How long have you been fighting prostate cancer and what stage are you?
I'm stage 4 going on 10 years being treated at City of Hope.
How long : How long have you been... - Advanced Prostate...
How long
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pcfred
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Stage 4, 17 years.
in reply to tango65
Amazing17 Years ! My hat off to you sir.
Stage #4 ,four years in ..whooo hooo .lucky to be here...😂
16 years. Stage 3.
Stage 4, only 7 months in but feeling great!
27 years, stage 4
Wow that's fantastic, hope my husband who is also stage 4, can get that long.
that is just amazing!
and inspiring!
in reply to Magnus1964
Wow! Fantastic.. how i wish my husband can get that long🙏🙏🙏🙏
I am 13 years on ADT but Zytiga has failed recently. Can you say what you attribute to your long remission. Is diet or your particular protocol. Please share your thouhghts.
I believe becoming a vegetarian days after diagnosis is a big factor. Some how I got it in my head that domestic animals fed hormones to make them grow bigger, fatter, faster can not be good for a hormone fueled cancer.
Second, a doctor (gp) finding that I had Pca asked if I had my vitamin D3 level tested. So I did some research and found that the D3 level of cancer patients is low. So I have been taking a vitamin D3 supplement for years.
Third, much to the opposition of some on this website I have been taking a long list of supplements, i.e. vitamin E + selenium, IP6, Easiac tea, etc. Remember, just as Pca becomes resistant to ADT drugs, I believe it also becomes resistant to supplements.
I have been on two clinical trials, one with zytiga and the other with xtandi (still on this one). I got 3+ years out of each.
My advice is do your own research on conventional and alternative medicines. Do what feels right for you.
Good hunting and long life.
3 years on zytiga? Do you have any advice how to get that long on that drug? Husband started in October and is doing well but I didn’t think you could get 3 years!?? He’s on 7.5 prednisone too
Keep up his vitamin D3 level. I take 1000 i.u. per day.
Hi Magnus. Congrats, first of all. A question for you and the other long term survivors, what was your stage and Gleason score at diagnosis?
I was stage 4 right out of the gate. Positive lymph nodes out side of the prostate.
Any distant mets?
Bone mets in the pelvic area, salvage radiation. Nodules in my lungs, took Provenge for those.
Then congrats again, you've had a long and successful fight of it.
27 years?.......at stage 4?.....Mets that long?
Distant mets did not show up till much later. Bone mets and lung nodules both appeared within the last 6 years.
Stage 4 , 5 years and 11 months
6 months but aiming to beat Magnus1964s record of 27 years
Me too, but since I'll be 73 in about 23 days that's unlikely.. I'd be delighted with 18 like my father did.
Diagnosed Gleason 9 eleven years ago. Stage 4 for 8 years. PSA 1000 now and doubling every 5 weeks. This can't go on forever....Treatments don't work anymore..
That was a ❤️, not a "like."
Hallo Fairwind
Have you tried a peroxide. Since treatment doesn't work for you anymore. I mean, what do you have to loose. You're loosing your life as it is. Read up everything you can about artemether. I gave this advice to other members, some used oth didn't. I personally have chewed well over 2000 Coartem malaria tablets, with oil like cod liver oil. The black spot on the pelvis is totally gone, three MRI's in a row couldn't found any metastasized anymore. It works very well as a second line treatment with ADT. Ok, I admit, this is only my fourth year. And I did threw a lot of supplements and good diet down my throat. At the moment I am on a generic Casodex 100 mg. PSA stable under 0.03. Good luck to everybody out there.
How about immune therapy?
Genetic test rules out immunotherapy.. Tried for Provenge but they said I was to far gone for that, chemo would work better..I'm trying to to get into the "Vision" trial, lots of hoops to jump through. If no Vision, then move on to R-223....or DIY BAT..
what about Panacur….seems to work for some guys
Yes! My husband is starting week 3 tomorrow. Next PSA in a week so we'll have more data then. But go on Joe Tippen's Facebook group and you'll find many there with APCa doing very well.
in reply to HOPEFULSPOUSE
Hope it works, but Tippen had also Keytruda at the same time!
HOPEFULSPOUSE in reply to
Interesting! My husband is also getting chemo - jevtana - once every three weeks - and we found info about a NIH trial showing that fenben makes taxanes more effective against PCa cell lines. So - fingers crossed. We're throwing everything and the kitchen sink!
Not working with Eshagian anymore? We are at Weill Cornell with Dr Tagawa. Doing great but would love to hear about your husbands journey
Can you please site the trial which is using Jevtana and Fenben.
Hope it works for you can u post the psa results on the next trest happy healing everyone
Gus, Has it worked for PCa?
