm on my feet all day. i had talked to him before on several occasions, and he suggested Radiation, I understand that it would kill the cancer cells and cut down on the pain.....but I do not want any radiation treatment that goes along with it, Sorry, but I have 1 nasty cancer, I really don't want to get a second cancer from "A cancer treatment". That's how I think about radiation. A Lot of my parts are not working anymore, and, I don't need anymore!!!

    I hope it helped you Bill, and you had/have a good experience with it. it just really scares me.

  • I recommend you look into gabapentin (neurontin) for peripheral neuropathy. All drugs have side effects, but Lyrica and Cymbalta are two drugs that seem to have more side effects than one needs to deal with. My husband takes gabapentin for chemo-induced neuropathy and has had excellent results.

  • Thanks Casa, I did ask about those on my visit.

  • esmitee, check into PROTON radiation instead of PHOTON. They have better control of the PROTON and it doesn't destroy the surrounding tissue as does PHOTON and it doesn't go all the way through. They can pinpoint the cancer. I was diagnosed with PC April 2015 and went to the Provision Proton treatment center in Knoxville, TN. Had 39 radiation treatments and 12 months later PSA was .35. Go back in Feb for 18 months check-up. No side effects and no other treatments.

  • Thanks Dirt fisher, the radiation scares me. Although, I would choose the PROTON over the photon. I'm going to try all avenues before I consider radiation. I hope you get great news and results in Feb.

  • I would encourage you to find a good pain management group. Oncologists are trained to treat cancer but usually do not have extensive training in pain management. You might also want to ask pain management Dr. if they are treating other cancer patients.

  • Thanks Bob, I just seen my Doc, we changed my meds. I'll see if they help, if not, I'll have no choice but to go to a pain Dr.

  • Hi esmitee: Wow dude, U R taking a basket full of meds. How about side effects thereof? Seems like some neuropathy is already on the scene. I admire your courage and stamina for the drug regime U R on. How goes the quality of life concerns? Sometimes the cure is worse than the disease. I respect your perseverance and willingness to face your situation head on. Must be that Jersey salt water washing over your body when swimming in the Atlantic. I concur with the fella that mentioned a pain control regimen. Medical weed is legal in New Jersey. Docrok

  • Is it? Was the south Jersey dispensary ever opened? Or, any of them for that matter? Legal my a--!

    Joe

  • Im pretty sure there is one in Pleasantville . or close by there

  • Hia Docrok, I forgot to add ( not PC related) I also take Metformin, Metoprolol, Irbesartan and zolp idem, and a slew of organic supplements including bitter apricots kernels . lol

    Side affects are really hard to tell what does what. What I do know is, I collapse when I get home. I'm extremely exhausted. It's just 1 year now that I started this journey . My quality of life has changed . The 10 rounds of chemo was not very pleasant, especially when you have to work everyday. The only day I missed from work, we're the days of my chemo. I have no choice, plus I pay for my own health insurance.

    I work right on the Atlantic ocean every day! so who knows. lol

    I' d rather smoke some pot, than pop any more pills if it helped me?

    I am going to look into it.

  • Eric,

    Welcome to this group. You are now in good hands.

    First, the doctors comments that 50% indicated that 50% of men are dead in under 5 years is unrelated to you. You are not a statistic, you are one man. Statistics are group trends, they do NOTHING to predict an individual's results.

    Second, It is simply NOT true that after the chemotherapy there are not good available additional treatments that can extend your life. There are a number of new treatments, like Zytiga, Xtandi, Xofigo and Jevtana all that can be pain palliative and all that DO extend life.

    Third, As you continue to live your life it is not unreasonable to assume that over the next few years there will be some additional drugs to be added to the list I gave you in the second point.

    Fourth, as mentioned by Russell, the "early" chemotherapy protocol you are on is the correct first treatment for you. Yes, I said FIRST treatment.

    Fifth, in your list of drugs you are taking you did not mention anything like Trelstar, Lupron or degarelix . You need to be on one of these drugs. Ask the oncologist about that now.

    Sixth, as far as planning your life, we all should be living our life in the today, not in the yesterday or in the future. Yesterday has happened and is gone forever, tomorrow may or may not happen (any of us can die this afternoon in a gas explosion, a car crash etc.). So life for today. As far as having your life in order, everybody in the universe should have that as a goal, no matter if you have cancer or not because as I mentioned life is unpredictable.

    Seventh, find a support group. Malecare has a face to face group for men with metastatic prostate cancer that meets in Union Square (Manhattan, NY) every third Thursday. Join us, it will be worth your travel time once a month.

    Eighth, for pain I we have a number of men in the support group who very successfully use medical marijuana. Consider it so that you might cut back on the opiates.