Those posting stage 4 more than 5 years ago, were you diagnosed stage 4 or have you progressed to stage 4 over those years?
I would also ask have you experienced pain over those years and for how long. I'm in a lot of pain, I cannot imagine living 7-10 years with this level of pain
Diagnosed last Nov, Stage 4 Gleason 9 (whole skeleton has Mets)
I started with stage 4 and the cancer had spread from the prostate, plus I have an aggressive form of prostate cancer. It also has spread to the bone in a few areas, I had to do radiation in those areas. So far I haven't been given a TTL (time to live) but regardless I try and enjoy every day and give thanks to God for every sunrise.
I'm new. Been diagnosed with severe prostate cancer with Gleason of 9 over whole prostate. Did the bone scan but not the CT scan yet.. all bones are still free. But Dr only says we really need the CT to start treatment.
Does it usually hit organs first? Also are the frequent urination and unemptied bladder and bowels a forever thing?
Good if no bone involvement. As for bladder, consider transurethral resection of prostate .This will open your urinary stream.
I agree with Hirsch. I had a TURP a year and a half ago and it worked wonders. Your bladder and bowel movement problems are linked. A full bladder makes bowel movements difficult and vice versa. When I had severe constipation a few months ago on the TRITON II study I needed to have a Foley catheter in order to pee. An enema took care of both problems (I would have hated to have to clean up that ER) and senokot and prune juice prevented recurrence.
If they will take the prostate let them. Kill the host whenever possible. Usually goes to the lymph nods then bones. Good luck
Hi Zetabow
Your comment on pain, prompted my response, I'm!in UK and I'm stage 4, cancer in lymph nodes, and lots of bone mets, which was diagnosed 16 months ago having had ORIGINAL PC Diagnosis 6.5 years ago. just had radiotherapy for aggressive met on spine. I have ha huge pain, especially during first 14 days of RT. But with help from pain management team via my hospice I have have Ben able to get on top of pain. Pregabalin and Zomorph, slow release, 12 hourly tablets with Oramorph for breakthrough. Do you not have access to such service?
I'm from UK but living in Estonia. I'm waiting for an appointment to see a pain specialist. I have pain in Ribs and initially both Femurs where the bone marrow was extensively impacted, I had some relief from Chemo although the pain in Ribs never really went away, it been 4 weeks since I completed Chemo and the pain in the Femurs is slowly increasing. Last week I started usin CBD oil but I hear it can take up to a month to kick in, at least it's help reduce the anxiety.
I think you cannot use stage 4 as the only prognostic factor. According to this chart
cancerstaging.org/reference...
there are three situations which put you into this category:
a) no mets, but tumor invades adjacent structures
b) lymph node mets in the pelvis (N1 or regional)
c) distant mets (M1 e.g. bone mets)
As you can see from the image below, just c) has a poor prognosis according to SEER data.
Source: cancer.org/content/dam/canc...
At 56 I'm in that 23% and not much high hopes for the statistical 5 years (Doc said from the scan and his experience he gave me around 44 months last year). So far I've had great result on the Chemo so keeping fingers crossed that nothing bad happens to set me back, a least for now because of those good Chemo results I feel I can beat that 44 months. However it plays out, I'll give my best shot at fighting it.
The good news for those in the (c) category today is that they are almost surely better off now than they were when patients were diagnosed and treated during this study, as the treatments have without question become more effective. And the treatments in this particular field are getting better all the time.
You are right, the patients were observed up to 2011. Now the recommendation is to add Docetaxel or Zytiga when starting ADT which extends overall survival. Plus we have Lu177/Actinium 225 and Xofigo now. However, you have to make sure you get these treatments, the Uro in your neighborhood may not be aware of these.
Hubby is G9, bony mets everywhere but no lymph/visceral, 2 months.
Stage 4, 3 and a half years.
Gleason 9, T3-T4, 2 years into diagnosed condition. Painful neuropathy and some other associated side effects. But glad to be anywhere other than the Great Void.
Diagnosed Aug 13. Confirmed in Dec 13, Gl 4+5, T3-T4 spread to L5.
Stage 4 for 3 years. Gleason 9. The 4 Mets are down to 1 and psa is less than 0.01.
Great to hear.... what therapy? I dont want radiation everyday for 8 weeks. But have a 2 year old son and 6 year old son. I'm 51. What should I do?
in reply to Bab52413
Radiation is a no brainer. If that will help you it’s 20 minutes a day for 39 days. Sounds like you need to consult a cancer only facility to get a plan for you. Get to Houston,Mayo Clinic or any other big hospital that specializes in cancer. Lots of them out there.
I've had radiation 3 times and it has helped 3 times. No big deal, they target and pinpoint a specific area now, not like the old days when large areas got it to.
Like Nike "just do it".
Have had radiation, chemotherapy and am on ADT. Radiation wasn’t a problem really, except for having to have a full bladder and empty bowel each time!! Seem to have recovered from these therapies well with continuing exercise and diet. Still some side effects but nothing I can’t live with. Maybe the sunshine here in South Australia has helped me (except we are into autumn/ winter now but the sun is shining today) ! Best wishes for a good outcome for you.
in reply to Bab52413
What do you do? You fight! I am 53 and have 4 children so going to radiation for 40 days to extend my time with them took about .00001 seconds to think about.
Diagnosed stage 4. TTL 1-4 years. Currently at 1.5 years.
Hi, I am stage 4 and Gleason 9. I was diagnosed June 5, 2015, and the doctors now told me there is no more treatment, and my life expectancy is a few months. Especially the last 8 months were tough with 9 weeks of hospital stays.
I'll keep you in my prayers Molman.
Praying for you my Brother.
Praying for you, don't give up!
I'll pray that the creator and sustainer of life will uphold you by the power of his infinite love.
Another morning in Mol, Belgium. After 30C yesterday we had rain and thunder, which makes for a cooler day. Thanks for your replies Jamtu and Cosette. I am not religious, so I cannot use that handle to hang onto, but for me pain management is important. I take Mephenon 2xpd, Durogesic, 125mcrogr. Every 2 days, Oxinorm and MM Direct against flare pains, so if and when required. My biggest problem is a swelling of cover of my brain, which causes my face to be numb. So eating and drinking is difficult and frustrating, as I bite myself, when I eat. I can still drive, but not far anymore. Just to the shops nearby. So the TV has become a faithful companion. My wife and I start each day on a positive note, and we do have quite a few nice days. Thanks all for caring.
So sorry to hear....are you in a lot of pain..how do you fill your days, or can you still get up and out? I wish you strength and hope you still have some good moments...what a f...shit this cancer is...
Keep searching for alternatives! Wishing you the very best which includes many more pain free days!
Thank you Bruce. Wishing you strength too
Stage 4 with a few bone and lymph node mets. Gleason 9. Diagnosed a year ago at age 55. Feeling good. No pain so far. PSA steady around 0.25.
Dad was first diagnosed in 2010, T2 Gleason 7. He had a radical prostatectomy and no further treatment until a rise in PSA and spine met had him diagnosed 4 months ago with Stage 4. How long? He’s only 67 with a full life so he needs to be around to be an old old man.
Diagnosed 8 years ago. Did focal chryo. Diagnosed stage 4 two years ago with 3 bone mets. Chemo/SBRT/Lupron/Zytega. PSA now .01 and just started a “vacation”. Amazed at the kindness, knowledge , bravery and love shown on this site. I would never go to a group meeting but here? It feels safe and warm. God bless all of you in yours and your families battle with this disease.
Schwah.
Hi 5 years now stage IV hopefully we will see it on next scan and can directly attack it. Ian
pcfred, COH is where I am being treated by Dr. Stein. Would love to meet you and have lunch or coffee or just talk. I live in Simi Valley.
I'm being treated by Dr. Pal. My next appointment for the doc and infusion is June 5th then June 26th. I'm coming from Riverside to Duarte.
I'm at Stage 4, and have bone mets but soft tissue mets much reduced, Psa > 4, diagnosed Dec 2009, at 62, low Psa but inoperable, so Pca probably began 5 years earlier, so I guess that makes my survival about 14 years. Maximum Psa since treatment began in April 2010 was 50 in 2018, but that lasted only a week or two before yet another treatment was applied. I'll soon be 72, outliving my dad and one sister by 12 years. But mum lived to 98, never had any cancers, other sister survived Brca.
Cold here now, getting frosts here nearly every night, but the days are sunny mostly. Rain predicted tomorrow, and two doctors to see next week, plus a blood test, one doc in week after, so lots of doctoring going on for me. Its all good. Have not been told to get my affairs in order, youse av only 6 months - yet. See wot appens.
Patrick Turner.
Keep fighting my friend. Love the positive. It gives me hope for my children. They are 2.6.24.28.32.33.
Hasn't spread to the bones but havent done the CT scan yet so dont know about the organs.
You are an inspiring contributor..I look forward to your writings. From what part of Australia are you?
I live in Canberra, a small city of 440,000 ppl about 300km south west of Sydney on east coast Oz, in state of New South Wales.