    Ninth, read the advanced prostate cancer blog at advancedprostatecancer.net. Besides just reading it search for early chemotherapy and you will read about the chemotherapy you are doing.

    Tenth, get more involved in your own personal medical care.This means getting copies of every test you have had and get in the future and read them. Understand them and do not rely only on your doctor. Take responsibility for your medical decisions, you have the most investment in these decisions, so participate and control them. This means that you need to learn as much as possible about this disease, so educate your self. Besides the advanced prostate cancer blog go to the pod casts (Prostate Cancer Pod Casts) on itunes and listen to them, especially listen to the one on making a personal health log.

    Joel

  • he did say lupron

  • Hia Joel, thank you. I agree with being in good hands with all the honesy here, and real life posts. I wang and need the real truths about my life changing sickness.

    Im over the 50/50 comment, but to be honest, I think about it everyday.

    I am aware that this is only my 1st step of my long walk ahead ,but I need to and WILL take direction of my treatments the way I want to. I will make the ultimate decisions.

    I trusted my Dr. With the chemo plan, but I made sure through research, that it was the thing to start with. I always want to challenge him with many questions. And , belive me, I do.

    He just changed my pain meds to oxycotain 10 mg 2 times a day and told me to use the 5 mg Percocets as needed. Im going to try them for a month and see how it goes. I really do not want to become dependent on them. Pot is natural,

  • Welcome Eric, your story somewhat reflects my own, but still different in it's own way. They always are. I would follow all of Joel's suggestion's, rules. It's the best you'll get.

    If you can, stick with Fox Chase. I should have. Miles don't matter now. If you decide that distance matters, choose carefully. Don't do what I did and get complacent. I've met a lot of Urologist's and a few Oncologist's, and all are not equal. Some are quite stupid (mine). No time to read the reports, how lame.

    Good Luck, there's not much out there for us in South Jersey. I say that knowing the largest group here was the lame duck bunch. There's a group out of Somers Point, that is very good. Very patient oriented.

    Good Luck, Joe

  • Thank you Joe, I'm in Little Egg Harbor, a little south of Long Beach island, where you from?

    I really like my Oncologist , I pop quiz him everytime I see him, he remembers everything I say and or Said, that inpresses me. He snaps out answers to all of my questions.

    This past visit for my injections, We talked about a few of my posted concerns , and I suggested to him about the Radium 223 treatment, and he said, thats a great idea, and is going to set me up to get that treatment. I go to Toms River to 1 of his offices. He is connected to the Fox Chase cancer center, They connected me with him.I go to Sommers Point for the body scans at AMI.

  • Seems like you are sort of ok. Your PSA is below .2, so you may have no cancer that has become resistant to treatment. You are mPC not mCRPC. Your mets are not growing, and not likely to start growing. I wondered about the bone pain with no active mets, but someone identified nerve damage. Right right. The nerves are complaining even though there is nothing to complain about. I don't know what the answer is, but some pain guy must certainly have a few ideas. They do radiate to kill the nerves. Not sure that that is for you. I dont think they use protons to kill nerves, so that idea is not so good.

    You are ok for a while it looks like. Take a breather, but do join a group, and watch some videos online, There are quite a few inspiring doctors who are determined to find an answer, and really can't stand that some patients get less than the best care.

    Welcome to the club.

  • Hia Martin and thank you. I cant take a breather just yet, I wish I could. Im allways reading and still watch every educational video I can about pc. I need to know everything about this cancer, so I know how to keep it in check. That how I found this site, and asking questions too.

    How would you know if Im mPC or mCRPC, and if my mets are growing? Is it just your educated quess, or are you also a Dr. ?

  • I said you were mPC rather that mCRPC, because your PSA is so low. To be "castrate resistant" your PSA has to rise after castration (or while on Lupron). I see you also have taken Casodex, which could lower your PSA even if you are castrate resistant, so I made a mistake.

    If you have mets, you are metastatic. They do not need to be growing. You said that you had them. I suppose that they could all go away. I don't know if that would count as not being metastatic, since the typical bone scans only sees mets of an inch or more, so once they get smaller, you cant really tell if they are there or not.

  • Thanks for the clarity, because this is all NEW to me and Im trying to learn as much as I can, as fast as I can, That's why I came to this site. Because it seems to me, everybody on this site is very knowledgeable from your own direct experiences, IE: the truth! I like that. Yes, I had 2 full body scans so far that shows the mets are in my pelvis. I'm pretty sure I would be mCRPC from the reports that I read a while ago, I'm going to read them over again to be sure of the classification I'm in. I see its very important to know all of this to pull the proper information to follow along here and educate my self. Thanks again

  • castration resistant. what castration means in this context is "if you have very low testosterone". what "resistant" means in this context is that the cancer cells are still awake and active despite the fact that you are in a castrate state. In a castrate state (low sex hormone), your prostate (a sex organ) is supposed to be not turned on. If it is turned on even when you are in a castrate state, that is known as castrate resistant prostate cancer.