My city and surrounding area is like a small state, and has its own little Govt, but it is a Federal Territory, and is our nation's National Capitol where National Govt is located. I have bullshit deflector screens to stop the bad airs from Parliament House drifting over my house. Its the coldest big city in Oz in winter, but it has features which I quite like, and not everyone is associated with Govt. I was a builder here, then changed to be electronics repair man. Nice clean cool air, good countryside close by, not too many ppl.
Winter has just begun, and frosts at night will last 'til September.
Keep well if possible,
Patrick Turner.
Thanks for your bio. Your writings are candid and vivid. I have visited Oz 3 times from my home in Texas Never made it to Canberra. Just Sydney and Melbourne and Queensland
I had a close friend in Cogee who left us too soon from melanoma.
Best regards to you
H
Canberra is known amoung young folks to be The Most Boring joint in the world. No beaches and cold in winter. But that's good, many of us don't like all these folks coming here to make this joint all crowded and congested like Sydney or Melbourne. I can driving by grassy paddocks with cattle grazing in under 3 minutes. Hardly any cars compared to elsewhere. Great place to stay fit and ride a bicycle. I grew up in Sydney, but was glad to emigrate to here, in 1973.
Hospitals are fair, but for top specialists I go to Sydney, a lazy train ride. So, all things considered, I like where I am, and I never needed to keep running about from one city to the next, like so many I met here.
Anyway, seeing lots of docs and having scans these few weeks....
Hoo Noze what they find, but I ain't scared.
Keep your sense of wonderment and humour; if these are lost, you are un-living already,
Patrick Turner.
My husband almost 1 year, stage 4 with PSA 1000+, he is doing great with the hormone therapy, after 3 months of treatment he's PSA went down to 0.2. Always praying the longer life for him, im very scared specially when he got depressed and said he felted that he only live for three more years😭😭😭😭.. 🙏🙏🙏🙏🙏🙏
Cheers!
Jhaz
alangeorge in reply to
Hey Hey... Very similar DX to my own...
Listen when he says he has 3 yrs or a lot more to live he is right! but when he says he has only 3 years to live he is absolutely right!
He really needs to be telling his subconscious his body has defeated cancer. This is the only way to give himself a chance for more years. The mind maps out a picture and sends it to the brain, the brain then acts on that picture and delivers it to the body. This is how affirmations work. I know affirmations work as I have seen it work for so many people.
When you affirm what you want, you manifest what you need to make it happen.
I hope this makes sense and helps both of you :))
All the best for all of the future...
Alan
Dx 2006, Stage 2, Gleeson 7B.
Primary treatment was EBRT which failed. Slow rising PSA , Dx stage 4 with several pelvic node mets and spots in pelvic bones and ribs in 2014.
Currently doing well and still responding to Lupron.
61 years old,still running 3x week and working my own business as a Motor mechanic.
Best wishes,
Mark
13 years. My journey began in 2006. Stage 3, Gleason 9. First line of treatment Board been radiation, casodex, diet and life style changes. Now, stage 4, bone Mets.
My husband diagnosed 2001 T2 4a, Gleason 3+4=7, lung mets 2015.
Mayo Clinic told to get his affairs in order a long time ago and we are still working on that at age ~76 for him.
Stage 4 Gleason 9 PSA 0.1. 17 months now ADT and Zytiga- Eligard as only treatments. Provenge has started one week in now.
Dx stage 2 G7 last July 2018. Had RP in the Fall but had rising PSA right away after surgery. I don’t know if that moves me up to stage 3 or not.
THANK YOU FOR THE QUESTION. . ALL OF YOU GIVE ME HOPE. I KNOW THIS DISEASE CAN BE VERY RANDOM HOWEVER I CHOISE FAITH. THANK YOU AND KEEP THE SHARES COMING.
hello pcfred, writing re: my husband: Stage 4, 18 years.....(distant mets Stage 4)
RP in 2001,
salvage radiation 2003,
clinical trials,
currently on Lupron but with something new to be added probably at next appointment. Years ago he was one of two "exceptional responders" in a small clinical trial, but we do not know why......(and I wish we did) This, we believe, slowed the cancer down and has extended the prognosis he had had before that trial....
Wish I had some wisdom or advice.....can only say that I grew up thinking CANCER was an almost immediate death sentence and have struggled over the years trying to learn to live with the uncertainty and am not really skilled yet at dealing with the idea that CANCER can be a long term situation......
Obviously grateful that it is/has been a long term situation, however, it is stressful and confusing to live with a constant threat of uncertainty and the fear that creates....grateful but tired wife....
Try not to focus on "how long", look forward to each day as you did before the cancer. I worry more about the stress and worry my wife goes through than any thing else. She always tells me she's fine, don't worry about her but I know it can take it's toll on her and taking care of me can be a tough job at times, that's why I don't always tell her about the pain, the mental stress, and fatigue I go through but I think she knows anyway.
Dx: 2009. PSA 4.7. pT3bN0M0. Rx: RP, adjuvant EBRT, comb ADT, abiraterone, Lu177(4) in order. Oligomets: bone and soft tissue. Currently only ADT but doxetaxel likely soon, Who knows next....Rob
Husband diagnosed Feb 2018 stage 4 Gleason 10 spread to lymph nodes 5.9psa so low. Dr Mskcc Said when I asked ..my husband was 72 that average Male lives to be 80 but he wouldn't predicted 5 years. However that was before they found on the second gene mapping he has very rare mutation Msh2 and started keytruda, which stopped temporarily I hope bc of raised liver enzymes..no suspicious lesions on last MRI tho on liver. He is still working..
Hi, my husband Dx ten years ago stage 4 bone mets...PSA 563. Gleason score 9 .. He now has It In some LN. Just recently had many liver mets, chemo got rid of most and had radiation on the few that were left.
Feeling good other then fatigue. We are still going for the trial Lu-177, supposed be be helpful woth bone mets.
Best wishes...Never give up and never give in!
Lynn Pa.
Morning: diagnosed in Dec 2005. Am currently on Zytiga 1000mg, prednisone 5mg, and Lupron. 14 years fighting the dragon. Stage for now. Stabilized with no evidence of cancer. Being optimistic.
Stage 4 with Mets in spine, ribs and lymph nodes, diagnosed in August of 16. Going on 34 months so far.
Stg4 gleason9 distant lymph mets no bone mets. Diagnosed at 47 in 2010. Keep up the good fight!
Stage pt3b for three years, stage IV for three years. Doing fine.
I was diagnosed in 2013 at stage 4 with a Gleeson 9 and 27 PSA. I was put on Lupron injections every 4 months and responded well until the cancer figured how to get around it. They radiated my lumbar/sacral spine in 2014. I had blood in my urine but was told it wasn't the prostate cancer (wrong) and to contact my regular doctor. Meanwhile, my oncologist put me on Zytiga and prednisone. After being misdiagnosed and continuing to pee blood my PCP sent me to a urologist and the prostate tumor had punched through the wall of my bladder. My bladder capacity was 50% tumor and my PSA was shooting up and IMY
kidneys were shutting down.
Stage 4, 1 year 3 months. Tried almost everything, nothing seems to work 
Stage 4, 20 years. Summary of treatment in my profile.
Husband was Gleason 9 in 2014..5 yrs now..has had surgery..removed prostate, bladder, lymph nodes in 2017
All treatments have failed, psa 32 doubled in 2 months...has mets in spine and ribs...refuseing Ra223 and chemo. Standing on God's will.
I'm on immune therapy, if it doesn't work my next step is chemo which I'm really wrestling with whether to do or not, right now I'm leaning to "not".
Do it, its not half as bad as you think. If you are quite healthy you will get through it, like my husband.
I do hope the immunotherapy works for you...did not for my husband. He is not doing chemo as all the other treatments, radiation, xtandi, zytiga, Adt, surgeries...suppliments....really beat him up and he is not strong. He is at the place of " no more".
Praying for you!
Diagnosed stage 4 cancer free for 2 years.
Oh, initial PSA 16 in May of 2016, Met to L2, S2, and H6 bones. Gleason 9/10. No growth in Mets since then with Catscan and Bone scan every year.
stage 4 gleason 8 dx November 2014, still on firmagon and casodex
13 months in. Dx stage 4, gleason 8, bone mets, psa 356. 63 at Dx. living life traveling spoiling grand kids. My treatment has been Lupron , Zytiga, Predisone, Xgeva. Coming up on Medicare trying to find a part D that will cover most of Zytiga. God Bless and keep fighting pcfred
Don't know if my PC history is helpful but began treatment in 2004 at age 73 with surgery, later radiation, then ADT. Became castrate resistant in mid 2015. PSA 2.0 in January 2016, 5.7 October 2017. Continued Lupron. Casodex, Xtandi, Zytiga all failed to slow my PSA increase to 413 at the end of April 2019. Now age 88 have chosen to end all treatment except Xgeva and Lupron. My testosterone has been essentially zero for years. See no reason to continue Lupron. Scans show Mets in ribs, sacrum and other sites but so far they have caused little pain. Am Hoping my heart fails before they do. So, 15 years of PC and still have a decent quality of life. LCA
Stage 3 RP. Bladder repair..nothing else.19 years.