    Your cancer seems to be turned off, but you are in a "super castrate" state. Not only is your testosterone low, but you are taking a drug that interferes with DHT production. So if you were only in a "castrate" state, the cancer might wake up. You could find out by stopping the casodex, but why find out, except if your doctor wants to see if you are taking a drug that you do not need to take.

  • Oh, I sad that your mets are not growing because your PSA is not rising. While not all prostate cancer cells generate PSA, if the cancer IS growing, it looks like it is not growing very much - because I would expect to see a rise in the PSA.

    I was just saying that, overall, your cancer seems to be quiet at the moment, and also responding to treatment.

  • Yes, I'm told, because I asked him directly if I was considered to be in remission , and he said I was YEAAAAAA

  • Do you think the pain is shingles? I hear that that can be bad....

  • I really don't know if its shingles. I'm under the understanding that my bone pain is from the cancer in my pelvis and lower back, Plus from the Lupron and maybe from the Neulasta infusions I had for the 10 rounds of chemo? I'm going to try the radium 223 next month because from what I read, It will do the same job as Lupron but with out the Lupron side affects? Time will tell I hope

  • "same job"... That is not too accurate a way to think of it.

    Radium 223 is in the "radiation" class of treatments, whereas lupron is in the "hormone" class of treatments. You must know this....

    Radium works by smashing the cells with alpha particles (helium ions). It's like a hammer to the brains of the prostate cancer cells that are in the bones. Lupron tries to put all prostate cells to sleep, where ever they are, by suppressing testosterone production of the testes.

    Shingles is nerve damage. The nerves are complaining about damage to themselves. With bone mets, the nerves are complaining about damage to the bones.

    You would not treat the pain from Neulasta with radium. Neulasta gives your "growing pains" like kids have as teenagers. You might take a pain killer for that kind of pain - you wouldn't go try to kill the bone - you would reassure the nerves that everything is ok.

    The pain in shingles is in the legs. feet. It's not shingles.

  • Eric welcome---Read Joel our Administrators reply--he says it just about all. If you cannot get Medical Marijuana to get rid of the opiates---You might consider HealthyHempOils'--Gold Hemp Extract--does a good job with Aleve, Gabapentin, or Tylenol Arthritis Formula.

    Another thing to get ahead of--is getting Gene Mapped using Foundation One--find them on the Web and call. See if you should be Gene Mapped--I think everyone should if they are in advanced stages. Insurances pays some of it, Medicare all of it. Once they find the Genes that have Mutated, you get a list of Drugs that are being used against your mutations world wide, and where Clinical trials are---and they do not have to necessarily be FDA Approved. If you live in a right to use State like I do[North Carolina] we have a right to use any drug if ordered by a Doctor, regardless of its standing with the FDA. You can then move to the Tapur Site on the Web and read how that works to provide free drugs once you have been Gene Mapped.

    Almost 90% of the Clinical trials today are in Immunology--and they want to know your mutations, to see if you qualify. So I have been mapped, I know my Mutations, I know what drugs are out there experimentally having some success, and I know where the Clinical trials are.

    The good thing for me, is I do not need this yet, and maybe never, as I am undetectable also as to PSA, and I believe my Drug Program and Supplemental Program, are working fine. Yep, I just took 2 Tylenol before writing here, as I just got back from the Gym, lifting weights and still bodybuilding [Maintaining Pre DX]. By the way one thing Joel left out--get a good workout program, and maintain it--if you need, get a trainer, to start you--Believe me a workout and some Hemp Oil before sleep, and I am good to go. Wish you Luck, better yet, I pray God Smiles down upon you with Mercy and Grace. Prayer does help.

    Nalakrats

  • Hia Nalakrats and thank You. Do I just ask my Oncologist for the medical Marijuana , or do I just look for a doctor that specializes in that? Id rather use NATURE than some big pharma synthetics, that can do more harm than good in the long run. I also use a lot of organic and natural supplements and Im a juicer aswell. I eat about 30 or more bitter apricot kernels a day. I know all about the controversy over that, but I figure its a chance I should take. I really didnt want to do the chemotherapy because it is also poisioning me at the same time it helping me.

    I will check out the foundation you suggest. I belive that that is the way to go about treating an INDIVIDUAL . I am an individual , Im not exactly like the other 4000 men that taxotere worked on. Im Me.