14 years, stage 4
A question. All of you who are responding to stage 4 prostate cancer..... are you saying that you were diagnosed with prostate cancer, had it treated and then found out that your cancer was OUTSIDE THE PROSTATE and now you are living with stage 4 prostate cancer, some of you as long as 17 years? Is this correct?
jrodrig in reply to
Yes. State IV is when the cancer is outside the prostate.
Diagnosed in 2011; stage 4 since 2016. Party on!
Stage 4A (T3cN1M0) diagonosed via needle biopsy in Nov 2011, RP in Jan 2012. UroOnc said they could not get everything, and that it is "particularly aggressive." Put on Elligard, then short "vacation" which I failed badly, put on Trelstar. PSA dropped below 0.01. Moved to be near some family (two of which have passed away) almost 4 years ago. Treated at Woodlands Specialty Clinic in Pensacola, FL, USA. Shortly after I arrived, they set up an Advanced Prostate Cancer center/group. They put me on Xtandi almost 2 years ago. So I am a little over 7.5 years in, still stage 4A, still PSA <0.1. Mets to 4 prostate bed lymph nodes. No real pain. No energy either, some depression, insomnia teamed with bad fatigue, muscle wasting like crazy. Planning on being around here for yet a while to come.
Marshall
Diagnosed with bone Mets 4.5 years ago. I went to the doc with bone pain and then discovered I had Stage 4 Prostate Cancer. Went through chemo (docetaxel) and am on intermittent luprolide. I do have bone pain and manage this with opiates. Life is good and I want to keep living it!
My husband is stage 4, Gleason 9 going on 15 years. BRCA2, Lynparza for the last year and a half. PSA 5.3 and climbing. Onc wants to start Radium 223 for bone metastasis. On Fentanyl 50 + Dilaudin for pain. Our family went to Italy and Greece last Summer. So happy we did. Couldn’t do it now, but still have hope things could change around.
Your husband's path sounds similar to my husband. Is he doing Xofigo? If so, I hope it's working well for him!
After SOC chemo (diagnosed St 4 mPC in Feb 2017 - w/ mets to entire skeletal system) , Lynparza + Zytiga was wonderful for over 1-1/2 ytears - we did a lot of traveling, including a trip to France. Then my husband 'crashed' within a couple days after our return, right after his Xgeva & Lupron shots. He suddenly had a LOT of joint pain coming/going, moving around his body. It started in his knees, which at first we thought perhaps from sitting for too long, cramped up, on the plane?? No doubt the long 21 hour travel time, being cramped up on a plane, being dehydrated (for many reasons, including walking close to 10 miles per day the previous 3-4 days in Paris!) along with sleep deprivation and stress from all the shlepping, etc created a 'Perfect Storm' for the cancer to take advantage of and regain strength. Our MO immediately switched his steroid from prednisone to dexamethasone, to get more time from the Zytiga, and stopped the Lynpaza to prepare for Xofigo which he started in early Sept.
The first 2 Xofigo injections were helping, per blood test results. The 3rd was questionable, and then 2 weeks after the 4th Xofigo injection in early December he ended up in the ER for severe anemia - hemoglobin at 6.1, platelets at 53, etc. The 3 units of RBCs they gave him (which brought his hemoglobin up to only 8.4) were 'eaten' (the word I use) by either the cancer and/or Xofigo, his hemoglobin was back down to 6.8 three weeks later, so they gave another 2 units of RBCs. That transfusion didn't get his marrow working again as 2 weeks later his hemoglobin was only at 7.7, platelets at 44 (reached a lowest point ever at 38 ten days earlier!) . A 3rd transfusion was scheduled, while at the same time our MO told my husband there was nothing more he could do as he was 95% sure his bone marrow had crashed because of the cancer (bone marrow invasion) not the Xofigo. So last week, 5 days after that, we came in for the 3rd transfusion. They ran another blood test, and guess what - this time his blood count numbers appeared to have stabilized - hemoglobin was about the same, at 7.6, and RBCs and WBCs were actually up!! WBCs were now in low end of normal range at 3.6 (first time in 4 months his RBCs were within normal range!) RBC at 2.52 (from 2.51), platelets at 44 (from 43). Abs neutrophils were at 2.6, highestsince the ER visit! (someone here mentioned abs neutrophils are important requirement for some clinical trials)
fwiw, last weeks blood test done almost 7 weeks after his last Xofigo injection (we read it can take 6 - 8 weeks for bone marrow to recover). Our MO now says *if* my husband's bone marrow can recover well enough, he may consider a different chemo (think he said Mitoxantrone?) or possibly immunotherapy. So now we are hoping and praying his next blood tests, next week, will show a trend of improving numbers. We were NOT expecting this to happen so soon - VERY scary times right now!
Hello,
I am so sorry to hear what you and your husband are going through. The last time Craig had a transfusion was in November the day after his AUS repair operation. He just got his hemoglobin tested 2 days ago and it was 13.5. The only thing we can attribute it to is he now takes iron pills every day. We haven’t gotten the psa results yet. He is on zometa for bones. It seems to be working because he doesn’t seem to have much pain. Has your husband had any compression fractures. They are the worst for pain!
Last Fall he started getting Lupron injections again and so far they are bringing his PSA down again. He is also still taking Lymparza. I will pray and hope along with you that the numbers will improve and the 2 units of RBC will give him the boost he needs. Please let me know how things are going.
Susan
My apology for this delayed reply. Thank you for your kind words. No compression fractures. He did have RT to his lower spine a little over 2 years ago, which helped a lot. From what I've read, I suspect the extensive bone mets contributed to bone marrow failure while getting the Xofigo. We were told he may require transfusions to get through all 6 injections/treatments, (heard #4 is when it starts to get tough) but never ever expected bone marrow failure!
My husband is still getting blood tests and transfusions when needed. His numbers may be very slightly improving, so there's still hope. I worry because the clock is ticking, while he's not on any systemic treatment since going off Zytiga and Lynparza except for the Lupron shots every 3 months, Xgeva shots every month or so, and dexamethasone (which he was taking with the Zytiga instead of prednisone) I read dexamethasone can be used as a monotherapy.
I found a couple drugs in clinical trial that sound like they might be the Hail Mary my husband needs now, so I asked our MO about helping him get in, or applying for "compassionate use", etc...and, no surprise, it appears he's not willing to help! Far too many oncologists will only use SOC treatment, and the clinical trials at their own hospital, and stop there. It's VERY discouraging. Those who WILL go outside the box are apparently hard to find. I suspect this has to do with hospital protocol...liability issues...etc?? There are several on this board who have been successfully self treating, after their MO said the same - can no longer help after exhausting SOC treatments.
Did your husband start Xofigo? Will he be on Lynparza along with the Xofigo? Our MO did mention that can sometimes work well together, esp if your husband's blood counts are strong at the start. I hope this works well for him!!
2010 gleason 8 psa 7 start with Lupron ,proton,then casadex and now stage 4 (9/18) with 3 bone mets psa was 4, 10/18 started Zytiga plus pred,avodart,flomax,6mth alligard. no pain psa at 2.40 test 8 golfing fishing yard work but sometimes I run out of gas and need a little afternoon nap. I enjoy this forum very much Thanks and hang in there. age 70 in August
I was diagnosed year and three months ago with 4 prostate cancer —-had spread to the bones and limp nodes – – had chemo- radiation -and Lupron – – my PSA shot down to 0.002 and it is still there
I got treatment for oligometastatic cancer
6.5 years. Stage lV right out of the barrel with bone Mets. Being treated with radiation to start then Lupron and Exgeva, now taking vacation from both. Trying to get some strength back, recommend by my oncologist.. will hit it again as P.S.A. Rises. One diagnosis from a large facility in our area was 1 to 3 years.. sure glad I stayed with my urologist, he gave me 10 years.
My husband is Stage 4 been fighting now almost 14 years.
2011 - Gleason 9 diagnosed - radical prostatectomy.
2013 - return, 36 days of radiation.
2017 - return, met to base of skull, Nupron 2018 - slight psa elevation, ten days of radiation to skull (because of the lesion’s proximity to spine, nerves, and brain).
2019, June - still low psa and Nupron.
No symptoms throughout.
Originally diagnosed as very widespread metastatic Stage IV, in great lower back pain, and with a PSA of 5,006 some 5 1/2 years ago. Pain melted away within first month on ADT. Subsequent treatments details are in my Profile. Latest PSA was 3.2. Still riding a Lupron/Xtandi horse. Lucky and grateful to be here.
Charles
Hi, you are a great inspiration! diagnosed first week of April with Stage 4 Mets in the spine, and had first chemo 13 days ago. Yesterday & today are the first days I felt really good. So glad to hear you were treated a COH and 10 years have passed. God bless you!
Stage 4 at Dx in June, 2015. Almost at my 4th anniversary. Still doing well. Blessed 🙏 to have those 4 years, and looking forward to many more. Kudos 👍 to all of you who are long term survivors!
Seems like forever.............
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 06/02/2019 5:38 PM DST
I had PCa for eleven years, and I no longer have cancer.
Gleason 9, Bone Mets, Intermittant Hormone Therapy, Most years with normal Testosterone, on year 10.
Hi MazdaGuy!
So all you really had was ADT and nothing else?