    Apparently , the taxotere did do something other than taking my head of hair and all other body hair out, changing my skin, almost loosing my fingernails, mouth sores, and the list goes on. Although, it did lower my psa. But I feel it was a large price to pay, if other options would have done the same? Don't get me wrong, Im greatfull it halted it. God bless you brother!

  • Some people put a bag of frozen vegetables on their head to lessen the hair loss, and put their hands in ice water to help with the nails. I was not offered that, and it looks like you were not either. Unfortunate.

  • Well, I had kinda salt and pepper hair, and really was not balding, maybe a receding forehead and about about 4 weeks after my 1st round, I found that I could pull my hair out. I wear a buzz cut and it was only 1/4" not to long after that it was going like crazy, forehead got bald but I never lost every hair on my head Just got to look like a shadow of now White hair. My Doc said he was surprised I still had any hair on my head. I wasn't a real hairy person on my body, But that's still all gone, although My head hair came back and getting thicker but now is a white/silver color, LOL Better than nothing. No one told me of the bag on the head thing either. Or the cold water for my nails. Nails are slowly getting better but are very very hard, And each nail has ridges on them. I think I counted 10 ridges on each nail, I think each ridge was a round of chemo, I got 10 rounds.....Go figure

  • Most treatment is individualized, in that the doctor gives you what he thinks will work best for YOU. And that is the way it will always be.

  • As to Medical M. There are now I believe 7 new States that approved it. I live in N.C. So it is illegal here, and I use Hemp Oil--now when talking to Medical M. facilities in California, I spoke to Medical Technicians that provide Medical M. for Prostate Cancer Patients. They were quite knowledgeable, and recommended a combination of M. plus Hemp Oil. But I could not obtain--we just talked.

    Now I go to Florida for the Winter, and Florida approved Medical M. use starting Jan. 1st. So I see my Doctor next week, and will ask him if he can write a script for it. He usually gives me anything I want to try, but if he has never written one for Medical M. and his script may not be good in Florida--As I might need a Florida Doctor. He will know who to send me to--So I do expect to be able to add the M to my Hemp Oil. I do not smoke, so I would decarboxylate the M in the oven at 220 degrees for 30 minutes and then bake it into cookies or a brownie mix. Would prefer Cannabis oil to go with my Hemp oil.

    What State do you live in?? If it is one where it is legal or legal for Medical purposes, I am sure you should be able to find a Doc. or hopefully your Onc. could write you a script. The other way to go is to travel to a state where it is legal and just buy it. The benefits of offsetting the affects of the drugs and if you are doing Chemo is Quite good. But I would not inhale it. And if you can get Cannabis Oil, that is the best for what we are trying to do.

    Nalakrats

  • Nalakrats,

    Do you know if Foundation One will update the information as new gene mutations are discovered?

    Joel

  • Joel, I do not think it works like that. When they look at all 310 Genes and define the Mutations you have, I do not believe you then get other Mutations later down the journey of Pca. But, you bring up a point, that one of the Geneticists can answer. As the one Dr. who called me, when I asked for information did explain that Chemo, can cause the AR-V7 to switch off and on. But that is a Gene Spice, and not a whole Gene. Can Chemo create more mutations???? Maybe!

    What Foundation One does update, is any new drugs around the world, either FDA approved or not, that are being used to treat the Mutations you have. Also updated are Clinical Trials you Qualify for, based on your particular Mutations. Any time you personally want an update you can call their 800 number, and give them your account number, and they will look up and e-mail back any information they find.

    Lets take my case where my Mutations are Brca-2 and Pten. I will just use the first one. They identified Olaparib as being used in trials and gave me the success rates, of PSA reduction, remissions etc. and that the drug was approved for Breast Cancer by the FDA, but not for Pca. So if I ever need the drug, I have 2 choices enter a trial, or get the Drug to use off label. Now if it is costly and Medicare will not pay for it. I have a right to use it for I am in a Right to use State--N.C. But to go around the costs I would have my Doctor Register me with Tapur. And they will provide the Drug for free.

    I gave you a little more than you asked for but Foundation One is a two way street on all updates related to Mutations and the Drugs, and Clinical Trials.

    Nalakrats

  • Nalakrats,

    Thanks for the information. The longer term problem I see is that as genetic research progresses there are additional gene mutations being identified as having a relationship with prostate cancer. We are now only in the younger stage of identifying the significant mutations. Additionally, as newer drugs come into the market we will probably find that there are additional, not yet identified mutations that play a role of some sort.

    This is not to underplay the importance of Foundation One, just expressing a concern that as genetic research progress we might want to resubmit for additional analysis.

    Joel

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