Alan
Alan,
I had surgery in 2009 followed by radiation. PSA was undetectable for a year or so and then went up slightly. In 2011 bone mets to pelvic bones. Went on ADT3 for a year and spot radiated those spots. PSA went to undetectable and I got about 3 years of undetectable (or close to it) and normal Testosterone. Then after PSA rising a bit, spot found on my rib (confirmed by biopsy). Spot radiated and went on HT again. Got about 3 year break with that as well, but now PSA is rising again and some of the same spots have increased uptake on some of the spots I radiated (on PET...not CT). So, I’m gearing up for the next round of something. But it’s been about 10 years and I have been on HT for a total of about 3 years so far.
Thank You so much, Mazdaman
2 years, chemo and hormone therapy, lupron so far, .6 but jumped to 1.8 the last blood work but due for scans in 2 weeks and blood work at end of month. I think it will go down as I added a herb to the diet that caould have affected the readings
My husband was dx January 2017, Gleason 8, Mets to spine, pelvis and femor. Started casodex and lupron immediately, PSA dropped from 64 to 3.2 within 2 weeks, but then increased to 4.3. Started 6 cycles of docetaxel, PSA undetectable after round 4. Seems he responded exceptionally well to chemo. Following chemo he elected to take part in a trial for RP or radiation after standard care. Had RP in October 2017. No cancer evident in removed prostate or 40 odd lymph nodes removed. Last scans in April this year showed NED, PSA still 0 and CTC 0 (from 4 at dx). We are so grateful that we happen to be expats from the U.K. living in Houston and are able to see the wonderful Dr E and Dr Chaplin at MD Anderson. Still living with Lupron and this causes its own problems, but much better than the alternative. We are positive that he will be around for many, many years to come.
Fred,
Congrats. to you all and keep going.
My husband is going on 9 years 4+3 = 7. Don't recall if he was ever staged other then his G-store but was told it was aggressive at time of RP.
He is doing well still working at age 61.
Wondered how many men have had surgery or still have their prostates?
Perhaps I should start another thread for that question?
BOOGEE
I have been Stage 4 since 2011. I had 30 radiations and Lupron for 6 1/2 years. I no longer have cancer.
30 radiations????? Do you glow in the dark???
I've had 3 sessions of 5 days each, they tell me to stay away from pregnant women and satellites 
Glad you're doing well.
Actually I have had 72 radiations for PCa.
Stage IV this is my 20th anniversary
Diagnosed March 2017. Stage 4, Gleason 9, 59.9 psa. Extensive bone mets and abdominal lymph node mets. Given one and a half to two and a half years. So I guess I will drop dead in 3 months.
I don't think they really know how long you will live, plus new medications are being developed all the time. And from month to month they don't know if the cancer will slow or speed up. Plus you never know when your own immune system might flip a switch and fight the cancer.
Stage 4, given 6 months, 2.2 years so far (take that, stupid doctor!), G7 (4+3) Regular Adenocarcinoma, doing well currently with latest PSA of 0.52, no bone mets (just lymph nodes), had RP and light version of Docetaxel early chemo, still on Zytiga and Lupron after almost 13 months and with a decent amount of treatment options left in the pocket when and if Zytiga will fail (Replacing Prednisone with Dexamethasone, Xtandi, Provenge, Radiotherapy, Xofigo, Lu177, Cabazitaxel, BAT, rechallenges of second line hormonals after chemo, targeted therapies and clinical trials...).
Aiming for at least 5y overall survival, sounds like a realistic goal at this point. Hopefully something new will popup at that time that extends survival even more.
Stage 4, 1-1/2 years
Dx 7/2013, Stage 4, Gleason 9, metasticized to lumbar spine. Been radiated in 3/2015,T13 thru L5. Put on Zytiga in 4/2017 when Lupron alone quit working and PSA shot up, and my kidneys were starting to fail. Went for a second opinion in 6/2017. They said get off Zytiga, start Xtandi, have urethral stents, catheter and nephrostomy tubes placed, and get bladder tumor radiated. Went back to my cancer doc and they followed these recommendations. PSA went down, tumor shrunk and kidneys working well so got rid of catheter and stents. Had Xofigo (nuclear injections) 9/2018 thru 2/2019. PSA now starting to rise. My urologist says only 2 SoC treatments left, Provenge and chemo. Last bone and CT looks good except for new mets to T6. Considering genetic testing. Need info on chemo, Provenge and genetic testing. Have any experience with any of these? Any info will help. Thanks!
23 years 8 years Mestatic stage 4 localized advanced
23 years Mestatic last 8 have tried everything stage 4 localized advanced
4 years: first docetaxel +ADT, last july SBRT. Under control by now.
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